Pushing limits can help chronic fatigue patients

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LONDON | Thu Feb 17, 2011 7:11pm EST

LONDON (Reuters) - Helping chronic fatigue syndrome patients to push their limits and try to overcome the condition produces a better rate of recovery than getting them to accept the illness and adapt to a limited life, new research has found.

British researchers conducted the largest trial to date of people with the mysterious and debilitating condition, also known as ME, and found that up to 60 percent of patients improved if therapists encouraged them gradually to do more.

By contrast, patients whose therapists encouraged them to accept the limits of their illness and adapt their lifestyles to live with it showed significantly less improvement when they were followed up after 24 and 52 weeks.

Chronic fatigue syndrome (CFS) is a long-term debilitating condition of disabling physical and mental fatigue, poor concentration and memory, disturbed sleep and muscle and joint pain. It also known as myalgic encephalomyelitis (ME) and affects around 17 million people worldwide.

There is no cure for CSF/ME and scientists don't know what causes it. Many sufferers say they think their illness started after a viral infection, but suggested links to a virus known as XMRV were shown in a recent scientific paper to have been based on contaminated samples in a lab.

There is also controversy about what kinds of treatments should be given, with some patients reluctant to accept that psychotherapies might help.

Some patient groups in Britain, where more than a quarter of a million people are estimated to have CFS/ME, have expressed concern that treatments like cognitive behavior therapy (CBT) that encourage patients to try to overcome or push the limits of their condition may even be harmful.

But in this study, which involved 640 patients in Britain, researchers found that CBT and another therapy called gradual exercise therapy (GET) were far more successful than adaptive pacing therapy (APT), in which the patient tries only to match activity levels to the amount of energy they have.

"It is very encouraging that we have found not one but two treatments that are similarly helpful to patients," said Trudie Chalder from King's College London, who worked on the study and published its findings in the Lancet medical journal on Friday.

All patients in the trial received specialist medical care which included advice about managing the illness and prescribed medicines for symptoms such as insomnia and pain.

The success of the added therapies was measured by patient ratings of fatigue, physical function, overall health and the ability to lead a normal life, plus tests of how far the patient could walk in six minutes, and of sleep, mood and fatigue levels after exertion.

The results showed that CBT and GET benefited up to 60 percent of patients, and around 30 percent of patients in each of these treatment groups said their energy levels and ability to function and returned to near normal levels.

External experts commenting on the study said its design was robust and its findings important.

"This study..matters a lot. CFS/ME is common, and causes a lot of suffering," said Professor Willie Hamilton of Britain's Peninsula College of Medicine and Dentistry. "I now know what to suggest to my patients."

(Reporting by Kate Kelland, editing by Paul Casciato)

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Comments (7)
alex3619 wrote:
Nobody can say anything intelligent on this topic without reference to the 442 page official complaint to the PACE trials by Prof. Malcolm Hooper, called “Magical Medicine”. This study uses an unvalidated diagnostic criteria for ME/CFS that is not the internationally recognized standard. It ignores maybe 99% of the published peer reviewed scientific evidence. It ignores this evidence in study design, implementation and probably also analysis (I have yet to read the study, but I am familiar with it). This is snake oil, dressed up as fish oil. The physiological problems from exercise in ME/CFS have been partly worked out, and there are profound changes to the mRNA of the cells post exercise. Physiology is nearly always ignored in the CBT/GET promoting studies. Why is that?

Feb 17, 2011 8:53pm EST  --  Report as abuse
Marmite234 wrote:
The creation of the CFS ‘diagnosis’ has been terrible for patients. For 9 years I have suffered from crippling fatigue, with doctors trying to treat my beliefs rather than find the cause of my symptoms. I worked very hard to increase the amount of exercise I did, but it only made me worse.

Just one month ago, following my own research on the internet, I was able to see a specialist in connective tissue disorders. They informed me that I suffered from type III Ehlers-Danlos syndrome, a rare genetic disorder. Part of the advice they gave me was to avoid doing exactly the sort of exercises which previous doctors have told me to increase, and claimed would lead to a full recovery.

Not only have I lost 9 years of my life to this disease, but I also had to put up with patronising quacks trying to convince me that I had control over my symptoms, and I needed to recognise their psychological and emotional origins in order to recover. Now it seems that all these abusive approaches to medicine are able to achieve is slight changes in some of the answers patients provide to their questionnaires, yet Hans Knoop hopes this will convince people that CFS can be treated! When medicine abandons the truth in order to encourage false but ‘healthy’ beliefs, patients will always suffer. I just hope that one day those responsible will be held to account.

Feb 17, 2011 9:10pm EST  --  Report as abuse
UC17 wrote:
The largest ever clinical trial into the effects of CBT, GET and adaptive pacing therapy (APT) has produced results that are clearly at serious variance from those reported by the largest ever survey of patient opinion on these forms of treatment.

We find the trial results extremely worrying because pacing, in the form that the MEA recommends, may as a result be no longer be offered as a treatment option in NHS clinics. And at the same time, NICE may well strengthen its inflexible and unhelpful recommendations regarding CBT and GET.

We also fear that the way in which the results are already being reported in media headlines – eg Got ME? Just get out and exercise, say scientists (UK Independent) – will lead some doctors to advise inappropriate exercise regimes that will cause a serious relapse.

This is not a good day for people with ME/CFS.

They have a complex multisystem illness that requires a range of treatment options based on their individual symptoms as well as the stage and severity of their illness

Dr Charles Shepherd
Hon Medical Adviser, ME Association (UK)
Web: www.meassociation.org.uk

Feb 18, 2011 8:10am EST  --  Report as abuse
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