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UK Issues Guideline for Diagnosis & Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy)

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On August 22, 2007 the UK’s National Health Service (NHS) launched a clinical guideline titled “Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy) – Diagnosis and management of CFS/ME in adults and children.” In effect, “Doubting doctors are ordered to take ME patients seriously,” stated a headline in the London Daily Mail (see “press clips” below), while some patient groups responded with calls for investment in further research to identify more beneficial therapies.

The new guideline was developed by the National Institute for Health and Clinical Excellence (NICE) to advise NHS clinicians on the appropriate treatment and care of people with CFS/ME. The guideline and all related resources are publicly available at the CFS/ME website http://www.nice.org.uk/CG53. These materials include:

n For professionals – The full guideline, appendixes citing supporting references, a “quick reference guide,” and links to tools for supporting local implementation and patient education.

The clearly written guideline includes general principles of care, presentation, diagnosis (including testing to rule out other disorders), general patient management strategies, referral to CFS/ME specialist, specialist care, management of setbacks, review and ongoing management, key principles of care for people with severe CFS/ME, and more.

n For patients, carers, and the public – an educational version including an explanation of CFS/ME, what to expect in their clinical diagnosis and management, and questions to ask. To quote the summary:

“This guideline is about the care of people with chronic fatigue syndrome, which is also called myalgic encephalomyelitis (or encephalopathy), in the NHS in England and Wales. Throughout this booklet we refer to the condition as CFS/ME for short. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with CFS/ME, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in CFS/ME. The guideline aims to help you understand the care and treatment options that should be available in the NHS.”

All documents can be freely viewed, printed, or downloaded from the NHS site, or you may enquire about ordering hard copies by e-mail at nice@prolog.uk.com or by phone at 0870 155 5455

Press Clips

Early reports in the press issued in concert with the guideline’s unveiling include:

n “Doubting doctors are ordered to take ME patients seriously” – Daily Mail.

n “Treat ME more seriously, doctors ordered” – Telegraph.

n “New NICE Guideline to Improve Diagnosis and Management of Chronic Fatigue Syndrome in Adults and Children” (includes a summary of guideline recommendations) – Medical News Today.

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3 thoughts on “UK Issues Guideline for Diagnosis & Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy)”

  1. leomonkey says:

    I just started reading the physician document – NICE clinical guideline (the first on the list) and was very concerned about a suggestion made under Specialist CFS/ME care section (on page 10).

    “Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit.”

    I have used both approaches. I am concerned of the wording as this seems to suggest that CBT is an intervention to improve CFS/ME… my review of the research does not suggest this at all but rather it helps a person cope with their symptoms.

    Secondly, graded exercise does not have clear evidence of benefit. There has been a number of studies (some I believe can be found on this site) that suggest the opposite is true. On a personal level, I used graded exercise under the direction of my doctor for a year only to find my condition worsen… thus my personal case study supports some of the research that indicates that graded exercise has a range of results and should be very carefully considered before implementing.

  2. leomonkey says:

    One more comment and I am just going to leave this alone…

    In reviewing the Nice Clinical Guideline document, I was a concerned about the ramifications of the statement made on page 18:

    “No research evidence was found to support the experience of some people with CFS/ME that they are more intolerant of drug treatment and have more severe adverse/side effects. However, if people with CFS/ME have concerns, healthcare professionals may consider starting drug treatment for CFS/ME symptoms at a lower dose than in usual clinical practice. The dose may be increased gradually, in agreement with the patient.”

    I must admit I have not specifically researched this myself, but one thing I do know is that it does not allow for other conditions common to those with CFS/ME… chemical sensitivities, IBS… and the such. With IBS, some of the medications that can cause nausea and stomach upset… like many antibiotics… are an issue. Thus, this perhaps should have been rephrased to state that no evidence indicated CFS may cause drug intolerance, other common conditions that occur in conjunction with CFS may.

    I will have to review these documents to see if they list the research they are refering to. When the document states “research shows” it does not appear to be referenced.

  3. desertlass says:

    I am highly disappointed by these articles. While it is always hopeful to finally have some validation in the press, it is equally disheartening to read the same frustrating discussions of CBT and GET as effective therapies for M.E., specifically.

    I find it absolutely illogical to describe children who “can’t get out of bed” and then talk enthusiastically about a treatment that consists mainly of getting them out of bed. This isn’t a case of the little boy in “the Secret Garden” who just needed some fresh air, activity, friendship and distraction in the garden in order to get him to stop “worrying” over his condition.

    That was a literary as well as fanciful depiction of CBT and GET. It is also a Romantic ideal, which is fine where it is appropriately applicable, but has not real basis in medical science as relates to M.E./CFS

    If we M.E. patients were gradually improving with these therapies, wouldn’t we be their biggest supporters?

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