RiME RESPONSE TO MRC DRAFT DOCUMENT

31 01 03

In November '97, Fighting for the Truth (ForT) presented a 12,502 signature Petition to both Houses of Parliament. The Petition called for the withdrawal of the Royal Colleges Report on 'cfs'(1). this was the Report, written by eight psychiatrists and seven like-minded doctors, which: claimed 75% of people with 'CFS/ME' had psychiatric or affective disorder; recommended GE/CBT blanket-style; said patients may use a particular term (ME) so they are eligible for welfare; said attention should not be focused toward research for an organic cause.

The ForT campaign was also about getting public funding into ME research: epidemiology; investigation of underlying physical causes and disease process. ForT's efforts led to a meeting in March'98 which involved the Countess of Mar, Dr EG Dowsett and Sir Kenneth Caiman (CMO). It was announced soon after a Working Group would be set up.

BRAME held a meeting at the House of Commons, May '98. Speakers included: Dr J Richardson who talked about the history of ME, ME as a multi-organ disease and entero viral infection; Dr EG Dowsett who called for me withdrawal of the Royal Colleges Report on CFS; and Simon Lawrence (25% Group) who called for research into the underlying physical causes of ME.

When the CMO Working Group was set up (July '98) the Terms of Reference were not to do with ME research but the management of CFS. PWME were shocked. They were even more shocked when the MEA and AfME (organisations originally set up to represent PWME) obsequiously signed up without consulting members. PWME felt utterly betrayed. By signing up, the ME Charities let the agenda stray from ME research.

There is widespread belief today that the ME Charities no longer represent PWME but PWME, 'CFS' and/or 'Chronic Fatigue': illness/conditions which require different methods of diagnosis, research and treatment. Severely disabled, housebound, bedridden... PWME feel powerless to arrest this change and, given the much higher prevalence of CFS, believe they could be in a minority. Some PWME are taking their concerns to the Charity Commission. Many PWME are looking to independent ME organisations for leadership, direction and representation.

PWME were dismayed when they read the MRC CFS/ME Research Advisory Group fully endorsed the conclusions of the INDEPENDENT ? CMO's Working Group Report (2)

PWME were disappointed that details re. The RiME Petition (3) and September 2 RiME/MRC meeting were not included in the draft document.

Let's reiterate some of the points made September 2:

• The CMO report was not independent but financed by the Linbury Trust, a private organisation which has spent millions researching 'Chrome Fatigue' a condition where fatigue is the main symptom.

• Six members (46%) of CMO Key Group did not endorse the final Report.

• ME patients were not properly consulted. The agenda of both Sounding Board Events were prescribed: PWME were gagged and not allowed to talk about the differences between ME and CFS or other relevant issues Dissension was never recorded. Information submitted by ForT and 25% Group disregarded.

• 'CFS/ME' is an artificial construct with no diagnostic or research criteria and no scientific precision.

• ME is a clearly defined, clinically identifiable disease. PWME want MRC to take it's remit from clinicians with long term experience of ME patients eg Ramsay, Dowsett .

Para. 67 MRC Draft Report: ...the historical failure to recognise 'CFS/ME' as an illness. RiME contests this. The illness (ME) has been documented in medical literature since 1938 (4) The term Myalgic Encephalomyelitis (ME) was first used by ED Acheson in an article in me Lancet (1956). Three years later Acheson wrote a major review of ME in the American Journal of Medicine in which he detailed it's symptoms (5) In 1969, WHO listed ME as a neurological disorder. In 1978, the Royal Society of Medicine held a symposium on ME; ME was classified as a disease.

One could point to numerous other sources 1956-88, notably A M Ramsay (6) and E G Dowsett (7) ME Research during this era was determined by the meticulous examination and observation of patients. Clinical studies were backed up by molecular biology, brain imaging, sophisticated hormonal and other biochemical studies.

At this stage, with sound evidence of an infective cause, the way in which infection is spread and the pathogenesis of the disease, why did the British medical establishment adopt the term CFS and the fatigue definitions inflicted upon ME/CFIDS patients by USA scientists? (8)

Para. 60: The MRC CFS/ME Research Advisory Group has noted there is some support... for the use of the description of ME from Ramsay.... The MRC... believe that researchers who wish to pursue this approach will need to operationalise the Ramsay criteria and then demonstrate their validity through peer-reviewed publication.

RiME believes the ME patient is the expert. They are the ones who experience the symptoms and suffer 24/7.

ME patients believe there is a common pattern of symptoms to ME: Sheet-anchor symptoms are: a crippling post exertional malaise following minimal physical or mental effort; a range of neurological disorders; and a fluctuating course to the illness which can be not only day to day but hour to hour.

The pattern of symptoms described by ME patients correlates closely to that outlined by A M Ramsay, ME & Post Viral Fatigue States 1988, chapter 3. (Copies sent to MRC August 2002). PWME question the MRC's whole methodology re. ME epidemiology. Instead of waiting for the Ramsay definition to be validated through peer-reviewed publication (they know it won't given the hegemony of social psychiatry 1988 - 2002) they should be getting to the homes of PWME and collecting information.

Studies in recent reports eg the disappointing CMO Report 2002, have disregarded severely affected PWME. They cannot, therefore, be accurate. RiME has requested a second meeting with the MRC to discuss "accessing severely affected PWME."

Para. 82: The MRC CFS/ME Research Advisory Group has not undertaken a detailed review of the current level of scientific knowledge on the aetiology or pathogenesis of CFS/ME, as this was not its function.

PWME were stunned by this statement. The CMO Report asked the MRC to 'develop a strategy for advancing BIOMEDICAL... research on CFS/ME.'

Glaring omissions re. the aetiology of and pathogenesis of ME/ICD - CFS are detailed in M Hooper, ET Marshall, M Williams, Response to the MRC draft document. (http://www.meactionuk.org.uk/Initial_Comments.htm): Infections 11; neurology, 11-12,13; muscle, 12; immunology, 12; neuroendocrinology,13. Omissions in these areas have contributed to: organic/physical factors being down played; psychological factors being exaggerated in ME (see Hooper et al 13,14); the latter conclusions seem to be based on studies of heterogeneous 'CFS' by psychiatrists.

Interventions: MRC draft document, pp. 21-24.

Lamentably, this section focuses once again on GE/CBT. The conclusions seem to be based essentially on one study (Whiting et al 2001) described by one source as having 'a very weak and rudimentary base' (9). Studies showing different results on GE (10) and CBT (11) are omitted.

RiME received 200 letters, 2002, from ME patients and carers. Over half of these condemned GE/CBT stating these forms of treatment were not only unhelpful but, often, harmful. Not one of these letters had anything positive to say about GE/CBT. Not one of these letters expressed a view that psychiatric/ psychological factors might cause or perpetuate ME.

Twenty-four sample letters were included with the RiME Petition. More and more PWME are considering legal action against individual doctors who prescribe GE/CBT for PWME.

Conclusion

The MRC draft document is disappointing. RiME advises the MRC to:

• Study the history of ME.

• Fully screen the scientific literature pertaining to ME/CFIDS.

• Do a national epidemiological study into ME: it must be: based on sound criteria ie Ramsay; include the severely affected.

• Investigate the underlying physical causes of and disease process of ME.

RiME asks that the above be addressed before treatment is looked at. PWME do not feel the MRC should forge ahead using the spurious model "CFS/ME."

RiME asks that details re: the RiME Petition; the Sept.2 meeting; and this reply be included in the next document.

Footnotes:

1) Royal College of Physicians, Psychiatrists and General Practitioners. CFS. Report of Joint Working Group 1996.

2) A Report of CFS/ME Working Group, 2002.

3) RiME Petition asked: That a panel of specialists in the fields of Neurology, Immunology, Endocrinology, and other disciplines but with the exception of Psychiatry be established to commission research into the aetiology' (underlying physical causes) of ME, That a research programme be up and running by the end of 2002: 16,002 signatures presented to MRC Sept. 2, 2002 Final total 16,114.

4) Gilliam AG. Epidemiology Study of an epidemic diagnosed as poliomyelitis occurring among the personnel of Los Angeles County General Hospital during the summer of 1934. Public Health Bulletin, US Treasury Dept No. 240:1938.

5) Acheson ED The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia- AM J Med 1959: 569-595.

6) Ramsay AM. ME and Post Viral Fatigue States, 1988.

7) Dowsett EG. Human Enteroviral Infections. J of Hospital Infections 1988: Volume 11.103-15.

8) See Dowsett EG. Redefinitions of ME/CFS - A 20th Century Phenomenon. ForT Newsletter (6) 1999.

9) MERGE, Unhelpful Counsel, 2002: 14.

10) Paul L, Behan WMH et al. Demonstration of delayed recovery from fatiguing exercise in cfs Europe J Neurol 1999: 6: 63-69. Many other sources can be provided.

11) Freidberg F. A Subgroup Analysis of CBT studies J CFS 1999: 5: 3-4, 149-159. Many other sources can be provided.

PWME (People with ME). CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)

Paul Davis, RiME, 10 Carters Hill Close, Mottingham, SE9 4RS