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.
(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:
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:
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.
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:
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.
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:
If that is too much to take in, a sample diet might look something like this:
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.
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!
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:
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.)
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:
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:
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:
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.
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:
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!).
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:
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.
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.
Examples of some of the treatment cautions etc. relevant to M.E. include:
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.)
Naproxen has been implicated in possible mitochondrial damage
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!Sections include:
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.
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):
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.
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, 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:
Cooking/food preparation ideas:
Drinks and water, and miscellaneous:
Emergency foods:
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:
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:
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...)
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:
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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To download other papers from this site, see the Document Downloads page.
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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.
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.
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!
If you have any questions about this program, please feel free to ask.
To start shopping at VRP click here then type in the names of the products you wish to purchase (or look at) in the search section at the top and then click go.
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.
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.