Media Coverage of the PACE Trial

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Text of Media Coverage of the PACE Trial

Media Reports of the PACE Trial Research published in The Lancet, Feb 18 th 2011 REUTERS Pushing limits can help chronic fatigue patients

By Kate Kelland LONDON | Thu Feb 17, 2011 7:11pm EST Pushing limits can help chronic fatigue patients (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)


TRIAL OFFERS HOPE FOR ME SUFFERERSME sufferers have been offered new hope following a landmark study which suggests the condition can be reversed with counselling and exercise. Researchers have now identified two forms of treatment for chronic fatigue syndrome (CFS), both of which could help thousands of patients. The ground-breaking study is the most comprehensive to date and challenges the widely accepted belief that the illness cannot be cured. Scientists, who spent eight years on the research, believe it could herald a new dawn for the treatment of ME. They hope their findings will dispel the notion that nothing 2

can be done for those living with the condition in the UK - a figure which currently stands at around a quarter of a million. Researchers found six in 10 patients reported significant improvements after undergoing either cognitive behavioural therapy (CBT) - a type of counselling which helps people take charge of issues, while encouraging them to increase their activity or graded exercise therapy (GET), which is based on gradually increasing exercise. Half of these people reported a return to "normal" energy levels. However, the study showed one of the most common CFS treatments has no definitive medical benefit. Adaptive pacing therapy (APT), which teaches patients to match their activity level to the amount of energy they have, does little more than help sufferers manage their illness, the study showed. Though it has been widely advocated, the therapy has never before been scientifically tested. Michael Sharpe, Professor of Psychological Medicine at the University of Edinburgh and co-author of the report, said scientists had achieved a significant "milestone" by proving GET and CBT were both effective and safe. Read more:


Brain and body training treats ME, UK study saysCognitive Behavioural and Graded Exercise therapies most successful for ME 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. This study matters, it matters a lot. Professor Willie Hamilton, Peninsula College of Medicine and Dentistry 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."


Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds studyBy DAILY MAIL REPORTERS Last updated at 11:32 AM on 18th February 2011

It may seem counter-intuitive to patients suffering with fatigue, but scientists have found encouraging people with ME to push themselves to their limits gives the best hope of recovery. British researchers conducted the largest trial to date of people with the mysterious and debilitating