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Three letters published in BMJ

Monday 25 July 2011

From Tom Kindlon (via Co-Cure):

 

BMJ3 letters published in BMJ (i.e. are going to be in print edition) (plus one remaining BMJ e-letter not circulated)

By Tom Kindlon Tue, 19 Jul 2011 20:01:17

[It is a bit odd that the first letter was only posted on the website on July 18 and now is published on July 19 given how the BMJ operates: http://resources.bmj.com/bmj/authors/types-of-article "Letters (Rapid responses): Please note that all letters to the editor must be submitted as Rapid responses to articles published on bmj.com. Use Search on http://bmj.com to find the article you are responding to and then click on the link at the top of the page marked "Respond to this article". This is the only way to submit a letter to BMJ: all letters that appear in the print BMJ and on bmj.com have arrived initially as Rapid responses. Only e-letters are considered for publication." Also, I believe they have said they look for letters to come in within 2 weeks of publication. Tom]

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BMJ 2011; 343:d4589 doi: 10.1136/bmj.d4589 (Published 19 July 2011) Cite this as: BMJ 2011; 343:d4589 Letter Ending stalemate over CFS/ME

Will adopting the Canadian criteria improve diagnosis of CFS?

Peter D White, professor of psychological medicine1, Alastair Miller, consultant physician2, Esther Crawley, consultant senior lecturer, University of Bristol, and clinical lead3

+ Author Affiliations 1Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine, Queen Mary University of London, London EC1A 7BE, UK 2Tropical and Infectious Disease Department, Royal Liverpool University Hospital, Liverpool L7 8XP, UK 3Bath Specialist Paediatric CFS/ME service, Royal National Hospital for Rheumatic Diseases, Bath BA1 1RL, UK

Godlee suggests that adoption of the Canadian criteria to diagnose chronic fatigue syndrome (CFS) is a reasonable request.1 It may be reasonable but is probably not practicable. These criteria require the assessment of some 65 discrete symptoms and 14 comorbid conditions before even considering exclusionary conditions2—a significant burden on both patients and doctors. More worrying is that “symptoms” such as ataxia, “palpitations with cardiac arrhythmias,” and “loss of thermostatic stability” count towards the diagnosis rather than suggesting alternative diagnoses.

All criteria used to diagnose CFS/ME require disabling fatigue lasting between four and six months, a varying number of symptoms, and the exclusion of other illnesses that cause fatigue. There is no evidence that different diagnostic criteria diagnose a different condition.3 There has been a recent attempt to improve the “vaguely worded” Canadian criteria,4 incorporating elements of more orthodox research criteria.5 But these revised criteria still require assessment of too many symptoms of dubious validity. The one advantage of the Canadian criteria over alternative diagnostic criteria is that they require what many would regard as the characteristic feature of CFS, post-exertional malaise.6 This is something that may need incorporating in future definitions to help differentiate CFS from more general fatigue.

Notes

Cite this as: BMJ 2011;343:d4589 Footnotes

Competing interests: PDW has done consultancy work for the Departments of Health and Work and Pensions and a re-insurance company.

References ? Godlee F. Ending the stalemate over CFS/ME [editor’s choice]. BMJ2011;342:d3956. (22 June.) [FREE Full text] ? Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, et al. Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols. A consensus document. Journal of Chronic Fatigue Syndrome2003;11:7-115. ? National Institute for Health and Clinical Excellence. Clinical guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. NICE, 2007. http://guidance.nice.org.uk/CG53. ? Jason LA, Evans M, Porter N, Brown M, Brown A, Hunnell J, et al. The development of a revised Canadian myalgic encephalomyelitis chronic fatigue syndrome case definition. Am J Biochem Biotech2010;6:120-35. [CrossRef] ? Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, et al; International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res2003;3(1):25. [CrossRef] [Medline] ? Cornes O. Commentary: Living with CFS/ME. BMJ 2011;342:d3836. (22 June.) [FREE Full text]

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BMJ 2011; 343:d4544 doi: 10.1136/bmj.d4544 (Published 19 July 2011) Cite this as: BMJ 2011; 343:d4544 Letter Ending stalemate over CFS/ME

Let psychiatric and biomedical lobbies be heard equally in CFS/ME research Caroline Davis, patient and former director1

+ Author Affiliations 1London, UK

Raised voices don’t help,1 but they are understandable when the Medical Research Council has funded no biomedical research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for 30 years. For most patients, ME means several decades of just surviving, achieving nothing, and being ridiculed by the media and often by friends and family simply for being ill.

You talk about aggressive patient campaigners. Here is the other side of the coin: a small group of overly powerful psychiatrists who hold key positions in medicine, research, media gatekeeping, and government policy are suppressing the argument that ME may be biomedical rather than psychiatric. This is what makes patients angry and why patients and researchers cannot work together.

The solution is simple—let the psychiatric and biomedical lobbies be heard equally (which means replacing some names in positions of power), fund research for both equally, and see how things change.

Those in policy, medicine, research, and publishing need to be more open minded about ME and to use their influence to ensure: accurate case criteria (Canadian Consensus Criteria (CCC) work well for most patients); better media coverage of research into ME, so that the public, government, and medical practitioners can take a balanced view of the condition and its causes; and that patients are not penalised for refusing “treatment” that we know is harmful.

Godlee’s comment about the PACE study is typical of the medical establishment’s assumptions. No CCC defined patients took part in PACE and nobody got better (most who improved would have qualified to start the programme again). If cognitive therapy and graded exercise therapy had worked, participants would be encouraging others to use them. Why do you think this isn’t happening? Notes

Cite this as: BMJ 2011;343:d4544 Footnotes

Competing interests: None declared. References ? Godlee F. Ending the stalemate over CFS/ME [editor’s choice]. BMJ2011;342:d3956. (22 June.) [FREE Full text]

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BMJ 2011; 343:d4550 doi: 10.1136/bmj.d4550 (Published 19 July 2011) Cite this as: BMJ 2011; 343:d4550 Letter Ending stalemate over CFS/ME

Acknowledge good intentions of researchers in CFS/ME Alastair M Santhouse, consultant in psychological medicine1

+ Author Affiliations 1South London and Maudsley NHS Foundation Trust, London SE5, UK

There is an obvious paradox in wanting more research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) but rejecting research that is not liked, with claims that it is unscientific.1 “Science” is the application of the scientific method, and the sound rebuttals by the Medical Research Council and the Lancet to allegations that the PACE trial was in some way improper should be proof enough. That the PACE trial found cognitive behavioural therapy and graded exercise therapy to be safe while moderately improving outcomes in CFS/ME would cause great satisfaction to doctors and patients in any other branch of medicine. Entry criteria to the trial were broad,2 3 4 but subgroup analysis on more narrowly defined CFS/ME gave the same results.

Although such treatments do not work for everyone, undoubtedly they benefit some. It is precisely for these reasons that we have trials in which treatments and outcomes can be standardised. Of course we need research into other areas of this condition, but let us also acknowledge the good intentions of researchers and doctors involved in all aspects of this field. Notes

Cite this as: BMJ 2011;343:d4550 Footnotes

Competing interests: AMS is a specialist medical care doctor, PACE trial, and member of the guideline development group of the National Institute for Health and Clinical Excellence (NICE) CFS/ME guidelines. References ? Hawkes N. Dangers of research into chronic fatigue syndrome. BMJ2011;342:d3780. (22 June.) [FREE Full text] ? Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, et al. A report—chronic fatigue syndrome: guidelines for research. J R Soc Med1991;84:118-21. [Medline] [Web of Science] ? Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, et al; International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res2003;3:25. [CrossRef] [Medline] ? National Task Force. London criteria. Report on chronic fatigue syndrome (CFS), post viral fatigue syndrome (PVFS) and myalgic encephalomyelitis (ME). 1994.

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The following isn't a published letter but as I was circulating the previous e-letters, I thought I should send it out
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Re: Can we learn from researching chronic fatigue in chronic illness - the case of HIV?

Jayne Warwick, Patient Advocate Australia

Re: Dangers of research into chronic fatigue syndrome. Hawkes 342:doi:10.1136/bmj.d3780

Would addition of another group - one that experiences paradoxical arousal - be worthwhile (in future studies)?

Regina Casper's team propose, "that behavioral activation and arousal represent core symptoms unique and specific to AN [Anorexia Nervosa]." (1)

When reading Casper's paper I was stuck by the similarity of the effects of semi-starvation to symptoms experienced by people with CFS/ME.

Quote from Casper's paper:

Aspen, a wilderness traveler attempting to survive on an energy deficient diet, described the behavioral effects of semi-starvation: "we moved slowly, as if in a dream. It took a long time to get anything done. We were indecisive and spiritless--no longer able to think clearly, to act, to choose." In striking contrast, emaciated AN patients display normal, occasionally high energy and activity levels and tenacious motivation."

(1) Casper RC. The 'drive for activity' and "restlessness" in anorexia nervosa: Potential pathways. J Affect Disord 2006; 92(1):99-107

Competing interests: None declared

 

The above originally appeared here.

 


 

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