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' 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'
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.
While the unity mantra sounds appealing, it does not work for those with Myalgic Encephalomyelitis (ME). The "we all work together" is usually to join with or support any/all other groups, but there are no true ME groups in the US to represent us. And some groups may use the name ME but are still promulgating ME/CFS. It does no good to support or join with groups that are not advocating for our needs or are even working against our best interest.
We need an accurate diagnosis. We cannot be dumped into the CFS or ME/CFS wastebasket as these do not represent our illness. Our illness is ME. The one essential characteristic of ME is acquired CNS [central nervous system] dysfunction; that of CFS is primarily fatigue. The exclusion or downgrading of the characteristic ME symptoms and the elevation of fatigue to unreal and irrelevant diagnostic significance has led to the ever expanding emphasis on psychiatric explanations.
CFS has become so inclusive as to describe a heterogeneous population of psychiatric and miscellaneous non psychiatric fatigue states. We cannot keep including, linking to or dragging around CFS as this is what caused the problems in the first place.
We need to keep up the grassroots efforts for the recognition and research of true ME.
Anyone or any group that is promoting or advertising ME/CFS as the name or diagnosis or promoting the Canadian ME/CFS Definition as a substitute are not ME advocates and are not promoting ME or ME awareness, regardless of their claims. ME is what was described and defined originally before CFS was invented. Contributing to the ME/CFS connection and inclusion only contributes to the confusion and CFS misinformation that have so undermined and harmed ME patients.
The ME/CFS Deception
"Let us not look back in anger, nor forward in fear, but around us in awareness." - James Thurber
As Awareness Day approaches, many try to find ways to move forward. Since there has been so little progress, sometimes it is necessary to reflect and regroup. So start with the basics: Awareness - for what?
CFS in any form will continue to undermine us. Mark Iverson wrote in his letter of resignation from the CFIDS Association of America:
"I favor and the CEO [*who at this time was Kim Kenney (McCleary)] opposes immediately adopting a very aggressive tance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name;..."
How true. So why would we keep it? Myalgic Encephalomyelitis (ME) is an actual illness, yet some are now trying to push some made-up combination, hybrid construct as a viable solution. Half truths are more dangerous than lies. ME/CFS is the next red herring.
What is ME/CFS? Is it ME? Is it CFS? Is it something else? Is it the Canadian criteria? Is it none of the above? Usually met with stunned silence, or with differing meanings or interpretations.
We do know what it is not:
ME/CFS is not an actual diagnosis as there is no ICD code.
ME/CFS is NOT a name change or new name. The only real purpose of a name change has been to get rid of the derogatory and demeaning CFS. And ME is not new.
ME/CFS implies that they are the same. They are not. They have different definitions and can select different patient populations. There may be some overlap of vague symptoms, but they are different in nature and outcome.
CFS was intended to be a provisional term used for surveillance purposes. CDC states that ME and CFS are different and that CFS excludes neurological illness; thus it excludes ME. If CFS excludes ME, how does ME/CFS or CFS/ME make any sense whatsoever, scientifically or even logically?
Everyone has their own meaning and understanding of what ME/CFS means, or should mean, or believe it will mean. (*The Canadian Criteria is not an ME definition but has features of both.) There are numerous - and differing - explanations that flood the internet: what it is, the prevalence etc.
Within the same article there are often different terms and references: "ME patients" or "ME/CFS studies" or "CFS research" and often switch back and forth.
And there's CFS/ME, but do not dare confuse this with ME/CFS!
And of course we always have to proclaim that CFS is not "chronic fatigue!"
Yet we have resource centers and petitions and even paid advertising using and promoting this confusing, undecipherable gibberish.
Then we muster the requisite outrage and handwringing when the "dumb" doctors or journalists or even the general public don't get it or get it wrong.
Throwing everything into some ME/CFS pot will not help anyone but will continue the misunderstandings and confusion and will be open to the same interpretations or misinterpretations that we've had all along.
Having a valid diagnosis (which uses established terminology and definitions) that describes a homogeneous patient cohort for research purposes is critical.
We have never had this, and there are groups/advocates that still try to deny, ignore and even actively try to prevent this from occurring. Groups continue to spring up, but still perpetuate the ME/CFS myth (and even faux "ME" groups that do the same), evoking this as some false forced unity while banning and censoring those who refuse to conform.
The different definitions and names and usage have caused the vast majority of the problems with the stigma and trivialization, and the broad and varied definitions create the differing and conflicting research results. Studies almost never specify what definition was used or how patients were selected so we never really know what or who was being studied.
This is sloppy, unscientific and it is time to put a stop to it. Unfortunately, it is up to us, as our organizations and even professionals have failed us miserably.
Those with ME want a valid diagnosis of ME (not combined or connected to CFS) that can be recognized and diagnosed now, not another artificial creation or at best watered down combination that can be broadened, redefined etc. Whatever the rest or whenever the cause is proven can be sorted out later.
We are on our own and require a true grassroots effort. Contact HHS and cc Congress and continue to educate the media. True ME advocates have no reason to attend the CFSAC meeting (at the last meeting, Dr. Hanna stated that people were requesting that ME be recognized independent of CFS).
Be clear that ME needs to be recognized as originally defined and described and that these groups do NOT represent ME!
For more information on the problems with the various, conflicting names and definitions, see:
CDC - CME: A Primer for Allied Health Professionals (WB3151): Chapter 1.1 - Chronic Fatigue Syndrome
A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE
In her speech before the IiME conference in London recently, titled 'The Why,' Hillary Johnson asks why the US CDC promoted the concept of 'CFS.' She says:
'The essential question would be: who benefited from the strategies undertaken? And the answers would be, in this order, disability insurers, a central government relieved of the costs of research, and individual scientists and bureaucrats at the CDC who used what little research money there was for their own purposes—travel, new computers, new office furniture, pet projects—and hung on to their jobs by lying to Congress about their progress in the disease.
'Another constituency who has benefited almost beyond imagining:psychiatrists.'
A few more thoughts on advocacy by Hillary Johnson, January 2004
In my book, with the help of a CDC insider, I documented the theft of millions of dollars, tagged by the U.S. Congress for ME/cfs research, by a cabal of scientists at the U.S. government’s Centers for Disease Control. That was the headline provoking news in my book, I suppose. Certainly, from a journalistic perspective, it was the news that should have attracted a general interest audience to the book. Citizens don’t like to hear about individuals in government stealing millions of taxpayer dollars and—the polite word—misappropriating—those dollars for purposes other than what those dollars were intended for. For such an event to occur within an American "health" agency seemed even more scandalous. Even my fellow journalists, the most jaded among them, were incredulous that a health-oriented agency would engage in skulduggery. The FBI? Yes! The CIA? Yes! The Pentagon? Yes! The little CDC in Atlanta, Georgia? You’ve got to be kidding!
I wrote this book, Osler’s Web, with a great deal of optimism that this sensational news would alter the landscape of the politics of ME a little bit, maybe even a lot. Mostly, although the book itself got strong to excellent reviews, what happened was that my contention that ME was a pandemic disease that had been discredited and swept under the rug by federal health agencies was attacked in places like Newsweek and USA Today. Their proof? They had none; the authors merely insisted it was an incredible scenario; such things couldn’t possibly happen in a free nation with a big federal health research program in place.
My fond hopes burgeoned however when, one month after Osler’s was published, a New York-based Congressman convened a meeting in his Washington office with me and top-level administrators of the Government Accounting Office, the U.S. Congress’s independent investigative arm. The congressman asked me to outline for the GAO administrators the claims of taxpayer theft in Osler’s Web. I did so.
In time, the GAO did pursue an investigation based on the material presented in Osler’s, although there was a curious delay of about two years. The investigative arm of the U.S. Department of Health and Human Services (which controls the CDC) investigated, too. Both investigations confirmed what I had reported in Osler’s—these thefts did occur. (Incidentally, in my opinion, any money spent by CDC on this disease continues to be thievery, since the CDC remains utterly corrupt: the same incompetent scientists from the 1980s are still in charge of the disease, and they continue to publish lie after lie about ME and, in tandem, undercut the work of legitimate scientists who do publish scientific studies about ME by either defaming such studies or ignoring them.)
First identified in the 1980s By Hillary Johnson
I would like to comment on the post by Margaret Williams regarding the American Centers for Disease Control published claim on April 25 that "CFS" was "First identified in the 1980s…" Margaret Williams has indeed caught the UK psychiatric lobby in a trap of its own making by applying the CDC’s logic. But I’m moved to add to Ms. William’s comments an historical perspective in the form of a few comments about the CDC’s troubled, even rancorous, activities in the creation of the false paradigm "chronic fatigue syndrome."
Buy a second-hand copy of Hillary Johnson's groundbreaking book Oslers Web
'Stricken: Voices from the Hidden Epidemic of CFIDS’ edited by Peggy Munsen
Dismissed by the media as the "Yuppie Flu," Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) turned out to be neither a faddish disease of the wealthy nor a passing trend, but rather a growing worldwide epidemic of devastating proportions.
In the voices of a South African journalist, a former marathon runner, a young girl, a cancer patient neglected by the system because of disdain for her chronic illness, a theologian relearning the art of spiritual empathy, and many others - the people who share their courageous stories in the anthology Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome defy cultural stereotypes and explore the complex social and political dynamics of this hidden epidemic.
Stricken confronts fascinating CFIDS issues such as the Kevorkian suicides of CFIDS patients, accusations against parents of CFIDS children of Munchausen Syndrome by Proxy, Gulf War Syndrome, the role of storytelling in a memory-impaired patient movement, and the feasibility of mass activism in a disabled population.
With perspectives from Pulitzer-prize nominated writer Susan Griffin, bestselling health writer Gary Null, beloved feminist activist Joan Nestle, and award-winning poet and essayist Floyd Skloot, Stricken is an eloquent testament to the heroism, defiance, and diversity of the Chronic Fatigue Syndrome community.
Peggy Munson’s book ‘Stricken: Voices from the Hidden Epidemic of CFIDS’ is available from this site which also features Peggy’s Awareness day letters from
2001, Question your own prejudices about chronic illness. Do you believe people with chronic illness are weak, have given up, have bad Karma, or just need "spiritual growth?" Ask yourselves what fears these ideas serve to assuage, and imagine ways to bridge the "us" and "them" separation that keeps disabled people in substandard care. When the New Age, or Yoga Journal, or Oprah's website, portrays CFIDS patients as people who are spiritually bankrupt, is this any different than Attorney General John Ashcroft stating that people are disabled because of God's will?
2002 Many people are stunned that I have stayed so sick for so long, mistakenly believing that CFIDS is a mild, short-term condition. Some of this confusion is due to the fact that many articles on CFIDS, and particularly many articles and books in the field of alternative medicine, use "Chronic Fatigue" and "Chronic Fatigue Syndrome" interchangeably. Even WebMD now knows that these are not the same thing -- stating, "most people who have chronic fatigue do not have the disease chronic fatigue syndrome. There are many health problems that can cause fatigue. CFS can be diagnosed only after a thorough evaluation has ruled out other possible causes of chronic fatigue." People with idiopathic chronic fatigue might spontaneously recover, but those with CFIDS generally don't. A study in 1999 found that only 4 percent of severe CFIDS patients ever fully recover (Hill, Nancy et al. "Natural History of Severe Chronic Fatigue Syndrome." Archives of Physical Medicine and Rehabilitation, 80, September 1999). Even the CDC, which used to publish optimistic, poorly designed studies on recovery, now estimates the recovery rate of CFIDS to be less than 12%, according to the CFIDS Association of America. This could change, with viable treatments, but still NOT A SINGLE DRUG has been approved by the FDA for CFIDS. Having CFIDS is very much, medically, like living in a third-world country.
and 2003. Dr. Paul Cheney explained how the bodies of CFIDS patients are choosing between lower energy and life, or higher energy and death. On a physiological level, CFIDS patients live in a near-death suspension, making patients feel much like they are dying, not tired.
Dr. David Bell has studied the near-death feeling as it relates to blood volume. "[T]he vast majority of Bell’s CFIDS patients had 'extraordinarily' low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body)," writes About.com columnist Joan Livingston. "While his average patients ran about 70 percent of normal, several patients with Chronic Fatigue Syndrome (PWCs) had only half the blood volume of a healthy person, an amount so low that it would ordinarily cause shock and prove fatal in a car accident."
Why is there a gap between public perception and reality?
Clinical use of words like "stealth," "tricky," and "migratory" also add to the nebulous public image. Dr. Arnold Peckerman reported on Web MD that CFIDS patients might have what he calls a "tricky heart." The word "tricky" seems simple, like a stuck lock that needs grease, but Peckerman's heart discovery is harrowing. "Basically we are talking about heart failure," Dr. Peckerman says of the type of abnormal valve function in CFIDS patients. "[C]hronic fatigue syndrome is a progressive disease." Peckerman believes this discovery might explain why CFIDS patients become so ill from simple movements. "Typically we see this in people with three-vessel heart disease," adds Emory University cardiologist Joseph I. Miller III, MD of the abnormalities.
House of Lords Debate Thursday, 22 January 2004
The Countess of Mar rose to ask Her Majesty's Government whether they subscribe to the World Health Organisation international classification of diseases for myalgic encephalomyelitis (ME) under ICD 10.G93.3-neurological disorders. ‘Since 1992, one of the terms listed in the ICD as an alternative for ME is chronic fatigue syndrome. It is that term that is now used by international researchers and which has given rise to the confusing terms of ME/CFS and CFS/ME, a confusion that has served well the aims of a group of psychiatrists who assert that, whatever term is used, ME/CFS is simply medically unexplained chronic fatigue and that it should be classified as a mental disorder over which they should exert control.
Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder, for which he claims to have developed a more intensive form of the psychiatric intervention known as cognitive behaviour therapy (CBT). That consists of using intensive, mind-altering techniques to convince patients that they do not suffer from a physical illness. It also includes forced regimes of graded exercise to be supervised by a Wessely school-trained psychotherapist aimed at getting patients back to fitness.
Wessely school psychiatrists are about to receive £11.1 million, including £2.6 million from the Medical Research Council, in an attempt to strengthen the weak evidence that his regime actually works for those with ME. Among his largely undeclared, interests it should be noted that he is a member of the supervisory board of a company, PRISMA, that is supplying such rehabilitation programmes as CBT to the NHS for those with ME, even though such regimes have been widely shown, at their best, to be of limited and short-lasting benefit and, more importantly, at their worst, to be actively harmful to those with the disorder.
House of Lords Debate 16 April 2002 7.27 p.m. by the Countess of Mar
Professor Wessely seems to have taken it upon himself to reclassify ME as a mental disorder in the WHO Guide to Mental Health in Primary Care in his capacity as a member of the UK WHO Collaborating Centre for Research and Training for Mental Health. He has disingenuously amalgamated his own definition of chronic fatigue syndrome with ME by stating that ME may be referred to as CFS and is thus, he claims, a mental disorder.
The report concedes that there is huge confusion surrounding terminology. In reality it is simple. In 1992, the WHO included the term CFS as one by which ME is sometimes known, and indeed many international researchers now refer to ME as CFS. The patients whom they are studying resemble those with neurological illness. There is a long established acceptance that such patients are severely physically ill. However, since 1991, Wessely and his colleagues have been responsible for producing their own criteria for CFS, known as the Oxford criteria. They dropped all reference to physical signs. Physical symptoms suddenly became behavioural in origin as opposed to organic.
The scientific evidence is that, at best, a total of between 22 and 28 people with CFS and no psychiatric illness have derived limited benefit from CBT—nine of them in just two trials. None of the trials studied those with ME who were severely affected or children. Professor Friedberg of State University, New York, says that, for those CFS individuals who do not have psychologically mediated reductions in inactivity, such a directed approach as CBT would be inappropriate and counterproductive.
Is the Minister happy to rely on such manipulation of the scientific evidence as appears in the report? Does he endorse management recommendations for patients with ME who do not have psychiatric illness that have been extrapolated from findings of studies on patients with a psychiatric diagnosis?
FOR UK PARLIAMENTARY INQUIRY INTO ME/CFS
In 1999, the Countess of Mar, a stalwart campaigner for the UK ME community, obtained the Opinion of a Leading Queen’s Counsel in the House of Lords; the eminent QC’s Opinion stated:
"On the document you have sent me there is an overwhelming case for the setting up of an immediate independent investigation as to whether the nature, cause and treatment of ME as considered by the Wessely School is acceptable or consistent with good and safe medical practice. There is substantial doubt as to whether such could be the case. A formal request should be made to set up such an enquiry at which interested parties could be represented by Counsel".
Consideration of Some Issues Relating To The Published Views of Psychiatrists of The "Wessely School" in relation to their belief about the nature, cause and treatment of myalgic encephalomyelitis (ME)
It may be timely to quote from recent comments made by the Countess of Mar: 113 "I continue to pursue various avenues in the House of Lords. Gulf veterans, sheep dip victims and ME sufferers seem to take up much of my time. I continue to be concerned about the appalling way in which the Government treats these individuals and will not let go until they are treated as they should be".
This ambivalence of classification in the CMO’s report and the MRC report was further exploited in 2000 by the deliberate inclusion of CFS/ME as a mental disorder in the Guide to Mental Health in Primary Care produced by the UK WHO Collaborating Centre at the Institute of Psychiatry where Professor Simon Wessely works.
It is not permitted under WHO rules to move a condition from one chapter of the ICD to another; moreover the WHO does not classify diseases by practice specialities: they are placed within a chapter according to pathophysiology.