By PENNY SWIFT
ME Research UK has slammed an analytical report published in the latest The Lancet Psychiatry that claims ME/CFS patients have “fear avoidance beliefs” that exercise will exacerbate their symptoms. This, the report maintains, is a major negative factor that perpetuates both fatigue and disability in Chronic Fatigue Syndrome (CFS) sufferers.
In other words, the report is claiming that because ME/CFS patients are generally afraid to exercise, they are reducing their chances of recovery.
But the truth is:
We all know that ME patients are highly motivated to get well, and more than willing to do whatever activity or exercise is appropriate for their personal circumstances, from a short walk to sitting up in bed. ME Research UK
A medical research body, ME Research UK was set up in 2000 to both commission and fund biomedical (scientific) investigations into the cause of Myalgic Encephalomyelitis (ME) and CFS, which are currently controversially referred to internationally as ME/CFS. The illness (ME/CFS) – or illnesses, since there is a growing school of thought that they are quite different from one another – is debilitating and widespread worldwide. In the UK alone as many as a quarter million people are affected, and there is no known cure.
In a statement titled 50 Shades of Avoidance published late yesterday on its FaceBook page, the research organization said that while the report might fascinate “professional cognitive-behavioural theorists,” the idea of fear avoidance in this context was both “inappropriate and absurd.”
The report is the sixth that has been based on the much publicized UK Medical Research Council’s (MRC) 2011 PACE trial – the largest ever study to focus on ME/CFS treatments. But, says ME Research, it is “difficult to understand” because it uses very sophisticated statistical analysis processes. While the psychosocial approaches suggested do have some effect, according to the original PACE trial data they benefit only 10 to 15 percent of ME/CFS patients. Most patients are not helped using the techniques suggested, “a fact confirmed time and time again when ME charities survey their members.” Quite simply, most people suffering from ME/CFS do not get any benefit from “these interventions.”
But the real tragedy, ME Research believes, is that whenever a new PACE trial analysis is published, “a rash of media stories trumpet its arrival.”
Their statement cites three media reports published yesterday, all which have “little or no relevance to the real, lived experience of ME patients.”
- The Independent declared: Chronic fatigue syndrome sufferers ‘can benefit from exercise’
- The Daily Mail announced: Chronic fatigue victims ‘suffer fear of exercise’: Patients are anxious activities such as walking could aggravate the condition
- The Daily Telegraph stated: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers
While the new report published in The Lancet Psychiatry deals with “rehabilitative therapies for chronic fatigue syndrome,” previous analyses covered cost-effectiveness, pain, so-called recovery, adverse effects of the illnesses, and statistical methods used in research.
Interestingly, ME Research UK maintains that this sixth report is the most complicated of all six because it deals with so-called “mechanisms” that might “underpin the effect of cognitive behavioral therapies (CBT) or graded exercise.” They also point out that the use of this very sophisticated statistical analysis further complicates the issue, making it even more difficult to follow the logic.
The Lancet Psychiatry Article
Titled Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial, The Lancet Psychiatry article was funded by the UK MRC, England’s Department of Health, and various other UK research and health organizations. It is available free to all subscribers.
It maintains that when CBT is added to specialist medical care (SMC) or graded exercise therapy (GET), fatigue is more effectively reduced and physical function is improved.
Their main finding was that “fear avoidance beliefs” were the primary problem: “The results support a treatment model in which both beliefs and behaviour play a part in perpetuating fatigue and disability in chronic fatigue syndrome.”
The PACE Study
Based on the experiences of a mere 640 patients from England and Scotland attending hospital clinics for treatment of ME/CFS, the PACE trial study is understood to be the largest ever of its kind – certainly in the UK.
What the study did was to assess the safety and effectiveness of four different treatments and to the surprise of many, it found that GET and CBT were the most effective. As a result, it was suggested by these researchers that these treatments – both of which have come under huge international attack over time – should be offered to all ME/CFS patients.
Response From ME and CFS Sufferers
In a word: ANGER!
FaceBook exploded yesterday when people who have experienced ME/CFS firsthand read about The Lancet Psychiatry report.
- the treatment of us as patients is abhorrent
- awful press yet again meantime we continue to suffer alone
- about time the researchers changed the record
- they keep toying with us, like a cat with a mouse
- All picked up on a regurgitated research from 4 years ago. Wonder how many more… And when will it make it to USA
And lastly, a stance that most sufferers endorse:
The whole idea you can take a disease like this and exercise your way to health is foolishness. It’s insane.