The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

An important note

Before reading this research/advocacy information given in the links below, please be aware of the following facts:

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.

Introduction

The majority of articles on this site deal with the M.E. situation in the UK and USA. This new section aims to collect articles on the M.E. situation (and who the main vested interest group psychiatrists and others are) in other countries.

Articles which could be added to this page may be submitted by email.

Australia

Smoke and Mirrors This paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category. Jodi Bassett

'Wessely, Sharpe, Cleare and White (etc.) in the UK, their counterparts (and sometime collaborators) in the US; Reeves and Straus (etc. of the CDC) in Australia Lloyd and Hickie (etc.) and the clinicians of the Nijmegen group in the Netherlands each support a psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as CBT and GET as the most useful interventions for these patients. It is important to be aware that none of these groups is studying patients with M.E. Each of these groups has created their own definition of ‘CFS’ (or uses one) which does not select those with M.E. but instead selects various types of fatigue sufferers.'


*O* The Complexities of Diagnosis by Dr Byron Hyde

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.


*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

‘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.’

The CDC website defines this CFS definition as:

This case definition was authored by a group of international CFS experts, convened by the U.S. Centers for Disease Control & Prevention (CDC) in 1994, to update and refine an earlier (1988) case definition. Its purpose was to provide standard criteria for researchers who were investigating the illness.

How truthful is this statement?

Were the 16 CFS experts actually CFS experts? It does not appear so. Let us start there.

Only three of the 16 authors of the 1992 CDC definition is well known in the M.E./CFS world and of those three, one was a NIH bureaucrat. In the 1992 CDC definition the two principal authors were Keiji Fukuda, M.D., M.P.H and Dr Stephen E. Straus. Dr Fukuda, the primary author was a very learned expert in Hansen's disease (Leprosy) not CFS and had never to my knowledge ever previously examined or investigated a single M.E./CFS patient.

Dr Ian Hickie, a learned and charming Australian psychiatrist was the third on the masthead of this definition. I had dinner with him in Australia and he was quite convinced that CFS was essentially a psychiatric disease. He was very well liked by his Australian colleagues but he did not seem to know or be interested in the investigation of physiological CNS dysfunction.'

[Thus despite the opinion of many in Australia, Hickie and Lloyd are NOT M.E. experts and they DO support an unscientific 'psychological' paradigm of 'CFS' (post-viral fatigue patients most often in Australia, an unrelated patient group to M.E.)]

*HIGHLY RECOMMENDED*


*O* ME and CFS, The Definitions from the Committee for Justice and Recognition of Myalgic Encephalomyelitis.

[Contains details of many of the different CFS and M.E. definitions including the Australian 'CFS' definitions]

"The Committee feels there has been a particular effort to confuse the public about Myalgic Encephalomyelitis. Most of this effort has been rooted in the promotion of the term Chronic Fatigue Syndrome to describe this disease, which has been spreading in epidemic fashion worldwide during the last twenty years. Of particular note is the outright effort undertaken since 1988 by the American CDC to eliminate the name and definition of M.E. and replace it with CFS. [But] no CFS definition defines a neurological disease. 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* PSYCHIATRY AND PERFIDY by Gurli Bagnall, July, 2004

"Academic psychiatry has all but lost contact with the population it is supposed to serve..Criticism is, if not actively discouraged, then politely but very firmly ignored." N. McLaren, M.D. Psychiatrist, Australia, 1999


 

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.

Probably the best descriptive definition of M.E. is found in Ramsay's book mentioned earlieri or in the Doctoral Thesis of Dr. Andrew Wallace,vii a Scottish physician who immigrated to Adelaide, Australia. Wallace's thesis discusses an epidemic in Cumberland in Northern England. It is unfortunate that more M.E. physicians have not read it.


The Australasian Report on CFS compiled critiques by Margaret Williams, 2001

Compiled by Margaret Williams on 2 December 2001 from various critiques posted on Co-Cure

In 1996 Dr Michael Wooldridge, Minister for Health and Family Services, approved an application to Medicare to provide funding of $130,000 to the Royal Australasian College of Physicians (RACP) to produce Guidelines on the most clinically relevant and cost effective methods of diagnosing and treating CFS.

The first draft report was released in December 1997 and was heavily criticised. The second draft was released in June 2001 (this four year delay achieved nothing). As in the UK CMO’s report, the guidelines focused on the (psychiatric) management of symptoms, not on discovering their cause. They ignore the substantial evidence of organic disease.

‘The failure to mention any of the evidence of physiological and neuropsychological deficits in CFS is disappointing in a document sponsored by an authoritative body who would presumably wish to present an accurate and unbiased view of current medical knowledge…..The authors could hardly be unaware of the repeated findings by unaffiliated groups of autonomic dysfunction (and) immune dysfunction in CFS…. In conclusion, this document...will ensure that most persons with CFS in Australia will continue to be inadequately treated.’

‘The RACP seems to suggest that cognitive behaviour therapy (CBT) provides a clear understanding of CFS. This claim is unfounded and lacks evidence…CBT is not a specific strategy for CFS where its claimed benefit is still questionable….no long-term study has established that graded exercise programmes can significantly improve aerobic capacity in CFS…..It appears that the RACP has failed to recognise that post-exertional malaise is a valid CFS symptom. There is no evidence that patients with CFS demonstrate avoidance behaviour to physical activity as claimed……the second paragraph of this section is a mixture of imagination and half-truths and should be entirely deleted. The UK experience of graded exercise in CFS has shown that as a single intervention, graded exercise was associated with the highest negative grading.’


Review: Video - Who Will Protect the Children? by Gurli Bagnall

"Who will protect the children?" is an apt title and as I watched the video, I thought of Gordon Thomas' book "Journey Into Madness - Medical Torture and the Mind Controllers" in which he said:

"Nothing I had researched before could have prepared me for the dark reality of doctors who set out deliberately to destroy minds and bodies they were trained to heal."


Sinister Science By Margaret Williams, 6th June 2004

On 3rd June 2004 Christine Hunter from Australia, whose daughter Alison died of severe ME aged just 19, was moved to ask where is the response of the worldwide ME community to the CDC International CFS Study Group's proposed refinement of the 1994 CFS criteria (published on 31st December 2003).


Insufficient data, inappropriate conclusion an article about CBT on the BMJ Journal website

Comments by Abhijit Chaudhuri, Senior Lecturer in Clinical Neurosciences University of Glasgow


DOES GRADED EXERCISE THERAPY IMPROVE POST-EXERTIONAL MALAISE IN CFS? by Susanna Agardy 


Vade MEcum Eileen Marshall and Margaret Williams, 28th June 2005

'Notable features were the similarity of symptoms and clinical history with other outbreaks in Akureyri, Iceland (1948); Adelaide, Australia  (1949); New York State (1950); Middlesex Hospital, London (1952); Coventry, England (1953); Durban, South Africa  (1955); Royal Free Hospital, London  (1955).'


COOKING THE BOOKS by Gurli Bagnall, December 2004


RnaseL Enzyme Dysfunction Disorder, or R.E.D.D. by Mary M. Schweitzer

A counter-attack on the increasing evidence to the physicality of CFS was mounted (so far successfully) in the UK by Drs. Wessely and Sharpe, and in Australia by Drs. Lloyd and Hickie. The disease had been recognized in the U.K. by the name M.E., for Myalgic Encephalomyelitis (roughly translating into brain inflammation accompanied by pain), for nearly half a century, but the CDC had ignored that history in choosing to support the decision-by-committee name "Chronic Fatigue Syndrome" invented in 1988. When Stephen Straus went to the U.K. to encourage the use of the name CFS internationally, the psychiatric community jumped at the chance to prove the longstanding conviction of a minority that M.E. was really psychosomatic. Specifically, they argued it was an abnormal response to a long-term viral illness: the patient had "learned" to be sick, and now had to "unlearn" it through cognitive behavior therapy (CBT). But the U.K. researchers refused to use the CDC's restrictive diagnostic criteria -- adopting instead one that focused on the fatigue and ignored the physical symptoms. The result was that the British version of CFS (whether the "Oxford" or "Royal Colleges" definition), applied to roughly 5 percent of the population (in contrast to the demographics of both M.E. and CDC-CFS, which most researchers felt affected 0.25% of the populace.) The consequences of this expanded definition for research were immediate and dramatic. When Sharpe wrote that "CBT" and "graded exercise" were statistically significant in improving the condition of people with CFS, did it make a difference that 95 percent of his sample would not have been defined as having M.E. in the UK, or as having CFS in the United States? Of course -- and yet that was the research that hit the popular press. Lloyd and Hickie's perspective led to the actual dismissal by Australian doctors that persons with CFS who were still sick two years later were sick at all -- by definition they only thought they were. According to the CDC in the U.S., only 45 percent of patients with CFS have achieved remission five years after onset of the disease; ten years after onset of the disease 45 percent of the original patients remained significantly disabled. CHROME, a long term study of patients with the most severe forms of M.E., found similar results -- and that there was an entirely class of patients who simply continued to deteriorate over time. How could the CDC and the CHROME evidence be reconciled with the Lloyd-Hickie thesis that illness after two years was due to psychological maladjustment? It could not. Yet Lloyd and Hickie were as active in the AACFS as Wessely and Sharpe.


PERSONALLY SPEAKING by Gurli Bagnall


For more on this topic see: My comments on the CDC's latest 'CFS' press release which also includes comments the latest Australian press release by Lloyd on post-glandular fever fatigue (which he calls ‘CFS’).

For more information on Australian politics, see also: My comments about the current (worrying) state of Australian ME societies (These comments follow, and are relevant to, a recent book review.)]

See also: Case Studies which explain in more detail the dire situation facing Australian M.E. sufferers.

The Netherlands

Hoogervorst: no official recognition of M.E.


[CO-CURE] ME & Netherlands doubters


[CO-CURE] ME- post to netherlands


[CO-CURE] Act: ME -letter to Dutch Parliament


[CO-CURE] ACT: Dutch radicalism or a lack of knowledge?


Smoke and Mirrors This paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category. Jodi Bassett

'Wessely, Sharpe, Cleare and White (etc.) in the UK, their counterparts (and sometime collaborators) in the US; Reeves and Straus (etc. of the CDC) in Australia Lloyd and Hickie (etc.) and the clinicians of the Nijmegen group in the Netherlands each support a psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as CBT and GET as the most useful interventions for these patients. It is important to be aware that none of these groups is studying patients with M.E. Each of these groups has created their own definition of ‘CFS’ (or uses one) which does not select those with M.E. but instead selects various types of fatigue sufferers.'

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Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95