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NICE guidelines for chronic fatigue syndrome miss the mark




The latest National Institute for Health and Clinical Excellence (NICE) guidelines for chronic fatigue syndrome recommend ineffective treatments.

The latest set of guidelines for doctors on how to manage patients with chronic fatigue syndrome from the UK National Institute for Health and Clinical Excellence (NICE) are continuing to draw criticism from almost every quarter.

The guidelines recommend that patients with chronic fatigue syndrome (also known as myalgic encephalomyelitis or myalgic encephalopathy), now commonly referred to as CFS/ME, should be offered a course of either cognitive behaviour therapy (CBT) or graded exercise therapy (GET). They also advocate so-called 'activity management'.

According to prevalence estimates from NICE itself, the guidelines will affect over 200,000 CFS/E patients in the UK. It would be hoped therefore that the guidelines offer the best advice possible for the management of the condition but many patients and doctors feel the guidelines miss the mark by a wide margin.

Dr. Charles Shepherd, Medical Director of the M.E. Association and author of Living with M.E., believes the evidence simply isn't there for recommending CBT and GET as first-line treatment for CFS/ME. In a letter published in the British Medical Journal on September 15th he points out that the published evidence for the effectiveness remains weak and inconsistent for both approaches, especially group CBT sessions.

Based on evidence submitted by CFS/ME patients themselves, the chief medical officer's report concluded that CBT produced "no change" in 67% of cases and actually made the patients' condition "worse" in 26% of cases. In addition, around half of the patients reported that inappropriate exercise therapy had also made their condition worse.

Now a group of psychologists has also criticized the NICE guidance for lacking the evidence to back up its recommendations and being too prescriptive, restricting the individualization of treatment to the particular patient, which many feel is essential.

The British Psychological Society began submitting evidence earlier this week before an independent formal request for a review of the NICE guidance was entered at the High Court yesterday.

The Pulse website quotes Dr Martin Crawshaw, chair of the society's professional practice board as saying: 'Activity management is untested and there is no advice for those who cannot increase activity levels, while advocating cognitive behavioral therapy and graded exercise therapy limits a flexible approach.

The court action is being brought by the One Click health advocacy group. They intend to present substantial evidence showing that CFS/ME is a biochemical and neurological condition and therefore the purely psychological management of the condition advocated by NICE is totally inappropriate and could be damaging to patients.

In a press release on the One Click website Professor Anthony Komaroff from Harvard Medical School said: "There are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over."

The Daily Telegraph newspaper has also covered the story and asked readers who suffer from CFS/ME to write to them with their own experiences of CBT and GET.

CFS/ME patients clearly deserve better than the current NICE guidelines. Advice based on sound evidence is the least that would be expected. Given that a one to one course of CBT over 12 to 16 sessions can cost well over £1500 and professionally supervised exercise therapy programs are likely to be a similar drain on finances, one has to wonder what could be achieved if that money was pumped into research efforts which remain woefully underfunded.


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