The CMO Report was published on January 11 2002.  The report started with the words that, 'Chronic Fatigue Syndrome is a genuine illness ... '  Those who didn't get carried away with media hype and the spin of the national ME charities saw the CMO process for what it was: a smoke screen.  The govt skilfully got ME further entangled with CFS and concluded that the best way to treat 'CFS/ME' was through GE/CBT/Pacing ... or the 'biopsychosocial' approach.  The issue of research was dealt with in 639 words; the buck being passed to the MRC ...

In January 2002 I started the RiME Petition. The Petition addressed to Professor Radda (Chief Executive of the MRC) asked:

The RiME Petition attracted 16,114 signatures and was presented at the MRC on September 2 2002 ...

The presentation was followed by a meeting, detailed below.

It was evident following the meeting that there were unanswered questions.  RiME evolved into an organisation determined to pursue issues associated with the Sept. 2 meeting.

RiME sends out regular newsletters and news updates.

RiME is about campaigning; and specifically the need for research into ME: epidemiology; aetiology; pathogenesis.  The bottom line is that, today, the government isn't funding any of these areas.  It is 7 years since the Chief Medical Officer's Group on Chronic Fatigue Syndrome(CFS)/ME was formed; 3 months since it reported; but nothing has essentially changed as far as people with ME are concerned.

RiME challenges those individuals, groups, organisations who believe it's sufficient to provide people with ME with 'CFS services' and 'illness management'; entities which are both ineffective and inappropriate to the vast majority with ME and do not get to the heart of the problem.

RiME / MRC  MEETING  -  2 SEPTEMBER 2002

Summary of main questions and points covered

Mrs Lee accepted the 16,002-signature petition in the absence of Professor Radda.

Mrs Mitchell acknowledged receipt of the following materials -

She said these would be given to members of the CFS/ME Research Advisory Group.

The meeting commenced at 11.30 a.m. and ended at 12.45 p.m.

RiME  RESPONSE  TO  MRC  DRAFT  DOCUMENT

31 January 2003

In November 1997, 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 1998 which involved the Countess of Mar, Dr EG Dowsett and Sir Kenneth Calman (CMO).  It was announced soon after a Working Group would be set up.

BRAME held a meeting at the House of Commons, May 1998.  Speakers included: Dr J Richardson who talked about the history of ME, ME as a multi-organ disease and enteroviral infection; Dr EG Dowsett who called for the 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 1998) 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 -

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 the 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 -

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

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