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Copyright © Jodi Bassett, April 2006
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!
For a long time this type of flawed and heavily biased information, or propaganda, was all that was (readily) available but thankfully this is no longer the case and we now have access to an abundance of more scientifically accurate information that could really change things for the better for those of us with M.E. Tragically however, this information keeps being blocked at every stage by all the old harmful myths and propaganda that are still being defended and promoted by so many. It is a real problem.
What follows is a list of some of the most common myths about M.E. – some will be obvious and well known to all but those very new to the subject while others are somewhat more complex:
- MYTH: M.E. is a new illness that appeared for the first time in the 1980’s
- MYTH:
M.E. never occurs in outbreaks
- MYTH:
M.E. is an illness whose primary and defining feature is chronic fatigue; it is a fatiguing illness
- MYTH:
The terms 'CFS' and 'chronic fatigue' are synonymous terms and may correctly be used interchangeably
- MYTH:
People suffering with chronic fatigue have mild ME
- MYTH:
All studies or articles which use the terms M.E. or CFS are discussing the exact same patient group
- MYTH:
There are 8 major symptoms which define ME/ICD-CFS* (along with fatigue) and these are the symptoms 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)
- MYTH:
Fitting the Fukada criteria for CFS (as described above) means that you have M.E.
- MYTH:
Fibromyalgia and M.E. are basically (or exactly) the same illness: fatigue is the worst symptom of ME and in Fibromyalgia the worst symptom is always pain and that's really the only way you can tell which one you have (as they are so similar). M.E. is also basically (or exactly) the same illness as Lyme disease and Gulf War Syndrome, Multiple Chemical Sensitivity Syndrome (and several other illnesses).
- MYTH:
M.E. is a mild illness from which every person will eventually completely recover and is never progressive or fatal
- MYTH:
M.E. has been scientifically proven to be caused by psychological factors
- MYTH:
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. Despite the wide array of symptoms no research exists which shows that M.E. has a physical or organic basis
- 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
- MYTH:
It is only recently that researchers have finally shown that M.E. has a physical or organic basis
- MYTH:
Only very mild abnormalities have ever been found in M.E. patients
- MYTH:
M.E. is strongly associated with (or related to) depression
- MYTH:
M.E. is perpetuated by deconditioning and inactivity
- 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. These treatments are also completely safe for sufferers and there is no risk of these therapies worsening the illness in the short or long term
- 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
- MYTH:
M.E. is only a diagnosis of exclusion, a wastebasket diagnosis
- MYTH:
M.E. can not be diagnosed until after 6 months have passed
- MYTH:
There are never any observable physical signs of illness in M.E., it is an ‘invisible illness’
- 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.
- MYTH:
Research into ME/ICD-CFS is well funded by government
- MYTH:
M.E. primarily affects white, affluent and well-educated women more than any other group
- MYTH:
There are no children who have M.E.
- MYTH:
Most people (or everyone) with M.E. has a ‘type A’ or perfectionist personality and this has caused the illness or made them more susceptible to the illness or perpetuated the illness
- MYTH:
M.E. can result from becoming run down physically or is the end result of high levels of stress, long term stress, burnout, adrenal exhaustion caused by stress or childhood trauma or abuse
- MYTH:
M.E. can be caused by the Epstein-Barr virus, candida, adrenal exhaustion or glandular fever
- MYTH:
There are no treatments available for M.E.
- MYTH:
The term Myalgic Encephalopathy is more accurate than the term Myalgic Encephalomyelitis and so using the term Myalgic Encephalopathy is in our best interests
- MYTH:
All M.E. Organisations and individuals which publicly state that M.E. is not ‘all in your head’ are trustworthy and are working for the benefit all M.E. sufferers
- 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
- 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 (given that fatigue was always the worst symptom and that so little was known about the pathology of this new illness at the time)
- 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
- 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 we will automatically start to get the medical recognition and respect we deserve
The truth is that every one of those statements is completely untrue despite how often they have been repeated to us and presented as 'facts'.
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.
It is not a matter of if ME sufferers will win the battle for formal recognition and fair treatment but of when; when is entirely up to us.
As Hillary Johnson, author of ‘Osler’s Web’ (a book which exposed the truth behind the US 1980’s 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.'
The onus is also on those in the media, doctors, lawyers and the general public to educate themselves about the facts of M.E.; to stop perpetuating myths about the illness and to do what they can to stop the needless and longstanding victimisation, neglect and abuse of some of the most vulnerable members of our society.
Sources of M.E. information on this site (which debunk all the myths listed above) include:
- Putting Research and Articles on ME into Context
- What is ME? A Medical and Political Overview
- M.E: The Medical Facts – A Medical Overview
- Fatigue Schmatigue
- Research and Articles
Most of these texts are also available as 2 page summaries for those who find reading difficult, all texts are also available in large print versions for those who need them. The most severely affected M.E. sufferers of course will be unable to read any of these texts; the responsibility therefore falls to the rest of us who can speak out, to do so just that little bit louder on their behalf - if we are able.
Once you have all the information; refuse to listen any more to the propaganda being spread about M.E. and set about sharing your newfound knowledge with as many other as you can. Refuse to accept anything less than the facts about M.E. and encourage others to do the same. Knowledge is power.
A text which explains the reality behind each of these myths individually, will be made available later in the year.
This text can be downloaded in a printer friendly Word format, PDF format or as a Large-print PDF
Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration.
*Note: The term ME/ICD-CFS may not be widely known as yet but it is used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems.
It is also important to be aware that in practice M.E. and CFS are not synonymous terms. For more information about how two completely unrelated health problems came to sometimes share a name click here.
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