Entry: Myalgic encephalomyelitis / Chronic Fatigue Syndrome Wednesday, May 04, 2005



http://bmj.bmjjournals.com/cgi/content/full/330/7498/1012
Clinical review
ABC of adolescence
Fatigue and somatic symptoms

Russell Viner Deborah Christie, consultant clinical psychologist
Middlesex Adolescent Unit, University College London Hospitals NHS Foundation Trust, London.

A 'Rapid Response' to the above article in the British Medical Journal

Angela P. Kennedy,
Social Sciences Lecturer
Essex IG8

Failure to consider the issue of differential diagnosis now inexcusable.

As a sadly frequent occurrence, we are faced here with yet another article where the neurological nature of Myalgic Encephalomyelitis/ICD-10 Chronic Fatigue Syndrome (WHO ICD-10) is ignored, in favour of a vaguely written psychiatric paradigm (Kennedy, 2005) in which a serious, sometimes severely disabling disease with specific signs and symptoms of Central Nervous System Dysfunction (Hyde, 1992, 2003) is subsumed under generalisations of “fatigue and other somatic symptoms“, in which (according to the author‘s beliefs but not supported by evidence) ‘de- conditioning’ and ’psycho-social factors’ are claimed as causes.

Simon Wessely may claim (according to Duprey, another RR contributor) that “it is simplistic to cast the medical care of humanity solely in psychosocial or biological paradigms“. But, as he has stated there is no such thing as ME, and has been critiqued for his own and colleague’s overemphasis on the psycho-social, at the expense of the biological, and for his prejudicial descriptions of ME/CFS sufferers (Hooper et al, 2004, Marshall and Williams, 1999, Kennedy, 2005), it would appear to be a case of ’practice what you preach’.

Proponents of the psychiatric paradigm- which, with the greatest of respect, Viner and Christie appear to be (unfortunately there is little evidence to suggest otherwise, and here their ‘bio-psychosocial approach’ lays far too much emphasis on the ‘psychosocial’, to the detriment of the biological, a frequent occurrence)- consistently fail to discuss the problem of the issue of ‘fatigue’ as applies to ME/CFS sufferers, thereby incorrectly presenting ‘fatigue’ as merely ‘tiredness’, despite the evidence that the word ‘fatigue’ is inadequate to describe the physical abnormalities (both signs and symptoms) that occur in ME/CFS. In the same context, they fail to acknowledge that ‘fatigue’ (which might mean tiredness, drowsiness, exhaustion, disturbed level of consciousness, weakness, paralysis, or feelings of malaise, depending on how certain illnesses are experienced or linguistically constructed by individuals) is present in MOST organic illnesses, acute and chronic. Indeed: “Fatigue is both a normal and a pathological feature of everyday life’ (Hyde 1992: 11).

Proponents of the psychiatric paradigm, in their literature, tend to associate ‘fatigue’ with a psychological state, ignoring the physiological reasons that may contribute to the bodily symptoms in ME/CFS, with the effect that these become generalised, and often trivialised, as ‘fatigue’. As Hyde also points out, to place such an emphasis on such a generalised, unspecific, indefinable and immeasurable term as ‘fatigue’, present in both healthy patients and those with both organic and psychological illness, the elimination of hundreds of other diseases are necessitated. This logistical flaw results in only the most limited investigation being encouraged for ME/CFS patients, and NOT in areas that might yield definitive results, such as certain brain scans (as discussed and referenced in Hyde et al, 1992, Marshall et al, 2001, Carruthers et al, 2003).

Particularly relevant to ME/CFS sufferers also is the problem also identified by Hyde (1992: 11-12):

‘…taking the fatigue as the flagship symptoms of a disease not only bestows the disease with a certain Rip Van Winkle humour, but removes the urgency of the fact that most ME/CFS symptoms are in effect CNS symptoms.’

In this context the ramifications of such serious, disabling symptoms as found in ME/CFS are both trivialised and ignored. The problem is compounded by the frequent tendency, by proponents of the psychiatric paradigm themselves and taken up uncritically by others, to use, incorrectly, the term ‘chronic fatigue’ instead of and interchangeably with ‘chronic fatigue syndrome’, even though both terms denote completely different diseases. Chronic Fatigue Syndrome is described in the WHO ICD- 10 as synonymous with (therefore merely another name for) the neurological disease ME, while chronic fatigue is assigned a different category of illness in the ICD-10 (Psychiatric). This incorrect practice of using the terms ‘chronic fatigue’ and ‘chronic fatigues syndrome’ interchangeably and confusingly has a direct relationship to various design flaws in research and the inadequate or dangerous treatment of and perjorative and prejudicial attitudes towards ME/CFS sufferers. Sadly, the Viner et al article is yet another example of this problem.

In this paper Viner and Christie claim that Randomised clinical trials in adults have shown that cognitive behaviour therapy and graded exercise programmes are helpful in most patients. This implies that ME/CFS sufferers are to be treated in such a way.

As the RCT’s themselves are very small in number, and most research in this area has been criticised for the high drop out rate of patient samples, and the patients excluded from such trials (Carruthers et al, 2003, Kennedy and Bryant, 2004). In promoting GET or GAT for ME/CFS, proponents of the psychiatric paradigm continue to ignore the documented harmful effects and therefore potential dangers of ‘Graded Exercise/’Activity’ for ME/CFS sufferers, for example as demonstrated in Van de Sande (2004) Carruthers et al (2003) 25% Group (2004) Shepherd (2001) Action for ME (2001), as well as the documented bio-medical evidence of, for example, specific cardiac problems in ME/CFS sufferers that provide explanations regarding the post-exertional malaise that leads to such risks (for example, Peckerman et al, 2003). In this context, the claims made by Viner and Christie are untenable. They are also potentially dangerous. At the very least this article should have included an acknowledgement of such risks, for doctors’ protection as practitioners as well as patients’ health.

Furthermore, proponents of the psychiatric paradigm of ME/CFS promote the use of Cognitive Behavioural Therapy, NOT as a strategy of coping with one’s illness, but as a ‘cure’ for ME/CFS, (which, it must be remembered, has been both classified and consistently demonstrated as a neurological illness) believing that the multi-system physiological abnormalities (manifesting as symptoms) can be improved to the point of ‘recovery’, merely by challenging the illness beliefs and behaviour of the sufferer (see for example, Sharpe,1996: 248, Stulemeijer et al, 2004). Their rationale for the use of CBT is as a ’cure’ for a neurological illness that they do not even recognise, an illogical position unheard of in regard to medical approaches to any other neurological or other organic illness.

Viner and Christie therefore appear to be promoting CBT/GET as treatments that will improve ME/CFS sufferers, without considering the evidence showing the major problems of such an approach.

In her Rapid Response, Duprey believes kudos is due to Viner and Christie for ‘spotlighting critical differences in the study of “chronic fatigue syndrome” versus the much broader category of “fatigue disorders” thus providing a forum for further clarification and progress‘. Sadly, there is little evidence of this at all in this article. The major problem with this article, and one which causes enormous risks to patients and serious problems to doctors looking for guidance to treat such patients, is the continued failure to delineate adequately the difference between ME/CFS and idiopathic chronic fatigue, ie, the failure to discuss the problem of differential diagnosis. As this issue is well represented in the literature, a peer review process should have identified this problem, and Viner and Christie themselves should not be ignoring the literature on this issue in the first place. Where was their acknowledgement of the Canadian ME/CFS Case Definition and Treatment protocols (Carruthers et al, 2003)? Where was their acknowledgement of the Jason et article showing how the Canadian Guidelines can improve the differential diagnosis of ME/CFS against other forms of ‘chronic fatigue’? At the very least one would have expected a nod to these important references in an overview article.

This continued lack of understanding of the neurological illness ME/CFS is fast becoming inexcusable among those claiming expertise in ‘chronic fatigue syndrome’, and represents a severe abrogation of duty to such patients. Both patients, and doctors seeking guidance on how to care for such patients, deserve better.

REFERENCES

25% ME Group, 'Severely Affected ME (Myalgic Encephalomyelitis) Analysis Report on Questionnaire issued January 2004'‘ March 2004.

Action for ME, “Severely Neglected - M.E. in the UK” (2001).

Carruthers, B. et al (2003) “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, Vol. 11(1), pp 7 - 115.

Hooper, M. et al “The Mental Health Movement: Persecution of Patients?” (2004) Available on the One Click Website: http://www.theoneclickgroup.co.uk/documents/ME- CFS_docs/The%20Mental%20Health%20Movement%20- %20Persecution%20of%20Patients.pdf

Hyde, B. Bastien, S. Jain, A. The Clinical and Scientific Basis of ME/CFS (1992) Nightingale Research Foundation, Canada.

Hyde, B, Jain, A. ‘Clinical Observations of Central Nervous System Dysfunction in Post-Infectious, Acute Onset, ME/CFS’ in Hyde et al, 1992.

Hyde, B. ‘The Complexities of Diagnosis’ in Jason et al (2003) the Handbook of Chronic Fatigue Syndrome, Wiley and Sons, New Jersey.

Jason L.A. Torres-Harding S.R. Jurgens, A. Helgerson, J. "Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome 12(1):37- 52, 2004.

(a) Kennedy A. ‘When Doctors say ‘psychosomatic‘, what do they mean?’ April 2004. Published in Quest (Newsletter of the National ME/FM Action Network) number 66, Fall 2004. Also available on the One Click Group Website (ME/CFS Documents) http://www.theoneclickgroup.co

Kennedy, A. (2004) A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS. Available on the One Click Group Website: http://www.theoneclickgroup.co.uk

Kennedy, A. Bryant, J. ‘A Summary of the Inherent Theoretical, Methodological and Ethical Flaws in the PACE Trial’ 21 October 2004. Available on the One Click Website Home page http://www.theoneclickgroup.co.uk

Marshall, E. Williams, M. ’Denigration by Design? A Review, with References, of the Role of Dr Simon Wessely in the Perception of Myalgic Encephalomyelitis, 1987 - 1996‘ September 1996, and Marshall, E. Williams, M. ‘Denigration by Design: 1999 Update’ 1999. Available at: http://www.btinternet.com/~severeme.group/introduction.htm

Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." The American Journal of the Medical Sciences: 2003:326:(2):55-60).

Arnold Peckerman, Rahul Chemitiganti, Caixia Zhao, Kristina Dahl, Benjamin H. Natelson, Lionel Zuckier, Nasrin Ghesani, Samuel Wang, Karen Quigley and S. Sultan Ahmed. "Left Ventricular Function in Chronic Fatigue Syndrome (CFS): Data From Nuclear Ventriculography Studiesof Response to Exercise and Postural Stress," Findings presented at the American Physiological Society conference, Experimental Biology 2003, April 11-15, 2003, San Diego Convention Center, San Diego, CA

Sharpe, M. C. in Demitrack, M.A. Abbey, S. E (eds.) Chronic Fatigue Syndrome (1996) Guildford Press, New York. Shepherd C. Pacing and exercise in chronic fatigue syndrome. Physiother 2001 Aug;87(8):395-396.

Stulemeijer, M. de Jong, L.W.A.M. Fiselier, T.J.W. Hoogveld, SW.B. Bleijenberg, G. 'Cognitive Behaviour Therapy for Adolescents with Chronic Fatigue syndrome: A Randomised Controlled Trial‘ BMJ.com (online) 7th December 2004.

Van De Sande, M. ‘ME/CFS Post-Exertional Malaise / Fatigue and Exercise’ Quest (Newsletter of the National ME/FM Action Network) #60, June/July, 2003. Also available on: http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical

Wessely , S. "Microbes, Mental Illness, the Media and ME: the Construction of Disease" Eliot Slater Memorial Lecture, 12 May 1994. Available with comment by Margaret Williams: http://www.meactionuk.org.uk/wessely_speech_120594.htm

Angela Kennedy The One Click Group www.theoneclickgroup.co.uk

Competing interests: Carer of young woman with ME/CFS; Social Sciences lecturer and researcher; Director of the One Click Group, a political pressure group advocacting for people with ME/CFS.

BCDC 3 May 2005

ME International

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