Category: Organizations

Disagreements still exist over the chronic fatigue syndrome

Editor—Although the ME Association welcomes the royal colleges’ unequivocal conclusion that the chronic fatigue syndrome is a genuine and disabling condition,1 we also agree that their report will “engender disagreement on both sides of the Atlantic.”2 We have no problem in accepting that the alternative name for the condition—myalgic encephalomyelitis (ME)—is pathologically incorrect, and this is a matter that we now intend to address. However, labels are important to patients as well as doctors, and support groups throughout the world are unanimous in their view that “chronic fatigue syndrome” is a totally inadequate way of describing the symptomatology and associated disability. The chronic fatigue syndrome may well become a dustbin diagnosis for anyone with chronic fatigue, and a new name that is acceptable to both doctors and patients clearly needs to be found.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2125625/pdf/9006489.pdf

 

Source: Shepherd C. Disagreements still exist over the chronic fatigue syndrome. BMJ. 1997 Jan 11;314(7074):146. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2125625/pdf/9006489.pdf

 

Patients with a self diagnosis of myalgic encephalomyelitis

Comment on: Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-S J Hurel and colleagues should have checked their facts more thoroughly before making such a generalised attack on the content of literature produced by the two support groups for patients with myalgic encephalomyelitis (ME).

The ME Association does not believe that candida albicans is involved in the pathogenesis of the condition. Our booklet Guidelines for the Care of Patients states that “no reliable scientific evidence has ever been published to support such a link” and that “consequently, anti-candida regimes involving highly restricted diets, probiotics and antifungal drugs cannot be recommended.”2 Equally, we repeatedly warn our members about the serious dangers of colonic cleansing (particularly in relation to the risk of unhygienic operators transferring gastrointestinal pathogens) and advise extreme caution when consulting herbalists or buying over the counter herbal remedies. If we really were producing literature that contained pseudoscientific nonsense and advocated dubious forms of alternative therapy I doubt whether the Department of Health would be providing funding to expand the work of our information department.

Had the authors checked with our booklet they would have found that we are not in favour of self diagnosis and strongly recommend consideration of nearly 50 physical and psychological conditions that can present with chronic fatigue as the principal clinical feature. In this context pituitary tumours are specifically mentioned as we are aware of at least two other cases similar to that reported by Hurel and colleagues in which misdiagnosis occurred. Furthermore, our literature emphasises that “significant or progressive weight loss is not a normal feature of ME, and where it occurs alternative explanations (eg hormonal) should always be excluded.”

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf

 

Source: Shepherd C. Patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Oct 14;311(7011):1021. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf (Full comment)

 

Chronic fatigue syndrome. Committee for Science and Education, Medical Association of South Africa

Abstract:

OBJECTIVE: To acknowledge the clinical syndrome chronic fatigue syndrome (CFS) and outline the diagnostic criteria and reasonable management.

OUTCOMES: Attempt at containment of treatment cost and improvement of the quality of care of patients with CFS.

EVIDENCE: Delphi-type commentary from 20 expert clinicians and appropriate organisations. Limited literature survey.

VALUES: To clarify the reasonable management of CFS amid conflicting clinical opinion on a condition of concern to patients, funders and doctors. An adaptation of an existing guideline was sent to organisations and individuals for comment. Comments received were included in this guideline where possible.

BENEFITS, HARMS AND COSTS. To acknowledge a clinical syndrome with a reasonable approach to management considering the cost implications. No cost analysis was done.

RECOMMENDATIONS: To recommend the following: (i) diagnostic criteria for CFS; (ii) potential differential diagnoses and possible investigations; and (iii) management protocol.

VALIDATION: The draft guidelines were subjected to external review by individual doctors who are acknowledged CFS treaters, doctor groups and the patient support group. There were major disputes about the content, with the responses falling into two groups: those who do not believe CFS is a distinguishable illness, and those who do.

DEVELOPER AND FUNDING: The Committee for Science and Education, Medical Association of South Africa.

ENDORSEMENTS: Medical Association of South Africa and national health care organisations (see list at the end of the document).

Comment in: Committee to investigate chronic fatigue syndrome. [S Afr Med J. 1996]

 

Source: Chronic fatigue syndrome. Committee for Science and Education, Medical Association of South Africa. S Afr Med J. 1995 Aug;85(8):780-2. [No authors listed] http://www.ncbi.nlm.nih.gov/pubmed/8553151

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Although the precise pathoaetiology of myalgic encephalomyelitis remains the subject of debate, Shonagh Scott and colleagues are incorrect in asserting that “no evidence exists” of encephalitis. Buchwald et al carried out a large cohort study in which neurological symptoms, results of magnetic resonance imaging, and lymphocyte phenotyping suggested that the patients were experiencing “a chronic, immunologically mediated inflammatory process of the central nervous system.”2 More recently, Schwartz et al, who used single photon emission computed tomography, described abnormalities that were consistent with the hypothesis that “a chronic viral encephalitis” may be present.3 Furthermore, in the only postmortem study to have been published the polymerase chain reaction showed enteroviral sequences (compatible with coxsackie virus B3) in samples from the hypothalamus and brain stem,4 indicating that viral persistence within selective parts of the central nervous system may also play a part.

Given the uncertainties surrounding both the pathoaetiology and the diagnostic criteria for myalgic encephalomyelitis, it is not surprising to learn that self diagnosis produces difficulties in the doctor-patient relationship. The conclusions of and motives behind Scott and colleagues’ study must, however, be questioned in view of the fact that the fictitious patients had a list of vague symptoms that failed to satisfy diagnostic criteria for either a chronic fatigue syndrome (as defined by the International Chronic Fatigue Syndrome Study Group)5 or a postinfectious fatigue syndrome (as defined by current British criteria).6 Neither did the symptoms accord with those that patient support organisations would agree constitute a satisfactory diagnosis of myalgic encephalomyelitis.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/pdf/bmj00593-0058b.pdf

 

Source: Shepherd C. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Shonagh Scott and colleagues’ paper on general practitioners’ attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.’ Contrary to the authors’ claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.

Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/pdf/bmj00593-0058a.pdf

 

Source: Arber M. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/

 

Chronic fatigue syndrome. ME Association is honest about prognosis

Comment on: Chronic fatigue syndrome: prevalence and outcome. [BMJ. 1994]

 

Editor,-I wish to challenge the assertion by S M Lawrie and A J Pelosi that the prognosis given by some myalgic encephalomyelitis associations is nihilistic. In fact, the figures currently used by the ME Association are in line with the data on chronicity and disability found in various follow up studies of patients, including those of the epidemics of the ’30s, ’40s, and ’50s.

The chronicity of myalgic encephalomyelitis was documented as long ago as 1956 when Sigurdsson and Gudmundsson reported that, of 39 patients involved in the 1948 Icelandic epidemic, only five (1/3%) had recovered completely. Thirty two years later a re-examination of 10 Icelandic patients by Hyde and Bergmann showed that the recovery rate was no more than 20% (two of the 10).

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540204/pdf/bmj00440-0055d.pdf

 

Source: Howes S. Chronic fatigue syndrome. ME Association is honest about prognosis. BMJ. 1994 May 14;308(6939):1299-300. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540204/

 

Chronic fatigue syndrome. Self help groups give valuable support

Editor,-Tony Delamothe’s article on myalgic encephalomyelitis was refreshingly objective,’ but this cannot be said of S M Lawrie and A J Pelosi’s editorial.2 Delamothe questions whether “medical journals keep doctors in the dark.”‘ We believe that the editorial was not even handed.

Within two weeks of publication of the article and editorial our paper on self help groups was published.3 Lawrie and Pelosi’s editorial stated, “if an illness is attributed entirely to external sources there will be little scope for self help.”2 Our results were quite different. The Moray Firth myalgic encephalomyelitis self help group has existed for the past seven years and has had one coordinator (AG). A representative sample of members was surveyed by questionnaire in 1988, 1989, and 1992; response rates were 44/53 (83%), 19/34 (56%), and 42/49 (86%) respectively. The results (table) contradict the statement in the editorial.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/pdf/bmj00440-0054c.pdf

 

Source: Ho-Yen DO, Grant A. Chronic fatigue syndrome. Self help groups give valuable support. BMJ. 1994 May 14;308(6939):1298-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/

 

Chronic fatigue syndrome

Comment on: The chronic fatigue syndrome: what do we know? [BMJ. 1993]

 

Editor,-In P K Thomas’s succinct review of chronic fatigue syndrome, the extensive morbidity, misery, and misinformation that exists around this subject is not stated. The present situation is also not helped by the majority of medical practitioners having no education in, and little experience of, managing this common disorder.

Irrespective of the cause or the emotional response this syndrome produces in professionals, it creates considerable disability in our communities. The overall prevalence of people who suffer with intrusive fatigue is estimated at 150 000. Many of these (as yet unmeasured) are debilitated to such an extent that they are unable to work and are dependent on carers. It is interesting to note that within the NHS there is at the moment no single unit dedicated or equipped to assess, treat, and provide long term support for such patients. Limited facilities have been provided in beds that are earmarked for other disorders.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1678593/pdf/bmj00032-0058b.pdf

 

Source: Cox DL, Findley LJ. Chronic fatigue syndrome. BMJ. 1993 Jul 31;307(6899):328. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1678593/

 

Self help organization’s advice on myalgic encephalomyelitis

Comment on: Outcome in the chronic fatigue syndrome. [BMJ. 1992]

 

EDITOR,-I should like to assure Simon Wessely that neither the ME Association nor ME Action regards Michael Sharpe and colleagues’ findings in patients with chronic fatigue’ as another attack on its credibility. Nor do we see why the paper should “further sour relations between the organisations and the profession.”

As Wessely points out, the apparent relation between functional impairment and membership of a self help organisation at follow up does not mean that membership of such an organisation is responsible for the impairment. Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability.

As regards the potential damage resulting from inaccurate information about myalgic encephalomyelitis, it is worth emphasising that the quote that illustrates this came from Nursing Standard and not from a magazine for patients. The British organisations have long been unhappy with the way the media have portrayed the illness and reviewed existing research, and it is often extremely difficult to get erroneous or biased information corrected. Sometimes we get a right of reply, but usually we don’t.

Finally, I wish to make clear that our current advice on exercise and stress is based on sound scientific research, the recommendations of our medical advisers, and 50 years’ experience. Since our aim is to help patients it would be ridiculous for us to ignore good research and to stick instead to outdated explanations, speculation, or even prejudice. No one gains from such a narrow minded approach, least of all us.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/pdf/bmj00091-0063a.pdf

 

Source: Hume MC. Self help organization’s advice on myalgic encephalomyelitis. BMJ. 1992 Sep 12;305(6854):649. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/

 

Outcome in the chronic fatigue syndrome

Comment in: Self help organization’s advice on myalgic encephalomyelitis. [BMJ. 1992]

Comment on: Follow up of patients presenting with fatigue to an infectious diseases clinic. [BMJ. 1992]

 

EDITOR,-Michael Sharpe and colleagues’ paper confirms what many clinicians have long suspected -namely, that the prognosis for those with a chronic fatigue syndrome who reach specialist care is poor.’ The paper also suggests that membership of a self help organisation is associated with a poor outcome. Although the authors emphasise that this association is not necessarily causal, I fear that the self help organisations may interpret this as another attack on their credibility, which will further sour relations between the organisations and the profession.

What are the possible explanations for these disturbing findings? Sharpe and colleagues suggest that patients’ beliefs are an important mediator of disability, a view I share.2 An article written by a sufferer illustrates how this might happen: “These living viruses are erratic and unpredictable. The prickly-edged ones pierce their way into the body cells. If disturbed by the patient’s activity they become as aggressive as a disturbed wasps’ nest, and can be felt giving needle-like jabs (or stimulating the nerves to do so).” It is easy to understand how such beliefs, regardless of their scientific accuracy, amplify disability.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1882994/pdf/bmj00086-0047b.pdf

 

Source: Wessely S. Outcome in the chronic fatigue syndrome. BMJ. 1992 Aug 8;305(6849):365. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1882994/