Thursday, 12 February 2015

Newry & Mourne Group receive Expert Statement from Dr Jonathan Kerr

Joan McParland of the Newry and Mourne ME Fibromyalgia Support Group says she is delighted to receive another expert statement refuting the recent press coverage of ME and exercise fears.

Dr Jonathan Kerr, sent this reply: 

Statement on the publication:

Chalder T, et al. Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial. Lancet Psychiatry 2015;2(2):141-52.
Dr Jonathan R Kerr  MD, PhD, FRCPath, Associate Professor of Epidemiology, Universidad del Rosario, Quinta de Mutis, Bogota 111221, Colombia.
The latest paper by the UK Psychiatrists whose focus of study is Chronic Fatigue Syndrome (CFS), demonstrates some quite incredible psychology. It begins with the assumption that Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET) when added to specialist medical care improves physical function. And the purpose of the paper was to examine the ´mechanisms´ involved. They concluded ..
´Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET. Changes in both beliefs and behaviour mediated the effects of both CBT and GET, but more so for GET. The results support a treatment model in which both beliefs and behaviour play a part in perpetuating fatigue and disability in chronic fatigue syndrome.´

So, what is the meaning of this? In words that most would understand, this means that if you are a CFS patient and you want to get benefit out of the only government-approved CFS treatments, you need to get over your fear that these treatments will lead to a deterioration in your health. More fundamentally, this means that to overcome your mental block (which prevents you from getting better), you need to dispel any mistrust in the psychiatrists and their science, because they know better than you what is best for you. And no mention of enterovirus, Epstein-Barr virus, Parvovirus B19, exposure to organophosphate pesticides, vaccination, immune dysfunction, etc. How simple it could be if patients would just give their complete trust in the absence of supportive evidence.

In response we might feel frustrated by the almost unbelievable disregard for the reality of the biological disease in question, but, in my opinion, it is better to first understand why we may have found ourselves in this situation.

CFS is unique in that there are no reliable and verifiable findings on standard clinical examination. And, so people could theoretically lie about whether they suffer the symptoms of it or not. It seems to me that the basis of this whole situation may be that powerful employers do not want to risk the situation of having to pay sickness compensation based on non-verifiable symptoms as stated by individual patients. And, if CFS becomes accepted as a biological disease, CFS patients and anyone wishing to receive sickness compensation, would have the power to receive it anytime they might wish. And so, such powerful employers may have donated money for ´research´, which may then have been awarded for psychological research with the purpose of ´discovering´ the psychological pathogenesis of CFS itself, and (as in this latest paper), to explain the psychological reasons for non-response to the psychological treatments. Therefore, the problem has most likely been solved for such powerful employers, as we know that psychiatric diagnoses are not covered by sickness compensation schemes, and there is a body of psychiatric research on CFS going back decades, which is regularly used by some to demonstrate that CFS is a psychological disease.

If the above is true, is this the reason there are two camps regarding beliefs on the pathogenesis of CFS, with little trust between them? Why do the two research camps not trust each other? I suppose that the psychiatrists might say that such lack of trust indicates psychological problems in the mistrustful individual, but to me, that would depend on the context, and there seems little wrong with the intuition of most CFS patients who do not trust in CBT and GET. There are no other diseases, to my knowledge, where we see two such totally divided camps which differ on their beliefs about not only the cause of a disease, but also the lack of response to treatments offered by one side only.

Just in case this statement is misunderstood. I do not believe that CFS patients tell lies about their disease, and I do believe that CFS is a real disease with a biological pathogenesis, that is triggered by virus infection resulting in chronic immune activation and a long-term flu-like illness with disastrous consequences for patients. I believe that CFS results in real and sometimes severe disability which may be life long. I do not believe that CBT and GET are valid treatments for CFS, and I do not believe that patients´ fear avoidance behaviour is the reason that CBT and GET do not perform optimally in those patients that it does not help.

6 comments:

  1. May I award Dr Kerr a medal for making my week so much better after all that dratted IOM business? Bravo!

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    1. Yes... agree.. cheered me up too. xx

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  2. This is great Sally and Joan. Pushy me - Can we encourage him to submit something to the BMJ as well?

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    1. I understand that Joan has made just that suggestion ;)

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  3. For such a small support group run by volunteers who are themselves patients the Newry &Mourne ME & Fibromyalgia group has achieved an amazing result, well done to all concerned.
    A response by Dr Kerr in the BMJ would be the icing on the cake.

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  4. Yp huge thanks for sharing that and thanks to Dr Kerr for returning the sense to the world.

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