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:
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.
May I award Dr Kerr a medal for making my week so much better after all that dratted IOM business? Bravo!
ReplyDeleteYes... agree.. cheered me up too. xx
DeleteThis is great Sally and Joan. Pushy me - Can we encourage him to submit something to the BMJ as well?
ReplyDeleteI understand that Joan has made just that suggestion ;)
DeleteFor 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.
ReplyDeleteA response by Dr Kerr in the BMJ would be the icing on the cake.