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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. 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.’ In other words:

• Chronic Fatigue Syndrome is a man-made construct created in the US in 1988. It is not a distinct disease, but a mere diagnosis of exclusion based on the presence of the symptom of medically unexplained fatigue. CFS cannot be diagnosed until after 6 months have passed. If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of ‘CFS.’ (The fatigue in ‘CFS’ must be ‘medically unexplained.’) The onset of ‘CFS’ may be gradual or acute. A diagnosis of ‘CFS’ does not mean that a person has any distinct disease, including M.E. In essence, every diagnosis of CFS can only ever be a misdiagnosis. ‘CFS’ is made up of people with a vast array of unrelated psychological and non-psychological illnesses. 2.54% (or more) of the population may qualify for a ‘CFS’ (mis)diagnosis (according to the latest CDC estimates).

• Myalgic Encephalomyelitis is a systemic acquired illness initiated by an enteroviral infection which is characterised by damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. The onset of M.E. is always acute. M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can always be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct. M.E. can occur in epidemic and sporadic forms and can be extremely disabling, or fatal. M.E. is a chronic/lifelong disease that affects adults and children. Fatigue is not a defining symptom of M.E., nor even an essential symptom of M.E. There are more than 64 M.E. symptoms ranging from mild, to severe to life-threatening. Fewer than 0.5% of the population has the distinct/testable neurological disease known since 1956 as M.E.

A correct M.E. diagnosis can only be determined by looking at legitimate descriptions and definitions of the illness, a specific series of tests may also be necessary to help confirm the diagnosis. 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.

The single biggest factor determining recovery and remission from M.E. 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. 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. This can only result in unnecessary relapses and so be counterproductive. Permanent damage (eg. to the heart) and disease progression may also be caused.

Acceptance of the limitations of the illness at as early a stage as possible is crucial. 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 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.

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. Educate those around you so that they will know better than to believe the baseless propaganda surrounding the illness
• 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 M.E. sufferers probably will be initially) and make your application.
• Find out about other services in your area that might be appropriate or that you might need.
• Support yourself emotionally; 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.
• 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.)

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 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. (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.

Most M.E. sufferers will experience food allergies and/or food intolerances as part of the illness and so will have to avoid certain foods. A rotation diet may also be necessary for some sufferers (where particular foods are eaten only every 4 days).

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.

It is also important that M.E. patients eat a varied diet full of nutritious whole foods, and low in sugar and processed foods. All food should be organic wherever possible, or at least very well washed or peeled where appropriate. Avoid aspartame and MSG.

Many sufferers will also do better on a higher protein and controlled carbohydrate diet (and by eating small meals every 2-4 hours). High carbohydrate diets and low salt or fat diets are not appropriate for M.E. sufferers, generally speaking. Try to have some protein, fat and carbohydrate with each meal or snack. 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.

(If you want a more detailed quick start guide, see ‘The Zone’ website.)

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. Treating the gut problems of M.E. is the first step to treating M.E. itself and cannot be ignored. The health of the gut affects our neurological health to a significant degree. Food is not merely fuel, it is MEDICINE.

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.

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.

Both traditional and complementary therapies can be useful in treating M.E. However, it is important to ensure that any practitioner 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 (they must be aware that M.E. is not ‘fatigue’ or ‘tiredness’ and treating it as if it were will be DISASTROUS).

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 well-read fellow M.E. sufferers.

Stress unequivocally does not cause M.E. but as with most illnesses, stress can exacerbate the symptoms of M.E. Try to learn 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.

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).

If you were to create a top 10 list of basic, important M.E. treatments, it would have to include: vitamin B12 (hydroxocobalamin) and folate (L-5-Methyl Tetrahydrofolate), Essential fatty acids, CoQ10 (ubiquinol), 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.

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

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.

Tests which may be useful include:

• 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. 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: and Standard Detoxification Profile:, Comprehensive digestive stool analysis, Urinary organic acids test and Urine toxic metals test and Oxidative Stress Analysis, Blood & Urine:
• 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 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.)

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 same propaganda causing/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.

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 21^st Century disease caused by the ‘busy stressful modern world’ 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.