A Hummingbirds' Guide to M.E.

There are so many myths about Myalgic Encephalomyelitis and many of them are so widespread that it is not uncommon to read articles in the media composed ENTIRELY of such material. Articles which do not contain even one legitimate fact about the illness! Despite popular opinion however, there is an abundance of scientifically accurate information about M.E. that is freely available. It spans over 70 years and has been featured in prestigious peer reviewed medical journals all over the world.

Tragically however, this information keeps being blocked at every stage by the unscientific myths and propaganda created by vested interest groups. It is a victory of vested political and financial interests over ethics, science, logic, patient welfare, and REALITY.

What follows is a list of some of the most common myths about M.E.:

1. MYTH: M.E. is a new illness that appeared for the first time in the 1980s
2. MYTH: M.E. does not occur in outbreaks or epidemics
3. MYTH: M.E. is an illness whose primary and defining feature is ‘chronic fatigue.’
4. MYTH: Myalgic Encephalomyelitis and ‘CFS’ are synonymous terms
5. MYTH: People suffering with chronic fatigue have mild M.E.
6. MYTH: All studies or articles which use the terms CFS (or ME/CFS, CFS/ME, CFIDS or Myalgic Encephalopathy) are discussing the same patient group
7. MYTH: The 8 symptoms – along with fatigue – listed in the CDC’s 1994 Fukada CFS diagnostic criteria (short-term memory or concentration problems, sore throat, tender cervical or axillary lymph nodes, multi-joint pain, muscle pain, headaches, non-refreshing sleep and/or post-exertional malaise) are the symptoms which define M.E. Fitting the Fukada criteria for CFS, or any of the other CFS definitions, means that a persona has have Myalgic Encephalomyelitis
8. MYTH: Fibromyalgia and M.E. are basically (or exactly) the same illness: fatigue is the worst symptom of M.E. and in Fibromyalgia the worst symptom is always pain and that's really the only way you can tell which one you have. M.E. is also basically (or exactly) the same illness as Lyme disease, Multiple Chemical Sensitivity Syndrome and Gulf War Syndrome etc.
9. MYTH: M.E. is a mild illness from which every person will eventually completely recover and is never progressive or fatal
10. MYTH: M.E. has been scientifically proven to be caused by psychological factors. M.E. is a 'mysterious' illness with many 'medically unexplained' symptoms and seems to ‘transcend the boundaries between the body and the mind’ like no other. No research exists which shows that M.E. has a physical or organic basis
11. MYTH: M.E. is consequent from an organic (viral) trigger but the illness is short lived unless there are psychological and social factors which perpetuate the illness long term
12. MYTH: It is only recently that researchers have finally shown that M.E. has a physical or organic basis
13. MYTH: Only very mild abnormalities have ever been found in M.E. patients
14. MYTH: The only treatments shown to be useful in treating M.E. are CBT (cognitive behavioural therapy) and GET (graded exercise therapy). CBT/GET treatments are useful in 'rehabilitating' M.E. sufferers because M.E. is perpetuated by deconditioning and inactivity. These treatments are also completely safe and there is no risk associated with them for M.E. patients
15. MYTH: All laboratory tests will always come back normal in M.E. patients and so there are no tests that can be done which can confirm a suspected M.E. diagnosis. Diagnosis is extremely difficult
16. MYTH: M.E. is only a diagnosis of exclusion, a wastebasket diagnosis. It is not a distinct disease.
17. MYTH: M.E. can not be diagnosed until after 6 months have passed, M.E. is a gradual onset illness
18. MYTH: There are never any observable physical signs of illness in M.E.
19. MYTH: The symptoms and severity level of the illness remains constant in M.E. If a patient can do something once, they can obviously do it many times; if a patient can do something on one day, of course they will also be able to do it the next day too, or on any other day.
20. MYTH: Research into M.E. is well funded by government
21. MYTH: M.E. primarily or only affects white, affluent and well-educated women
22. MYTH: There are no children who have M.E.
23. MYTH: Most people (or everyone) with M.E. has a ‘type A’ or perfectionist personality and this has caused or perpetuated the illness
24. MYTH: M.E. can result from becoming run down physically or is the end result of high levels of stress, long term stress or childhood trauma or abuse
25. MYTH: M.E. can be caused by the Epstein-Barr virus, glandular fever/mononucleosis, Q fever, HHV6 or Ross River virus
26. MYTH: The term Myalgic Encephalopathy is more medically accurate than the term Myalgic Encephalomyelitis and so using the term Myalgic Encephalopathy is in the best interests of authentic M.E. sufferers
27. MYTH: All those advocacy organisations (and individuals) which publicly state that M.E. (or ME/CFS, CFS/ME or CFIDS etc.) is not ‘all in your head’ are trustworthy and are working for the benefit all M.E. sufferers and are a good source of information about Myalgic Encephalomyelitis.
28. MYTH: All those who state publicly that they believe M.E. to be a purely psychological or behavioural illness are basing their stance on a comprehensive and unbiased examination of the medical evidence and actually believe what they are saying. There is a legitimate scientific debate about whether or not M.E. is ‘real’ or if it is psychological or neurological.
29. MYTH: The name CFS was chosen in 1988 by a group of experienced M.E. clinicians who thought it was the most medically accurate name for the illness at that time
30. MYTH: It is the name CFS itself that is the cause of all the misunderstandings about the illness. If the name Myalgic Encephalomyelitis was renewed (for example) patients would automatically start to get the recognition and respect they deserve, more money for legitimate research and everything else they so desperately need
31. MYTH: Once we have enough hard science behind M.E. – in particular a single diagnostic marker for the illness – things will improve for M.E. sufferers and M.E. will automatically start to get the medical recognition and respect it deserves. (The problem is only that we lack enough science.)

To the M.E. patients reading this: were you surprised by some of them? The sad truth is that it isn’t just the general public that have been lied to repeatedly about almost every aspect of this illness; but every M.E. sufferer as well. The consequences of that for people with the illness, as we all well know, have been devastating. As Hillary Johnson, author of ‘Osler’s Web’ (a book which exposed the truth behind the US 1980s M.E. epidemics) writes:

There is no one individual who is going to fly in with a velvet cape on their back and save the day. Only the patients can, but it's going to take guts. When they start to demonstrate some guts, it's my guess that the researchers you so want to support you will line up one by one and start supporting you over time. Some kind of critical mass must be achieved, until there are more people standing on one side than the other, and the lie starts to crumble and the perpetrators will skitter away to higher ground.

Sources of M.E. information on this site which debunk all the myths listed above in more detail (and which are each fully referenced) include:

1. What is M.E.? A medical and political overview
2. The misdiagnosis of CFS
3. Myalgic Encephalomyelitis is not fatigue, or 'CFS' 
4. Smoke and mirrors
5. Putting research and articles on M.E. into context
6. Testing for Myalgic Encephalomyelitis
7. Why the disease category of ‘CFS’ must be abandoned
8. Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups
9. The effects of CBT and GET on patients with Myalgic Encephalomyelitis
10. The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List. 

The problem here is not a lack of scientific evidence, but that the evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests. This pretence of ignorance on behalf of Governments (and others) has had devastating consequences for people with M.E. and has also meant that the number of M.E. sufferers continues to rise unabated. The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop.

So please refuse to accept anything less than the facts about M.E. and encourage others to do the same. Knowledge is power.

The ‘CFS’ scam is tissue thin and M.E. is a serious and potentially fatal distinct neurological disease. These facts are very easily discovered if one merely takes a small amount of time to look at the actual evidence.