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CBT and exercise challenge 'no cure' for ME

Counselling and exercise could help reverse the effects of ME, a new study has suggested.

Experts have identified two types of treatment for chronic fatigue syndrome, potentially helping thousands of sufferers.

It is a widely accepted belief that ME cannot be cured, but the landmark study - which is the most comprehensive to date - questions this.

Scientists involved in the research spent eight years working on it, and believe that it could spark a new era of ME treatment.

They hope the result will change the belief that nothing can be done for the quarter of a million sufferers who are living with the condition in the UK.

Researchers found six in 10 patients reported significant improvements after undergoing either cognitive behavioural therapy (CBT), while encouraging them to increase their activity - or graded exercise therapy, 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, 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 exercise therapy and CBT were both effective and safe.

Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation is published in The Lancet.

Action for ME said it was “surprised and disappointed” by the results of the study, insisting its claims were “exaggerated”.

Chief executive Sir Peter Spencer said the findings contradicted evidence from the charity’s own surveys and those of other patient groups.

“The pace trial was limited to patients who were well enough to travel to hospital for therapy and those who had fatigue as a primary symptom,” he said.

We’re going viral! Have you friends heard about the ‘seat on the board’ petition? Let’s ensure nurses are actively involved in the new commissioning consortia.

 

Readers' comments (4)

  • This is a very sad day for ME patients.

    The PACE trial,by selecting its participants according to the Oxford criteria effectively excluded all those who have neuro-immune ME.It could be said to be fraudulent to extrapolate the slightly positive results based on idopathic chronic fatigue patients and apply them to those who are suffering from the devastating possibly infectious retroviral-associated neurological disease.

    The motives of the researchers, who have chosen to ignore the 4 000 research papers, including those by the Drs Light, which graphically proved that exercise triggered a cascade of debilitating inflammatory responses, must be questioned and maybe their affiliations with the insurance industry and the DWP may have influenced the design of the study.

    Large-scale studies undertaken by the patient associations have proven that the training regimes promoted by the PACE trial cause a high proportion of strictly-defined M.E. patients to relapse, often for years. The tragic cases of Lyn Gilderdale and Sophia Miraz, both of whom were made severely ill by this treatment approach, are prime examples of the dangers of the proposed regime. Both girls died and autopsies revealed that they had inflammation of the spinal cord.

    Given the potential harmful effects of GET members of the medical profession who implement this approach might be subject to accusations of medical malfeasance.

    The most appropriate approach to coping with the illness and maximising activity is 'pacing', which is quite different to that purported to be of little use by the trial, which was a modified form of GET.

    Please support ME patients to maximise their capabilities and do not implement a training programme designed for those with idiopathetic fatigue on those who have the devastating disease M.E.

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  • ME is neurological illness (WHO ICD10-G93.3) and is distinct from Fatigue Syndrome (WHO F48). The PACE trial used the Oxford Criteria which exclude those with neurological disorders. In other words, the PACE results are irrelevant for those with ME.
    This never was a scientific trial. It does not use one single objective measure of outcome. It exists to serve the vested interests of government, the DWP and the medical insurance industry. GET can and has caused significant permanent decline in health and even death when applied to those with ME. With what cynical foresight then have the authors stated, " No responsibility is accepted by the authors for the application of treatments described in these manuals outside of the PACE trial".
    For an in depth analysis of the PACE trial see Magical Medicine:How to make a disease disappear at www.meactionuk.org.uk The most cursory of readings will reveal serious shortcomings.
    For the latest biomedical research from international researchers attend the annual Invest in ME International ME/CFS conference on 20th May in London (details at www.investinme.org).
    Let nursing care and treatments for ME in the UK be based on sound scientific evidence.

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  • The authors of this PACE trial are not just intellectually dishonest, they are morally reprehensible.

    By using up the precious little funding available for CFS/ME research on this PACE "psychobabble plus exercise" nonsense, these psychiatrists are not only unforgivably letting down millions of people with CFS/ME, but also, this waste of funds significantly hinders proper scientific biomedical research into finding a cure for CFS/ME.

    CFS/ME is not only a terrible disease, it also costs the US economy alone an estimated $25 billion a year, due to lost work hours and medical care costs.

    Yes, that's right: every year that CFS/ME ignored by the science funding bodies, and we get this "Mickey Mouse" science from psychiatrists instead, it costs the US economy $25 billion (and the global economic costs of CSF/ME are clearly even higher).

    What other serious disease would have something so intellectually backwards as "exercise therapy". It is a complete joke. You spend hundreds of thousands of dollars to show what? That a bit of walking may (or may not) help some CFS/ME patients! Wow, what rocket science! Einstein eat your heart out!

    If this PACE research were a 10th grade school science project for 15 year olds, it would be fine; but it is embarrassing to humanity to see it published in serious scientific journals like the Lancet.

    Most psychiatrists and psychologists that purportedly research CFS/ME have little or no understanding of the complex biochemical, immunological and neurological aberrations that are usually found in CFS/ME patients. So why on Earth are these psychiatrists meddling in a field about which they know next to nothing?!

    CFS/ME research needs highly intelligent minds, not second-rate psychiatric psychobabble.

    Science funding bodies take note now: your lack of interest in proper biomedical research into CFS/ME is costing the US $25 billion a year. You need to be held accountable for this.

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  • This article discusses The PACE trial, a £5 million UK study which has caused much controversy since its connception in 2004. The overdue results are pure spin. The outcome measures were changed, post design (1,2).

    Initially (2) study design stated an SF-36 score of 75 as a test of 'recovery'. In the final results, this had been reduced to 60, normative for 75 - 84 year olds. Entry criteria were for an SF-36 score of <65.

    The cohort was filtered first using the Oxford Criteria, which excludes patients with a neurological condition. Myalgic Encephalomyelitis means painful muscles and brain and spinal chord inflammation. In this study, supposedly on ME/CFS patients, no neuro-immune conditions were tested.

    Lies, damn lies, and statistics: one of the first things to look out for is the scale. In the graph of the study outcomes, printed in the Lancet, it is expanded by dint of starting the vertical axis at 18 and ending it at 30. This dramatasizes (to coin a useful word) the "improvement" in the results.

    The subjective results were insignificant. Best case was 6 - 9% improvement. That's about £750,000.00 per percentage point.

    These results are long overdue. We knew they had not got the results they had hoped for. They have made up for that with spin. No surprise.

    For one participant's experience, click this link http://www.guardian.co.uk/discussion/comment-permalink/9627125

    1) http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

    2) http://www.ncbi.nlm.nih.gov/pubmed/17397525

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