*O* A Rose By Any Other Name by Dr Elizabeth Dowsett
Both the earliest definition (HOLMES et al, 1988) and its revision (FUKUDA, 1994) elevated tonsillitis, glandular enlargement and fatigue to unreal importance while overlooking the characteristic encephalitic features of the genuine illness. These mistakes also inflated the possibility of a psychiatric diagnosis, leading to the incorporation of such a heterogeneous population of psychiatric and non-psychiatric causes later on, that research groups of different persuasions were unable to compare results or evaluate treatment.
The tools we can use today to study the brain offer possibilities which were unimaginable 50 years ago2. These include Molecular Biology: for example PCR – a microbiological technique capable of amplifying and identifying minute fragments of viral genes, hidden away in internal organs (such as brain, heart or muscle 3) while a test for rapid diagnosis (within five hours) is currently available. These tests indicate that viruses from the polio group, or related to it, are involved both in the late effects of ME and the Post Polio Syndrome 4. Brain Imaging: the use of CT, MRI, SPECT and PET scans clearly indicates that metabolic dysfunction in the brain stem and the spinal nerve radiations which transverse it, are initially associated with viral (inflammatory) damage and are the major cause of the cardinal symptoms of ME – central fatigue, stress induced weakness, autonomic nervous dysfunction and the breakdown of homoeostasis over hormonal and other vital functions5.
*O* The Late Effects Of M.E. - Can they be distinguished from the Post-Polio Syndrome? by Dr Elizabeth Dowsett
"The number likely to be affected by the post-polio syndrome has been calculated as between 200-270/100,000 currently[7], but no account has been taken of survivors from non-paralytic polio which could easily double that figure. Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]
Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]"
*O* Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett
"If the cause of a disease, the way in which it is acquired and the processes by which damage is caused are known, no definition is needed. To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague “fatigue” entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated!"
*O* Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett
WHAT IS RESEARCH? It is simply an attempt to discover the truth. However, even in 1999, this search may still concentrate on one of 2 alternate pathways:
a) The METAPHYSICAL (or philosophical) route which seeks to establish truth purely by reason and argument. b) The PHYSICAL (or scientific) path which sets out to determine facts by systematic investigation of material events and by experiment.
The metaphysical approach bears much the same relationship to the scientific as ASTROLOGY (which involves the influence of the stars on human affairs) does to ASTROPHYSICS (which determines the chemical and physical composition of astral bodies).
...1988 The metaphysical approach ousts science once again. Although research funding for the study of ME is minimal in the UK, the major sources (totalling some £5 million in recent years) are non governmental agencies such as the Pharmaceutical and other industries. The major beneficiaries are, without doubt, members of the psychiatric profession who have exhumed ancient terms such as “hysteria” and invented new ones such as “somatisation” to explain that patients suffering from ME perpetuate their own illness. Previously reputable medical journals concur with this strange philosophy(11.)
A new definition for ME. Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries concerned, the related non polio entero viruses rapidly filled the vacancy. By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights. In the mid 1980’s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on “fatigue”(10.) (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a “fatigue” definition (which also omits any reference to children) has proved disastrous for research in the current decade. Whether in its original form or in the 4 redefinitions which have followed, most research workers, led by the Americans are now calling for an urgent change (omitting “fatigue”) so that like can be compared with like in international ME research.
Brain problems in ME – is there a simple explanation? by Dr Elizabeth Dowsett
"A good memory demands normal functioning of almost all areas of the cerebral cortex, the basal nerve centres of the mid brain (eg the thalamus and hippocampus) and their interconnecting pathways through the brain stem. Fluctuations of metabolic activity in these areas (often made worse by physical and mental exhaustion) have been reported in SPECT scans of patients with ME,(2) the vast majority of whom complain of difficulty with short-term memory."
*O*O* The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006
Preface
Since the Nightingale Research Foundation's publication in 1992 of its textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, there has been a tendency by some individuals and organizations to assume that M.E. and CFS are the same illness. Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.
M.E. is a clearly defined disease process. CFS by definition has always been a syndrome
At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.
The Psychiatric Label
Unfortunately many physicians and some senior persons in governments, including Great Britain, Norway and to a lesser degree the USA and Canada treat CFS as a psychiatric illness. This view has been arrived by some physician's readings of the CFS definitions from CDC. Indeed, despite clear signals in the 1994 CDC definition that CFS is not a psychiatric disease, each of the CDC definitions and their addenda referring to CFS remain open to interpretation as a psychiatric rather than a physical illness. This is not a view to which I subscribe. It is the CFS definitions themselves that give rise to this inaccuracy. Consider the following:
(a) What other physical disease definitions essentially state that if you discover the patient has any physical injury or disease, then the patient does not have the illness CFS? In other words if you have CFS then it does not result in or cause any major illness. What else could CFS then be but any number of various psychiatric, social, hysterical or mendacious phenomena?
(b) The various CDC administrations dealing with the subject have clearly stated that CFS is a physical, not a psychiatric disease. However, is there any other definition of any physical disease that is not provable by scientific and clinical tests? Only psychiatric diseases are not clearly verifiable by physical and technological tests.
(c) What other physical disease definition requires a six month waiting period before the illness can be diagnosed? Any physician knows that to treat a disease adequately you have to be able to define the disease at its onset and treat it immediately in order to prevent chronic complications from arising. There are simply no other disease definitions that have ever been assembled similar to the CFS definitions.
I believe it essential to define clearly Myalgic Encephalomyelitis. That is what the Nightingale definition of M.E. sets out to do
*O*O* A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde MD (an extract) 2006
‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality. The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine. It is my opinion that the CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process.’
*HIGHLY RECOMMENDED*
*O* The Complexities of Diagnosis by Byron Hyde MD 2003
(Taken from: Handbook of Chronic Fatigue Syndrome by Leonard A. Jason, Patricia A. Fennell and Renée R. Taylor)
The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.
Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it."
Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? by Byron Hyde MD
Abstract: At the 1998 M.E. /CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.
Clinical Features of M.E./CFS by Byron Hyde MD.
I will call for the recognition of M.E. as a more distinct clinical entity than CFS. I will also note that CDC as described by the CDC and the UK and Australian groups is actually a more diverse disease spectrum associated by a common group of symptoms but often with vastly different etiology, physical findings and clinical outcome.
*O* What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001
Lawyers may wish to consider if a small group of exceptionally influential doctors should be allowed to determine public policy without there being some external moderation. They may wish to consider why disease definition has become socially constructed, resulting in political tensions between sufferers, medical science and the modern State, a consequence of which is the intentional construction of "mental illness" by some groups of medical professionals resulting in stigma caused by the on-going denial. (172)
If clinicians and lawyers are unaware of this background and accept the readily proffered psychiatric explanations as if objective and based on sound scientific research, they will be unable to support their patients / clients with ME / ICD-CFS and will risk failing in their professional duty in this difficult area.
Full title: CONCERNS ABOUT THE FORTHCOMING UK CHIEF MEDICAL OFFICER’S REPORT ON MYALGIC ENCEPHALOMYELITIS (ME) AND CHRONIC FATIGUE SYNDROME (CFS), NOTABLY THE INTENTION TO ADVISE CLINICIANS THAT ONLY LIMITED INVESTIGATIONS ARE NECESSARY
We are unable to agree with advice to clinicians that only limited investigations are necessary or appropriate for ME/CFS sufferers and believe that such a view is medically and scientifically untenable; hence we believe there is a legitimate case for making this known in advance of the Report being issued. In our opinion, it is entirely unacceptable to advise clinicians that investigations on ME/CFS patients should be limited to a minimal basic routine screen, especially as basic screening is known to be often normal in ME/CFS.
In our opinion, when taken in consideration of all that is already known about the biomarkers of ME/CFS, the evidence of serious pathology presented at Seattle emphasises the unacceptability of advising that such pathology should not be fully investigated. It also underlines the fallaciousness of advising that such substantial pathology can be satisfactorily treated by cognitive behavioural therapy or graded exercise; thus we believe it is imperative for people to be aware that the most influential members of the CMO’s Working Group are apparently still determined to proceed along such avenues despite all the evidence which has been put before them.
[Includes a summary of much of the medical research into ME/ICD-CFS]
This present document should be read in conjunction with the amended original Montague / Hooper paper
Montague and Hooper believe that by seeking to equate one specific syndrome or subgroup with another syndrome or subgroup which does not have the same features, the CMO’s Working Group may be doing a grave disservice to both patients and medical science: they believe it is scientifically unacceptable that one name should refer to two different case definitions, each of which having different symptom profiles. Montague and Hooper are concerned at the repeated refusal by the CMO’s Key Group to acknowledge the clinical difference between ME and other forms of CFS, a difference which many believe has important implications for management and treatment outcomes, as well as for service provision.
[A solid overview of the medical and political facts surrounding M.E. and CFS in the UK.]
*O* Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006, printed in the BMJ
‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness
I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’
J. Clin. Pathol. published online 25 Aug 2006; doi:10.1136/jcp.2006.042408 Available: http://jcp.bmjjournals.com/cgi/content/abstract/jcp.2006.042408v1
Full title: A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE “WESSELY SCHOOL” IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK
To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations. Evidence is presented in this document to show that:
In the UK, patients with myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome or CFS), particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of certain psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder. These psychiatrists are shown to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of ME/ICD-CFS patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of ME/ICD-CFS
There have been persistent and frequently covert attempts by these psychiatrists to subvert the international classification of this disorder, with destructive consequences for those affected. To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support
Influenced by these psychiatrists, Government bodies such as the Medical Research Council have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, Government funding into the biomedical aspects of the disorder is non-existent
This coterie of psychiatrists has proven affiliations with corporate industry and has insidiously infiltrated all the major institutions, directing funding for research into an exclusively psychiatric model of the disorder, focusing on “management strategies” involving psychiatric techniques, even though such techniques have been shown to be at best of no lasting value and at worst to be harmful to patients with ME/ICD-CFS
A response to the final version of the MRC 'CFS/ME' Research Advisory Group Strategy
Having read the report, we conclude that it is like the proverbial curate’s egg: “good in parts”. However, in terms of demonstrating an understanding of ME/ICD-CFS and a grasp of the issues (and thus of providing hope of real progress to those whose life is blighted by it), the bad parts seem to outweigh the good: essentially the report is, as widely predicted, simply “more of the same” from a Government agency which is under the nominal political control of the Labour Science Minister Lord (David) Sainsbury (whose Linbury Trust has for so long financially supported those UK psychiatrists of the “Wessely School” who claim that ME does not exist and that “CFS” is a mental disorder which must be managed by cognitive behavioural therapy and graded exercise).
Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal cord in ME; there is, but these psychiatrists ignore or deny that evidence. It is true that there is no evidence of inflammation of the brain or spinal cord in states of chronic fatigue or "tiredness".
It is also true that neither the 1991 (Oxford) criteria nor the 1994 (CDC) criteria select those with ME, as they both expressly include those with somatisation disorders and they expressly exclude those with any physical signs of disease (as is the case in ME), so by definition, patients with signs of neurological disease have been excluded from study.
It is also true that Professor Simon Wessely and his colleagues use the terms "fatigue", "chronic fatigue", "the chronic fatigue syndrome (CFS)" and "myalgic encephalomyelitis (ME)" as synonymous. Such obfuscation has greatly hindered research.
Dr Paul Cheney on cardiac issues and M.E. and the related Peckerman et al. study.
CFS Compensates for Idiopathic Cardiomyopathy "Let me first of all define heart failure. There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy." [Idiopathic: cause unknown; Cardiomyopathy: structural or functional disease of heart muscle] "And your primary means of compensation—now this is the big twist—are you ready? Have you got your seat belt on? The primary methodology for compensation for this disorder is in fact CFS itself."
*O* Worldwide Epidemic/Over 1 Million in U.S. Atypical Polio, Myalgic Encephalomyelitis, Gulf War Syndrome Vaccines and Toxic Chemicals Government Agencies Obscuring the Evidence
We are here today, because a widespread epidemic of Myalgic Encephalomyelitis has descended upon this country. In less than twenty years time there are now over 1 million victims in the US alone and millions more worldwide. We are here because the national health agencies have not addressed this danger to the public health nor sought to find the cause or remedies for the suffering.
We are here to inform the public that the national health agency policies are subjecting patients to a systematic denial of medical services and are maintaining doctors all across this country ignorant about this disease. These health agency policies have ensured that the cause of this disease is not discovered. These policies impact the health of thousands already disabled by ME and continue to place everyone at risk.
A principal issue must not be overlooked: Why has ME, which has an historical relationship to Polio, exploded into a worldwide epidemic, and what is the inordinate fear of the DHHS to recognize this and discover its cause?
*O* A Public Statement to Government Health Ministers and an ALERT to citizens worldwide
Just twenty years ago an Epidemic of the infectious neurologic disease Atypical Polio began to skyrocket like never before and the Government agencies have been covering it up ever since. Thousands have died and millions are now disabled.
*O* ME and CFS, The Definitions
All definitions which wear the 'f' word (ie. fatigue) in their name are not ME nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological ME which they were attempting to define.
*O* Clinical Definition and Diagnosis
Encourage your doctor, hospital, library, to order the Special edition of the JCFS, 2003, vol 11, # 1, Myalgic Encephalomyelitis Clinical Working Case Definition, from The Haworth Document Delivery Service:1-800-HAWORTH. E-mail address: <getinfo@haworthpressinc.com> Website:http://www.HaworthPress.com
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