Intended for healthcare professionals

Feature Medical Research

Dangers of research into chronic fatigue syndrome

BMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d3780 (Published 22 June 2011) Cite this as: BMJ 2011;342:d3780

please listen to us

Please listen to us!

Nasim Marie Jafry: 'No one is saying psychiatric illness is not real'
:
Dear Joss Bray, This is not about psychiatric illness being less real or
less important than physical illness.This is about patients with
neurological illness being inappropriately labelled as mentally ill....
...And the oft-quoted body and mind being inextricably linked is not the
issue here. Patients with ME are angry and frightened because we are not
being listened to. That is all. And it can so easily be remedied.

Kelly Latta: 'A molehill' :
The opinion that these patients prefer to have a severe neuroimmune
disease over psychosocial therapies, therapies that are no more effective
than in any in other organic disease, merely serves to marginalize such
patients further. Would patients with AIDS, MS, Parkinson's Disease, or
Alzheimers disease be willing to settle for "moderately effective"
tertiary treatments?

Andrew J. Kewley: 'If there was more than scraps of research, we
wouldn't need to fight' :
For a case in point, Dr Leonard Jason, a psychologist at DePaul University
in Chicago is popular with patients, despite publishing clinical studies
on CBT and research on psychosocial risk factors in CFS. I believe the
difference is that he does not overstate the benefits of CBT/GET and he
has consistently advocated for significant increases in biomedical
research.

May Iren Kapelrud: 'What would a psychiatrist do?' :
But when people protest and they come with relevant and constructive
arguments, then I wish Wessely openminded would listen and try to
understand us. He may very well be a good psychiatrist to my knowledge,
but I don't believe he has understood CFS/ME! This is the reason for the
complaints by CFS/ME patients, and there's quite a lot of people who
disagree with him! In Norway we are many!

Louise Gunn: 'CFS is not a diagnosis. It is a socially constructed
metaphor' :
The situation is made worse by the fact that Simon Wessely's diagnostic
methodology, which is used in UK government sponsored trials, such as
PACE, excludes patients with CFS 2, and includes people with CFS 1 and
people with clinical depression.

Katherine M Wimhurst: 'Response to Nigel Hawkes' article about
research into CFS, 22nd June 2011' :
And while I cannot condone 'hate mail', responses of ME patients to the
somatoform model cannot be understood without addressing the prejudice,
disbelief and neglect that many have suffered as a consequence of that
model.

Linda Crowhurst: 'Who are the real victims ?' :
Patients who have read my articles know that I believe that ME may not be
the same illness as CFS and that the former may be perpetuated by an
infection or abnormal reaction to infection. I've never supported any of
the current psychiatric theories and prefer more flexible, pragmatic
interventions than graded exercise and CBT as described in the literature
on ME/CFS.

Jane Clout: 'Dangers of research into chronic fatigue syndrome and
ME' :
I wholeheartedly agree that the only definition that reliably diagnoses
myalgic encephalomyelitis is the Canadian Consensus (5,6), all others
currently in use conflate the neurological disease with depression and
idiopathic fatigue, a fact that has been perhaps the greatest obstacle to
clarity in the search for understanding of, and effective treatment for,
the discrete disease Myalgic Encephalomyelitis.

Ian T. McLachlan: 'Dangers of not challenging research into chronic
fatigue syndrome' :
...The BMJ therefore should see their role as one of lessening the gap
between such figures and the people they are there to serve. The fact that
it has not happened in this instance only serves to feed into the very
concerns being raised within the article and cast doubt as to the real
motives behind such a publication.

Linda Crowhurst: 'Who are the real victims ?' :
And all because of a quite inappropriate focus on therapy.
Surely it is time for is the BMJ to start raising some serious medical
issues about the most isolated, negated and neglected, severely physically
ill patients in the UK and stop publishing a biased psychiatric
representation of ME ?

Barbara Greene: 'Re:If only life was so simple' :
The situation in England is unbearable for patients with the psychiatrists
thinking they understand M.E. and denying biomedical treatment to
patients.

Andrew J. Kewley: 'If there was more than scraps of research, we
wouldn't need to fight' :
...For example, when you compare the research funding for CFS by the
National Institutes of Health in the USA [1], with studies on societal
economic costs [2] and level of disability, a certain disease ranks at the
bottom of the list: Chronic Fatigue Syndrome.

Competing interests: No competing interests

27 June 2011
May Iren Kapelrud
ME-patient
Norway