General M.E. Quotes
Quotes by M.E. sufferers
Quotes from M.E. political discussion groups
On so-called 'fatigue' in M.E...
On the supposed role of 'stress' in M.E...
Quotes on the outbreaks (and infectious nature) of M.E.
Quotes from M.E. sufferers on the negative effects of CBT and GET
M.E. vs MS quotes
Quotes on 'Are we just marking time?'
Quotes on the problems with the so-called "Fair name" campaign
Quotes on the problems with the use of 'ME/CFS' by M.E. advocates
Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'
Before reading these quotes, please be aware of the following facts:
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research/articles as ‘only relating to ‘CFS’ patients’ (including those which describe those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies/articles refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research/advocacy.
Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research and articles referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.
Despite popular opinion, there is no legitimate scientifically motivated debate about whether or not M.E. is a ‘real’ illness or not, or whether or not it is ‘behavioural’ or has a biological basis.
What can trigger or cause the onset of Myalgic Encephalomyelitis? M.E. expert Dr Byron Hyde explains that: ‘[The] prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. The usual incubation period of the triggering illness is 4-6 days.
There appears to be somewhat of an occupational bias towards teachers (students) and health care workers in the incidence of Myalgic Encephalomyelitis cases (and outbreaks). These higher risk groups do not work in environments which are more stressful than the average job, but these are jobs which require higher rates of immunisation than others. This relationship with inoculation is often seen in infectious illnesses.
There is no link however between having M.E. and being a 'perfectionist' or having a ‘type A’ or over-achiever personality. M.E. is also not caused by a period of long-term or intense stress, trauma or abuse in childhood, becoming run-down, working too hard or not eating ‘right.’ M.E. is not a form of ‘burnout.’
Substantial evidence exists to show that it is simply not possible that somatisation, secondary gain, malingering, aberrent illness beliefs, too much focus on normal bodily sensations, irrational fear of exercise leading to deconditioning, being rich and white, being poor and from an ethnic minority, being lazy and unwilling to work, being too highly driven and perfectionistic and working too hard, faulty thought processes, lack of motivation, long-term stress, acute stress, abuse in childhood, a genetic inability to deal with normal levels of stress, inadequate coping strategies and contagious sociological hysteria – or any or the other ridiculous and often contradictory ‘theories’ put forward by these vested interest groups – play a role in causing or perpetuating authentic M.E.
The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ They are pure fiction. Strong evidence of the biological basis for the illness has existed since the 1930’s and 1950’s and more than 1000 good articles now support the basic premises of M.E. as a debilitating organic neurological illness. Thus this is not simply theory, but is based upon an enormous body of clinical information. Confirmation of this hypothesis is supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. Newer scientific evidence is increasingly strengthening this hypothesis. (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online]) M.E. is not ‘medically unexplained’ (or ‘unexplainable’) and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. These are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture (MESA 2005 [Online]).
The reality is that anyone, whether medically qualified or not, who looks at the worldwide published medical evidence on M.E. could not fail to recognise that the psychological or psychiatric theories could not possibly explain the many different and profound physical abnormalities seen in M.E. (nor the many other characteristics of the disease which are not consistent with psychological or behavioural illness). There are only two ways that a person could reach a different conclusion:
The disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes (etc).
It is a fact that the majority of M.E. patients are not in high-stress occupations as the popular press frequently suggests, but are teachers, nurses, physicians, and other health care workers. This group represents those most closely related to infectious illness, frequent immunisations and those most frequently immunised.
The Clinical and Scientific Basis of ME Dr Byron Hyde p. 115
Stress aggravates symptoms but does not cause them, a condition no different in [ME] from that in other illnesses. Walking on a twisted ankle may aggravate the pain but did not cause the twisted ankle originally.
Dr David Bell MD: A Doctor’s Guide to CFIDS
There appears to be somewhat of an occupational bias towards teachers (students) and health care workers in the incidence of Myalgic Encephalomyelitis cases (and outbreaks). These higher risk groups do not work in environments which are more stressful than the average job, but these are jobs which require higher rates of immunisation than others. This relationship with inoculation is often seen in infectious illnesses.
Paraphrased from The Clinical and Scientific Basis of ME Dr Byron Hyde MD
What can trigger Myalgic Encephalomyelitis? Veteran M.E. specialist Dr Byron Hyde explains that:
[The] prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. These are only the most common onset illnesses or symptoms of which there are several. The onset illness is associated with either a low grade or subnormal temperature, headaches, sometimes persisting and accentuated by movement with intermittent attacks of vertigo or dizziness. Evidence of a previous immune insult [such as a recent immunisation] is found regularly in both epidemic and sporadic cases. The usual incubation period of the triggering illness is 4-6 days. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the presumed infectious triggering illness. (1998 [Online])
The notion of stress as a "trigger" is erroneous. The body has a defence system. We do not get ill unless something actually invades the body, attempting to hijack or take over bodily systems.
What stress does is lowers the entry threshold. It's lowering the drawbridge. It's leaving a back door open. It's taking out the defences.
That's not a trigger.
The trigger is the troops (or in this case more likely spies and saboteurs) who can then gain entry into the vital control areas and start running the show.
Ken Davis *Speaking, Coaching, Training*
http://www.life-directions.net
As we all know from our experience with this DD there is a strong tendency to blame little understood illness on the victim or the victim's lifestyle (ulcers, gout and TB for example until proven wrong). My own theory is that this makes everyone else feel 'safe', that they have some control over the otherwise seeming randomness of being hit by illness (and of course it gives the medical profession the illusion that they know something in cases where in fact they know nothing).
Sue. ME sufferer
Further reading: The unbearable bunkness of stress by Barry Spencer and On the supposed role of 'stress' in the causation of M.E.