[Note that the proposed journal "FATIGUE" has no connection with the International Journal of Fatigue, a publication dedicated to the science and technology of structural fatigue.]
New Journal “FATIGUE”: What’s in a name?
Dr Charles Shepherd, Trustee and Medical Advisor to the ME Association, has accepted an invitation to sit on the Editorial Board of this forthcoming publication which is to be edited by Dr Derek Enlander.
Various informal comments from Dr Enlander in response to expressions of concern from ME patients and advocates around the journal’s proposed title, and in response to requests for clarification of the Editorial Board’s intentions are in circulation. Any formal statements of clarification, notices or press releases issued on behalf of the Editorial Board will be published here, as they become available.
The launch of a new international scientific journal around ME/CFS would always require careful handling and particularly right now, in the current economic and ME/CFS political climates, with continuing dissatisfaction here in the UK and Europe over service provision for people with ME, the reluctance of governments to commit to research programmes, potential changes to the US system of health care provision, international apprehension around the implications for the revision and “harmonization” processes towards DSM-5 and ICD-11 and the pervasive influence of those who would have treatments for this illness restricted to psychosocial programmes for the management of “fatigue” and for the modification of the so-called “faulty illness beliefs” they claim perpetuate the “fatigue”, and on the basis of which they seek to redefine and claim ownership of this illness.
How come the Editorial team behind the development of this new journal did not have the sensitivity and nous to predict that in proposing the title “FATIGUE”, they would likely generate considerable controversy?
News of this journal was released with no clear outline of the concept behind it, the nature and scope of its remit or the rationale behind the choice of the journal’s name. The notice issued on 12th May, coinciding with the start of International ME Awareness Week, told us very little at all.
It’s still not clear whether this new publication is intended to be published as a peer reviewed, mainstream academic and scientific journal or in some other format, for example, as the official organ of a patient organisation, or some other body. It’s not yet known whether it is envisaged that the journal will be published in print form as well as online editions; or as a subscription only journal or accessible to non subscribers or whether its content will be aimed at both the medical/academic community and patients.
It’s not known where the funding for this publication is coming from nor the extent of its affiliations. Dr Shepherd has said that the journal is affiliated to the New York CIFDS Association, but this has yet to be confirmed by the journal’s Editor.
Although he has already accepted a seat on its Editorial Board, Dr Shepherd has said he does not know what the journal will contain in the way of papers and other items, or whom it will be aimed at; he says he shares people’s concerns about the title and that he will be taking this up with Dr Enlander in due course, but that he did not want to approve or condemn a title of a new journal until he had all the facts and had heard the reason why the “FATIGUE” title has been chosen.
Why was he not motivated to make these enquiries before he signed up to this project?
Perhaps Dr Enlander should have waited until more information about this concept could be made available before publishing a sketchy little notice on 12th May. It would also have been appropriate for Dr Enlander to have involved ME and CFS patients in consultations throughout the development of his concept. And since this journal is apparently in the interests of Lyme Disease and Fibromyalgia patients, too – should they not also have been consulted?
The original announcement, circulated via the HelpMECircle mailing list, contained no information at all about the remit of this new publication:
“A new Journal FATIGUE will debut early 2010.
The Editor is Derek Enlander MD, a physician who is on the faculty of Mount Sinai Medical School in New York. He is active in the treatment of CFS/ME, Lyme’s Disease and Fibromyalgia
The Editorial board includes the leading physicians and researchers in CFS/ME, Lyme’s Disease, and Fibromyalgia.
The CFS/ME researchers include in alphabetical order
Dharam Ablashi , USA,
Paul Cheney, USA,
Kenny de Meirleir, Belgium,
Derek Enlander, USA .
Jonathan Kerr, UK ,
Charles Shepherd, UK”
Since issuing this notice, Dr Enlander has disclosed that Dr David Bell (US) has also agreed to become a member of the Editorial Board. (See previous posting by Greg Crowhurst for comment from Dr Bell and others on the use of the term “fatigue”.)
One of the informal responses from Dr Enlander to a request for clarification has been published via Co-Cure mailing list (13.05.09):
“The Journal FATIGUE is not ONLY pointed to ME, CFS, CFIDS but to Post Viral Fatigue, Post Polio Fatigue, Lyme’s Disease, Multiple Sclerosis, Erlichia, Babessiosis, rickettsial disease and other illnesses where fatigue is present.
In making a diagnosis all of these must be considered.
If we called the journal M.E. then the CFS group would complain, if we called it CFIDS the immunologists would complain, these politics are mind consuming. So relax and read a journal that bridges Fatigue in various disease states, we all will learn.
The Editorial board includes some of the best minds who believe that ME/CFS/CFIDS is a physical disease, a matter of prime importance that you should have focused on, at a time when the BMJ , New Scientist, Lancet and other journals proclaim the psychobabble theory.
Derek Enlander M.D., M.R.C.S., L.R.C.P.”
Dr Shepherd, who has said he knows very little about the editor’s plans, is inviting suggestions for alternative names and offering his thoughts on what a journal might usefully focus on.
But Dr Endander has yet to elaborate, himself, on how the editorial board will be defining “fatigue”; how it will be defining the scope of this publication or what is meant by “…other illnesses where fatigue is present”. It suggests that either policy is being formed on the hoof or that the editorial board is unwilling to set out its stall.
One thing is for sure – the news that this editorial team wants to push out a journal under the name of “FATIGUE” has left ME patients reeling.
From Dr Charles Shepherd, 14 May 2009
I suspect that some people will not like what I am going to say – but it does need to be said.
Having read and received some further comments about the title of this new journal, I think someone needs to make the point that while chronic fatigue syndrome/CFS is an awful name for this illness, there are good reasons for researching brain and muscle fatigue as a stand alone subject/symptom in ME/CFS. And despite what appears on the internet, doctors do not automatically equate fatigue with psychiatric causation.
Fatigue in medical terms can be very simply divided into central fatigue and peripheral fatigue.
Central fatigue refers to fatigue that is caused by a problem in the brain, and this is a very significant and poorly understood clinical feature of many neurological illnesses, including multiple sclerosis and Parkinson’s disease. Significant disabling fatigue also occurs in a variety of non neurological illnesses – good examples include most chronic infections (eg hepatitis C, HIV, Lyme, TB), rheumatoid arthritis and cancer – where immune mechanisms/cytokines may well play an important role. In fact, if you ask people with rheumatoid arthritis about disabling symptoms, many will mention fatigue – but you won’t find fatigue in the medical textbook descriptions of RA.
Peripheral fatigue refers to fatigue that has its origins in muscle and here the pathological explanation is often more straightforward. And, there is of course some evidence to indicate that there are muscle abnormalities/peripheral fatigue in a sub-group of people with ME/CFS.
As central fatigue – involving both mental and physical components – is a significant feature of ME/CFS, and many other non psychiatric illnesses, it should therefore be investigated and researched as stand alone subject . Unfortunately, this is not the case at present.
I therefore hope that one strand of future ME/CFS research will be to look at how there may be common mechanisms in the various diseases where central fatigue is a prominent feature – as this could lead to an effective form of treatment for the central fatigue.
In this respect, a medical journal that concentrates on the issue of central (brain and organic) fatigue is not something that should be dismissed.
But I would accept that there are difficulties in choosing a suitable title that reflects the fact that this is not just dealing with fatigue in ME/CFS.
So if anyone has any alternatives to FATIGUE then please say so.
Stephen Ralph maintains the website MEactionUK. From Stephen Ralph, 14 May 2009
To: Dr Charles Shepherd
Everything you have said [below] is all well and good and believable but this is a perspective from one side of the looking glass.
You may have heard of a chap called Professor Simon Wessely. He works in the field of liaison psychiatry at a hospital in London.
I understand that he specialises in a condition known as Chronic Fatigue Syndrome.
I hear and read that he has been specialising in Fatigue for 20 years and that he and his colleagues have a mountain of research relating to “Fatigue” that has become so convincing that his Fatigue research now influences Government Policy, NICE and the Medical Research Council.
Chronic Fatigue to Professor Wessely is a mental health disorder that can be cured by changing faulty illness beliefs.
CBT and GET are used to treat and “cure” “Fatigue” of a chronic nature.
A whole string of NHS clinics have been set up to treat “Fatigue” of a chronic nature and none of those clinics are addressing Fatigue in the context of anything you have written below.
You may also have heard that liaison psychiatry worldwide is trying to have Chronic Fatigue Syndrome reclassified under Somatoform Disorders in the forthcoming ICD-11 and in DSM-V.
So should this happen then where would a new Journal called “Fatigue” stand and how would it cover somatoform disorders or the other side of the looking glass?
Would liaison psychiatrists be excluded from contributing and peer reviewing?
On one side of the looking glass we have Central and Peripheral “Fatigue” as you describe and on the other side of the looking glass we have somatoform “Fatigue” – a concept currently supported by Governments in relation to CFS/ME and welded to CFS/ME by a shed load of dubiously peer reviewed research.
In my previous e-mail I was trying to explain that the word “Fatigue” as a medical term has become a broken word.
In reality “Fatigue” has become a medical double entendre that in relation to “CFS/ME” has been effectively stolen by liaison psychiatry.
Trying to shut a stable door after a horse has bolted seems a difficult endeavour.
How about a Journal called “Emerging Pathologies”?