A Hummingbirds' Guide to M.E.

Information on the neurological disease Myalgic Encephalomyelitis

Treating M.E. - The Basics

Treating M.E. - The Basics is a guide to some of the basics you need to know to live with, cope with and to treat M.E.

A 4-page summary of this text is also available: Treating M.E.- The Basics (Summary)

There is far too much information here to take in in one sitting (especially if you are ill with M.E.), and so it is highly recommended that you save or print the full-length version of this paper so that you can take everything in more slowly and over a longer period of time.

See the Downloads section below to download this paper in Word or PDF format.

Treating M.E.- The Basics

(Or: ‘Help, I have M.E.- what on earth do I do now? Help!!!’)
Copyright © by Jodi Bassett, March 2006 on www.ahummingbirdsguide.com
This version updated March 2009

Myalgic Encephalomyelitis (M.E.) can be so overwhelming in so many different ways that it can be very hard to know how to even begin dealing with it. It can so quickly negatively affect almost every aspect of your life and become completely overwhelming physically and mentally. Some ideas for where to start include to:

  • Make sure you have been correctly diagnosed,
  • Avoid overexertion,
  • Work towards learning to accept your illness,
  • Educate yourself (and those around you) about M.E. and seek appropriate support,
  • Try to find a useful and knowledgeable doctor,
  • Modify your diet,
  • Modify your environment,
  • Look into useful treatments for M.E.,
  • Learn how to avoid inappropriate or harmful treatments and scams,
  • Learn to avoid and minimise stress,
  • Learn strategies to help with the cognitive symptoms of M.E., and
  • Consider becoming involved in M.E. activism and advocacy.

 

1…Make sure you have been correctly diagnosed

The fact that a person qualifies for a diagnosis of Oxford Chronic Fatigue Syndrome (CFS), Fukuda (CDC) CFS, or either of the Australian CFS definitions (a) does not mean that the person has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the person has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on these or any of the other CFS definitions – can only ever be a misdiagnosis.

The reason for this is that despite the fact that the new name and definition of CFS were created in a response to an outbreak of what was unmistakably M.E., this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process which did not, and could not exist. As M.E. expert of more than twenty years Dr Byron Hyde MD explains:

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.

Today there are more than nine different CFS definitions. Just like the original Fukuda definition of CFS produced in 1988 however, none of these definitions defines any distinct illness. All they do ‘define’ is a heterogeneous population of sufferers from psychiatric and miscellaneous non psychiatric states which have little in common but the symptom of ‘ fatigue’ (a symptom not associated with M.E. at all until the CDC become involved in 1988.) Thus whether or not you fit the Fukuda definition of CFS is entirely irrelevant in determining whether or not a person has M.E. (or any other illness). Fitting any of these ‘CFS’ criteria is meaningless and should never be accepted as an end point of the process of diagnosis.

The list of illness and conditions which are often misdiagnosed as ‘CFS’ is long and includes: depression, PTSD (and various other organic and non-organic mental illnesses), adrenal deficiency, various post-viral fatigue syndromes and other fatigue syndromes, systemic yeast infections (Candida), vitamin deficiencies, burnout or emotional exhaustion, chronic Epstein-Barr, post-glandular fever (or mononucleosis) fatigue syndromes, Fibromyalgia, athletes over-training syndrome, multiple sclerosis, Lupus, Lyme disease or Borrelia burgdorferi, multiple chemical sensitivity syndrome, gulf war illness and cancer. Many with M.E. will also be MISdiagnosed with Fukuda CFS – merely by default; the severe and disabling metabolic, neurological and cardiovascular abnormalities central to M.E. unfortunately mistaken for simple ‘fatigue.’ (See The Misdiagnosis of CFS for a more complete list.)

Patients ’diagnosed’ with Fukuda CFS (or any other CFS definition) may have any one of these different illnesses and it is vitally important that each of these patients find out what their true diagnosis is so that they may finally receive appropriate treatment and support. (The good news for the misdiagnosed is that some of these illnesses are very treatable, far more so than M.E. – but only once they have been correctly diagnosed.)

The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and ‘CFS’ and ‘chronic fatigue’ are very different and distinct, and it is the definitions of each of these terms that is of primary importance:

  • People with chronic fatigue may be tired because of cancer, Multiple Sclerosis, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.
  • Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
  • Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
    M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.’ Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

  • A correct M.E. diagnosis can only be determined by looking at legitimate descriptions and definitions of the illness such as the descriptions of the late Dr Melvin Ramsay; a doctor with over 30 years experience with M.E., plus the excellent descriptions created by the brilliant Dr Dowsett, Dr Richardson and most especially Dr Byron Hyde the world’s leading M.E. expert, including Dr Hyde’s new Nightingale Definition of M.E. A specific series of objective scientific tests can also help confirm the diagnosis, and should be fully utilized if at all possible.

Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible; a correct diagnosis is half the battle won.

 

2…Avoid overexertion

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.

M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or many months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.

Upon becoming ill with M.E. patients can achieve only 50% (or less) of their pre-illness activity levels. It is vital that patients stay strictly within these limits, in order to prevent further bodily damage. The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis at this point (aside from dumb luck) is undoubtedly appropriate rest and the avoidance of overexertion in the early and/or severe stages of the illness. If you have M.E. you must give yourself the best possible chance for recovery and REST appropriately. The importance of this cannot be overestimated. It is vital that M.E. patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits particularly in the early and acute stages of the illness, but also at any stage of the illness. There is nothing to be gained by people with M.E. pushing themselves beyond their individual physical limits as this can only result in unnecessary relapses and increased (or extreme) pain and suffering and so be counterproductive. Permanent damage (eg. to the heart) and disease progression may also be caused and there have also been reports of sudden deaths in M.E. patients following exercise (or after a long period of sustained overexertion).

Exercise or exertion intolerance is one of the many characteristics that separates M.E. so distinctly from a variety of ‘post-viral fatigue states’ or other primarily ‘fatiguing’ illnesses. M.E. should never be diagnosed without this feature being present. In addition to physical activity, relapse and symptom exacerbation in M.E. are also caused by cognitive exertion, sensory input and orthostatic stress, beyond the patient’s individual post-M.E. limits.

Note that ‘fatigue’ and feeling ‘tired all the time’ are not at all the same thing as the very specific type of paralytic muscle weakness or muscle fatigue which is characteristic of M.E. (and is caused by mitochondrial dysfunction) and which affects every organ and cell in the body; including the brain and the heart. This causes – or significantly contributes to – such problems in M.E. as; cardiac insufficiency (a type of heart failure), orthostatic intolerance (inability to maintain an upright posture), blackouts, reduced circulating blood volume (and pooling of the blood in the extremities), seizures (and other neurological phenomena), memory loss, problems chewing/swallowing, episodes of partial or total paralysis, muscle spasms/twitching, extreme pain, problems with digestion, vision disturbances, breathing difficulties, and so on. These problems are exacerbated by even trivial levels of physical and cognitive activity, sensory input and orthostatic stress beyond a patient’s individual limits. People with M.E. are made very ill and disabled by this problem with their cells; it affects virtually every bodily system and has also lead to death in some cases. Many patients are housebound and bedbound and often are so ill that they feel they are about to die. People with genuine Myalgic Encephalomyelitis would give anything to instead only be severely ‘fatigued’ or tired all the time.

Fatigue or post-exertional fatigue (or malaise) may occur in many different illnesses such as various post-viral fatigue states or syndromes, Fibromyalgia, Lyme disease, and many others – but what is happening with M.E. patients is an entirely different (and unique) problem of a much greater magnitude.

Several studies supposedly show that graded exercise therapy (GET) is a useful treatment for ‘CFS’ but the reality is that such studies have selected patients solely on the presence of ‘chronic fatigue.’ Thus these studies are only relevant to chronic fatigue patients and not to those with M.E. (Those conducting the studies have also been found to have vested financial interests in the outcomes, unsurprisingly.) Some of the patients with primary fatigue or with a variety of different illnesses misdiagnosed as CFS may improve with exercise (or CBT; cognitive behavioural therapy) but this is irrelevant in determining appropriate treatments for M.E. patients as these patient groups are entirely unrelated. If a patient improves with exercise, that patient simply does not have M.E.

As M.E. expert Dr Melvin Ramsay M.D. summarises: ‘The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.’ Patients must determine for themselves a level of activity that is not needlessly restrictive, but which stops unnecessary relapses and disease progression – and which also leaves the body with enough resources to try to heal and to restore a higher level of health and ability.

  • See Treating M.E.: Avoiding Overexertion, The effects of CBT and GET on patients with Myalgic Encephalomyelitis and The Ultra-comprehensive M.E. Symptom List for more information on the importance of avoiding overexertion.
  • The CBT and GET database is a comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis. It contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial/political motivations) underlying the 'behavioural' paradigm of M.E. and the use of these inappropriate and extremely harmful or fatal interventions.
  • Note that I have never heard of anyone with M.E. who is too restrictive with their activity levels, the problem is always the opposite, if anything. It is human nature to want to do things and to want to live and experience life as much as possible. For most if not all of us it is much harder to rest adequately than it is to keep pushing yourself to do things, unfortunately.

 

3…Work towards learning to accept your illness

Starting to accept that you have a serious illness is a difficult but important process that can take anywhere from months to years. Accepting illness does not mean happily resigning yourself to your fate and to being severely ill for the rest of your life, but is about acknowledging the realty of your illness; acknowledging that it isn’t something that is going to just conveniently disappear if you ignore it for long enough or think positively enough and/or that there is no quick fix or ‘miracle cure’ available and that it is something you will have to deal with and adjust to – at least for now.

As discussed in the previous section, continually denying or ignoring your illness and pushing through the symptoms and limitations (until you completely collapse) can only be counterproductive, or even dangerous. Acceptance of the limitations of the illness at as early a stage as possible is crucial to long-term outcome and will also save you many unnecessary and potentially very severe (or even semi-permanent or permanent) relapses and a lot of pain and suffering in the short and the long term.

 

4…Educate yourself (and those around you) about M.E. and seek appropriate support

Along with coping with the physical effects of the illness it is also important that you educate yourself about the illness as much as you are able and seek appropriate physical, financial and emotional support. You’ll need to do thing such as:

  • Educate yourself as much as you can medically and politically about M.E. This will help you in many ways; it will help you avoid inappropriate and bogus treatments, make you more knowledgeable about legitimate treatments and make you better able to defend yourself if you are faced with ignorant claims about the illness – and so much more. Knowledge is power! This self education is invaluable for every M.E. sufferer.
  • Educate those around you so that they will know better than to believe the baseless propaganda surrounding the illness and be more likely to give you the physical and emotional support you need (and perhaps be willing to stand up for you and your rights, if the occasion ever demands it).
  • Find out what financial support is available and what the requirements are to qualify for it if you are severely affected enough to need to do so (as most if not all M.E. sufferers will be) and make your application. (None of us ever thought we would be forced to have to rely on welfare, but M.E. gives most of us no choice in this and so there is no shame in doing what you must do to live.) Delaying this unduly may lead to serious financial vulnerability as claims may not go through as quickly as we need them to, and so the sooner you apply the better.
  • Find out about other services in your area that might be appropriate or that you might need; meals on wheels, house-cleaning services for the disabled, housebound library services, or which local shops will home deliver, and so on. If an advocate service is available near you (and you are severely affected enough to need one) this would also be well worth looking into (an advocate is someone who will advocate on your behalf to make sure that you receive adequate medical and other care).
  • It is also important that you do your best to support yourself emotionally. For your own emotional wellbeing, it is important to stop accepting the blame for getting ill in the first place (or for remaining ill) if ignorant friends, family or doctors have been filling your head with this sort of bunkum (or trying to). It is just nonsense. Nobody causes themselves to get M.E. through anything that they did such as; overwork, ‘stress,’ a perfectionist (or type ’A’) personality, not ‘eating right’ or childhood abuse or trauma or anything else. M.E. is not a form of burnout and even with the most positive attitude in the world you CANNOT will yourself well from M.E. It just doesn’t work like that unfortunately. (If it did almost none of us would still be ill.) Try hard not to let stupid and ignorant comments get to you, you have more than enough to cope with just dealing with the REALITIES of M.E. let alone having to deal with things people have just made up about the illness or things they say to you purely out of ignorance.
  • One of the best ways to maintain your emotional health is to join a M.E. support group either online or one which meets in person. It helps so much to know that there are so many people who are going through the same thing as you are and that you aren’t alone. You might have to hunt around a bit to find a group that you really like and that suits you but when you do it will likely be well worth it. (Finding groups which match your own severity level is particularly important.) Hopefully you will make yourself some new friends who will help you cope with every stage of your illness, and who you will support in turn (which can also be rewarding at times).
  • If you have tried your hardest to educate particular friends or family members about the truth about the illness but they continue to make nasty or belittling comments or to blame you for your illness (or even to withhold physical or other types of support that you need), you may have to disassociate yourself from them for the time being (if this is possible). It is important to always remember that these sorts of nasty and thoughtless comments say much more about them than about you; happy and well-adjusted people do not repeatedly heap abuse or scorn on people who happen to become very physically ill through no fault of their own. There really are no excuses for this, nobody deserves such poor treatment but especially not someone already dealing with something as horrific as M.E. If you can possibly avoid such people, you should avoid such people – for as long as they continue to act this way.

 

 

5…Try to find a knowledgeable doctor

Of course this is absolutely vital, and very much easier said than done. Perhaps the best way to find a reputable doctor who is knowledgeable about the illness (aside from just trying your luck with as many different doctors as you can find) is to ask fellow sufferers in your area who they would recommend. Some M.E. charities may also be able to help with recommendations (although the quality of the doctors recommended here of course may be far more variable, or even abysmal).

A knowledgeable doctor will make sure you have been correctly diagnosed, monitor your condition for any treatable and/or other concerning abnormalities, provide symptomatic (and other) treatments, monitor new symptoms to ensure you have not developed a secondary illness and much more.

It is also very important that you are able to have some of the tests which can be used to confirm a M.E. diagnosis, to remove all doubt that this truly is the only correct diagnosis for you. If you doctor has been misinformed about M.E. or does not understand the world of difference between genuine M.E. and ‘CFS’ and is unwilling to do expensive tests such as MRI or SPECT brain scans, perhaps you could try to start with some of the cheaper tests and work up. A good place to start are the simplest tests which are also the most commonly abnormal in M.E. such as the Romberg test, the tilt table test or sitting and standing blood pressure and pulse tests, or blood tests of the immune system such as natural killer cells percentage and function. Roughly 95% or more (up to 100%) M.E. patients will show abnormalities on each of these tests. (See: Testing for M.E. for more information.)

If your doctor is not as knowledgeable about M.E. as he or she could be (but is the best you can find) you may also like to bring in printed research or papers on M.E. that you think might be useful. It may also be helpful to write a detailed medical history before your first visit, and indeed to make written notes about what you would like to discuss before every consult as an aid to (or a replacement for) memory.
  • See Verillo and Gellman's Treatment Guide for further information (details of this book are given below).
  • If you are desperate for a doctor recommendation and have no other options, you might like to check out Co-cure’s good doctor list. (Note that this list says it recommends good doctors for ‘ME/CFS’ and ‘FM’ patients and so many of these doctors – or none of them – may actually be knowledgeable about genuine M.E. but if you have run out of other options, you might want to try this list.) See also: Hospital or carer notes for M.E. 
  • Objective scientific tests are available which can aid in the diagnosis of M.E. (and easily prove the severe abnormalities seen in M.E.), but unfortunately many patients are not given access to these tests. For more information on the lack of access to appropriate testing for M.E. patients see: The Montague/Hooper Paper
  • You may also need glasses and a good optometrist post-M.E. as M.E. can seriously affect vision in many different ways (as explained in Dr Hyde’s M.E. textbook pages 702, 48-51 and 700-701).

 

6…Modify your diet

M.E. sufferers need to modify their diet post-illness. Some of the things to be aware of include:

Food allergies and intolerances: Food allergies and intolerances are extremely common in M.E. Both food allergies and food intolerances may also occur and can fluctuate with the severity of the illness. A rotation diet may be necessary for some sufferers (where particular foods are eaten only once in a 4 day period).

Food allergies are IgE mediated (and so may be tested for using standard tests) and include most commonly: eggs, corn, milk, soy, sugar, wheat, and yeast. IgG food allergies may now also be tested for. (York labs and VRP let you do this testing at home, although the tests are quite expensive; York labs far more so than VRP). Or you can try to identify them yourself using an elimination diet. i.e. Eating a very limited diet for 14 days or more and then slowly introducing suspect foods back in one at a time each 48 hours and monitoring yourself for any ill effects. Note that IgG allergies can often be delayed up to 3 days, while IgE allergies occur within an hour of ingesting the offending food.

Foods which may cause intolerances (and various other problems) include: stimulants (coffee, tea, caffeinated soft drinks, some herbal teas which contain ginseng, lomatium, mate and ma huang), sweeteners (sugar, dextrose, glucose, fructose, splenda, aspartame and saccharin), high levels of animal fats (may not be digested easily), additives (artificial colours, flavours, preservatives, MSG), foods from the nightshade family (potato, capsicum, eggplant and tomato), dairy products, gluten, fruit (may be difficult to digest and the high levels of fructose can trigger hypoglycaemia and other problems), gas producing foods (onions, cabbage, brussels sprouts, broccoli), spicy foods, raw foods (may be difficult to digest), fermented and mouldy foods and foods containing yeast or wheat, acid foods, nuts and soy.

Wheat, rye and barley contain the allergens gluten and gliadin. Oats only contain gluten.* If you can’t tolerate wheat, rye or barley you might be able to get away with eating oats (if you are only sensitive to gliadin and not gluten). Otherwise, you might want to try brown rice, millet and/or buckwheat. (*Note that gluten-free oats are now available. New research shows that actually oats don’t contain gluten naturally, but almost all oat products are contaminated with it during processing, in the form of wheat. What this means is that even if you are sensitive to gluten, you should be able to tolerate certified gluten free or wheat free steel cut oats! If you have a severe gluten problem however, you must check with your doctor first.)

Buy organic food as much as possible: All food should be organic wherever possible, or at least very well washed or peeled where appropriate. Organic unprocessed whole foods should make up most of your diet.

Make sure your diet is pH balanced: A rough guideline is to eat 75-80% alkaline foods and a maximum of 20-25% acid forming foods. For a list of which foods are in each category, click here. (You can buy urine or saliva test strips to test your acid balance at home. These strips are also available from VRP and iHerb.)

Avoid MSG and Aspartame (NutraSweet): Aspartame and MSG must be very strictly avoided by all M.E. patients as they can cause the disease to seriously worsen. They are excitotoxins and contribute to neurodegeneration. According to neurosurgeon Russell Blaylock M.D., author of ‘Excitotoxins, the Taste That Kills’ excess glutamate literally excites neurons to death—they run out of energy, degenerate, and die. The easiest way to avoid MSG and Aspartame, and all other excitotoxins, is to avoid all processed foods as most/almost all processed foods contain excitotoxins.

If you do eat processed food, make sure to avoid those containing hydrolysed vegetable protein, yeast extract or autolysed yeast, calcium caseinate, sodium caseinate, gelatin, hydrolysed oat flour, potassium glutamate, plant protein extract, carrageenan or vegetable gum, chicken, beef or pork smoke flavourings, soy sauce, (most but not all) whey protein and soy protein and anything ultra pasteurised, protein fortified or fermented as these are hidden sources of MSG or glutamate. Avoid especially commercial soups, sauces, and gravies, stocks, broths, and bouillons. (Although glutamate is a normal neurotransmitter in low doses, some experts argue that free glutamates in high doses over time can have the same affect as MSG.) Often these excitotoxins may simply be labelled as ‘natural’ flavourings. (This list is taken from the book The Brainpower Plan which also explains: ‘Researchers for food giants clamour on about glutamate not being able to reach an intact blood-brain barrier, but this is not true because glutamate has been shown to enter the brain where there is a chronic elevation of blood glutamine present.’) Again, all significantly processed foods should be avoided by persons with M.E. if possible.

So what can and should you eat? Many sufferers will do better on a moderate protein and moderate carbohydrate diet and by eating small meals every 2-4 hours. High carbohydrate diets and low salt, low fat or very low calorie diets are not appropriate for M.E. sufferers, generally speaking. Try to have some protein, fat and carbohydrate with each small meal or snack in order to make you feel full and to prevent high insulin levels (which causes many serious problems as well as promoting weight gain).

That old line that ‘a calorie is a calorie is a calorie’ is actually not true. A group of people on diets with the same lowered calorie content but with different amounts of protein, carbohydrate and fat will lose very different amounts of weight, or weight can even be gained when a diet is very high in carbohydrate. As the book Mastering the Zone explains, ‘A calorie of fat has a different hormonal effect than a calorie of protein, which has a still different hormonal effect than a calorie of carbohydrate.’

If you’re at a loss as to how to start, you could go to a website like www.nutritiondata.com and try to put together a diet where your calories are made up of 40% protein, 30% (healthy) fats, and 30% (low Glycaemic index/ load) carbohydrates. (You may also find the www.whfoods.com website useful for evaluating your diet.) See how you feel after a few weeks on such a diet and then make any changes that you think will suit you better. (You may want to modify the percentages slightly so the diet suits your body better.)

If you want a more detailed quick start guide, you might also like to check out ‘The Zone’ website which offers a lot of sample meal plans and recipes for free – all based on whole foods, reducing inflammation through diet and the 40% protein, 30% fat and carbohydrate caloric ratio. (There is no need to buy any books!) Remember to make any dietary changed gradually to minimise any problems you might have.

It is important that M.E. patients have as nutrient dense and antioxidant rich a diet as possible. Try to include:

  • Seeds and nuts, raw and UNROASTED (especially sesame seeds, flaxseeds, almonds, cashews, walnuts, pistachios and macadamias).
  • Seven or more serves of vegetables (especially broccoli, broccoli or alfalfa spouts, broccolini/tenderstem, cabbage, cauliflower, green beans, brussel spouts, garlic, spinach, snow peas, lettuce, cucumber, tomatoes , zucchini, avocado, radishes, turnips and carrots) lightly cooked to preserve more enzymes and vitamins. Broccoli, broccoli or alfalfa spouts, broccolini/tenderstem, cabbage, cauliflower and brussel spouts are important because they help support phase II detoxification. ‘Baby’ varieties of vegetables are especially good too if you can get them. Avoid microwaving vegetables if at all possible and instead steam, grill or quickly stir fry. There can also be additional benefits in consuming some of your vegetables raw.
  • Two or three serves of fruit, if you can tolerate it (especially berries, cherries, melons, peaches, apricots, oranges, pineapple, apples and plums). Try to eat a lot of different colours of fruit and vegetables.
  • Quality protein sources (cooked through, but not excessively browned or blackened if possible as this creates problems with oxidation) such as organic lean chicken, turkey or pork and more occasional lean red meat and eggs, plus some fresh or tinned fish such as salmon (with the exception of tuna which should be limited to once a week or less due to its mercury content). Raw fish (sushi) is also good so long as you can get fresh uncontaminated fish. You can also use good quality protein powder as a protein source, or legumes, soy, nuts or dairy products from goats’ milk.
  • A serve of soy daily or a few times a week (if you aren’t allergic. High doses of soy can be problematic due to the phytoestrogen content however and aren’t recommended).
  • A small serve or two of unprocessed (or minimally processed) whole grains such as steel cut oats, millet, brown or wild rice or buckwheat
  • A serve of beans, lentils or chickpeas, if you can tolerate them (this can also be a good source of protein)
  • Extra virgin olive oil or coconut oil for cooking or on salads. Don’t aim for a fat free diet if you have M.E.; eating good fats is enormously important in M.E. Avoid trans fats, large amounts of animal fats and most vegetable oils, but do add some fat to your diet in the form of olive oil, olives, coconut oil, avocados and nuts.

If that is too much to take in, a sample diet might look something like this:

  • Breakfast: Cooked organic steel cut oats sprinkled with seeds and banana slices, or scrambled eggs with tomato, avocado and onion, or a protein shake* blended with seeds and berries (or other fruit).
  • Lunch: Lightly grilled chicken breast cooked in coconut oil coated in spices with spinach and pine nuts and some steamed cabbage, or a lentil and split pea curry (Dal) with a cucumber salad.
  • Dinner: A fish/tofu or lean beef stir fry with ginger, garlic, onions, snow peas, broccoli, bean sprouts and carrot, sprinkled with broccoli sprouts to serve and served with a few tablespoons of brown rice or a serve of fruit for dessert.
  • Snacks (two or more daily): A tin of salmon with a handful of seeds and a serve of fruit, a protein shake* with some nuts and fruit, chickpea dip (hummus) with vegetable crudités, buckwheat or millet porridge with seeds, a protein shake* with a piece of 85% cocoa dark chocolate (or a handful of raw cocoa nibs) or homemade avocado dip (guacamole) with vegetable crudités.

The diet described here is also an anti-inflammation diet. Note that the most inflammation promoting foods are animal fats from red meat and egg yolks, and vegetable oils such as corn oil and the oils used in margarines (which are high in Omega 6 fatty acids and polyunsaturated, and cause an inflammatory response in the brain). (The second step in reducing inflammation, and equally as important as diet, is taking ultra-purified fish oil daily. See the treatment section below for details.) For more information about the importance of reducing inflammation through diet see the ‘The Zone’ website or the book The Anti-Inflammation Zone.

Other nasties to avoid: Dairy products made with cows’ milk should also be avoided by M.E. patients. Dairy products from goats’ milk are far better tolerated than products made from cows’ milk; go dairy free for 3 months, then slowly add back goat products and monitor yourself for symptoms.

Avoid GMO (genetically modified) foods as much as possible. Many processed food products contain GMO foods. Fresh fruit and vegetables are usually safe, but watch out for seedless grapes and seedless watermelon.

There is also information which suggests that M.E. patients should avoid gluten even if we can’t detect a reaction to it, which means avoiding wheat, rye and barley.

Alcohol and cigarettes may also be poorly tolerated and should be avoided. (Cigarettes, like many paints, contain cadmium which is quite toxic). Alcohol intolerance in particular is very common in M.E.; alcohol should be avoided as this can worsen the illness significantly.

Avoid products which are modified to be very low fat or fat free as they will often be full of either enormous amounts of sugar or chemical additives or both and will often have the same calorie content anyway, or leave you feeling so unsatisfied due to the lack of fat that you need to eat twice as much!

Sugar is an anti-nutrient and has many serious negative effects and so must be avoided as much as possible. If you are eating a lot of sugar, reduce your levels slowly to minimise withdrawal symptoms (and be prepared to be in a terrible mood for a while!). Eliminate (or at least significantly reduce) high Glycaemic index/load and high sugar foods such as large amounts of rice, milk and milk drinks, fruit yogurt or flavoured yogurt and ice cream, commercial breakfast cereals (all of them), corn and potatoes (and go easy on bananas and mangoes and dried fruit such as raisins), all fruit and vegetable juices, sugary sauces, pasta and soft drinks (soda) and anything else containing high levels of sugar, preservatives and other problematic chemicals, trans fats, hydrogenated oils or that is heavily processed or that is ‘fast food.’ If you need a sweetener use either fruit or the herb Stevia (or perhaps small amounts of Xylitol occasionally, if you can tolerate it).

Drink enough water: Drinking around two litres of water daily is also important. Dr Cheney says while it is common for M.E. to cause excessive thirst (in a bid by the body to increase blood volume and improve cardiac insufficiency) that water intake should not exceed two litres unless there is a lot of sweating. Some of us may need an extra glass of water daily on top of this amount, and feel very unwell without this extra intake, but be very careful adding much more than that. (You CAN drink too much water, and this can be dangerous or even fatal; it is up to you to carefully work out how much water you need to function optimally. As a general rule, if your urine is clear you have had far too much water, and if it is deep yellow, orange or brown you need more water. Urine should be straw coloured/pale yellow. If your lips are dry/painful, it might mean you need more water).

 

There is no single diet that will be suitable for every person with M.E. unfortunately. The best diet is one that makes you feel as well as possible, is as practical, nutritious and healthy as possible and that lets you maintain your most healthy weight. Diet is so important in M.E. It has such a strong effect on the immune system, our hormones, our gut health and our level of neurological and cognitive problems and our ability to detoxify and so on. The right diet can increase or reduce cancer risk. Treating the gut problems of M.E. is also one of the first steps in treating M.E. itself and cannot be ignored. The health of the gut affects our neurological health to a significant degree. Diet can also increase or reduce inflammation and have positive or negative effects on all sorts of different hormones and neurotransmitters. Food affects the body in the same powerful ways as do prescription drugs, and so must be considered with the same amount of respect.

Food is not merely fuel, it is MEDICINE.

  • Note that none of these dietary changes will cure M.E. (and anyone who claims they do is not talking about legitimate M.E. patients!) but they may significantly reduce some symptoms (and aid healing) and so very much affect quality of life and even the course of the disease to some extent. You may be surprised how much better you feel with the right dietary changes (even if your disability levels changes little). See Verillo and Gellman's Treatment Guide and The Clinical and Scientific Basis of M.E. by Byron Hyde M.D. for further information.
  • In addition to avoiding chemicals which cause reactions, cigarettes and alcohol should also be avoided (alcohol may even cause disease progression in Mitochondrial diseases such as M.E.), as should becoming too cold or too hot. Note that in imperial measurement 1 litre = 0.22 gallons.
  • What is ‘processed food’ exactly? Almost all food in the supermarket is processed in some way, but when experts talk about avoiding processed food, what is being referred to is probably better described as heavily processed food.
         For example, packets of raw shelled nuts and seeds, packets of dried fruit, plain tins of beans and fruit and vegetables, packages of frozen fruit and vegetables and so on are of course processed foods, but they are only very minimally processed. They have been ‘messed with’ only in very minor ways, and are not much changed from their original state. These types of products contain only ‘real’ ingredients and no extra additives or cheap fillers (although it pays to check the labels for hidden dangers in some brands/products).
             Heavily processed foods would include things like cakes and biscuits, chewing gum and chocolate bars, sauces and gravies, instant noodles, potato chips and ice cream. Many other products will be somewhere in-between these two extremes and you’ll have to use your own judgement about whether or not they are healthy choices for you. You may find that it depends a lot on the brand and type of product, and that you need to read all labels carefully.
  • The amount of nutrients and vitamins in plants starts being reduced as soon as it is picked, and the longer the time between when plants and picked and eaten the worse the loss is. If you or someone you live with enjoys gardening, consider starting a vegetable patch so you can eat food as soon as it is picked.
  • Note*: See below for additional sections on which protein shakes to choose, how to prepare easy meals and liquid meals, and how to lose weight safely with M.E.

 

7…Modify your environment

Chemical sensitivities are common in M.E. as are allergies or sensitivities to various airborne allergens. You may need to modify your environment or to change some of the types of products you buy to minimise your exposure to these things. Air and water filters may also be useful.

Chemical sensitivities may occur to indoor and outdoor chemical air contaminants; perfumes, hairspray (and a wide variety of other personal care products), gasoline, household cleaning products, plastic and glue out-gassing. This can produce allergic reactions, although not all chemical sensitivities are IgE mediated. There can also be a worsening of existing allergies and/or new severe sensitivities or allergies to airborne allergens such as: pollen, mould, animal dander, fur and feathers or dust. People with M.E. should particularly be careful to avoid the chlorine and fluoride in water, and personal care products containing sodium laureth sulphate (SLS), or sodium lauryl ether sulfate (SLES),.

People with M.E. should particularly be careful to avoid the chlorine and fluoride in water, and personal care products containing sodium laureth sulphate (SLS), or sodium lauryl ether sulfate (SLES) or perfumes or parabens. Every personal care product; every shampoo, deodorant, hair dye, moisturiser, cleanser and toothpaste we use is absorbed through the skin and so are all the products we use to clean our dishes and cutlery and to clean our clothes and sheets. You also take in harsh cleaning products etc. by inhaling the fumes. Even if there is no immediate effect on you, these products are best avoided by M.E. patients (and everyone else!) for a number of reasons, not least of which is that they are often carcinogenic. Instead buy some of the safer, more eco friendly ‘natural’ non-toxic alternatives which are now widely available, reasonably priced and just as effective as more traditional toxic products. They are often far better quality products and much nicer to use, and smell better too. (Or you could make some of your own cleaning products using vinegar and bi-carb soda and so on.) Products such as the Rainshower Dechlorination Crystal Bath Ball filter can be useful for reducing the chlorine in your bathwater.

You might want to purchase a machine that measures EMF (or ELF) radiation, so that you can be aware of and limit your exposure, as there is some evidence that high levels of this type of radiation can contribute to neurodegeneration in M.E. and also potentially increase cancer risk You can read more about EMF in this article on stopping neurodegeneration. As a general rule; keep at least an arms length away from major electrical appliances such as ovens and televisions and half an arms length away from smaller appliances such as alarm clocks and lights – for as much of the day as is possible. (The good news is that it is fairly easy to greatly reduce your exposure with just a few changes to how you arrange your appliances etc.)

You may also need to other changes to your environment such as: moving your bedroom to the ground level of your house so you don’t have to use the stairs (or moving to a house which does not have stairs or which has a stair-lift) or modifying your house (or bedroom) so it lets in less light or noise. You may also benefit from the use of; modified cutlery or other utensils, a cane, a wheelchair or a motorised scooter, a leg raising cushion to raise your legs when lying down to reduce the load on the heart, medical quality knee high or thigh high compression stockings to stop the blood pooling in the legs (and reduce the load on the heart), a shower chair, a computer set-up which lets you use the computer lying down, for example a laptop stand (if you have M.E. you must ALWAYS lie down to use the computer!), noise blocking headphones – and much more.

Using these tools or making these changes is not ‘giving in’ to being ill, these are things which will make your life better and will let you do MORE things than you otherwise might – which has to be a good thing!
  • See Verillo and Gellman's Treatment Guide for further information (details of this book is given below) and Practical hints for living with M.E. You may also like to browse through your local disability equipment store (or chemist) for items which may make your life easier or look at what is available through online shopping by doing an internet search.
  • Noise cancelling headphones are now much cheaper than they used to be.

 

8…Look into treatments for M.E.

Whilst there is no cure as yet, or treatments which can dramatically influence the natural course of the illness (due to the appalling lack of funding for legitimate research); intelligent nutritional, pharmaceutical and other interventions can make a significant difference to a patient's life. Appropriate biomedical diagnostic testing should also be done as a matter of course (and repeated regularly) to ensure that the aspects of the illness which are able to be treated can be diagnosed, treated and then monitored as appropriate. Testing is also important so that potentially dangerous abnormalities (which may place the patient at significant risk) are not overlooked.

M.E. is an illness known for its variability from each hour, day, week or month to the next. It is an illness where natural spontaneous remissions and relapsing of both the general severity of the illness and of particular symptoms are common. (‘Spontaneous’ means that these changes are natural, and not the result of treatment.) This means that when trying any new treatment it is important to:

  • Try only one new thing at a time
  • Take the treatment it until it works (set a reasonable time limit for this to occur and cease treatment past this point if you notice no benefit), then stop treatment for at least 6 – 8 weeks to see if the effect disappears, then start taking the medication again and monitor the effect. This may need to be done several times. You’ll be surprised just how often many medications you initially were sure were helping do not pass this test. If a treatment does pass, you know that you are definitely not wasting your precious money on it.
  • Never spend more than you can afford on treatments in the hopes that this will be ’the one’ or because amazing claims have been made about it by the people selling it or through testimonials by other sufferers. There is no ‘one’ for M.E. as yet unfortunately. Claims to the contrary are false.

As M.E. sufferers can be sensitive to a wide variety of medications, it is also important that you start with very small doses (1/10th of a normal dose or even less) of any drug when you first start taking it to minimise any negative reactions; this is particularly important with drugs which act on the central nervous system (CNS) as M.E. sufferers are particularly sensitive to the effects of such drugs.

Both pharmaceutical drugs and alternative or complementary therapies can be useful in treating M.E.; there is no need to take an either/or approach as the ideal treatment plan will encompass the best of both. It is important to be aware however that ‘natural’ treatments may cause adverse reactions or side effects every bit as severe as those caused by prescription drugs. ‘Natural’ does not necessarily mean safe – if there were no risk of negative effects there would be no chance of positive effects either.

If you are seeking treatment from a naturopath, acupuncturist, Chinese medicine practitioner or any other complementary practitioner however, it is important to ensure that they have a real understanding of what M.E. is before you begin treatment. Alternative therapists who perceive M.E. as a form of ‘chronic fatigue’ of a state of ‘low energy’ and treat you accordingly can cause significant harm (as the exercise or activity intolerance of M.E. is protective – and is of course NOT fatigue or tiredness – and artificially increasing activity levels with stimulants (or other means) can be extremely harmful and cause significant relapse in the short term, and may also have serious long-term consequences.). This ignorance of the facts of M.E. can also lead to vast overconfidence and overestimations by the practitioner in the effectiveness of treatments being recommended and the likelihood of recovery. This can give the patient false hope which when (inevitably) lost, can be very hard to deal with emotionally. Some practitioners may then compound this upset by then unfairly placing the entire blame for the lack of expected progress squarely on the patient. Find out as much as you can about the practitioners level of knowledge of M.E. before you let them treat you. It is also important to assess their overall credibility, competency and level of training; amongst the legitimate practitioners there are a lot of quacks out there who just want to take your money and will say anything they have to to make you give it to them.

Some of these concerns are also relevant to being treated by qualified traditional medical doctors and specialists; any person treating you for this illness must know what this illness actually is to be able to be useful in any way –and most importantly – to know how to avoid causing you harm. Remember too that your doctor should always be aware of every medication, vitamin or herb you are taking to monitor for adverse effects and to prevent dangerous reactions between certain medications. (In a perfect world your doctor will be quite knowledgeable about such treatments and will be the one prescribing them to you in the first place.)

(Note however that while various alternative practitioners may be useful in treating certain symptoms, they should not be relied upon for your initial diagnosis. These practitioners are not qualified to diagnose illness; they have not had the appropriate training and also do not have access to the necessary medical tests. Serious illness may be easily missed by such practitioners and misdiagnosis is also extremely common.)
  • See the ‘additional information’ section below for further information about different treatments for M.E.

 

9…Learn how to avoid inappropriate or harmful treatments and scams

Those proffering inappropriate, dangerous or fraudulent treatments or who make false or misleading claims about the efficiency of some treatments for M.E. generally fall into a few basic categories:

  • Outright scams set up by unscrupulous people who just want to make a quick buck off the sick and desperate
  • A group of psychiatrists and other doctors (and others) with vested political and financial interests (and their misguided followers) who claim that M.E. and ‘chronic fatigue’ are exactly the same thing and that both are merely ‘aberrant belief systems’ which will respond to treatments such as antidepressants, graded exercise therapy and cognitive behavioural therapy. The more than a thousand medical studies which completely and utterly disprove this ‘flat earth’ type theory are simply conveniently ignored and pretended not to exist by such vested interest groups. Every study which does supposedly support these theories and therapies has selected patients purely on the presence of fatigue and so these studies are studies on fatigued people and so irrelevant to M.E. patients (as ‘fatigued people’ are an entirely different and unrelated patient group.) No study has ever shown these treatments to be useful in treating M.E. patients and indeed there is an abundance of evidence which has shown that these therapies are useless or even extremely harmful or dangerous for M.E. sufferers.
  • Misguided sufferers of various fatiguing illnesses who have been misdiagnosed with ‘CFS’ but who, because they treated or cured their own illness now think they can help people who have M.E. (which is, unbeknownst to them, an entirely unrelated illness with an entirely different aetiology, response to treatment and prognosis)
  • Misguided doctors (or other medical practitioners) who have treated or cured people with a variety of illnesses misdiagnosed as ‘CFS’ and who now think they can help people who have M.E. (which is, again, unbeknownst to them, an entirely unrelated illness with an entirely different aetiology, response to treatment and prognosis)
  • Misguided M.E. sufferers who were lucky enough to experience a natural spontaneous remission from their illness (or from a particular symptom) but who incorrectly credit whatever they happened to be taking at the time with their improvement and so present a treatment which may be useless or have some modest benefits as instead being able to give other sufferers the same substantial (or enormous) improvement that they experienced.

There are so many different types of bogus treatment claims and scams, but some of the most common things to try to avoid (and which should set your internal alarm bells ringing!) include:

  • Be wary of any treatment which makes amazing claims about improvements or recovery – if it looks too good to be true, then it almost definitely is (If M.E. was really this easy to treat nobody would still have M.E. and there would certainly not be any severely affected sufferers left).
  • Be wary of treatments which claim to be able to cure or improve everything from arthritis to eczema to irritable bowel syndrome to ADHD to ‘CFS’ (‘cure alls’ usually cure nothing).
  • Avoid treatments such as antidepressants, cognitive behavioural therapy and graded exercise or any other treatment based on the inaccurate and unscientifically supported premise that you can ‘think or exercise yourself well’ with M.E. (This is particularly important with regard to exercise programs: a recent survey of a large group of M.E. sufferers found that exercise therapies such as graded exercise therapy (GET) were the single most harmful treatment for M.E. bar none)
  • Anything which claims there is an easy and sure fire cure or treatment for M.E., or that they and only they have unlocked the simple truth behind the illness, or anything similar, is to be avoided at all costs. (If someone has come up with an easy answer to M.E., what this really means is that they didn’t actually understand the question, and they’ve come up with a simple but WRONG answer! M.E. is not the same as ‘CFS’ or fatigue or chronic fatigue or a post-viral fatigue syndrome or Candida or anything else.)
  • Don’t be swayed by glowing testimonials; anyone could have written these (and probably did) and you have no way of knowing if a testimonial which says it is by a M.E. or CFS sufferer is actually written by someone who has the same illness as you do. These people may instead have any number of more easily treatable fatigue based illnesses (or they may actually have M.E. but also had a natural remission when they took the product which led them to falsely believe the product was more useful than it actually is.)
  • Be very suspicious when anything is very expensive
  • Be wary of claims based on dubious sounding science. (A common ruse is to make claims that the product works and is different from others because of the ‘ratio’ of ingredients for example; ’normal calcium and magnesium supplements wont give you the same effect, but my product will because it is in the exact ratio found in the body and thus my product is the only one which will be properly absorbed.’)

Some of these treatments may do nothing, some may be harmful and some may have a modest beneficial effect which doesn’t match up to the amazing claims made about the product, or justify how much you were persuaded to spend on the product. The biggest ‘cost’ from being taken in by misleading claims about treatments is not usually the financial cost however, but the emotional one; the high emotional price of false hope. Getting your hopes up that you have found the answer and that things will soon be so much better for you and then having your hopes completely shattered when the treatment doesn’t live up to the claims made about it can be truly devastating.

The best recommendations for treatments will come from: respected M.E. experts, reputable books on M.E., legitimate research, your own doctor (if your doctor is knowledgeable about M.E.) and perhaps also from fellow M.E. sufferers.

When taking advice from fellow sufferers however, there are a few things you need to be wary of:

  • Never rely on the credibility of advice from a sufferer you don’t know well. You have no idea if they have been correctly diagnosed with M.E., no idea if they have tested the treatment for efficacy (by stopping and starting taking it and monitoring the effects) and no idea if months from now (unbeknownst to you) their remission will end and they will be forced to admit that the treatment didn’t really work and that it was in fact a natural remission that caused their improvement; and not the treatment they so strongly and convincingly recommended to you.
  • Advice on symptomatic treatment or relief is usually far more reliable and useful than treatment suggestions for things which will supposedly greatly affect the general illness severity level (due to the propensity in M.E. for natural remissions and improvements in the general severity level of the illness).
  • If a friend recommends something to you (particularly a treatment which is meant to improve the whole illness rather than just to minimise certain symptoms), and you know they have M.E. and it really does seem as if this treatment is legitimately helping in some way it can be helpful to write down the treatment and then to ask them again in 3 or 4 months time if they are still experiencing the same improvement (as often this will not be the case).
  • Never rely on treatment recommendations which came from your friend’s brothers neighbours second cousin twice removed (or similar) who supposedly had ‘just what you have’ and who ‘recovered completely’ and is now ‘back working full time’ because of treatment x. Such ridiculous stories should always be treated with the contempt they deserve by all of us. There is a very strong possibility these people never had M.E. …but there is an even stronger possibility that they never existed at all! (The treatments recommended are always the most mundane things too, well known over the counter products, or simple diets etc. as if people as desperately ill with M.E. and the doctors who have devoted decades of their lives to treating M.E. patients wouldn’t have tried all the simple things first! Again, if it was that simple nobody would still have M.E., and certainly not severe M.E. (If something really worked, the M.E. world is very well connected and very EXTREMELY motivated to get better, and we would all KNOW very very quickly. That is a fact you can count on).

Make sure you also research the safety and established use in M.E. of any new treatment as much as you can before you try it (do an internet search, look it up in a M.E. textbook or two etc.). You must also always ask your doctor their opinion about how suitable the treatment may be for you and if it is safe or appropriate for you.

 

10…Learn to avoid and minimise stress

Stress unequivocally does not cause M.E. (and can not EVER cause M.E.) but as with most illnesses, stress can exacerbate the symptoms of the illness. Unfortunately, stressful situations also become harder to handle when you have M.E. and so it is important to avoid as many stressful situations, tasks and people as possible. The stress you can’t avoid you’ll need to learn to minimise as best you can. If you are able to meditate (some sufferers lose this ability or simply cannot listen to anything) this also may help considerably with stress reduction. Talking about what is bothering you to friends, family or to other M.E. sufferers in your support group may also help. Some sufferers also pour out (or vent) their feelings into private journals; whatever works best for you.

The most intense source of ‘stress’ in a M.E. sufferers life is the M.E. itself (of course) and it is completely normal to feel sad, mad, angry, irritable and frustrated sometimes because of your illness. (Indeed it would be abnormal if you did not feel these things sometimes). It is also normal and necessary for you to spend time grieving for what you have lost through the illness sometimes too; to feel sorry for yourself somewhat, and to cry as much as you need to. At other times however, you will need to try to find ways to take your mind off thinking about yourself, to try to distract yourself from such thoughts.

As with comparable neurological illness such as multiple sclerosis or Parkinson’s, along with the primary symptoms of the illness some sufferers of M.E. will also experience a smaller number of organic emotional or psychological symptoms. Possible symptoms include; emotional lability (mood swings), irritability, anxiety or panic attacks, emotional flattening or a degree of lack of inhibition. The damage to the parts of the brain which control emotion are of an identical nature to those that affect physical function; these emotional symptoms are an organic part of the illness caused by the same anatomical and physiological damage to the brain as sleep disorders, seizures or any other neurological problems or symptoms are.

Exacerbations of emotional symptoms in M.E. also tend to be linked to exacerbations in physical symptoms, there are most often not environmental triggers. The degree of severity of these symptoms varies considerably from patient to patient; some will have significant problems, others will have mild or only occasional problems and some will be unaffected. Like any other part of the illness, it is up to you (and your doctor) to try to minimise the effects of these symptoms as best you can.

If any of these emotional symptoms becomes a real problem for you however, or appears to be worsening (particularly feelings of depression, grief or sadness) and you feel you might benefit from outside help; it is important to find someone who is knowledgeable about M.E. to advise and treat you for these problems for this to be helpful. Psychologists or counsellors who see your emotional symptoms as your primary illness (rather than as a reaction to – or symptoms of – an organic and systemic serious neurological illness) and as the chief cause of your physical disabilities will be of little help and indeed (as you can imagine) could make things even worse for you emotionally. It will also pay to shop around until you find someone who you think is a good match for you; don’t expect to necessarily like the first person you see and don’t let a few bad experiences put you off if this is something you truly need. Hopefully your perseverance will pay off in the longer term.
  • See Verillo and Gellman's Treatment Guide for further information (details of this book are given below) and Coping with M.E. Emotionally. For a list of online support groups see: Support Groups. You might also like to buy (or borrow free from the library), different books on stress reduction and meditation; some are better than others so keep looking until you find one you like. The most severely affected will be too ill to meditate, but if you are up to it, it can really help; not the symptoms of the disease, but help you think more clearly and feel calmer and happier.
  • See The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List for more about the symptoms of M.E., and stress quotes for more about stress and M.E. (and why stress can never cause anyone to have M.E.)

 

11…Learn strategies to help with the cognitive symptoms of M.E.

The cognitive symptoms of M.E. can often be some the most severe and disabling of the entire illness, and so also some of the most concerning. These include problems with memory, problems with thinking and making decisions, difficulty learning new tasks and much more. Various treatments may improve these effects to some extent but modifying the way you do things can also really help, doing things such as:

  • Writing lists of things you have to get done that week or that day. This might mean keeping one small notebook you write everything in, or it might mean a notebook in each room, a well-organised calendar with a white board near it and several different lists and charts (for different things) on your computer! Whatever you find you need.
  • In addition to writing notes about everyday tasks etc. you might also like to keep separate lists or charts on paper or on your computer for; friends birthdays, any medications you are taking (including the dose, date started, the cost, where and who you bought it from), your consults with your doctor (write down as much as you can when you get home, before you forget it) and anything else you think might be useful.
  • With your doctors permission, bring a voice recorder to your doctors appointments if you feel like this is necessary for you to be able to remember what was said. (This may also be useful for university lectures etc.)
  • If you haven’t done so already, set up phone or internet banking and automatic bill paying where available.
  • Keeping things in the same place each time saves time wasted always looking for the same things you’ve lost.
  • Keep your medication in a pill box with the days of the week on it so you will know whether or not you have taken your medication each day.
  • Removing distractions such as noise or TV on in the background may help you think more clearly or complete a task more easily (or have a conversation more easily).
  • Watching less TV and/or reading less and/or less time on the computer etc. may help increase your cognitive abilities for the rest of the day (you may have to choose between quality and quantity of brain-power).
  • Save difficult tasks until the time of day when you are at your best mentally.

 

12…Consider becoming involved in M.E. activism and advocacy

Unfortunately, while many M.E. advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in many (or even most) cases and so the need is great for individual M.E. sufferers to participate in M.E. activism and advocacy. (Most groups are actively working AGAINST our interests and against science and ethical concerns.)

Aside from the gains to the M.E. community in the longer term however, this sort of activity can also greatly benefit the participant individually. It can provide a real sense of purpose, achievement and of pride. It is also a healthy and positive way to channel your anger and frustration at how poorly M.E. sufferers are treated (or how badly you have been treated).

Start small by just educating yourself and then those around you about the facts about M.E.; friends, family and fellow sufferers. That might be enough for you (and everyone doing just that would really help), or you might then like to look at writing letters of complaint to politicians, or to the media or to your local M.E. group; tell them what needs to change, what the real facts are and how important this is. Where you go from there is limited only by your imagination …well that and of course, your illness level (unfortunately!).

Recommended sources of additional information:

The two books The Clinical and Scientific Basis of M.E. edited by Byron Hyde MD. and CFS: A Treatment Guide by Verillo and Gellman are absolutely essential for everyone who has M.E., or has an interest in M.E.

 

The Clinical and Scientific Basis of M.E. edited by Byron Hyde MD.

This book contains the most comprehensive information available on the symptoms of M.E., the history of M.E. including a look at many of the outbreaks of the illness, epidemiology of M.E. (including the links with polio), issues of diagnosis, children with M.E., investigation, virology, immunology, muscle pathology, host response, food intolerance, brain mapping, neurophysiology, neuropsychology, sleep dysfunction and much more. This is a simply essential reference book for doctors, and M.E. patients, and easily surpasses all others of its type (as there really are no others of its type). All funds from the purchase of this 725-page encyclopaedia also benefit further research into the illness and assist in the promotion of greater understanding about M.E.

This book contains the accumulated knowledge of many of the worlds leading M.E. experts but the brilliant chapters written by Dr Hyde alone make this book worth the purchase price. This book cannot be recommended highly enough.

 

CFS: A Treatment Guide by Verillo and Gellman

Don’t be fooled by the unfortunate use of the term ‘CFS’ in the title and the use of the term ‘CFIDS’ in this book, this book is a book for people with M.E. This book contains detailed chapters or sections on almost every topic mentioned here and more; chemical sensitivities, food allergies and intolerances, recommended treatments and treatments to avoid or be cautious with, M.E. and children, advice on the importance of avoiding overexertion, advice on coping with M.E. emotionally and how M.E. can affect your relationships. Primarily however, this book is a very well organised and easy to use ‘Treatment Guide.’ You can either look up a particular symptom and read what causes it and what treatments may help with it, or you can look up individual treatments and read about their use in M.E., what their effects are, what are the likely side effects or negative effects of the treatment and much more. A wide variety of prescription pharmaceutical drugs are included, but so are vitamins, herb and information on alternative or complementary therapies such as acupuncture and massage.

More than a hundred different treatments are featured. This is a book you will refer to again and again and is simply invaluable for every M.E. patient and physician (although it does contain a small amount of ‘CFS’ tainted information, unfortunately).

 

Other recommended sources of additional information include:

  • If you are about to have surgery, read: Anaesthesia and M.E. and Hospital or carer notes for M.E. first.
  • If you are severely disabled by M.E. you may like to read (or print out for your family, doctor or carer) the new paper: Why patients with severe M.E. are housebound and bedbound
  • To read a complete list of the articles and resources available on the site suitable for different groups – severe M.E. patients, M.E. patients, patients misdiagnosed with ‘CFS,’ doctors, friends and family of M.E. patients, carers and so on – see the Information Guides page.
  • The papers by Dr Byron Hyde MD listed in the previous section, again, are all ESSENTIAL reading. Also highly recommended are papers by the brilliant Dr Dowsett M.D. (Both true M.E. experts in a world of ‘CFS’ and ‘ME/CFS’ and ‘subgroups of CFS’ compromise and selling out.) These two doctors are really the only ones listed on my recommended authors page that you can trust to be writing purely about M.E. in their various papers. Between them they have seen many thousands of individual M.E. patients, although unfortunately neither has created a publically available comprehensive guide to M.E. treatment as yet. Dr Hyde's latest paper however is a MUST-READ: The Nightingale Definition of M.E.
  • Engaging with M.E. by Professor Malcolm Hooper contains an overview of some of the medical knowledge of M.E., including a detailed discussion of treatments for the illness. This is a valuable and useful resource for doctors and patients alike.
  • Dr Paul Cheney in the US has over 20 years experience in treating M.E. and has seen thousands of M.E. patients. You can read about many of his theories and treatment recommendations for M.E. here. His latest lecture available on DVD – unfortunately not transcribed – includes an interesting section on treatment (although unfortunately, Dr Cheney cannot at all be recommended with regards to his grasp of the political situation surrounding M.E. and ‘CFS’ and so on. Nor on the aetiology of M.E. Much of the information Cheney produces on what he unfortunately calls ‘CFIDS’ relates to and refers to M.E. patients, but there are some significant exceptions, it seems). Cheney explains that like M.E., other neurodegenerative diseases such as Parkinson's, Alzheimer's and multiple sclerosis are also suspected of being driven partly by free radical formation. Supplements recommended include: CoQ10, IM magnesium and taurine, B12 injections, gookinaid, Inosine, vitamin E, milk thistle extract, Chlorella, Garlic, Hawthorn and Pycnogenol as well as Omega 3s from fish oil
  • To learn more about the mitochondrial defects in M.E. see: United Mitochondrial Disease Foundation (go to the treatments page) and The Heart of the Matter from Dr Paul Cheney. To see some of the abundance of M.E. mitochondrial research available see Mitochondrial Muscle Research.
  • Click here to read about Dr Martin Pall’s protocol/products which aim to promote down-regulation of the NO/ONOO cycle, or see his most recent book etc. Supplements recommended include: CoQ10, DHLA, vitamin E, AL Carnitine, carotenoids, milk thistle extract, bilberry, ginkgo leaves, grape seed extract, green tea and hawthorn, as well as Omega 3s from fish oil.
          (It is important to note however that Pall should not be considered a M.E. expert and that when he refers to ‘CFS’ this information should not be assumed to apply in whole or in part to M.E. Some of what he is saying generally may possibly be relevant to M.E. patients to some extent (as regards treatment, rather than symptomatology or aetiology, as it does with multiple sclerosis for example), but this is as yet unclear due to the fact he unfortunately makes no distinction between fatigue and ‘CFS’ and the distinct neurological disease M.E. M.E. is NOT at all a medically unexplained illness, and has little in common with the conditions Pall claims ‘share many symptoms and often occur together’ such as PTSD and MCS and Fibromyalgia – unlike ‘CFS.’ As Pall claims, ‘CFS’ (or rather, those illnesses which are misdiagnosed as ‘CFS’) can be caused by many different things including bacterial infections, psychological stress and physical trauma but this makes it very clear that when Pall refers to ‘CFS’ he is not referring to genuine M.E. Anyone who describes an illness that is based on fatigue, is medically unexplained, has symptoms similar to Fibromyalgia or PTSD etc., and that can be caused by many different things such as trauma, physical and emotional stress and bacterial infection and common virus infections such as EBV or herpes etc., IS NOT REFERRING TO M.E. and is not knowledgeable about even the most basic facts of M.E. The research is very clear that M.E. is not (and cannot) be caused by stress, trauma or bacterial infections and so on. M.E. is caused by a virus, an enterovirus and is primarily a testable and measurable neurological disease with many distinct features and unique symptoms.
  • You might find it useful to learn more about health and the role of nutrition, vitamins and antioxidants generally, rather than just sticking to purely M.E. based information. Books such as The NEW optimum nutrition bible  and Dr Atkins Vita-Nutrient Solution: Nature's Answer to Drugs can provide useful simple overviews (although you should ignore 100% of anything they have to say about treating ‘CFS’ as this will be irrelevant or inappropriate with regards to M.E.). These books are also useful for letting you know which vitamins etc. are in which foods, and what is the safe amount of each vitamin and mineral etc. and so on. I’d also highly recommend: The Overlooked Role of Chronic Infection in Neurodegeneration and Its Reversal Using Nutraceutical Agents. For more on neurodegeneration see also: Metabolism Mitochondria and ME and Mitochondrial muscle research and general muscle research and Neurological and cognitive research. 
  • Some of the best books which contain stories of the experiences of individual M.E. sufferers, and which really explain what living with M.E. is like from a patients point of view, are the books Stricken edited by Peggy Munson and Shattered: Life with ME by Lynn Michell. Both are highly recommended. See also In the Shadow of Memory and The Night Side by Floyd Skloot which detail the author’s own experiences with M.E.
  • Some of the best sources of individual stories and opinions of M.E. sufferers available online are listed in the Case studies section.
  • Myalgic Encephalomyelitis Research and Articles – A collection of literally HUNDREDS of some of the best M.E. research and articles, from some of the worlds leading researchers, doctors and M.E. advocates.
  • For those that have trouble reading (and prefer listening) see the new Audio and Video page
  • See also: What is Myalgic Encephalomyelitis?, Myalgic Encephalomyelitis: The Medical Facts, Fatigue Schmatigue, A Million Stories Untold, The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List, Putting Research and Articles into Context, Testing for M.E., Myalgic Encephalomyelitis Activism and Advocacy, Hints for living with Myalgic Encephalomyelitis, Coping with M.E. Emotionally, Book Reviews, 3 Part Myalgic Encephalomyelitis Ability and Severity Scale, Support Groups, Quotes, The Myths about Myalgic Encephalomyelitis, The CBT and GET database, Smoke and Mirrors and Treating Myalgic Encephalomyelitis: Avoiding Overexertion. Plus many more.

 

M.E. and children

Tragically, children as young as 5 (or in rare cases even as young as three) can be affected by M.E. There is a real need for more information and research on M.E. specifically geared to children as currently very little is available but some additional resources parents or carers of M.E. children may find useful, include:

 

‘Information’ sources to avoid:

Unfortunately when it comes to information on M.E. there is always far more bad than good available and so it is just as important that you are aware of what information to avoid as well as what is useful. The ME books best avoided section contains a list of books which are not recommended because they; do not distinguish appropriately (or at all) between mere fatigue and the neurological disease M.E., offer inappropriate medical advice which may help some fatigue sufferers but is inappropriate or dangerous for people with M.E., offer unrealistic expectations of response to treatment and recovery based on confusion with mere fatigue sufferers, or they propagate many of the myths and propaganda about the illness which do the M.E. cause (and community) so much harm.

Add to this list of resources to avoid, any book, website, newsletter, TV segment, radio segment, newspaper article, research – or anything else that; uses the term ‘chronic fatigue’ in the title, or which uses the term ‘chronic fatigue’ interchangeably with CFS or CFIDS or M.E. anywhere in the text, which claims that the illness is a new 21st Century disease caused by the ‘busy stressful modern world’ or your supposed perfectionist personality (even if you happen to have one it’s irrelevant and didn’t cause you to get M.E.), or which claims that the illness can be easily cured with exercise, psychotherapy, stress reduction, an anti-Candida diet, various vitamins and other treatments or anything else. (Titles like ‘From Fatigued to Fantastic’ should set all your alarm bells ringing!)

Also avoid anything which talks about M.E. being: ‘mysterious’ or ‘medically unexplained’ or ‘an amazing illness which crosses the boundaries between the body and the mind,’ of having no tests which can aid diagnosis, of even being an illness where ‘no tests have ever shown anything,’ or which claims that the illness is a problem of fatigue following glandular fever, or that the illness is caused by the Epstein-Barr virus, herpes, glandular fever or Candida, can be caused by stress or trauma, or is the same illness as Fibromyalgia or Lyme disease anything else. These are all just useless and harmful ‘CFS’ myths and propaganda; they have nothing to do with authentic M.E. and legitimate science.

Treatment examples, notes and cautions

Examples of some of the treatments which may help M.E. patients include:

  • Co-enzyme Q10 (300 – 1200mg ubiquinone, or 100 – 400mg ubiquinol. Ubiquinol is at least three to four times better absorbed than the standard ubiquinone, so it allows a greater blood concentration of CoQ10 at a more reasonable price than conventional ubiquinone.) Make sure you buy a good quality brand – such as VRP or Life Extension – as much of the CoQ10 available is of low quality. Make sure too that you start at a low dose and work up very slowly to avoid side effects; start at 50mg daily for 2 or 3 weeks, then (if you are handling that dose) go up to 100mg for 2 or 3 weeks and so on, up to your optimum dose (some of us cannot take 400mg and are better off with 200mg or 300mg for example) or the highest dose you can afford. High levels of ubiquinol can make a real difference to heart and brain function, and can markedly improve sleep. CoQ10 as ubiquinol is highly recommended for Myalgic Encephalomyelitis.
  • Sublingual vitamin B12 can help improve sleep quality in M.E. and neurological/CNS function generally.  B12 also has many other beneficial functions for M.E.  Dosage is typically 1000 – 2500mcg, up to 5000mcg (to a maximum of 10000mcg). Large doses may not be well tolerated. The methylcobalamin form of B12 may not be as appropriate for M.E. patients (or tolerated as well) as the hydroxocobalamin form and so only this form is recommended. Vitamin B12 may also be injected; dosage is 10000mcg several times a week or daily. Whichever form you take, it is essential to start at a low dose and work up slowly as B12 also helps with detoxification. 
             Some people have problems absorbing/utilising B12 and need to take it along with the substance that helps it be absorbed, called ‘intrinsic factor.’ (Although some doctors claim that if you take doses over 1000mcg this overcomes any absorption problem.) This is available in products such as     Intrinsi B12/Folate which contains 500mcg B12 as cyanocobalamin and 800mcg folate (a B vitamin) as L-5-Methyl Tetrahydrofolate. (Standard folate supplements may not be as well absorbed/utilised and may even be converted into glutamate and so be brain excitory, something that does not happen with this particular form of activated folate). Less L-5-Methyl Tetrahydrofolate is needed than standard folate, and this supplement should be started at very small doses, i.e. 1/10th of a tablet. B12 and folate (and the other B vitamins also) are essential supplements for M.E.
  • Essential fatty acids cannot cure M.E. (as some unethical and unscientific individuals have claimed, undoubtedly using ‘fatigue’ patient groups) but they are an essential part of a M.E. treatment regime. EFAs help to protect the myelin sheath, improve CNS function, and to reduce inflammation and insulin resistance..
             Omega 3 (EPA and DHA) supplementation in the form of fish oil is vital. Make sure you buy a good quality brand that filters out all the mercury and other contaminants from their fish oil; ONLY buy fish oils which have been certified by the IFOS (for example, Life Extension brand). If you buy contaminated fish oil of poor quality it can do you a lot more harm than good. Avoid Krill oil and cod liver oil. Start at a low dose (eg. 2 capsules a week) and work up slowly. Standard dosage is usually around 2400 – 4800mg of DHA and EPA combined daily. (Never take more than 5000mg of EPA and DHA without medical supervision and medical testing of your AA/EPA ratio via blood tests however, as this can cause serious adverse events. For more information see the book/website of The Anti-Inflammation Zone).
             Although it is not as essential as Omega 3 supplementation, if you can afford it, you may also like to take a smaller amount of Omega 6 in the form of Borage oil. Standard dosage is 240 – 480mg daily; one or two capsules. You could also add 1000mg of linoleic acid (Omega 6) and/or alpha linoleic acid (Omega 3) in the form of     Perilla oil or Flaxseed oil. (Flaxseed oil also contains Omega 9 as oleic acid). Note that EFAs must always be taken in combination with antioxidants, especially vitamin E (at least 400 IU).
  • Hawthorn capsules can improve the cardiac and circulatory problems of M.E. (See this study) Note that this should be Hawthorn capsules made from the flowers and leaves of the plant (crataegus monogyna), not from the berries (crataegus laevigata). Hawthorne is a potent bioflavonoid and antioxidant. Dosage is 1000 – 1500mg daily. Expect to wait 6 – 8 weeks to see effects. Hawthorne is best taken consistently to see benefits.
  • Pycnogenol can be very beneficial in M.E. and is highly recommended by some doctors. Pycnogenol is a potent antioxidant and bioflavonoid extracted from pine bark. Dosage is 50mg daily.
  • Instead of taking 1 – 3g (or as much as you can tolerate without affecting your bowels, as some doctors recommend) of synthetic vitamin C as ascorbic acid, it may be more beneficial to take smaller amounts of a good quality vitamin C whole food powder which also contains the naturally occurring bioflavonoids of the fruit and other active ingredients which have a synergistic or additional effect. Dosage is 250 – 500mg. You might also like to add a small amount of fat soluble vitamin C as ascorbyl palmitrate, which has a slightly different action than water soluble C. Dosage is 200 – 500mg. Start at a low dose of each of these and work up slowly.
             Note that if you have already bought lots of synthetic vitamin C, or you cannot afford the whole food powder, you could add 1000mg of bioflavonoids to it and still get some of the same benefits of taking a whole food C powder. Bioflavonoids (or bioflavonoid containing supplements) include: Pycnogenol, Hawthorne, Quercetin, citrus bioflavonoids, soy bioflavonoids, Quercetin, Grape seed extract, Ginkgo, Bilberry, Silymarin and Green tea extract. Vitamin C and bioflavonoids go together and work better together just like the B vitamins do.     Click here to learn more about bioflavonoids.
  • Probiotics are often used to reduce food sensitivities, nausea and stomach pain. They can also improve general wellbeing, but must be taken every day to have a sustained benefit. Prebiotics such as FOS can also be helpful and you may want to take both. Digestive enzymes may also be useful in helping you digest food properly and to reduce Irritable Bowel Syndrome-type symptoms, help support your pancreas and to reduce inflammation. They may also help you cope better if you ingest small amounts of foods you have IgG reactions to. Quercetin also supports the body by increasing its resistance to allergic response. Quercetin serves as a potent inhibitor of histamine and cytokine release from mast cells and basophils. Bromelain and vitamin C may also be useful in helping to control allergies (combined Quercetin and Bromelain supplements are widely available).
  • A leaky gut can heal, and may be improved by supplementation with: Lecithin, Licorice, fibre, probiotics, cabbage powder, digestive enzymes, zinc, vitamin A and butyric acid. It is also important to avoid alcohol, wheat and yeast, foods you are allergic to and foods which contribute to Candida. Lecithin also helps to protect cell membranes, assists in methylation and helps to break down fat in food.
  • A large body of research spanning many decades has unequivocally implicated mitochondrial dysfunction as an essential or core feature of M.E. Mitochondrial (or krebs cycle) supports are a useful treatment for M.E. (including some of the cardiac and cognitive problems of M.E.). These include a combination of:
    • Co-enzyme Q10 (300 – 1200mg ubiquinone, or 100 – 400mg ubiquinol which is better at least 3 to four times better absorbed. Make sure you buy a good quality brand – such as VRP or Life Extension – as much of the CoQ10 available is of low quality). If you try only one product from this list, ubiquinol would be a sound choice. Results should be seen within a month, at higher doses,
    • L Carnitine and Acetyl-L- Carnitine (2 – 4g daily) helps with brain and cardiac function,
    • Carnosine (150 - 1000mg. Some groups claim that dosages less than 1000mg will not be utilised, while other studies show that lower doses are just as effective as higher ones. Either way it is probably best to start at the lowest dose of Carnosine and work up from there. 150mg may be enough for M.E. patients),
    • vitamin B3 (500 - 1500mg niacinamide, plus 500mg flush-free niacin),
    • vitamin B2 (100 – 200mg),
    • vitamin B1(100 – 200mg as thiamine or benfotiamine or both),
    • vitamin C (250 – 500mg whole food powder C, or 1000 – 2000mg ascorbic acid taken with 500 – 1000mg of bioflavonoids, or a combination of both),
    • vitamin E (400 – 600 IU, preferably a ‘gamma E’ product),
    • Alpha Lipoic Acid (100 – 300mg ALA, or 50 – 150mg of reduced alpha lipoic acid: DHLA. Start at a low dose and work up very slowly. The lower doses may be adequate),
    • Magnesium (400 – 600mg as Magnesium glycinate tablets, or as an IM injection),
    • Calcium (800 – 1000mg, best taken at night),

There is also:

Dosages given are for adults, and are only a rough guide. (Note that while some patients may experience some benefit at lower doses, some of us need high doses of some of the mitochondrial supports to really get the full effect. This applies most of all to CoQ10 and Carnitine; some of us do best on 3-4g of Carnitine and find we need 300-400mg of ubiquinol CoQ10.) To learn more about the mitochondrial defects in M.E. (including more information on dosages) see: United Mitochondrial Disease Foundation (see the treatments page) and the Dr Cheney page. To see some of the abundance of M.E. mitochondrial research available see Mitochondrial Muscle Research. (Note that some doctors prefer to prescribe injections of magnesium rather than oral supplements; see the section below for a warning about the administration of very high doses of oral or injectable magnesium.)
     Other supplements which can help support cardiac and cardiovascular function include: Co-enzyme Q10, L Carnitine, Taurine and Magnesium. Also helpful (or ESSENTIAL) for reducing the work-load of the heart are leg raising cushions and medical quality (and carefully measured for correct fit) knee high or thigh high compression stockings.

  • St Mary’s Thistle, or Silymarin, is an important supplement that helps support liver function in M.E. Dosage is 100 – 300mg. Start at a low dose and work up slowly. Expect to wait 8 – 12 weeks to see results.
  • Useful antioxidants include: Co-enzyme Q10, vitamin C, vitamin A, Selenium, Sublingual vitamin B12, vitamin E, Grape Seed Extract, Hawthorne, Pycnogenol, Rosemary Extract and Alpha Lipoic Acid. Carotenoids are also important, but note that it is no good taking just one as they work better together just like the B vitamins do; you need to take natural source Beta carotene, Lutein, Lycopene and Zeaxanthin together (plus Alpha carotene if possible). Antioxidants work best in combination, so either buy a range of them separately, a good multivitamin containing a few different ones in the same tablet or buy an antioxidant complex product.
             Also note that antioxidants are one of the types of substances that M.E. sufferers often react badly to, particularly ALA and DHLA (the more powerful reduced form of ALA), so do make sure to start with very small doses and only raise them slightly once you have been taking a certain dose for a month as negative effects can be delayed. (Perhaps start at just 25mg.)     Rosemarinisic acid is a potent antioxidant that also assists with phase I and phase II detoxification. (To read more about detoxifying and antioxidants click here.)
  • Buy a good (stimulant, iron and copper free) multivitamin and mineral supplement which contains roughly:
    • Vitamin A or beta carotene (5000 - 7500 IU),
    • At least 25 – 50mg of B1, B2, B3, B5 and B6,
    • Some B12 (most multivitamins contain only very small amounts) and folic acid (200 - 400mcg),
    • Vitamin C (100 – 500mg),
    • Vitamin D (400 – 1000 IU),
    • Vitamin E,
    • Selenium (100 – 200mcg, or up to 400mcg),
    • Molybdenum (200 – 300mcg, although many recommend much higher doses),
    • Managanese (2 – 7mg), Chromium (100 – 600mcg) and Boron (2 – 3mg),
    • Zinc (25 – 45mg, but no more than 50mg as this causes immune system suppression)
    • Plus some Biotin, Iodine, PABA, Potassium, Calcium, Magnesium and Inositol, and if possible, additional natural carotenoids such as Lutein, Lycopene and Zeaxanthin.
  • Inosine is an anti-viral that enhances NK function. Leading M.E. expert Dr Byron Hyde M.D. was involved in a trial for Inosine for M.E. in 2003 which showed very positive results. Dr Cheney says about Inosine in the article Balance the Immune System (Th1/Th2) and Basic Protocol/Treatment Plan: ‘It appears to raise IL-12 and lower IL-10, which turns off Th2 and turns on Th1. It is also called Imunovir and is very nontoxic, very safe. Week one, take 6 tablets a day, Monday through Friday, and none on the weekend. Week two, take 2 tablets a day, Monday through Friday, and none on the weekend. Repeat this cycle. But do not treat every month. Do two months on and then one month off of this "pulsing" dose. This medicine works best when you do not treat regularly. If you treat continuously at the same dose, it stops working.’
             Inosine should only be used under direct supervision of your health care professional, do not just take this medication yourself. Before beginning with this product it is best to get a baseline on NK function, then test again after having been on the product for one to three months. (Each Immunovir tablet is 500mg according to this     information on the product and you take the same quantity of Inosine as Immunovir or Isoprinosine. Inosine is now freely available and relatively inexpensive.)
  • Various hormone levels need to be monitored regularly and hormone replacements therapies administered if necessary. (Adrenal and thyroid hormones in particular, but also sometimes reproductive hormones as well. Every M.E. patient should have their tested thyroid status tested (Free T4, T3 and TSH) and be treated with thyroxine (or similar) or amour thyroid as appropriate. Even if thyroid problems are not detected on the first test, M.E. undermines the thyroid gland and so thyroid problems can develop later and so it's a good idea to test thyroid function repeatedly, at at least yearly intervals. Reverse T3 testing may also be useful. Note that ‘armour thyroid’ may be far more beneficial/better tolerated than synthetic thyroxine.)
  • Muscle problems, particularly those affecting the muscles around the lungs and restricting breathing may need treatment with a muscle relaxant drug such as Baclofen.
  • A diet low in carbohydrate/sugar can also help to reduce symptoms of noise sensitivity/hyperacusis (and Candida). Eating small, balanced meals every 2-4 hours (or sometimes even more often) may help to control (or eliminate) the symptoms of hypoglycaemia. Fasting should be strictly AVOIDED by all M.E. sufferers (including juice fasts) as this can lead to relapse or even be dangerous.
  • Click here to read an article on the benefits of adding natural salt to your diet. (Increased natural salt intake is recommended by several M.E. experts, along with other electrolytes, to help increase blood volume. Low circulating blood volume is well-documented in M.E. Salt also helps support adrenal function, immune system function and brain function). You could take ½ a teaspoon daily (1 tsp of salt daily in total is probably sufficient). (Note, however, Cheney recommends ¼ to ½ of a teaspoon of sea salt be dissolved in a glass of water and taken two or three times a day to help boost blood volume (as part of your daily water intake limit, not in addition to it). He recommends patients start with the lower dose and work up.)
  • Also helpful for improving IBS-type symptoms is fibre. (Be sure not to take fibre two to four hours before or after taking medications as the fibre can adversely affect absorption). Click here to read an article on the benefits of fibre. (You could also just add more seeds, nuts or vegetables to your diet if this is possible.)
  • Low dose Naltrexone may be useful in improving cognitive abilities and may also have other benefits (note that this drug should never be taken in combination with any drugs which are opiates). LDN should always be taken at night, between 9pm and 3am. Dosage is 3 – 5mg.
  • Some doctors also prescribe (duentric coated) low dose daily aspirin (eg. Cartia) for M.E. patients because of the findings of blood hypercoaguability in M.E. (This medication must be taken with the knowledge of your doctor). A natural alternative is Nattokinase (according to Dr Cheney).
  • All chronic disease cause high homocysteine levels and this is documented in M.E. specifically also. High homocysteine levels can be lowered with (a combination of) products which improve the process of methylation such as: sublingual (or injectable) vitamin B12, Betaine (TMG), vitamin B6, and Folic Acid. You can have your homocysteine levels checked by York labs.
  • Blood sugar control may be able to be improved with supplementation with: Choromium, vitamin B5 (as Pantethine if possible), Biotin, Magnesium, and Vanadium. (Do not take a higher dose of Vanadium than is suggested on the bottle.)
  • Potassium supplementation may be beneficial but should always be monitored carefully by your doctor as both high and low potassium is a serious problem and can cause cardiac abnormalities. (Low potassium levels have been documented in M.E. Potassium levels should also be monitored carefully, and extra potassium given, if you are taking the drug Florinef.)
  • The reversed sleep/wake cycle common in M.E. (and the lack of deep sleep) may be treated with melatonin. Dosages range from 300mcg, to 3mg. Start at a low dose and work up slowly only if you need to. Vitamin B12 can also have a remarkable and very positive effect on sleep initiation and quality.
  • Other treatments which may be useful include: Liquorice, Molybdenum (100 – 300mcg), antiviral drugs and herbs or similar (Grape Seed Extract, Olive Leaf Extract, Beta Glucan, Allicin), Transfer Factor (colostrum), antifungal drugs and herbs (Grape Seed Extract, Caprylic Acid, Olive Leaf Extract, and Allicin), Turmeric/Curcumin (article, article 2, article 3) for pain and inflammation etc. Ginger for nausea, Aloe vera juice, Ginkgo,  Chamomile, Cramp Bark can help relieve muscle spasms and menstrual cramps, Propolsis (contains 500 bioflavonoids), Resveratrol, Luteolin, Lutein, Royal jelly, Quercetin and Bromelain, carotenoids, plus Biotene toothpaste/mouthwash (or similar) to reduce dental deterioration. The Chinese medicine called Matrine may also be useful for M.E. (says a patient of Dr Chia).
         This includes of course, getting appropriate REST and avoiding all types of overexertion! Not just physical overexertion, but also cognitive overexertion and orthostatic stress; it is very important to not maintain an upright posture (sitting or standing) for longer than your body can easily tolerate. A good diet is also vitally important as the health of your gut strongly affects the health of your brain and your level of neurological or CNS function.

 

Examples of some of the treatment cautions etc. relevant to M.E. include:

  • Remember to always start each new treatment at a very small dose. Either 1/10th of a normal dose, or even just some small crumbs of a tablet/emptied capsule if you are very sensitive, for at least a week or two to make sure you don’t become seriously ill by taking a lot of a medication you react badly to.
  • Note that folic acid supplementation without B12 supplementation can mask B12 deficiency and be extremely dangerous and cause neurological damage in rare cases. Folate should not be taken without additional B12.
  • M.E. patients should avoid taking supplements containing iron or copper. (Unless tests have shown iron deficiency).
  • Cysteine and N-Acetyl Cysteine supplementation should be strictly avoided by M.E. patients. (One doctor even speaks about two M.E. patients who both committed suicide due to the effects of taking just 1000mg of NAC. This supplement can cause many of the physical problems seen in M.E. to WORSEN and for mercury to be released into the system.) Note that those who have problems with NAC may also have problems with taking SAMe and whey protein. If you take Glutathione, take only the reduced form.
  • Excitotoxins such as aspartate (NutraSweet/aspartame), glutamate (MSG), and homocysteine can cause cell death when their actions are prolonged. For more information about the need to avoid aspartame see links 1, 2, 3, 4, 5 and 6. M.E. patients also need to avoid: chlorine, fluoride, 5 HTP supplements, trans fats in food and tryptophan supplements. Unnecessary medicinal drugs should also be minimized. NSAIDS should be avoided in particular and can be replaced with Turmeric/Curcumin. Also very problematic are SSRIs which should be avoided if at all possible. For more information see this neurodegeneration PDF, which explains:

Although many factors can play a direct role in the initiation of neurodegeneration, the two forces which interact at the cellular level are free radicals formed by the reactive oxygen species and reactive nitrogen species, and secondly, excitotoxins, such as glutamate (monosodium glutamate or MSG), aspartate (i.e. NutraSweet) and homocysteine. Excitotoxins are neurotransmitters which can cause cell death when their actions are prolonged. Excitotoxins are neuro-toxins that are often added to foods, such as aspartame, and MSG (monosodium glutamate, also known by other names such as "natural flavors", texturized protein, "spices", etc.)
  • Avoid Provigil, it stimulates nitric oxide, says Cheney.

  • Naproxen has been implicated in possible mitochondrial damage

  • Having your tablets with low-fat meals or no fat meals will stop you fully absorbing some nutrients, as sometimes some fat is needed for absorption (eg. CoQ10).
  • Antidepressants are very often poorly tolerated by people with M.E. Small doses of certain antidepressants may be prescribed to deal with symptoms of pain, sleep or depression (particularly pre-existing depression) but will not affect or improve the illness as a whole. The dosage used should always be very small (1/10th of a normal dose or less) but even at this dosage many people with M.E. cannot tolerate these drugs at all. Some particular antidepressants may cause other serious problems: Doxepin is known to cause heart problems (which is particularly concerning considering the well known cardiac issues in M.E.) and Serzone (a drug which has been taken off the market in some countries but not others) is linked with liver failure.
  • Probably the most harmful ‘treatments’ for M.E. (along with the recommendation of antidepressant drugs) are cognitive behavioural therapy (CBT) and graded exercise therapy (GET). For more information on why these inappropriate interventions are so often forced on M.E. patients, and the extremely severe and long-term harm they can cause (including deaths) see: The CBT and GET database
  • The above comments apply equally to other psychologically based ‘treatments’ touted by some groups as being very beneficial or even curative for ‘chronic fatigue’ (a term used interchangeably with CFS and M.E. by these groups) such as ‘Reverse Therapy,’ ‘Mickel Therapy,’ ‘Emotional Freedom Techniques’ (EFT) and the ‘Lightning Process.’ These treatments may or may not be useful to those with fatigue caused by various emotional or behavioural problems, but they simply cannot improve authentic M.E. If a person has improved with these therapies they have not been correctly diagnosed with M.E. (or they have been lucky enough to have a natural remission of the illness at the same time these ‘treatments’ were undertaken).
             Psychological therapies such as these can no more repair the serious organic damage to the brain, cells and organs in M.E. than it can do so for those with multiple sclerosis or Parkinson’s. Success with these treatments on fatigue sufferers has no relevance whatsoever to those with M.E. The only change likely to be seen with these ‘treatments’ in those with M.E. is a ‘lightening’ of their wallets! (as many have already commented.) As with similar therapies such as CBT however, the severely affected in particular (but also those with moderate M.E.) may also be made considerably more ill short- or long-term by these inappropriate and (physically and mentally) cruel interventions. They can often cause very severe relapse. If these treatments don’t work, the victim is blamed for ‘not trying hard enough.’ So there can also be a huge emotional cost from being subjected to what amounts to serious emotional abuse.
             All these ‘treatments’ are, is well-publicised money-making scams designed to prey on society’s most vulnerable members. What they are doing is sicker than we are, truly. It’s lower than low.
         See:     The CBT and GET database for more information and if family members are pressuring you to participate in scams such as the Lightning process, Reverse therapy, Mickel therapy, EFT and so on, see the new The Lightning Process (etc.) scam page.
  • The above comments apply equally to other psychologically based ‘treatments’ touted by some groups as being very beneficial or even curative for ‘fatigue’ (a term used interchangeably with CFS and M.E. by these groups) such as ‘Reverse Therapy,’ ‘Mickel Therapy,’ ‘Emotional Freedom Techniques’ (EFT) and the ‘Lightning Process.’ These treatments may or may not be useful to those with fatigue caused by various emotional or behavioural problems, but they simply cannot improve authentic M.E. If a person has improved with these therapies they have not been correctly diagnosed with M.E. (or they have been lucky enough to have a natural remission of the illness at the same time these ‘treatments’ were undertaken).
         Psychological therapies such as these can no more repair the serious organic damage to the brain, cells and organs in M.E. than it can do so for those with multiple sclerosis or Parkinson’s. Success with these treatments on fatigue sufferers has no relevance whatsoever to those with M.E. The only change likely to be seen with these ‘treatments’ in those with M.E. is a ‘lightening’ of their wallets! (as many have already commented.) As with similar therapies such as CBT however, the severely affected may also be made considerably more ill by these inappropriate and (physically and mentally) cruel interventions. See:     The CBT and GET database for more information.
  • Beta blockers (often prescribed for cardiac irregularities) can actually cause disease progression in M.E. and so are very much not appropriate for M.E. sufferers.
  • NSAIDS can make inflammation worse in the long term and can be replaced with Curcumin.
  • The Marshall protocol is recommended for ‘CFS’ with an almost religious zeal by some patients and groups. There is no good evidence however, or any evidence that it is appropriate for M.E., nor that it is safe for those with M.E. This treatment can be very dangerous because (among other problems it causes) it actually exacerbates the immune system deficiencies of M.E. As you would expect, serious side-effects and relapses have been widely reported by M.E. sufferers. Some sufferers have relapsed severely with this treatment, and are still very severely affected years later. Some say they have come very close to death from it, or close to suicide because of how severely ill it made them even many years on. For more information please see: Paper 1, 2, 3 and Paper 4.
         (I wouldn’t touch this one with a bargepole. I’d even go so far as to say, if it helps, the person did not have M.E. This treatment is just inappropriate for genuine M.E. patients. I’ve heard so many just horrific first person accounts of this ‘treatment,’ it has ruined a lot of lives. Please don’t take this risk if you have M.E.)
  • Many M.E. patients become severely ill, and relapse severely and/or long-term, with antibiotics. (The same is true of antifungals as well as different types of antivirals, although their use in M.E. is far more established).
  • Stimulants of any kind are not a useful or safe treatment for M.E. They may give an immediate benefit of increased activity in the very short term, but longer term this is counter productive as the disability of M.E. is in part protective and transgressing your activity boundaries in this way can only lead to unnecessary extended relapses and disease progression. There have also been deaths in M.E. related to overexertion.
  • Even where DHEA deficiency can be documented, administration of DHEA can cause severe relapse in M.E.
  • Echinacea is often recommended to boost the immune system in healthy people but in M.E. parts of the immune system are already dysfunctional and upregulated and so this will only worsen this problem and so should be avoided by people with M.E. (some of the symptoms of M.E. are caused by this upregulation).
  • Cats claw or Samento should be avoided by those with autoimmune diseases (including M.S.)
  • Ginseng can stimulate adrenal glands and increase production of interferon (which can increase symptoms in M.E. sufferers) and is also a stimulant. DMAE can also make seizure problems worse in M.E.
  • Be wary of ‘homoeopathic’ products (such as Bioglan brand homoeopathic melatonin sold in Australia) as they do not actually contain any active ingredients! (Bioglan melatonin doesn’t contain ANY melatonin. So if you think you have tried melatonin and it didn’t work for you, but it was Bioglan melatonin, then actually you haven’t tried it at all.)
  • Some patients report huge benefit from ‘Neurontin,’ while others have a very negative effect from the drug. (So this is one that should be taken with caution to begin with.)
  • Very high doses of magnesium (as are often recommended by many sufferers and alternative practitioners) can cause significant cardiac problems and so this can be unsafe. Also note that the first time you have an injection of magnesium – or vitamin B12 – this should always be done in your doctor’s surgery in case you have an adverse reaction (magnesium can adversely affect cardiac function and some people react badly to the preservatives in B12 injections). Also note that magnesium supplementation (oral or injectable) must also always be balanced with a similar amount of calcium supplementation, and that vitamin B12 supplementation (oral or injectable) should also always be combined with a B vitamin complex supplement so that you don’t have an imbalance of the B vitamins.
  • Some doctors are prescribing Mestinon, (a myasthenia gravis drug) for M.E. Mestinon is pyridostigmine bromide, a drug which can further disrupt or damage the acetylcholine system in the brain (a system known to be severely dysfunctional in M.E.). This drug is not appropriate or safe for M.E. sufferers (and is even thought to be one of the possible causes of Gulf War Illness; an illness with some similarities to M.E.)
  • Make sure you buy good quality brands of supplements, as much as possible. When you buy capsules and tablets, make sure you look at the fillers used (ie. rice flour, magnesium stearate). If you don’t tolerate a certain supplement it might only be because of the type of filler or binder used and you may tolerate another brand which uses different fillers/binders perfectly well. In some cases you may be able to get around this problem by buying supplements in a pure power form and either taking them in water, or making your own capsules by buying an inexpensive capsule machine and some empty capsules. This can save you money too.
  • If you’re taking reasonable amounts of vitamin C, don’t stop taking them abruptly or you can end up with ‘rebound scurvy.’
  • Treatment for panic attacks will never be useful if in fact the ‘panic attacks’ are misdiagnosed neurally mediated hypotension (NMH) and/or postural orthostatic tachycardia (POTS) – a fast heart-rate or problems with blood pressure on standing. Both of these are always a big part of M.E. but some doctors are not aware of this and so may misdiagnose these problems as being due to ‘panic attacks.’ Of course you may actually feel panic or even terror when you experience severe NMH or POTS, but this is as a reaction to the terrifying and excruciating symptoms and pathology, not as a cause of them.
         Suspect you have NMH or POTS and not panic attacks when you: have never had an attack when lying down and when you have most of your attacks and all your most severe attacks when sitting or standing still. Also be suspicious if these attacks improve if you fidget or move about, learn significantly forward or backward constantly when sitting, or crouch down or lie down and when you feel perfectly calm, relaxed and happy and not at all anxious before they happen.

 

If you were to create a top 10 list of basic, important M.E. treatments, it would have to include: CoQ10 (ubiquinol), vitamin B12 (hydroxocobalamin) and folate (L-5-Methyl Tetrahydrofolate), Essential fatty acids, a good quality multivitamin and multimineral supplement (without iron, copper or stimulants), Probiotics/prebiotics, Magnesium/Calcium/Potassium and Salt, Hawthorn and Pycnogenol, an antioxidant complex (containing adequate vitamin A, vitamin C, vitamin E, Selenium and Zinc – if there isn’t enough of each already in your multivitamin), Silymarin and L Carnitine/Acetyl L Carntine.

If you were to create a top 25 list of basic, important M.E. treatments, you’d probably also add: Digestive enzymes, Carnosine, Vitamin C whole food powder, NADH or D-ribose, Molybdenum, Undenatured WPI, low dose daily aspirin or Nattokinase, Inosine, Armour thyroid, extra B2 and B3, Chlorella or garlic, Lipoic acid, Lecithin, Turmeric (or black cherry extract), and extra B1 and B5.

 

Of course this is not a comprehensive list of treatments or treatment cautions, it is just a list of some of the basics. Remember that it is probably better to take a larger number of things at a smaller dose, than just a few things at very large doses; that way you make sure no important bases are left completely uncovered. Information given on dosages in this paper is only a very general guide. This paper is designed to be merely a starting point in your research on dosages and treatments, not by any means the last word! If it is at all possible for you, I’d highly recommend you do as much extra reading from high quality resources as possible.

Remember to always check with your doctor before trying any new treatments (and to always monitor yourself for the effects of each new treatment to help you and your doctor decide what is working and what is not.)

Before you start any new treatment remember too to always start with a very small dose, try only one new thing at a time and to do as much research on the new treatment as possible (online and in reputable M.E. books) before you start taking it. Once you’ve taken it for long enough to see if it is working, withdraw the treatment and see what happens; see if the benefit disappears. That way you’ll know exactly what the benefit is of every treatment you take and that you aren’t wasting any of your money.

Click here to download a free M.E. medication – and medication budget – chart in Word format.

Measures: 1 gram (g) is equal to 1000 milligrams (mg). 1 milligram (mg) is equal to 1000 micrograms (mcg).

Note: Many of the links given in the Treatment section are to VRP or iHerb products; see the section below to read about the VRP and iHerb affiliate programs and how up to 15% of the total cost of some of your supplements and vitamins could be donated towards funding M.E. research and advocacy!

Additional notes on this text

Sections include:

  • What is the prognosis for ME?
  • Insulin resistance and M.E.
  • Can I or should I still donate blood if I have M.E.?
  • Are there other tests that I can have done privately that can help with determining the best treatments?
  • Am I at a greater risk of contracting cancer because I have M.E.?
  • What if I only have a tiny bit of money to spend on treatment, or almost none?
  • Buying, cooking and preparing food is so hard (or impossible) and makes me so much more ill, how can I try to minimise this?
  • Chewing and swallowing food is very hard for me, what can I eat and/or how can I modify food so I can handle it better?
  • Weight loss and M.E.
  • Some additional notes on applying for benefits/welfare/disability support

 

What is the prognosis for ME?

Myalgic Encephalomyelitis has many different and unpredictable outcomes. The illness can generally be; progressive or degenerative, chronic (and relatively stable), or relapsing and remitting. In some cases M.E. may also be fatal. Unfortunately the myth that ‘everyone recovers eventually’ is just not true for M.E. patients, but many patients are lucky enough to experience some level of improvement over time, and so there is reason for hope. (Everyone will recover eventually from various post-viral fatigue syndromes, but M.E. is an entirely different and unrelated disease to PVF syndromes with different symptoms, onset, pathology and prognosis.)

Full spontaneous recoveries, where the person is restored to normal functioning are thought to occur in up to 6% of patients (although experts warn that these are remissions rather than true recoveries and that relapse is unfortunately a future possibility for these patients). A significant number of patients will experience partial spontaneous remissions; where functioning improves markedly but there is still a mild to moderate level of disability present. (‘Spontaneous’ means that these improvements were natural, and not the result of treatment.) Around 25 - 30% or more of cases are progressive, degenerative or extremely severe. (The best way to look at this is that most cases are NOT progressive, degenerative or extremely severe…and even if you are severely affected, improvement IS possible for you in the future; particularly if you can strictly avoid overexertion. Dr Dowsett says that stabilization is possible at any stage of the disease so long as there is appropriate rest and treatment).

For what it is worth, every single person I’ve spoken to about it, that has been lucky enough to have recovered 70% or more of their pre-illness function was diagnosed early, treated appropriately and able to rest adequately in the early stages of the illness. The most severely affected sufferers too are almost always those who were the most active (either through ignorance or by force) in the earliest stages of their illness, and thereafter (myself included). Avoiding overexertion is almost EVERYTHING when you are looking at getting your best possible prognosis with M.E. This can’t be stressed enough. The fact that we are limited in how active we can be with M.E., is a protective mechanism that stops us from causing further – and even more permanent and severe – bodily damage. M.E. is NOT FATIGUE and should never be treated medically in the same way as ‘fatigue.’

If you are able to, it is a good idea to monitor and keep records of your symptoms and the severity of your illness over time. Remember that it is not safe to assume that all new symptoms will be M.E. as unfortunately having M.E. does not make you immune from developing other illnesses.
  • A note on ‘dual’ diagnoses in M.E.: Despite the fact that severe pain is a well known and very common symptom of M.E. many M.E. sufferers who have pain are told that they now also supposedly have ‘Fibromyalgia.' But if pain is a recognised symptom of M.E. then how does an additional Fibromyalgia diagnosis made purely on the presence of pain make sense? Patients who have Fibromyalgia and patients with primary M.E. can be easily distinguished from each other with various tests (and other means), so what do tests show in patients who supposedly have both?
         Interestingly, when patients have both illnesses the test results given are the ones for M.E. only. So do these M.E. patients really also have Fibromyalgia, or do they just have severe pain as part of their M.E.? As you might expect, these test results strongly suggest the latter.
         The same is true of multiple chemical sensitivity syndrome (MCSS); symptoms of chemical sensitivity are part of the core symptoms of M.E. and have long been associated with M.E.(as well as with several other autoimmune illnesses such as multiple sclerosis and Lupus) and so there is no need for an additional diagnosis of MCSS to be made. Just because you may fit a definition of Fibromyalgia, or MCSS, or irritable bowel syndrome (IBS) this does not mean that your symptoms are caused by the same aetiological or pathological process, or will respond to various treatments the same way, or will have the same prognosis as those people who have primary Fibromyalgia, MCSS or IBS, or anything else. See     M.E. and other illnesses and The misdiagnosis of CFS for more information.
  • See Myalgic Encephalomyelitis: The Medical Facts for more on the prognosis of M.E. and the 3 Part Myalgic Encephalomyelitis Ability and Severity Scale: a tool for monitoring the course of your illness over time.

 

Insulin resistance and M.E.

Weight loss and weight gain independent of dietary changes are both common in M.E. but if you seem to be suddenly gaining more weight (particularly around the stomach area), you may have developed a problem with insulin resistance (in women this may also be diagnosed as polycystic ovarian syndrome or PCOS). The symptoms include: tiredness, intestinal bloating, hypoglycaemia, feeling sleepy or passing out after eating high carbohydrate foods such as pasta or desserts, feeling hungry or craving something sweet after you’ve just eaten, weight gain particularly around the stomach or buttocks, feeling agitated and moody with almost immediate relief once food is eaten and/or dark patches of skin (especially around the neck).

Excessive intake of carbohydrates is usually what causes insulin resistance but insulin problems are also a part of M.E. (abnormal glucose tolerance tests are very common in M.E.) Whatever the cause, insulin resistance is a pre-diabetic condition which can and should be tested for and which if not treated can lead to type 2 Diabetes. Treatment involves lowering your insulin levels with a controlled carbohydrate diet (traditional low fat/high carbohydrate diets will exacerbate the problem).

 

Can I or should I still donate blood if I have M.E.?

In some countries M.E. is not specifically listed as an exclusionary illness which prevents you from legally donating blood while in other countries M.E. sufferers are specifically banned. If you have M.E. (or even suspect you have M.E.) however you should not donate blood whatever the law states because of the possibility of infectious agents being passed on through your blood. This is a real possibility.

 

Are there other tests that I can have done privately that can help with determining the best treatments?

A number of tests are available privately (ie. not covered by health funds or government etc.) that can help you and your doctor learn more about how best to treat your illness and how it has affected your body, and just as importantly; which treatments to avoid.

Note that these tests are not at all useful for the diagnosis of M.E. and abnormalities in these tests are seen in many different illnesses. They are to help with determining treatment only.

While many of these tests can be organised without the aid of a doctor, you really do need the help of a qualified doctor to help interpret the results of these tests, if at all possible. Some tests can be done entirely by post, while others unfortunately require visits to blood drawing centres etc.

Tests which may be useful include (note that this is not a complete list of tests, and that I cannot guarantee the quality of any of the companies which provide these tests whether listed here or not):

  • Hair mineral analysis (including testing for heavy metals such as mercury).
  • IgG food allergy tests test for around 100 different IgG food allergies, by blood test. Tests must be quantitative; they must tell you not just that you have a certain allergy, but how severe it is also. (The IgG/IgE test offered by US company VRP is around half the price of the one offered by York Labs in the UK.) There is also the ALCAT - Food Allergy & Chemical Sensitivity/Intolerance Test.
  • SpectraCell blood tests can identify missing vitamins and minerals for targeted nutritional replacement.
  • Comprehensive Detoxification Profile: This test analyses saliva, blood, and urine after challenge doses of caffeine, aspirin, and acetaminophen, to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body. This profile includes markers for oxidative stress and important antioxidants.
  • Standard Detoxification Profile: This test analyses saliva and urine after challenge doses of caffeine, aspirin, and acetaminophen, to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body.
  • DetoxiGenomic Profile: This test evaluates SNPs associated with increased risk of impaired detoxification capacity especially when exposed to environmental toxins. It also identifies individuals potentially susceptible to adverse drug reactions.
  • HEMEX blood clotting tests and Homocysteine blood tests (link 2)
  • Comprehensive digestive stool analysis, Urinary organic acids test and Urine toxic metals test.
  • Oxidative Stress Analysis, Blood & Urine: This test identifies markers of hydroxyl radical activity, urine lipid peroxides, reduced glutathione, superoxide dismutase, and glutathione peroxidase, following a challenge dose of aspirin and acetaminophen.
  • There is also a Blood type test, Intracellular red cell magnesium testing, AA/EPA ratio tests, urine or saliva pH test strips (also available from VRP and iHerb. VRP also offer comprehensive hormone panel testing including cortisol, environmental allergy and organic acid urine testing, and C-Reactive protein testing).
  • You might also want to look into genomic testing for methylation problems and how appropriate the Yasko protocol might be for you. (Although as this test is so extremely expensive, some suggest trying the protocol and just seeing if it works for you. It includes a stone age diet, a good multi-vitamin and mineral supplement with no copper or iron in it, essential fatty acids, vitamins C and D, D-ribose, CoQ10, Acetyl L-Carnitine, NAD, Phosphatidyl serine complex, probiotics, and help for methylation with 5mg of B12 daily as cyanocobalamin and hydroxocobalamin and 800mg folic acid as methyltetrahydrofolate although M.E. patients in particular need to start at much, much lower doses and may only ever be able to tolerate far lower doses than this.)

 

Places to source tests include: Genova (formerly ‘Great Smokies Labs’), Life Extension foundation (US patients only and only those who can get to blood drawing centres), VRP, York Labs and Holistic Heal. The last three companies listed let you do some or even all of their tests using postal kits that can be sent all over the world. All you do is a simple finger prick blood test with the materials provided, and then send it off for testing. Just make sure you follow the instructions carefully, and post the sample so that it arrives within the specified time frame.

  • Tests of immune function may be useful in letting you know how well an immune system supporting treatment is working, these include tests of: NK cell levels and NK cell cytoxicity, T lymphocytes and circulating cytokines. These are tests that are available only through your doctor.
  • The Cell-free DNA in blood plasma test measures cell degeneration. Low levels are found in healthy people, and increases are associated with serious disease (eg. M.E., cancer, stroke, etc.). Cell degeneration is one measure of how ill you are, but most/all people with M.E. will have increased cell degeneration, so it's not clear whether this test is necessary. Similarly, C-Reactive Protein tests measure the total amount of inflammation within the body. This will likely be high in M.E., but also in many different diseases.Mitochondrial test are not included on this list as every M.E. patient has significant mitochondrial abnormalities and should be taking some type of mitochondrial support supplements. (It is also true that patients with many different diseases misdiagnosed as ‘CFS’ will have some level of mitochondrial abnormalities – as Dr Myhill’s work shows – and so positive tests for mitochondrial abnormalities cannot be used to prove a M.E. diagnosis. Dr Myhill unfortunately (and bizarrely, considering her extensive exposure to legitimate research and genuine M.E. patients) makes little if any distinction between various unrelated ‘fatigue’ patients misdiagnosed as ‘CFS’ and genuine M.E. patients – to the detriment of both patient groups.)

 

Am I at a greater risk of contracting cancer because I have M.E.?

Sadly, there is some evidence to suggest that this is the case. BUT it is good to know about this possible increased susceptibility to cancer, so that we know how important it is to do what we can to protect ourselves beforehand. That means avoiding known carcinogens such as air pollution, cigarettes and alcohol, high levels of EMF radiation, deep-fried or burnt food and chemicals in food (eg. nitrates) and personal care products (eg. SLS and some hair dyes), etc., investigating and taking substances which may have anti-cancer properties such as antioxidants (vitamins A, C and E, selenium, zinc and mixed natural carotenoids) and avoiding overexertion (as this increases free radicals). In essence, the things that reduce your cancer risk are also the same things that are involved in treating M.E. in the best way possible anyway.

 

What if I only have a tiny bit of money to spend on treatment, or almost none?

So many of us are living in real poverty, and it is hard to see how this will change while we have so few genuine advocacy groups and while so much so-called ‘activism’ is supportive of the very same propaganda causing and perpetuating the abuse and neglect.

If you only have a few dollars spare a week to spend, probably your best bet would be to buy a good multivitamin and mineral supplement that contains decent amounts of vitamin A, the B vitamins, vitamin C, D and E, as well as zinc, selenium, molybdenum, mixed natural carotenoids and so on. The best I have found so far is Life Extension two-a-day multivitamin and mineral supplement. It costs 22c (USD) a day and so $1.63 a week, and contains far greater amounts of most vitamins and minerals than most other products, and is cheaper than many other brands while still being produced by a good quality company. (The only downside is that is contains the standard type of folate, but then so do 99% of multivitamins).

If you had $15 a week to spend, perhaps you could also add 1000mcg B12 as hydroxycobalamin (91c), 200mcg folate as L-5-methyl tetrahydrofolate (50c), 1.8g of EPA/DHA from fish oil ($3.30), 50mg CoQ10 as ubiquinol ($2.80), 400 IU natural vitamin E (49c), a daily probiotic capsule ($2.50), 100mg Silymarin (98c), 1000mg vitamin C powder with bioflavonoids (35c) and 1000mg Hawthorn ($1.80). If you had a bit more money you could add a few more things, and if you had less money to spend you’d have to take off a few things (obviously). If you only have a small amount to spend, it is of course more important than ever to try to make sure you are getting the ‘most bang for your buck’ so make sure you take only one new supplement at a time and see what really works best for you.

You can save a lot of money on supplements by buying high dosage capsules or tablets and then splitting them, and by buying supplements in powder form and either making your own capsules or drinking them in water or in a protein shake. Supplements widely available in powder form include: the B vitamins, vitamin C, Carnitine and Acetyl L Carnitine, Lecithin, various amino acids, prebiotics (FOS), Chlorella, Calcium and Magnesium. You can save sometimes up to 50 – 75% off the usual price by buying pure powders, you also avoid synthetic fillers.

If there are gaps in your supplement regime it is also more important than ever that you try to fill them with your diet. Make everything you eat work for you and avoid empty calories and spending ‘wasted money’ on foods that don’t give you much real nutrition. Instead of drinking normal black tea, drink green tea, or ginger tea, or ginkgo tea. Instead of eating sugar-filled (or chemical filled) flavoured yogurt, eat a piece of fresh fruit. Instead of a flavoured cream cheese dip with crackers, buy or make a bean dip, avocado dip or salmon dip and eat it with fresh crudités. Instead of corn flakes or sultana bran (or other heavily processed sugary cereal) eat organic steel cut oats as porridge or muesli. Instead of reconstituted low quality meat in the form of sausages, chicken nuggets, fish fingers, or pre-prepared chicken schnitzel, eat fresh or tinned salmon or fresh lightly cooked lean beef or chicken. Instead of mashed potato, have a bowl of spinach with pine nuts, or a vegetable stir fry. Instead of rice cakes or crackers, or corn cakes, eat some fresh unroasted nuts and seeds. You get the idea!
  • Buying the cheapest brands can be a false economy when the supplement industry isn’t well regulated. It is best to stick to quality brands as much as possible otherwise you might save a bit of money but end up having supplements which don’t contain anywhere near the amount of active ingredients as stated on the bottle. (I tend to buy almost all of my supplements from Life extension foundation, VRP, Source naturals and Metagenics, although of course there are other good quality brands out there.) Look for brands which make a point of advertising the quality of their products and say that they are tested for potency, and that give you more than just the bare minimum amount of information about the supplement (and how it has been produced). Buying better quality brands doesn’t necessarily mean more expense, often you find that the good quality brands are very competitively priced or even much cheaper than some other brands.
  • Multivitamin and mineral supplements are such good value, if you have a very limited budget you might consider taking 3 a day instead of the recommended 2, etc. Just make sure that there isn’t too much of one ingredient to make this safe, and that you also take into account all your other supplements.

 

Buying, cooking and preparing food is so hard (or impossible) and makes me so much more ill, how can I try to minimise this?

It’s impossible to offer suggestions that will suit all different ability levels and living situations etc., but some ideas of where to start might include:

Shopping ideas:

  • See if you can order your groceries online and have them delivered. (See too if you qualify for any type of help; for a paid carer for part of the day or ‘meals on wheels’ or similar.)
  • If you can’t get to the shop as often as you’d like, make sure you have a good stock of tinned food and frozen meat etc. on hand so that you can put off shopping if you are exceptionally unwell. Good choices would be frozen peas, frozen meat, tinned fish, dried lentils or chick peas, tinned or dried beans, frozen spinach, tinned fruit in juice (no added sugar) or frozen fruit or some dried fruit, oats, millet, rice etc. and lots of nuts and seeds and good quality dark chocolate or raw cocoa nibs. Generally speaking, frozen vegetables are more nutritious (and often taste better) than tinned. You could set yourself up to only need to shop once a month or less if you eat entirely from tins and packets and from the freezer.
  • See if shops have a motorised wheelchair you can use while you are shopping.
  • Buy in bulk where appropriate to save money and effort. This can save a lot of money with meat especially. Buy big meat trays and freeze it in individual one or two meal sized servings.
  • If anyone offers you help, take them upon it and ask them to shop for you or cook for you either on a regular basis or if they would be on call for when you are at your most ill.

Cooking/food preparation ideas:

  • Make your lunch and dinner (and maybe breakfast too) about 20 or 30% larger than you need, and then eat the leftovers later. That way you get six meals out of three (which is really helpful when so often M.E. patients need so many small meals per day to combat blood sugar problems and other metabolic problems).
  • Make large batches of soup or casseroles and freeze leftovers in meal sized containers to be reheated later (either to eat over the next few weeks or to have there in case of emergency). Perhaps you could have one day a week that you spend doing your weekly cooking, or similar.
  • Make a big batch of coleslaw or three bean salad and eat it with each meal for a few days. Have it with either some just cooked fresh meat, or a tin of fish or similar. (If chewing is difficult, use a food processor to make the cabbage etc. in the coleslaw very thinly sliced.) If you have oats for breakfast, make enough for 3 or 4 days at a time and store it ready to serve in bowls in the fridge. You could also do the same with brown rice so you can add a small amount to each of your dinners for a few days.
  • Cut steak or chicken fillets in half so they are half as thick, this way they’ll take less than half as long to cook.
  • Some quick meal ideas with chicken: 1.) Roll a split chicken fillet in spices (turmeric and cumin, or mild paprika etc.) and cook lightly in coconut oil. While the chicken is cooking, roughly cut up your veggies (eg. cauliflower and broccoli florets) and cook them for a minute or so in the same pan as the chicken once the chicken is cooked. 2.) Cook chicken and veggies as before, except without using spices, and instead serve the chicken with a dipping sauce (eg. cranberry sauce, or salsa).
  • Some quick meal ideas with beef: 1.) Cook a split steak lightly in coconut oil. While the steak is cooking, roughly cut up your veggies (eg. cauliflower and broccoli florets) and cook them for a minute or so in the same pan as the steak once the steak is cooked. Serve the steak with or without some sauce on the side (eg. tomato). 2.) Cook steak and veggies as before, except marinate the steak the night before to make it more tender or add spices while cooking. If it was easier for you, you could also just microwave the vegetables briefly instead of stir frying them.
  • If you often cook the same sized bits of meat in the same way, you could even put a timer on for when it is time to turn them. You could put the meat on, put the timer on and then spent a few minutes roughly cutting up your veggies while lying down. When the timer goes off, get up to turn the meat over and then rest and lie down for a few minutes before getting up when the timer goes off the second time to put the meat on a plate and lightly cook the veggies and then pour them over the meat to serve. (And then go lie down again to eat!) You could also cook three or so of these chicken and steak meals described above at a time and eat them over the next few days, perhaps reheating only the vegetables where appropriate (as sometimes microwaved meat tastes and smells awful!)
  • You could cook a roast chicken or two on the weekend and eat it in different ways for the next 3 or 4 days. (eg, cold chicken salad, chicken with cranberry sauce, or chicken reheated in a spicy sauce.)
  • If you cook the same things a lot, add variety with different spices. Spices are better than sauces generally, they are cheaper and last longer and are often additive free. Don’t forget to add salt where appropriate too, it enhances flavour and also has health benefits.
  • You may find one dish dishes such as stews and casseroles are easiest, where everything cooks together.
  • If you buy a slow-cooker, you can put the meat and vegetables (or lentils) in hours earlier than you want to eat, and there is no standing up and stirring to do etc. Cut up the veggies lying down and/or at your best time of day (and then put them in the fridge) or you could even leave everything almost whole and it’d still all work out. Just cut whole carrots into 3 or 4 pieces for example and cut chicken fillets into two. Meat comes out very tender in slow cooker is another advantage, making it easy to chew and digest. If you can, put veggies in later so they don’t get too mushy (unless you like that).
  • In an ideal world, nothing would be microwaved, but of course this is the easiest cooking method if you are very ill and so all we can do is minimise it as much as possible and try to only lightly cook veggies with it so as not to destroy the enzymes and vitamins more than we need to. Make sure you always only microwave using microwave safe glass or ceramic dishes and never plastic ones (or with plastic wrap on).
  • Get free recipes online at www.zonediet.com

Drinks and water, and miscellaneous:

  • Keep a water jug near your bed. You might also like to have extra water bottles/jugs, enough for a few days so you don’t have to cart it in as often. Pouring out four glasses of water twice a day can sometimes be easier than standing up to pour water on eight separate occasions.
  • Use a straw to drink and save valuable being upright time.
  • Boil the kettle once and then put a few cups of herbal tea in a thermos you can drink from for hours afterward. You could also reheat soup once and put the leftovers in a thermos ready to eat as a preheated snack later.
  • Frozen dinks are essential when it is very hot. Freeze a water bottle overnight.
  • Buy special arthritis friendly cutlery if you think it will help. Make sure you have good sharp knives, both to cut up your raw fruit and veg and meat with, and to eat your meal with. The amount of muscle powder needed is so much less when you have good knives so they are essential for M.E. sufferers.
  • Write lists about what leftovers you have in the fridge and freezer and when you cooked them, make notes about what you need to buy next time you shop and about what you will eat for the next week or month. Whiteboards are ideal. You could even write up a weekly chart and eat the same things on certain days of the week so you don’t have to think about what to eat each day. Monday to Wednesday you could have oats for breakfast, beans for lunch and chicken for dinner. Thursday to Sunday you could stick to millet for breakfast, lentils or chick peas for lunch, and either red meat or fish for dinner. For some this would be too boring, but if you are very cognitively impaired, order and routine and lists can be essential.
  • If someone else cooks for you, write lists clearly stating what you can and can’t eat.
  • Use reusable ‘shower cap’ type elasticised plastic covers when you put foods in the fridge instead of standard cling film. They are easier to use and cheaper. You could also use Tupperware or similar.
  • Keep extra cutlery etc. in the room you eat in to save making repeat trips to the kitchen.
  • Keep everything in the same places so you don’t waste time looking for things.
  • If you can, put your food on a tray to carry it to your room or table so you only have to make one trip. If the tray is hard to carry, see if you can get a small wheeled table or trolley to put it on.

Emergency foods:

  • Keep a stash of snack foods near your bed in case you need food quickly or are too ill to get up. Good choices would be nuts (and nut butters), seeds, dried fruit such as apricots, berries, coconut and apple (you could make your own tasty trail mix containing all of these ingredients), fruit (apples will keep for a while), a protein shake* ready to go that just need water added, tins of fish and a bowl and fork (and maybe a lemon to squeeze on top of it to make it less fishy), good quality 85% cocoa dark chocolate. You could have raw oats by your bed, and pour water on them to soak them ready for eating if you know you wont be able to get up for a while. If you needed to, you could eat all your food this way.
  • Keep some hummus dip in the fridge or freezer for emergencies, plus tins of baked beans, tins of fish and so on (as listed previously). You can also freeze cheese. Hummus with raw carrots or celery can be quite tasty, and fish eaten straight from the tin can be quite nice as well, especially with a squirt of lemon juice on top (either fresh or bottled). Oats can also be made with little effort by soaking them in water instead of cooking them. If you are very ill, you might like to consider having a small fridge and/or kettle or microwave in your bedroom (if you can stand the noise) although make sure it isn’t too close to where you lie.
  • Try to make sure you have some frozen meals in the freezer ready to go in case of emergency (if you have good periods enough to be able to prepare for later in this way).
  • If you are desperate and decide to order a fast food delivery, get a whole chicken that you can make several meals from, and serve it with microwaved frozen peas or tinned veggies. Don’t waste money buying overpriced side dishes and drinks etc.
  • More tips are available on the Practical Tips page. If you’ve tried everything and are still having real problems, you may unfortunately require tube feeding.

 

Chewing and swallowing food is very hard for me, what can I eat and/or how can I modify food so I can handle it better?

Obviously, before you go on to having liquid meals, you’d want to try modifying normal foods first; mashing veggies (pumpkin, turnips, carrots etc.) and eating meat either blended up or minced. Dishes with spiced minced meat in them and veggies cooked for long enough to be soft can be ideal. You could also try nut butters instead of nuts (eg. almond and cashew nut butters) and mashed boiled eggs, plus mashed or processed beans and lentils in dips and curries. You could also:

  • Try using a slow cooker to cook meat and veggies etc. until they are very soft. Make up large batches of stews etc. and freeze them in meal-sized batches either to eat over the next few weeks or to have there in case of emergency.
  • Make tuna patties, or chicken patties and so on, with minced meat and spices etc. These can be easier to chew and to cut up than non-minced meats.
  • If normal mashing and slow-cooking isn’t enough, try blending food even finer using a food processor.
  • Eat dips made in the food processor containing lentils and beans and so on. You could serve them with mashed veggies.
  • Look up lap banding sites for food ideas as often those with lap bands need mushy foods.
  • If you cook the same things a lot, add variety with different spices. Don’t forget to add salt where appropriate too (to enhance flavour and also for its health benefits).
  • Make sure food has fibre, protein and fat in it in the right ratios so that it is satisfying, and not too much high GI/GL carbohydrate.

If this isn’t enough and you need more liquid meals, there are a number of things you could try.

Products like Ensure (or Boost or similar) are commonly recommended to all sorts of ill people but most of them are really not good for you. They’re just very expensive sugar water with some low quality protein and vitamins added. (One article I read said you’d be just as well-off drinking a can of coke and having half a cheap multivitamin!) They are also full of all sorts of nasty chemicals, and not only not very filling but can actually make you even hungrier afterward. They also lack many important nutrients and fibre and the sugar in them can cause a number of problems.

A far better quality meal replacement, especially for those with extensive food allergies, is Alpha ENF. I have been told by one M.E. patient (that was severely allergic to MSG and to all foods except rice and chicken) that it was the only type of meal replacement or protein shake that she could tolerate. (The product is hypoallergenic, although not 100% allergy safe as this isn’t possible.) Note that the product is not very high in protein compared to carbohydrate and so this may also cause problems for some sufferers, but Alpha ENF sounds well worth a try if you have need of such a product – and there is also a pure protein/amino acids version available, plus a sugar free version. There seem to be no other comparable products of this type. If you have extreme allergies this product can be a sole food source.

Probably one of best ways to start is too look at what a normal whole food diet contains and try to emulate that as much as possible rather than looking for an all in one heavily processed product that probably costs a fortune and delivers far less than promised. Ideas include:

  • Buy a good quality protein powder*, and mix it up with a banana or berries, and a teaspoon of olive oil plus some flaxseeds for fibre.
  • You could try some of the organic tinned soups available (some organic frozen meals can also be okay as you check the labels).
  • In addition to vegetable powder, you might like to try super green food powder and similar. These contain extracts of many different fruits and vegetables etc. and are high in antioxidants and other nutrients. (Although if you have a real problem with allergies, you will be better off buying ingredients or supplements individually so you can see exactly what you can and can’t tolerate).
  • Make a clear broth from beef or chicken stock, as an alternative to protein powder*.
  • Uncooked oats can be added to protein shakes* for added fibre. Blend well.
  • Don’t worry about buying protein powders* with added vitamins, take a multivitamin tablet instead. The ingredients will probably be cheaper and of better quality. If you do take anything with added vitamins in it, make sure this doesn’t mean you need to adjust your medications/supplements.
  • Again, make sure food has fibre, protein and fat in it in the right ratios so that it is satisfying, and not too much high GI carbohydrate. Include as much real organic whole food as possible. Try to eat at least 3 decent serves of protein a day, a small amount of good fats with every meal, and at least 5 – 7 serves of fruit and vegetables each day along with a small amount of low GI and GL grains.

No matter how balanced and nutritionally dense your liquid meals are, sadly you will possible always stay feeling not quite satisfied, as our body senses when we chew and this sends signals indicating fullness to the brain and so if we don’t chew our food, we wont feel as full no matter what we eat (according to new research). But at least having enough fat, fibre and protein etc. in your meals is going to be far better for you and more filling than drinking sugary meal replacement drinks. Make sure you eat at least every 2- 3 hours too, don’t let yourself get too hungry (if possible).

There are no perfect answers of course, all we can do is the best that we can at the time with what resources we have. The very best of luck to you in working your diet out (...and bring on the day there are healthy, filling and inexpensive ‘food pills’ for us all so we don‘t have to work all this out anymore! We wish! Sigh. Or better yet, new genuine M.E. research finally and a true M.E. cure...)

  • What sort of protein powders or shakes are best?* Protein powders can be made from cows’ milk (undenatured or heavily processed), goats’ milk, or from peas. There is also egg white protein powder, brown rice protein powder, soy protein powder and liquid protein supplements and hemp protein powder. There is a lot of conflicting information out there about which protein shakes are best and which need to be avoided. Many articles say that most protein shakes on the market contain free glutamates and so should be strictly avoided as they can cause serious neurodegeneration, but they are somewhat vague about which ones ARE safe.
         What we definitely want to avoid are overly or highly processed powders, such as those that are hydrolysed and/or ultra pasteurised. The article     The Overlooked Role of Chronic Infection in Neurodegeneration and Its Reversal Using Nutraceutical Agents recommends only pesticide-free whey protein produced solely by ion-exchange (yielding 25% glycomacropeptides for unparalleled hormone, immune and neurological support). This includes products such as Life Extension’s undenatured whey protein. Undenatured whey protein has a number of benefits for the immune system but must be started very slowly, as it can cause relapse in some M.E. patients and so may not be tolerated at first, or at all. Conversely, some M.E. patients report an improvement in their overall condition with this type of protein powder.
         Others recommend hemp shakes such as the one made by     Nutiva brand, as the powder is only very minimally processed, while others say that Alpha ENF is a standout product and far better tolerated than many other powders and is also hypoallergenic (you might prefer the protein based version). So one of these three may be the ones you might like to try first, depending on your specific needs. A protein powder made from goats’ milk that is organic and minimally processed may also be a good choice, such as Jarrow Goat Milk Protein.
             It is very hard to be sure exactly which other shakes are safe from free glutamates and other problematic MSG-like ingredients and which are not, unfortunately. It is hard to find a clear definition of what is minimally processed and what exactly isn’t, and where the cut off point is. Another problem is that many brands give you insufficient information about what sort of processing their product has undergone. (If you have more detailed information on this topic please let me know.)
         Other general rules are to get unflavoured powders if you can to avoid the extra added chemicals, avoid products with added sugar or Aspartame and always look for non GMO and organic products. Start with small containers of each powder until you find the one you tolerate best, then buy in bulk to save money if possible.

 

Weight loss and M.E.

M.E. makes gaining weight extremely easy for many of us, unfortunately. Losing excess weight is important in M.E. due to the cardiovascular aspects of M.E. Excess bodily fat can also promote higher levels of inflammation. If you need and want to lose weight, this must be done very slowly, just 0.5 – 2 kg or 1 – 4 pounds a month roughly at most, and without causing any hunger or weakness or increases in symptoms (and of course, without increasing activity levels beyond your limits, or at all). To lose weight safely, reduce your caloric intake only very slightly and make sure your diet is well balanced (and not high in high GI/GL carbohydrate, as described above in the nutrition section), nutrient rich and based on whole foods (while avoiding MSG and Aspartame etc.) and eat small meals six or more times a day. In short, the same eating plan outlined previously. Again, see the ‘The Zone’ website for more information.

Fasting should be strictly AVOIDED by all M.E. sufferers (including juice fasts) as this can lead to severe symptom worsening/relapse or even be dangerous (as with similar diseases such as mitochondrial diseases). Tests which require fasting beforehand may not be possible for some M.E. patients.

Of course some M.E. sufferers instead have the at least equally difficult problem of needing to gain weight.

 

Some additional notes on applying for benefits/welfare/disability support

The rules and procedures for applying for and qualifying for social security payments due to illness vary considerably in each country and so a comprehensive analysis of all of them is another (very difficult) whole essay in itself. There are a few things that might be useful in many cases however, and these include:

  • Always keep photocopies of everything you send in for your own records (and in case they lose anything).
  • Having test results which show abnormalities can only help your claim so get appropriate testing done if at all possible. (This will also help you to help confirm your diagnosis if any doubt remained). See Testing for M.E. for details.
  • If the doctor who is helping you with your claim is a GP, it might be useful to ask this doctor to give you a referral to a specialist (one who is at least somewhat educated about M.E.) as this may carry far more weight. (Illogically, this will likely be true even if your GP is very knowledgeable about M.E. and has been treating you for years and if the specialist knows very little about M.E. and has only seen you for a few minutes!)
  • Keeping a daily activity log for a week or so may also be useful in making it very clear to everyone involved your exact level of disability and exactly how your illness affects your daily life.
  • When you fill in all the various forms which ask you to explain your level of disability and what you can and can’t do, remember that you should NEVER fill them in as if they were asking you about what you can do on your ‘best possible day.’ For example, if you are asked if you can leave the house and you say that yes you can, it will very likely be assumed that this is something that you can do easily, and even daily – without any real issues. This will cause very serious problems for you if the facts are that yes you can leave the house; but only about once a month or so, and only when you can have complete rest for a week beforehand and if even then you’ll also spend another two weeks collapsed and very ill from the outing afterwards. You get the idea. These types of forms typically do not allow for or understand the variability of M.E. (or any other illness) and so to avoid misunderstandings and dangerous (and utterly disastrous) overestimations by the relevant agency about your physical and other abilities, you must always fill in forms as if they were asking about what you can RELIABLY do; What are you able to do every day? What can you still always do even on your worst days? How much or what are you able to do each day without this activity worsening the severity of your condition over time?

 

In conclusion

Living with and coping with M.E. is no easy feat and so of course it is impossible to cover everything you could need to know in 14 pages (or even 114 pages) but hopefully every M.E. sufferer (and every parent of a child with M.E.) reading this will have found something here that perhaps you were not aware of before, and that is helpful in some way.

The very best of luck to you all.

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References

The following references have been used to compile the majority of the treatments section: Papers and lectures by Dr Richardson, Dr Byron Hyde. Professor Malcolm Hooper, and Dr. Paul Cheney, The United Mitochondrial Disease Foundation. Plus books such as: The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Verillo and Gellman’s Treatment Guide.

Plus general books such as The NEW optimum nutrition bible , The Anti-Inflammation Zone, The Brainpower Plan, Dr Atkins Vita-Nutrient Solution: Nature's Answer to Drugs and the excellent article The Overlooked Role of Chronic Infection in Neurodegeneration and Its Reversal Using Nutraceutical Agents (PDF), plus books and articles by Dr Amy Yasko.

Acknowledgments

A big thank you to all the M.E. sufferers who were kind enough to give me their feedback, opinions and advice on many of the subjects discussed in this text as I was writing it, you know who you are! A big thank you especially to Michael, Lesley, Jo and Peggy.

If you have any further suggestions for this paper, please send them by email.

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If you use one of the VRP links in this paper and make a purchase from the VRP site (or if you make a purchase from VRP and type in my affiliate number of 647871 when you order) 15% of the total cost of your order will be donated. The Nightingale Research Foundation run by Dr Byron Hyde will get 100% of all monies I receive through this affiliate program. (If enough funds are raised I may also donate some to the excellent 25% M.E. Group in the UK.)

This offer applies to new VRP customers only. It applies to all VRP products, but only for one year from your first date of purchase (after one year I’ll no longer receive 15% of the cost of your order). It is probably best to type in the affiliate number of 647871 in the appropriate box when you order, even of you have used one of the links here (just in case I’ve made a mistake with any of the links).

This could be a wonderful way for us to completely painlessly raise funds for M.E. research and advocacy. It goes without saying that you should only buy those products from VRP that you were going to buy anyway, and only if VRP offers you the best (or very close to the best) prices. (Also note that VRP do discounts of up to 30% per order if you buy in bulk. I make a big order every 6 months to make the best of these discounts and to save on postage).

I’ll keep you updated on how much money is raised through the site newsletter. Fingers crossed it is substantial! There is no better M.E. charity than the Nightingale Research Foundation and no better M.E. expert than Dr Byron Hyde M.D. and this is a way to really support them that will cost us NOTHING!

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Disclaimer

A Hummingbirds Guide to M.E. does not dispense medical advice or recommend treatment, and assumes no responsibility for treatments undertaken by visitors to the site. It is a research-information and advocacy resource only. Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.

Treating Myalgic Encephalomyelitis

There are 3 sections so far in Treating M.E.:

Section 1: Avoiding Overexertion Everything you need to know about the single most important thing you can do to give yourself the best possible chance at having your best possible prognosis. (on this page)

Section 2: The Basics (Or: 'Help, I have M.E.- what on earth do I do now? Help!!!') A guide to some of the basics you NEED to know to live with, cope with and to treat M.E. (on this page)

Section 3: Inappropriate or Harmful Treatments for M.E. - A CBT and GET Database The database contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients – as well as a large number of patient accounts of CBT and GET.