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 group featured on this page (the 25% M.E. Group) to some extent, in some articles which may be featured on this page, currently supports the flawed concept of 'ME/CFS.' It is important that readers are aware that the HFME not only does not support this concept 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 group featured on this page (the 25% M.E. Group) to some extent, in some articles which may be featured on this page, currently supports the flawed concept of 'ME/CFS.'
It is important that readers are aware that the HFME not only does not support this concept but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
Submission To The Parliamentary Inquiry Into Progress In The Scientific Research Of M.E. By The 25% ME Group (Word format) Comments from Greg Crowhurst December 2005
Includes comments from 25% members on CBT, GET and the effect of the ‘psychiatric’ approach to M.E.
"This will be revealed as one of the biggest medical scandals in history" declared a severe ME sufferer. This Report, based on an email survey of sixty- four severely ill, classical, Ramsay-defined ME sufferers, with a "multiplicity of symptoms" including, muscle phenomena, circulatory impairment and cerebral dysfunction (Ramsay 1988), was conducted at short notice in December 2005 especially for the Parliamentary Inquiry, by the 25% Severe ME Group.
"It is bad having severe ME but not as bad as being treated as a time wasting malingerer by the medical profession and the Department of Works and Pensions", remarked one respondent.
A respondent describes how "This illness makes life hard enough as it is. It is so much worse that, whilst there is the ability to investigate this illness, that opportunity is being deliberately ignored. The choice the medical profession is making to treat a physical illness with psycho-nonsense is never going to cure anybody."
SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE (Word document)Analysis Report by 25% ME Group, 1st March 2004
Graded exercise therapy: 95% found it unhelpful
Cognitive behavioural therapy: 93% found it unhelpful
By far the most unhelpful form of treatment was considered to be Graded Exercise Therapy (GET). This is a finding that may surprise some readers, given the current medical popularity of this approach. However, these patients’ perceptions are supported by data from previous experience: of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment. On the basis of our members’ experiences we question whether GET is an appropriate approach for patients with ME. It is worth noting that some patients were not severely affected before trying GET. Thus, it is not only people with severe ME who may be adversely affected by this form of treatment.
Severely Overlooked by Science — An Overview of Research on Severely-ill People with ME by Dr Neil C Abbot, for MERGE and the 25% ME Group
"Severely ill are severely overlooked; just ignored and invisible." CMO report 2002, Section 2.3.1
Ignored and invisible! When the authors of the Chief Medical Officer's report of 2002 coined that phrase they were referring to the exclusion of the most severely ill people with ME from community and social care provision. However, the same description also holds true for mainstream scientific research.
A cursory glance at the existing scientific literature on ME (largely held in electronic databases — mainly MEDLINE — and specialist resources like the downloadable database of some 3000 abstracts at the MERGE website) reveals the virtual absence of information on the most severely affected people.
The Table below gives the number of articles (loosely defined) published for some randomly-chosen illnesses, and it shows two things. First, that ME is a Cinderella illness compared with other comparable chronic conditions in terms of volume of research publications; and second, that research on the severely ill is a rarity in most illnesses, including ME.
PRESS RELEASE & GENERAL STATEMENT By the 25% M.E. GROUP – National Support Group for Severe M.E. Sufferers.
Quote: Are a small group of vocal researchers trying to hijack vast amounts of public money? In excess of £4 million has already been spent by psychiatrists trying to prove that CBT/GET are the most appropriate forms of treatment for CFS/ME. Despite this a major review of evidence for the government described the evidence as "poor". Now a proposal to spend a further £2.6 million within the psychiatric field is being considered. This is despite the fact that ME is a multi-system/multi-organ disease, which has been formally classified by the World Health Organisation as a Neurological Disorder since 1969.
Worse still, many people with "classic" ME report that these forms of treatment are the most unhelpful and harmful to their health and often severely restrict any improvement in their condition. In a recent ME patient survey, it was found that up to 50% (1) were made worse by Graded Exercise Therapy. In the same survey, 93% (1) found rest and pacing of their condition much more helpful in managing their illness.
25% ME Group Response to the CFS/ME Research Advisory Group’s Draft Report "CFS/ME Research Strategy (Draft Document for Public Consultation)"
We do not believe that GET, CBT or even pacing will stop the disease! We should be seriously investigating the pathophysiological processes that are causing people to deteriorate.
The only point we would make regarding Para 157 would be that there is strong evidence from patient-reporting groups and documentation from various sources confirming that GET does make patients with Myalgic Encephalomyelitis worse (but this does not necessarily apply to patients with CFS and other Functional Somatic Syndromes). Relapses in patients with ME can last for months, years, or for the lifetime of the patient. For patients whose lives are already devastated by ME, the additional level of suffering caused by this form of ‘treatment’ can often be intolerable.
Survey of the experiences of housebound/bed-bound ME patients MERGE,The Gateway, Perth; and the 25% Group for Severe ME Sufferers, Troon, Ayrshire
Aims: We report the results of a UK survey conducted by the "25% Group", a patient-led group of which MERGE is the research arm, which has highlighted the seriousness of the condition of these particular patients and their needs. Methods and Results: In July 2000, a custom-designed questionnaire was sent to all 400 members of the "25% ME Group", a self-help organisation in the UK whose membership is restricted to housebound or bedridden patients. The questionnaire contained 18 questions about their current medical condition and their illness experience. Question responses were analysed descriptively. The Table below shows that 55% of respondents had been ill for more than 10 years, and 50% of them had taken more than 2 years to obtain a formal diagnosis of ME/CFS. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than 6 years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms; that 38% (81/212) described themselves as totally dependent on others; and that 48% (104/215) reported no regular assessment or management of their condition. Conclusions: This survey shows that human cost of ME/CFS can be substantial, a fact that is generally under-reported in the medical literature and ignored by systematic reviews of clinical trials. We suggest that the impact, prevalence and the pathways to chronicity of this disease need urgent investigation.
For more information, to join the 25% Group, or to make a donation see: http://www.25megroup.org