Before reading this research/advocacy information given in the links below, please be aware of the following facts: 2. The research 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. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context. Unfortunately the authors featured on this page, in some articles, may support the flawed concept of 'ME/CFS' etc. It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'CFIDS' or 'ME/CFS' or the mixing of facts relating to M.E. and 'CFS' with the concept of 'ME/CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research 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 as ‘only relating to ‘CFS’ patients’ (including research which describes 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 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.
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. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research 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. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
Unfortunately the authors featured on this page, in some articles, may support the flawed concept of 'ME/CFS' etc.
It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'CFIDS' or 'ME/CFS' or the mixing of facts relating to M.E. and 'CFS' with the concept of 'ME/CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
Comment to CDC - CFS Draft Strategic Research Plan by John Anderson
CFS Patient Groups Cowed By The CDC? a critque by John Anderson
See also: 'Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability' by John Anderson
Response to the ProHealth Name Change Committee and the IACFS: John Anderson
A very small group of American "World Class Experts" are not representative of all the international experts, many of whom who studied the disease ME long before the CDC attempted to obscure it by creating the misnomer CFS in 1988 and the broadly defined criteria that excluded the cardinal features of Myalgic Encephalomyelitis, which had been known as Atypical Poliomyelitis prior to 1956 due to the similarities with Poliomyelitis. The proposed name change is another dangerous mistake like CFS that is not supported by international scientific consensus and must be stopped to prevent a repeat of the last 20 years of confusion.
A recent editorial states: "'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients." That misses the crucial point that they have been studying broadly defined CFS patients and not strictly defined ME patients - this false assertion can only be a calculated gamble that patients will fall for such propaganda! In a further editorial it states: "Patients will have the opportunity to hear all sides of the argument and will ultimately make the decision: Is ME/CFS better than CFS? And which 'ME' is better - the one that has been used for 60 years, or the one that is more medically accurate and up to date?" We may suffer from brainfog but most of us are intelligent enough to recognise this manipulative trick.
In an IACFS conference report by Dr Charles Lapp, he notes that the organization has changed its name to IACFS/ME(opathy) and: "an ad hoc Name Change Committee, put together by ProHealth CEO Rich Carson, also recommended using the term ME (Myalgic Encephalopathy) in lieu of CFS. CFS will probably remain the scientific term for the illness, but it is hoped that ME will become the common designation." So the committee has already indicated the predetermined outcome of the final decision, and CFS with its vague criteria and associated stigma will strangely remain the "scientific term for the illness"? This bizarre logic is baffling and will not put an end to the controversy and disbelief that have caused patients so much distress.
Myalgic Encephalopathy is open to psychiatric interpretation as it is not coded in any WHO classification, and the CDC/Fukuda/Holmes based CFS criteria include psychiatric patients, in fact anyone with fatigue! The IACFS Conferences still give far too much preference to fatigue and behavioural studies, and the highly inappropriate CBT/GET research. Fatigue is not a disease, it is a symptom of all chronic illnesses and exercise is only gradually commenced after successful treatment, not as a misguided substitute! The evidence for mitochondrial dysfunction and exercise intolerance is not in doubt so why are these psychiatric studies still getting funding and taking up valuable time and space at a medical conference?
It is apparent that the name change committee does not wish to look beyond the distorted findings of these heterogenous CFS studies which inevitably produce inconclusive results, so who do they really represent? They will not consider the mounting evidence from independent unbiased researchers and the conclusions from autopsies that do confirm CNS inflammation and vasculitis, while referencing the history of the coinciding epidemics of ME and Poliomyelitis that began in 1934, the later discovery of 69 related polio and non-polio enteroviruses, and the current evidence of damage to the Rnase L anti-viral pathway.
The experts who first named the disease Myalgic Encephalomyelitis some 50 years ago did so based on all the evidence at the time including autopsies which demonstrated inflammation of the spinal cord, and this has been confirmed again as recently as 2006 in a horrifying case of medical neglect and psychiatric abuse in the UK, while in the US an autopsy on a young man revealed viral inflammation of the heart! How many more lives will it take? Why do politics dictate medical inquiry? ME researchers have been forced to use the name CFS and its definitions to have their studies published in peer-reviewed medical journals, and this unethical situation will continue to waste more precious money on predictably inconclusive research results.
ME does not need renaming - it must be reinstated as the only medically justified term for the disease at this time - and CFS must be abandoned if respect and funding are the priority.
Myalgic Encephalomyelitis has officially existed for 50 years and together with its previous name Atypical Poliomyelitis provides a continuous historical record of the illness spanning a staggering 70 year period. The only other justified change at this point would be to remove the word "benign" from the WHO-ICD, and the public rightfully alerted to this most pertinent fact.
We can also be justifiably wary of this name change at a time when major funding is still not being allocated to medical research!
It is time we stopped debating the long established name and instead focus our attention on restoring the basic human rights of patients by securing major funding for intensive medical research, educating the medical profession, and delivering long overdue treatment. It is time we were heard.
We cannot afford to have another damaging name imposed on us again - we must act now!
If these so-called ME organisations lack unity and agreement on so many of the basic facts including the historically correct name, how can we expect governments to take them seriously? Too many of these groups are operating under various names such as CFS, CFIDS, or CFS/ME [or ME/CFS] and using the outdated and unscientific Fukuda et al definitions and varying descriptions of the CFS invention that do not describe the serious neurological and multiple system disease ME, which clearly is a notifiable pandemic.
This is a serious public health issue, patients are suffering and dying without appropriate medical treatment, and more will succumb to this disease while the organisations that are supposed to be advocating for us can't even agree on the scientifically verifiable facts - Myalgic Encephalomyelitis is a clearly defined and diagnostically testable disease with a history of epidemic contagion, while CFS was a cleverly designed illness construct to hide the ME pandemic.
The current confusion over the name in the US is that CFS, the fabricated condition that somehow became officially synonymous with the real disease Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic Encephalopathy. The problem is that both names share the initials ME, and since Myalgic Encephalopathy will retain the terribly misleading CFS criteria this name is nothing more than a clever diversion to draw our attention away from the real issues.
The pandemic disease Myalgic Encephalomyelitis has quietly destroyed millions of lives while the CFS hysteria and confusion has raged on, and it seems likely that this latest name change diversion will prolong the confusion and misunderstanding of the disease, and blind everyone to the criminal medical neglect of seriously ill Myalgic Encephalomyelitis patients. What is your organisation doing to help change this?
Myalgic Encephalomyelitis is the historically recognised name and the current science supports its inception since 1956, and until the scientific consensus suggests otherwise, it must be formally and publicly recognised by all governments and medical organisations as the distinct neurological disease documented for over 70 years and classified by the WHO since 1969 to attract major funding and public respect for patients.
So who do these CFS, CFIDS, and CFS/ME organisations with their various definitions of CFS actually represent? If they will not clearly identify as Myalgic Encephalomyelitis organisations and clarify their support for the documented history of ME, the mounting research supporting the evidence of inflammation and the 2003 Canadian Consensus Definition, then patients should know that they are being deceived.
Patients can empower themselves by demanding that these organisations stop hiding behind the obfuscation of CFS, CFIDS and CFS/ME, demonstrate that they represent strictly defined Myalgic Encephalomyelitis and take action to force governments and medical organisations to publicly recognise the disease, provide major funding for research, educate the medical profession, fund proper treatment for patients, and protect the public who remain at risk of contracting this disabling and eventually terminal disease.
If these organisations will not rise to the challenge, patients can exert their considerable collective power by withdrawing their financial support and diverting their membership fees and donations to organisations that will work to restore our basic human rights for long overdue public recognition and medical treatment.
The Psychologising Matrix and Collaborating Charities by Kevin Short
"...these people are still part of that system. ...most of these people are not ready to be unplugged. And many of them are so inured, so hopelessly dependent on the system, that they will fight to protect it." (Morpheus).
Forget Action for ME, forget the 'ME Alliance' sham and forget Charles Shepherd's so called Myalgic 'Encephalopathy' Association and, above all, forget the notion of any collaboration with and appeasement of Wesselyites, Ministers, and the rest. The ONLY way we can secure justicefor real M.E. sufferers is to fight politically and fight fire with fire. We do not need to raise money from poor sufferers for research, we need to raise money for a political and legal fight. We win the political fight then we can get state bio-medical research funding and support.
There must be no sacred cows in this political struggle and collaboration must be exposed to the light of openness, transparency and truth. The only bottom line for us all should be what is in the best interests of true M.E. sufferers (WHO ICD-10 G93.3). 15 Years of trying to reason with psychologisers and government has not only got us nowhere - we are now facing the abyss. They will not be reasoned with, they have to be fought. We need the M.E. equivalent of 'Fathers for Justice'. We are now in the absolutely appalling situation where sufferers of an organic neurological disease are going to be routinely referred to psychiatrists when we should be seen by neurologists and immunologists.
Access to disability benefits will be conditional upon receiving 'treatment' which is known to be harmful. I for one am not bloody well putting up with this and call upon all fellow true M.E. sufferers and their carers to rise up, get focused, get fighting and do your bit. Don't be duped by the polysyllabic Internet puss ceaselessly spewing from infiltrating and psychologising usual suspects. Focus and fight.
Take the red pill.
To Dr Gibson, Group on Scientific Research into ME - Your Letter Dated 9th December 2005 from Kevin Short (PDF).
Driving Home The Evidence - to our own ranks by Kevin Short
I would like to thank Jean Long for her recent article entitled 'Driving Home The Evidence'.
I would however like to emphasise the point that the biggest part of our collective problem - in my humble opinion - is that the evidence needs to be driven home to our own ranks as an extremely urgent priority.
The sad fact is that most M.E. sufferers are clueless to both the level of existing bio-medical research about their illness and to the
well-funded political campaign directed against them by the psychologisers and their corporate/DWP backers. The reason for this ignorance is because ill people have, like lambs to the slaughter, put their trust in AfME and the MEA. AfME and MEA are their only source of 'information' and sufferers/carers are rendered ignorant by the crass soporific output in the respective glossy magazines of these 'ME charities'.
Chatter amongst, and heroic efforts of, a few activists is not enough. We simply must find better ways to reach the multitude of non-activist M.E. sufferers/carers and bypass the propaganda of AfME, MEA and the Wessely School. Do that and we have a veritable army to 'Drive Home The Evidence'.
Best wishes and thanks.
ME/CFS Politics in a Nutshell (UK) by Kevin Short
Ever mindful of budgets, In the UK, Government Ministers have been captured by the psychologising views of the Wessely School, Insurance Industry and the DWP 4 and are pursuing their ‘Pathways to Work’ project - which is set to gain momentum from 2005. A situation where sufferers of a physical neuro-immunological disease (M.E.) will be routinely referred to psychiatrists as mental health patients – and subject to harmful ‘treatment’5 upon pain of benefits withdrawal – is being set up. This is NOT exaggeration and I would direct you to the extremely worrying comments of Wessely-School psychiatrist Dr Michael Sharpe: "Those who cannot be fitted into the scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service."6
In spite of all the biomedical evidence to the contrary, these vested-interest psychologisers continuously maintain their anti-science mantra: that ‘M.E. is perpetuated by mistaken belief and sick-role behaviour’. Their well-funded lobby machine relentlessly bombards parliament and the media with disinformation - and they flood medical and trade journals with extremely low quality psychiatric ‘research’ papers.7 Inevitably, all of this adversely affects the views of time-pressed GPs who are simply too busy to read all the bio-medical research papers themselves. Adding to this problem is the fact that Wesselyite psychiatrist, Professor Peter White, has even managed to have ME/CFS listed under the heading of "Functional or Psychosomatic Disorders: Medically Unexplained Symptoms" in the main general textbook recommended by the BMA and used by most GPs and medical students.8
Myalgic Encephalomyelitis is a neurological disease with serious CNS consequences due to brain injury with serious cardiovascular and immunological consequences. The disease snatches the vital life out of patients on the level of other diseases like MS, AIDS, and mitochondrial myopathies. What is needed is recovery of the clearly delineated Dr. Melvin Ramsay criteria & focus which has been carried through by Dr. Byron Hyde & augmented by the 2003 Consensus Criteria. And also, it needs to be common knowledge that M.E. is a neurological disease like MS and has been classified as such in the World Health Organization's International Classification of Diseases since 1969, no matter the denial in the US.Ignoring a real disease, Myalgic Encephalomyelitis, and naming an illness after a common symptom in numerous other diseases is no longer viable or truthful. And it cannot be papered over by any large publicity campaign nor a flawed CDC gene study which highlights "allostatic stress."
(Note that the HFME strongly opposes the false disease category of 'ME/CFS')
(Note that the HFME strongly opposes the false disease category of 'ME/CFS')