Re: The Prins Review
This response by Professor Malcolm Hooper was submitted to the Lancet on 16th February 2006 but was rejected for publication in both electronic and paper form. Mindful of the current response by Prins et al to the reply by Neil Abbot and Vance Spence from MERGE, people may wish to read the Hooper response.
Whose hidden agenda? by Professor Malcolm Hooper May 2006
Prins et al. say that some CFS patients "might have a hidden agenda involving insurance issues and invalidity-benefit claims".1 There is in fact no subterfuge. Patients with CFS with a certain level of disability, competently assessed, are entitled to claim benefit. Do Prins et al. disagree?
They further state that receipt of "financial benefits . might also be considered perpetuating factors" in CFS. What is implied by this proposition? Are they suggesting that, if CFS patients were denied benefit, this would force them back to work? In 1999 one prolific American CFS researcher wrote to the "Lancet", dissociating himself from this kind of damaging speculation.2
"Biases towards psychiatric explanations for these syndromes have been filtered to the media", Dr. Jason wrote. "Perhaps the dissatisfaction with medical care . a common theme among patients ., is the stigma they endure due to trivialization of their syndromes". Prins et al. cite Jason 6 times.1 Unfortunately, they do not heed his earlier comments.
The question of CFS patients seeking secondary gain was disposed of in 2002, by authors of the Australian CFS practice guidelines.3 "The psychoanalytic concept of 'secondary gain' has been misused in medicolegal settings, and does not rest on a solid empirical base," they concluded.
In a review which purports to be balanced, Prins et al. promote only their own "psychological CFS model". Australian and Canadian practice guidelines both express trenchant concerns in respect of this approach. "Outdated and simplistic notions of 'psychogenesis', with their implications of 'imaginary' illness and 'unconscious malingering', leave patients feeling stigmatised, guilty and resentful", say the Australians. "Unwarranted speculation about psychogenesis, based on the outcome of cognitive behavioural therapy in CFS, should also be avoided." Prins et al. take no account of such concerns, expressed by experienced and respected international peers.
The Canadians worry that the psychiatric model of CFS is "ideological", and "tied to deadlines or other hidden agenda".4 Like Prins et al., authors of the Canadian guidelines are aware of a "hidden agenda". But they seem to suggest that it is harboured by clinicians, not by patients.
Spence and Abbot 5 exposed the lack of a credible evidence base to support the claims made for CBT and GET. Prins et al ignore, extensive clinical and scientific evidence that demonstrates the clear organic basis of ME-CFS 6 7, changes in gene expression 8, and magnetic resonance studies of the brain9 10, all indicating that ME-CFS is a multiple symptom, multi-system, multi-organ illness.
1. Prins JB, van der Meer JW, Bleijenberg G. Invited Review: Chronic fatigue syndrome. Lancet 2006;367(9507):346-5.
2. Jason L.A, Taylor R.R, Song S, Kennedy C, Johnston D, Dangers in Collapsing Disparate Syndromes, Lancet, Correspondence, 354, No. 9195, 11 December 1999.
3. Chronic Fatigue Syndrome, Clinical practice guidelines - 2002, Royal Australasian College of Physicians Working Group, Medical Journal of Australia 6 May 2002;176 (8 Suppl): S17-S55.
4. Carruthers BM, Jain AK, De Meirleir KL, et al. Myalgic encephalomyelitis/ chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. J Chronic Fatigue Syndr 2003;11:7-115.
5. Spence VA, Abbot NC Cognitive behaviour therapy for chronic fatigue syndrome. Lancet 2001 Jul 21;358(9277):239-40.
6. Hyde B, Goldstein J, Levine P. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Nightingale Research Foundation, Ottawa, 1992.
7. Richardson J. Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and other Organ Pathologies. Haworth Medical Press, Binghampton NY, 2001.
8. Kaushik N, Fear D, Richards SCM et al. J Clin Pathol 2005;58:826-832.
9. Puri BK; Counsell SJ; Zaman R; Main J; Collins AG; Hajnal JV; Davey NJ. Relative increase in choline in the occipital cortex in chronic fatigue syndrome. Acta Psychiatr Scand. 2002;106:224-226.
10. Lange G, et al. Brain MRI abnormalities exist in a subset of patients with chronic fatigue syndrome. J Neurol Sci 1999;171:3-7.
[Declaration - Malcolm Hooper is Professor Emeritus at the University of Sunderland and a lecturer, speaker, and advocate for people with Gulf War Syndrome, ME-CFS, pesticide poisoning, and multiple chemical sensitivity.]
School of Health Sciences, University of Sunderland, Sunderland SR2 3SD