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Brain And Body Training Helps ME Says New UK Study

February 18, 2011

Chronic Fatigue Syndrome, also known as ME, should be treated with a form of behavioural therapy or exercise, say British scientists.

Writing in The Lancet, they argue that the approach preferred by some charities, managing energy levels, is less successful.

Action for ME disputed the claims, which it said were exaggerated.

A quarter of a million people in the UK have the condition, yet its cause remains unknown.

Symptoms include severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep.

This study looked at which treatments were the most successful. It compared CBT (cognitive behavioural therapy – changing how people think and act), graded exercise therapy – gradually increasing the amount of exercise, and adaptive pacing therapy – planning activity to avoid fatigue.

All of the 641 people who took part in the study had chronic fatigue syndrome, but were not bed-bound.

The authors say cognitive behavioural and graded exercise therapies were the most successful, both at reducing fatigue and increasing physical function.

With cognitive behavioural therapy, 30% of patients returned to normal levels of fatigue and physical function.

They say that adaptive pacing therapy is little better than basic medical advice.

Professor Michael Sharpe, co-author of the study from the University of Edinburgh, said: “One of the difficulties in the field is ambiguity, what is the cause and most importantly, what is the treatment?

“The evidence up to now has remained controversial. The helpful thing about this trial is that it actually gives pretty clear cut evidence about effectiveness and safety.”

Exaggerated

But the charity Action for ME said the conclusions were exaggerated and questioned the safety of graded exercise therapy.

Its CEO, Sir Peter Spencer, said: “The findings contradict the considerable evidence of our own surveys.

“Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for cognitive behavioural therapy and 45% for graded exercise therapy.

“Worryingly, 34% reported that graded exercise therapy made them worse.”

The authors suggest that poor advice, such as suggestions to just go to the gym, could be responsible for bad experiences with the exercise therapy.

They said that the amount of exercise needed to be tailored to each person.

The Association of Young People with ME welcomed the findings.

It said it hoped that fears about graded exercise and CBT were laid to rest, and that the study needed to be repeated in children.

Professor Willie Hamilton, GP and professor of primary care diagnostics at Peninsula College of Medicine and Dentistry, said: “This study matters, it matters a lot.

“Up until now we have known only that CBT and graded exercise therapy work for some people. We didn’t know if pacing worked. This caused a real dilemma, especially for those in primary care. We didn’t know whether to recommend pacing, or to refer for CBT or GET.

“Worse still, not all GPs have access to CBT or GET, so ended up suggesting pacing almost by default. This study should solve that dilemma.”

NICE (the National Institute for Health and Clinical Excellence) said the findings were in line with current recommendations.

Dr Fergus Macbeth, director of the centre for clinical practice at NICE, said: “We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline.”

4 Comments leave one →
  1. February 18, 2011 1:22 pm

    These two therapies are notoriously ineffective in dealing with the symptoms of ME, and GET (Graded Exercise Therapy) is widely-known to be harmful to anyone with genuine ME, particularly in the early stages and particularly when the patient is encouraged to push him/herself beyond their limits – there have been many incidents of people’s health being ruined that way. It’s not a question of there being “fears” about GET being harmful; there is a long history of patient reports to that effect, going back to at least the early 1990s.

    It’s noticeable that AYME approve of this report, alone among patient organisations (even Action for ME which also has a lap-dog reputation); their inner clique are notorious for being in league with the medical establishment and out of touch with the patient community. They rely on touching human interest stories and the endorsement of celebrities (like the now discredited Esther Rantzen) to “raise awareness” while promoting this harmful nonsense.

    One of the problems with studies of this type is that not everyone involved will have the same illness, as the criteria for “Chronic Fatigue Syndrome” are too broad only to take in ME patients. ME is quite a distinct illness, which comes on suddenly and worsens with exercise or stress, and the reaction is often delayed and can last a long time. Not everyone with chronic fatigue has ME, and the patient organisations (like AYME) may be dealing with a lot of patients who qualify for a CFS diagnosis but who do not have ME. I see nothing wrong with that – there are many charities which look after people with many different conditions (the Muscular Dystrophy Association, for example) – what is unacceptable is that they endorse material that may be good for some of their members as good for all of them.

  2. samedifference1 permalink*
    February 18, 2011 1:27 pm

    Thanks for your comments. I was hoping you might share your thoughts on this.

  3. February 18, 2011 3:49 pm

    I would add that AYME’s inner clique are out of touch with their own membership as well as the patient community at large, and in 2009 one of their medical advisers (Nigel Speight, who is well-renowned for helping families in which parents of children with ME are accused by social workers of harming them or of perpetuating their illness) resigned, saying his views were not being taken seriously by the charity.

    One long-term severe patient I spoke to said that, if it weren’t for the work AYME did in keeping sufferers in touch with each other, it would be better off closed down.

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