Monday, 8 August 2016
Who is responsible?
It's a serious question. Where does the buck stop?
I am asking because, the National Institute of Clinical Excellence (NICE) guidelines for myalgic encephalomyelitis, ME, still recommend two controversial therapies: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).
Actually NICE prefixes the name, ME, with "CFS" (chronic fatigue syndrome) - a shocking misnomer, that suggests patients are simply fatigued or tired. This would appear to be an intentional attempt to belittle the disease. It certainly doesn't indicate the potential for ME to become so severe that some patients exist in a living limbo of agonising immobility for years and even decades.
Yet General Practice doctors consult NICE guidelines, see the word "exercise" and regularly tell their ME patients to get out and starting exercising.
I too was given this advice at the start of my illness. "Three short brisk walks a day", I was told. It didn't work for me, and I doubt it would work for anyone with this debilitating disease. Why would it? One of the main problems with the disease is that exertion of any kind exacerbates all symptoms. Indeed, in my own case, trying to follow the advice I was given led only to increasing disability.
Patient groups and charities, are very aware of the problems with NICE guidelines and have often pointed out that both CBT and GET tend to do more harm than good. The ME Association survey clearly shows that 74% of those doing GET say their symptoms are made worse.
Further, the now notorious PACE Trial which provides the so-called evidence base for GET and CBT, in fact only shows minor improvements for a small percentage of individuals. Add to this, the fact that the methods used in the PACE trial, have been scientifically questioned, and that the authors are going to great lengths to resist releasing their data, and suddenly the evidence seems dubious.
Yet still patients are being subjected to this "exercise" paradigm.
So why is nothing changing? Why does NICE cling to these harmful and questionable therapies?
What has happened to the medical maxim "first do no harm"?
And who is ultimately responsible for the harm being caused?
I don't blame the doctors. They refer to the guidelines and believe them to be the best medical information available. They advise as they are advised.
Doctors also read media headlines, and sadly most ME news stories claim that people with ME just need to exercise and think positively in order to recover. It certainly seems like good common sense advice for the life-weary. Yet because ME has no clinically accepted biomarkers, it is easy for doctors to genuinely think the ME patients they see are just run-down. Or, conversely, to think that those who are just run-down might qualify as having the condition Chronic Fatigue Syndrome, which curiously the media always follow with the phrase "also known as ME".
One way and another, it is easy to see how confusion arises.
Yet for those who have the severely disabling, long-term, life-altering, debilitating disease of Myalgic Encephalomyelitis there can be no confusion: these patients know they have something very physically wrong with them. Any small extra thing a person with ME tries to attempt, results in flu-like payback, and potentially a ratcheting downwards of their long term health. The disease is relentlessly cruel, stealing away the very essence of each sufferer's existence.
And for the most severely ill it seems there is little the NHS can offer. Charities regularly get calls from concerned patients and their families, because home visits are denied, and trips to health centres or hospitals are too detrimental to the patient's well-being.
So it seems, severe ME patients are largely ignored by health services, and the NICE guidelines have few suggestions for patients reaching this state. If patients are lucky, they are given the equivalent of palliative care to ease their symptoms, but not much else.
Yet there are many anecdotal stories of Graded Exercise Therapy being the initial trigger that sent mild or moderately ill patients hurtling into the abyss of severe ME. I cannot understand why these worrying stories, and the reports from the charities are being so blatantly ignored.
I ask again: Who is responsible?
NICE guidelines for CFS/ME: http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
PACE Trial: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext
Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Tom Kindlon http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf
ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 http://www.meassociation.org.uk/2015/05/23959/
David Tuller's articles on Virology Blog about the PACE Trial problems : Trial by Error: http://www.virology.ws/2015/10/21/trial-by-error-i/ and further articles on Virology Blog here: http://www.virology.ws/mecfs/
Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data: https://valerieeliotsmith.com/tag/pace-trial/
From Dr Mark Vink: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
Other posts on Just ME:
10 Things ME Patients Need NOW! March 2015
ME Awareness - Why NOT Exercise? May 2014
Graded Exercise Therapy? No Thank You! Sept 2015
The Use of Patient Blogs as a Care Resource
(My video presentation at Queens University Belfast) Sept 2015
Prof. VanNess on recent press reports Jan 2015