A important note on the new direction of MERGE/MERUK: Like many M.E. advocates I was shocked to read MERGE/MERUK's recent article where they explained that they no longer have any desire to study pure M.E. patient groups, and instead are going to study 'subgroups of 'ME/CFS' - meaning subgroups of 'CFS' or fatigue. That they only MIGHT include at some point, maybe, some M.E. patients as one 'subgroup.'
This study of mixed fatigued patient groups will help nobody, least of all M.E. patients which are unlikely to even be involved at all, let alone in a meaningful way. M.E. is not a subgroup of 'CFS' nor 'ME/CFS.' Fatigue illnesses are not subgroups of 'CFS' or 'ME/CFS' either, they are diseases in their own right (eg. FM, Lyme, candida, MS and so on).
'CFS' and 'ME/CFS' help nobody.
Considering this change, one wonders by what right they have to continue to retain the use of the term M.E. in any context. If you want to study groups of fatigue illnesses, you are of course free to do so, but you cannot ethically and scientifically claim at the same time that what you are saying relates to M.E.
I (and the rest of the HFME) am shocked that MERGE/MERUK, once one of the few 'good guys' has taken this terrible decision and new direction. The current work of this group and this group itself can no longer be supported in any way by M.E. advocates, tragically. We can only hope that somehow this decision will be reversed and good sense, science and ethics will again prevail.
I am too ill currently to write as I would like to on this topic myself so when I read this discussion of the issue in a political discussion groups I jumped at the idea of including it on my website. The authors were kind enough to agree for me to repost it here, I hope you find it interesting reading. To read their comments see: MERGE, ‘ME/CFS’ and ‘CFS’
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 author featured on this page (MERGE) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly. MERGE also supports the flawed concepts of subgrouping 'CFS' or 'ME/CFS' and the concept of 'ME/CFS' generally. It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'ME/CFS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved. Again, please see also: MERGE, ‘ME/CFS’ and ‘CFS’
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 author featured on this page (MERGE) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly. MERGE also supports the flawed concepts of subgrouping 'CFS' or 'ME/CFS' and the concept of 'ME/CFS' generally.
It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'ME/CFS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
Again, please see also: MERGE, ‘ME/CFS’ and ‘CFS’
Survey of the experiences of housebound/bed-bound ME/CFS patients MERGE,The Gateway, Perth; and the 25% Group for Severe ME/CFS 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.
Heralded as offering a "promising new treatment" for people with severe ME, the FINE (Fatigue Intervention by Nurses Evaluation) Trial is presently recruiting staff and will report its conclusions in 2008 or even later. Costing £1,147,000, the trial is funded by the UK's Medical Research Council with a grant to Dr Alison Wearden, a psychologist based in the Department of Psychology, University of Manchester, and colleagues in Liverpool (Department of Psychiatry) and Manchester (Department of Psychiatry). In the preliminary supporting documentation, the FINE Trial is a described as a "randomised controlled trial of nurse-led, self-help treatment for patients in primary care... Referred patients will be randomly allocated to one of three treatment groups: (a) nurse-led self-help, (b) supportive listening or (c) GP treatment as usual." Patients will be visited in their own homes, and before "treatment" commences qualitative interviews will be conducted to explore"patient views on illness causation, beliefs about chronic fatigue, expectations of intervention, and previous experience of treatment and doctor-patient relationships". At the same time, the patients' GPs will be asked about their experiences of and attitudes towards patients with ME. After 20 weeks of "treatment", patients will be assessed for a variety of outcomes, and again after one year.
What is the "promising new treatment" on offer to the severely-ill patients? Called "nurse-led self-help" or "pragmatic rehabilitation", the approach "is designed to increase activity and challenge dysfunctional illness beliefs" (Powell et al, 1999), and includes elements of the cognitive behavioural and graded exercise therapy championed by those psychiatrists and psychologists who promote the "biopsychosocial" model of ME. The basis of this model is that "once an illness has started, its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process" (CMO Report 2002). Pragmatic rehabilitation, we are told, will help patients to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation. In support of its usefulness for the most severely ill patients, a single report in the scientific literature (Powell et al, 1999) describes two wheelchair-bound patients who had dramatic improvements in health following the pragmatic rehabilitation regimen now being rolled out to larger groups of patients as a full-scale MRC-funded trial. (Two other seemingly relevant reports in the scientific literature are, in fact, small pilot studies that refer to inpatient treatments within psychiatric wards, vis, Chalder et al 1996 and Essame et al 1998.)
This treatment is not new and hardly promising on the basis of two case reports. But will some people benefit and report improvement of a sort? Well, probably — given that the quality of life of us all (well or unwell) can be improved by changing some of our beliefs and coping behaviour, and increasing our activity levels. But as the authors of the new Canadian definition of CFS/ME make clear, the question is whether such treatments (generally recognised not to be a cure for patients' physical illnesses or suitable for everyone with ME) add anything to what is available in the general medical setting, and hence whether the taxpayer-spend of £1,147,000 (including £411,000 in NHS costs, very useful for oiling the wheels of academic departments) is value for money. And furthermore, there are considerable doubts about whether the trial will address the central problem of ME.
For instance, will each severely-ill person on the FINE trial be given a comprehensive medical assessment to identify somatic (physical) symptoms and signs? Autonomic disturbances, seizures, frank muscle weakness, neuroendocrine disturbances (like sweating episodes), recurrent flu-like symptoms — will they be recorded over the 70 weeks? Symptoms like musculoskeletal pain, neurocognitive problems and sleep dysfunction — will they be comprehensively assessed? Will patients receive treatment for any of these? Or will these signs and symptoms of ME be ignored while the patients' beliefs are explored by nurses steeped in the biopsychosocial culture of their paymasters? Estimates vary but there are probably around 20,000 children with ME in the UK alone, yet some doctors do not recognise the problem, and fail to investigate it... If the scientific study of ME in adults is sparse given the extent of the problem, in terms of children it is almost non-existent Unhelpful Counsel? MERGE's response to the CMO working report on ME/CFS. An excerpt: "In one patient-group survey, only 7% of respondents found the therapy [CBT] ‘helpful’, compared with 26% who believed it made them ‘worse’. The remaining 67% reported ‘no change’."
Estimates vary but there are probably around 20,000 children with ME in the UK alone, yet some doctors do not recognise the problem, and fail to investigate it...
If the scientific study of ME in adults is sparse given the extent of the problem, in terms of children it is almost non-existent
Unhelpful Counsel? MERGE's response to the CMO working report on ME/CFS.
An excerpt: "In one patient-group survey, only 7% of respondents found the therapy [CBT] ‘helpful’, compared with 26% who believed it made them ‘worse’. The remaining 67% reported ‘no change’."
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.
'Although there are many clinical similarities between these three illnesses, our results indicate peripheral cholinergic abnormalities in the vascular endothelium of only patients with CFS, suggesting that this syndrome has a different aetiology, which might involve inhibition of vascular cholinesterase.'
Increased neutrophil apoptosis in chronic fatigue syndrome Journal of Clinical Pathology, 2004
We have shown that patients with CFS also have increased neutrophil apoptosis and higher levels of TGF-b1. We suggest that increased neutrophil apoptosis and inhibition of transmigration of neutrophils by higher TGF-b1 levels may be indicative of a persistent viral infection or a toxic state giving rise to many of the symptoms which characterize CFS.
Some of the symptoms of ME/CFS are suggestive of an underlying viral or toxic illness associated with persistent infection and immune activation. Indeed, there have been various reports of immunological disturbances and viral infections in the illness . Neutrophils represent 50-60% of the total circulating white blood cells, and are short-lived reactive cells fundamental to the functioning of an intact immune system. Minor alterations to neutrophil function can have profound immunological consequences, with amplification of the inflammatory response and the production of cytokines. As part of the resolution of inflammation, accumulated neutrophils are removed by apoptosis, a process where unwanted or damaged cells are eliminated without releasing their toxic contents and enhancing the inflammatory response. It is also a process associated with release of anti-inflammatory mediators, most specifically the production of transforming growth factor beta-1 (TGF beta-1), implicated in the pathogenesis of CFS.
While increased neutrophil apoptosis is present in patients with infection , this is the first time elements of neutrophil function have been determined in ME/CFS patients. The importance of these findings lies in the fact that neutrophils from ME/CFS patients have a greater proportion of apoptotic cells and are significantly less viable when compared with healthy subjects. The same neutrophils expressed a higher percentage of the death receptor TNF-RI and had increased binding of annexin V, indicative of phosphatidylserine exposure. Apoptosis is triggered by signals initiated by both external stimuli and internal sensors. The death receptor mediated pathway or the extrinsic pathway starts with the binding of TNF-family ligands to the death receptor TNF-RI, and results in a cascade of immune events. There is, however, crosstalk between the extrinsic and the intrinsic (mitochondrial-dependent) pathways which can result in the release of cytochrome C and the triggering of further apoptotic mechanisms These authors have demonstrated that ME/CFS patients have an increased neutrophil expression of TNF-RI, and surmise that the accelerated apoptosis of these cells is a consequence of extrinsic factors affecting apoptotic pathways. The additional finding that neutrophils from ME/CFS patients have more surface expression of TNF-RI further indicates that such cells are obviously more susceptible to apoptosis.
Prolonged acetylcholine-induced vasodilatation in the peripheral microcirculation of patients with chronic fatigue syndrome Clinical Physiology and Functional Imaging, 2003
'Prolongation of ACh-induced vasodilatation is suggestive of a disturbance to cholinergic pathways, perhaps within the vascular endothelium of patients with CFS, and might be related to some of the unusual vascular symptoms, such as hypotension and orthostatic intolerance, which are characteristic of the condition.'
Enhanced sensitivity of the peripheral cholinergic vascular response in patients with chronic fatigue syndrome American Journal of Medicine, 2000
'The results of this study show enhanced cholinergic activity in the peripheral microcirculation of patients with ME/CFS. This enhancement was specific for acetylcholine. We could not determine why the patients have acetylcholine supersensitivity in the skin microcirculation. However, many of the symptoms of chronic fatigue syndrome, such as temperature sensitivity, gastrointestinal difficulties, problems with sleep, and orthostatic intolerance, are consistent with altered cholinergic activity, and the findings might have important implications for features of chronic fatigue syndrome that involve vascular integrity.'
The specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfil the criteria by MERGE