Re: Recovery from chronic fatigue syndrome after treatments given in the PACE trial
P. D. White1*, K. Goldsmith2, A. L. Johnson3,4, T. Chalder5 and M. Sharpe6 ; PACE Trial Management Group#
pdf format:
http://journals.cambridge.org/images/fileUpload/documents/White_PSM_Paper_Jan13.pdf
As one of the authors of the London criteria, I feel a duty of care to inform subscribers that I have no evidence that these were used by White et al in the PACE trial. The descriptions in the manuals and the paper above are consistent with a watered-down definition, edited without my knowledge and approval and published, in part, in the Westcare Report. Indeed, the reference for the criteria alludes to this source. The fact that the latter did not include the original London criteria was passed on to Prof White at an early stage, i.e., before the start of the study. On his request, I sent him a copy of the original but his refusal to confirm that he would employ this version led me to ask that I not be listed as a co-author. I felt that I could not take responsibility for any ME criteria I had not been involved with. Today, I am happy I made that decision.
No person who fulfils the original London criteria can have any psychiatric disorder which may confound fatigue and other symptoms, so that should have been at least one difference between the groups (i.e. far fewer psychiatric disorders). Had the genuine London criteria been used, any attempt at increasing activity levels and ignoring early warning signs of over-exertion (as the fear-avoidance model underpinning GET requires) should, by definition, have resulted in relapses and deterioration. This is because ME is characterized by an increase in symptoms following minimal exertion. As this occurs during the acute as well as the chronic phase, it cannot be attributed to deconditioning. Continuing activity in the hope that the body will respond differently is like advising a smoker with lung cancer to increase the number of cigarettes in order to shrink the tumour. The similar recovery rates are another reason why I am not persuaded that this study included the said number of patients with ME.
It is my view that the authors used the name 'the London criteria' for something they knew to be an incomplete and flawed version. I submit that this is not best practice.
The London criteria were formulated in 1993 for studies into ME funded by AFME. Other researchers who were interested in ME subsequently asked permission to use them as they did not like the criteria for CFS.
Updated criteria for ME with their emphasis on the core symptoms of ME and consistent with the views of many clinicians who had studied and described the illness since the thirties, were devised and published in 2009.
Ellen Goudsmit FBPsS
Classic ME: the basics. Foods Matter, 2012, 71. Online 21st Oct.
http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-classic-10-12.html
Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33.
http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-P797.aspx
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Ellen M. Goudsmit PhD, C.Psychol. FBPsS
HPC registered practitioner psychologist (PYL15084)
Available via Skype: ellen.goudsmit
For information on ME and CFS, see:
http://www.axfordsabode.org.uk/me/me.htm
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