From the Journal of Neurology, Neurosurgery and Psychiatry, 17 November 2012
Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
Charlotte Smith, Simon Wessely
Department of Psychological Medicine, Institute of Psychiatry, Weston Education Centre, London, UK
Abstract
Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease.
In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.
In this commentary, an example of where this might be the case has been analysed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).
It appears from reflection and analysis of this document that this process may indeed have gone awry. We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.
This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.
I’m not sure I understand this…surely if a course of treatment does not cure the patient or, where the patient cannot be cured, leaves them feeling better with better functionality then the treatment is either wholly or partially successful.
Where the patient does not recover and there is no sustained improvement, the patient does not feel better over a prolonged period (or feels worse) and has no increase in functionality then treatment has not worked.
Even where there is success there is always room for improvement. Drugs with fewer side effects, a cure rather than condition management.
I would suggest that it is natural that there are different perspectives and opinions. It is through different opinions and perspectives that we are challenged and develop. Surely this is a good thing?
http://epetitions.direct.gov.uk/petitions/31208
Wessely at his worst. More nonsense from the Bunko Booth.
Apparently, only CBT and GET work – anything else which helps must be a case of misperception by the patient.
Why listen to your patients? Why waste time? Just get on with the job and proclaim success regardless of the outcome.
Intelligent people realised long ago that humans are individuals; they respond differently to any one treatment – they require individual assessment and treatment.
As for “..dangerous diagnostic criteria for ME/CFS…”, I assume that refers to medical diagnosis based on empirical data, rather than using tea leaves and financial gain to decide on treatments.
Wessely has no empirical evidence for the position he has adopted, so why should anyone be interested in what he says?
I think this kind of approach/article is potentially dangerous as it suggests that there is a ‘right’ way to evaluate, assess and manage the research path of an illness.
In fact, by suggesting that the Scottish Public Health Network process has ‘gone awry’, simply because it diverges from a previously well trodden path, the author might be in danger of attempting to coerce or direct the path of Science itself.
Well, there I was thinking Wessely had vowed not to have anything to do with ME research any more – he’s said that on various occasions – because we are such a terrifying and threatening lot and he feels safer in Afghanistan…..
Here is the Scottish proposal in full which Simon objects too.
http://www.scotphn.net/pdf/Final_report_web_version_271110.pdf
And here is BMJ paper in full: http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf
I wish Simon would just graciously accept that he has had his time in the spotlight and it really is time to move on. He sounds very much like a man who is protesting too much. Exercise makes PWME worse, and that won’t change just because he wants it to be so.
The ‘dangerous diagnostics criteria’ he refers to, are surely the current – grossly inadequate – ones which have enabled this situation to arise in first place, where ME patients can be prescribed potentially dangerous therapies because they are being conflated with fatigued patients who do respond to CBT/GET.
The report to which the Wessely article objects seems to me to be written circumspectfully and with respect to the range of views which exist concerning ME-CFS. I am grateful to the commentator who provided links, but the link to the Wessely article only takes one to the abstract – unless one is willing to pay £24 to have access to the full article.
The fundamental flaw in the CBT/GET approach is that ME is an illness from which people are most likely to recover if, in the words of Ramsay and Acheson, they are allowed virtually complete rest from the inception of the illness. ME/CFS is physical, not psychological. Most sufferers are active, energetic, ambitious and enjoying productive lives before becoming (in many cases, suddenly) very ill. The help they need is to understand that there is a window at the beginning when, if they can bear, psychologically, to adopt the lifestyle of a very sick person, and limit their activities to the absolute minimum, there is a possibility of progress toward recovery. We people who have ME need to learn to economise physical exertion above all, and be helped to manage our lives so that we have enough physical energy to do what is necessary – and with enough help in doing so, we may be able to resume a semblance of our normal lives, including the jobs and activities which we long to continue to carry out.
The assumption of CBT as described in the box, and the general philosophy of ‘rehabilitation’ is that we need to be encouraged to be more active, to add ‘exercise therapy’ to our struggles just to get through everyday living – it is not surprising that we get sicker, in fact this is so much of a trend that some people now believe that ME/CFS is in its nature a progressive illness.
It has only become an illness in which people follow a downward path to severe and long-term disability because we are being encouraged (or coerced) into ‘treatments’ involving activity, when the very definition of ME/CFS is that ‘activity’ exacerbates symptoms: Ramsay describes people who, because of conscientiousness or advice to exercise, continue to exert themselves until they reach a state of permanent exhaustion, and Acheson points out that ‘relapse following premature attempts at rehabilitation’ are well known.
Line 2 – ‘circumspectly’ must have been tired when I wrote that!
Sorry, Nancy, I thought I had linked to the full BMJ pdf – I have it but don’t know how to get it up here.