report – American ME and CFS Society

A new look at chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

It has been 3 years since the Chief Medical Officer reported on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and the time has come for a thorough investigation by an All Party Group drawn from the House of Commons and the House of Lords. We have received many written submissions and are engaged in taking oral evidence in 2-h sessions, which we open to the public as well as interested groups. The group has received a fantastic response to its requests for written evidence over the past few months.

Questions that arise for a government response are the lack of provision and support for patients with CFS/ME, the issue of the clinical definition of CFS/ME, the need for a diagnostic test for CFS/ME, effectiveness of the National Institute for Clinical Excellence guidelines, and criteria used to decide which treatments are best for patients with CFS or myalgic encephalomyelitis.

Source: Gibson I. A new look at chronic fatigue syndrome/myalgic encephalomyelitis.J Clin Pathol. 2007 Feb;60(2):120-1. Epub 2006 Aug 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860614/ (Full article)

Myalgic encephalopathy–an inexact report with doubtful conclusions

Norwegian Knowledge Centre for Health Services was recently commissioned to clarify the scientific basis for the diagnosis and treatment of Myalgic encephalopathy (ME). The report is unfortunately imprecise and conclusions questionable.

Myalgic encephalopathy (ICD-10: G 93.3) is a disease or a spectrum of diseases which are described in many clinical reports internationally. Patients have symptoms of multiple organ systems, often with widespread pain and neurocognitive disorders, and they have an abnormal response by physical or mental activity, with sometimes extreme fatigue and worsening of symptoms and long recovery time. The etiology is unclear.

You can read the rest of this comment here: http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner

Source: Eriksen W. Myalgic encephalopathy–an inexact report with doubtful conclusions. Tidsskr Nor Laegeforen. 2006 Aug 24;126(16):2144; author reply 2144-5. [Article in Norwegian] http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner (Full article)

The report of the Chief Medical Officer’s CFS/ME working group: what does it say and will it help?

Abstract:

Chronic fatigue syndrome (CFS) sometimes known as myalgic encephalomyelitis or encephalopathy (ME) has long been a controversial topic. This year has seen the publication of a report from an independent working party set up by the UK Chief Medical Officer (CMO) to make recommendations for the management of the condition. The report makes a number of general recommendations about the provision of appropriate care and services. The more controversial issues of what to call the illness, the nature of the illness and what treatment should be recommended are all addressed, but in the form of compromise rather than resolution. To the extent that this report is a step towards highlighting the needs not only of patients with CFS but the larger group of patients with symptom-defined conditions, it is to be welcomed. As a guide to management it raises as many questions as it answers. Much remains to be resolved before guidance that is both evidence based and acceptable to all parties is achieved.

Comment in: Medically unexplained symptoms. [Clin Med (Lond). 2002]

Source: Sharpe M. The report of the Chief Medical Officer’s CFS/ME working group: what does it say and will it help? Clin Med (Lond). 2002 Sep-Oct;2(5):427-9. http://www.ncbi.nlm.nih.gov/pubmed/12448589

Editorial on CFS was biased, inaccurate, and misleading

EDITOR—As a member of the chief medical officer’s working group on chronic fatigue syndrome, I consider that Straus has failed to appreciate the difficulties of deciding what constitutes evidence in an illness as uncertain and heterogeneous as this.1 He also misunderstood, or took out of context, some of the key conclusions and recommendations in the chief medical officer’s report.

Although it was agreed that evidence should not just be limited to the results of randomised controlled trials, the findings of the York systematic review were frequently cited. It was therefore disingenuous of Straus to state that information from this review did not influence the report’s conclusions about a wide range of therapeutic interventions. It did.

Equally, it would have been a serious omission if the report had failed to refer to the feedback from patients contained in three large surveys on attitudes to management, as well as two events where patients and carers met with the working group. All three surveys concluded that graded exercise as is currently being done made more people worse than any other intervention. Pacing, however, was found to be beneficial by around 90% of respondents. By dismissing such views as anecdote, Straus fails to appreciate that the Department of Health is encouraging patients to enter into a therapeutic relationship with the medical profession in the management of chronic conditions such as this.2

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122848/

Source: Shepherd C. Editorial on CFS was biased, inaccurate, and misleading. BMJ. 2002 Apr 13;324(7342):914. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122848/ (Full article)

Recognising chronic fatigue is key to improving outcomes

Comment in: Caring for patients with chronic fatigue syndrome. Conclusions in CMO’s report are shaped by anecdote not evidence. [BMJ. 2002]

The government has finally issued its long awaited report on the management of chronic fatigue syndrome (also known as myalgic encephalomyelitis, or “ME”), after delaying publication earlier this month because several committee members resigned (5 January, p 7).

The report says that health professionals should recognise the condition as a chronic illness and that early recognition is key to improving outcomes.

Speaking at the launch, chief medical officer Professor Liam Donaldson acknowledged that the three years spent drawing up the report had been “enormously difficult, complex, and at some times controversial.”

“I’ve received a large amount of correspondence about this,” he said, admitting, “I’m a little surprised we have been able to get such a comprehensive and valuable report.”

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122065/

Source: Eaton L. Recognising chronic fatigue is key to improving outcomes. BMJ. 2002 Jan 19;324(7330):131. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122065/ (Full article)

Managing chronic fatigue syndrome in children

Last month the British press made much of a study purporting to show that chronic fatigue syndrome was the single commonest cause of long term absence from school in Britain.1 The authors claimed to have calculated prevalence figures for both pupils (0.07%) and teachers (0.5%) similar to previously reported figures for the general population.2-4 Dowsett and Colby make much of “clusters” of cases, defined as three or more cases in a school. The press release distributed by one of the authors states that 39% of cases occurred in such clusters, saying that this “suggests that ME results from an infection.” It refers to one cluster extending over several schools in an area where there was “recreational water heavily polluted by sewage.” The published paper contains no reference to pollution by sewage or anything else, but only to several cases in “schools near two new towns in a rural environment alongside recreational water.”

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2126833/pdf/9193280.pdf

Comment in:

Graded exercise in chronic fatigue syndrome. Including patients who rated themselves as a little better would have altered results. [BMJ. 1997]

Chronic fatigue syndrome in children. Journal was wrong to critizise study in schoolchildren. [BMJ. 1997]

Chronic fatigue syndrome in children. Patient organisations are denied a voice. [BMJ. 1997]

Comment on:

Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. [BMJ. 1997]

Source: Marcovitch H. Managing chronic fatigue syndrome in children. BMJ. 1997 Jun 7;314(7095):1635-6. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2126833/pdf/9193280.pdf (Full article)

Chronic fatigue syndrome. Summary of a report of a joint committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners

Abstract:

Chronic Fatigue Syndrome (CFS) is not a single diagnostic entity. It is a symptom complex which can be reached by many different routes. The conceptual model of CFS needs to be changed from one determined by a single cause/agent to one in which dysfunction is the end stage of a multifactorial process. Although it is important to recognise the role of factors that precipitate the condition, greater understanding is required of factors that predispose individuals to develop the illness, and those that perpetuate disability.

Source: Wessely S. Chronic fatigue syndrome. Summary of a report of a joint committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. J R Coll Physicians Lond. 1996 Nov-Dec;30(6):497-504. http://www.ncbi.nlm.nih.gov/pubmed/8961200

Myths dispelled about chronic fatigue syndrome

Chronic fatigue syndrome, despite being commonly known as “yuppie flu,” is not restricted to any social class or occupational group, according to a report by the Royal Colleges of Physicians, Psychiatrists, and General Practitioners.

The report, written at the request of the chief medical officer, Kenneth Calman, aims to dispel some of the popular myths surrounding this controversial condition. It says that there is no convincing evidence that common viral infections cause the chronic fatigue syndrome, although 10% of those with Epstein-Barr virus develop the syndrome.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359076/pdf/bmj00562-0011.pdf

Source: Mulube M. Myths dispelled about chronic fatigue syndrome. BMJ. 1996 Oct 5;313(7061):839. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359076/

Chronic fatigue syndrome

“Biopsychosocial approach” may be difficult in practice

This week a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in Britain issued a report on chronic fatigue syndrome.’ The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it, but it is sure to engender disagreement on both sides of the Atlantic.

The term chronic fatigue syndrome is relatively new. It first appeared in the 1988 proposal by the United States Centers for Disease Control to formalise a working case definition for symptoms that had been variously named and attributed to numerous causes for over two centuries. Through field testing, the case definition was revised and simplified in 1994. In essence, it classifies a constellation of prolonged and debilitat ing symptoms as worthy of medical attention and study (see box). Related case criteria were developed by consensus at Oxford in 199 .4 Neither the American nor the Oxford criteria assume the syndrome to be a single nosological entity. As the royal colleges’ report concludes, the term chronic fatigue syndrome is appropriate because it carries none of the inaccurate aetiological implications of the alternative acronyms-myalgic encephalomyelitis, chronic fatigue syndrome, and immune dysfunction syndrome.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359057/pdf/bmj00562-0007.pdf

Source: Straus SE. Chronic fatigue syndrome. BMJ. 1996 Oct 5;313(7061):831-2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359057/