An economic analysis of this new fatigue Journal from a consumer point of view: Ciaran Farrell

An economic analysis of this new fatigue Journal from a consumer point of view

Ciaran Farrell  |  12 May 2009

Some sketchy details have emerged of a new “Journal” entitled “Fatigue”. It is not clear at this stage if this new publication will be a full peer reviewed mainstream academic and scientific Journal, or a lesser publication. I very much suspect that it will not take the form of a full peer reviewed mainstream academic journal, and may well be a sort of in-house magazine style Journal as published by some of the patient organisations in the US in order to make the science and medicine of professional doctors and researchers are accessible to the public.

In order to be a mainstream academic scientific and medical Journal, the word “Journal” is normally used in the title, such as, the “Journal of chronic fatigue syndrome” which closed down a couple of years ago due to the prohibitive costs involved and what could best be termed as a rather niche market within the mainstream academic and scientific marketplace. The Journal of Chronic Fatigue Syndrome was published by Howarth press, and even this organisation could not sustain the losses incurred by this publication. I do not consider that the individuals concerned in the venture of this new Fatigue Journal have either the financial backing or resources necessary to establish and maintain a front-line peer reviewed academic and scientific journal. Neither, it would appear, that they have the backing of an organisation such as the Howarth press in order to print paper copies of the Journal and ensure that they are distributed to various scientific academic and medical libraries throughout the world.

Nor do I see that the editorial group has the breadth and depth of the editorial board of the Journal of Chronic Fatigue Syndrome, so I cannot see that this enterprise can be mounted on the same basis, as those concerned  simply do not have the wherewithal to do so.

Therefore, it would be most likely that those concerned simply want a vehicle for their own work and a chance to be able to attract funders and donors for the organisations and institutions that carry out their research work, and those of their favoured colleagues by way of a magazine style publication which presumably would be available online only in order to reduce costs, and accessed principally through a website.

In my view, those concerned with this initiative have been around within the patient and carer communities in their  own countries and internationally to realise that a Journal of any sort simply entitled, ” Fatigue” would not be  acceptable to the patients and carers involved in the ME/CFS/ PVFS/CFIDS community is concerned. Perhaps they consider that the acceptance of their initiative by the patient and carer communities is secondary to the academic scientific and financial goals they seek. If so, they are simply wrong, because they failed to analyse and anticipate the demands of many of their readers, because presumably they consider that lay people are not important when it comes to the discussion of technical scientific and medical issues.

Perhaps they feel by broadening the appeal of their Journal to encompass the all embracing nature of fatigue that they will not suffer the fate of the Journal of Chronic Fatigue Syndrome. In this too, they are wrong, as in order to cover the vast swathe of ground that would be encompassed by fatigue they require far more human and financial resources than they obviously have at their disposal.

It is known for example that here in the UK, Charles Shepherd of the ME Association administers the Ramsay Research Fund on the behalf of thatcharity, and it is unknown at this time as to whether or not any charitable funds will be put into this venture by Charles Shepherd on behalf of the ME Association. This new Journal of Fatigue may be a means for the ME Association to publish the research that it has commissioned. However, the ME Association has a very poor record of being accountable both in terms of the research that they have published and the financial contributions the charity has made to the research concerned, and it is always been unclear where the charity has supported research financially, or has merely done so politically.

Dr. Kerr is a known recipient of charitable funds from various charities in the UK, and his research is also funded by the CDC in America and other organisations as well. The others involved no doubt also have links to various charities and organisations that fund their work or activities, or with which they are associated.

There is no indication given so far that this Journal of Fatigue will be open to the various patient and carer communities to participate in and contribute to the scientific academic and medical debates that concern us, because after all, we are the ones who suffer from the illness and disability which those involved in the fatigue Journal wish to debate, presumably in a high-flown environment which excludes us.

I believe this to be wrong, firstly because too many of these high-powered journals simply do not take into account the views of patients and carers as they are closed clubs for academics and doctors only, in which the public have no place. This is one of the reasons for the disconnect between activism on the part of patients and carers and the medical and scientific worlds inhabited by the researchers who presume to be acting upon our behalf, but who do not listen to us about the real nature of the illness we suffer from.

The second reason flows from the first, and it is this, if the patient and carer communities cannot influence or direct research into the illness that they suffer from, then the researchers are likely to look in the wrong places and in the  wrong ways for the cause of the illness, its treatment and the medical and social care of sufferers.

The third reason follows on from the other two, and it is that those doctors and researchers who take public money for their activities, and especially those who are funded by, or administer charitable funds must in my view be accountable to the patient and carer communities they serve, and upon whom they are dependent for funds.

Therefore my advice in getting the name of this Journal and its proposed contents changed, and opening it up to contributions from us lay people is very simple, we should vote with our purses and wallets, and deny those concerned our political, and most importantly our financial support, until such time as the editor and the editorial board of this fatigue Journal make public statements that they consider that the concepts of customer service apply to them in their enterprise just as much as they do in the high street.

These public statements should contain an explicit commitment to consult the patient and carer communities on the name of the journal, and an explicit commitment that patient and carer communities, that is lay people, may contribute to, and comment upon the research work conducted or reported through the journal concerned.

I therefore urge that no one make any form of financial contribution to any of the organisations concerned with any member of the editorial board, or the editor, or any organisation that funds any of the individuals research work or organisation.

Ciaran Farrell
UK ME Sufferer

12 May 2009