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I would like to begin with a statement made by Lord Turnberg in the House of Lords, January 2004: 'I can answer directly her (Lady Mar's) question about the response some years ago to the Report by the Royal College of Physicians on CFS/ME (CR 54). We had few, if any, adverse comments'. This was not the case. For a start 12,502 (plus more after) signed The ForT Petition calling for the Report's withdrawal. The Petition was presented to both Houses of Parliament. Lord Turnberg was made aware of this. There were numerous other complaints. Since Lord Turnberg only replied to a few, shunting others on to his press secretary, perhaps he was not fully aware of the public's feeling.
I wrote to Professor Turnberg on 17 February 1997. If you weren't around in 1996-7, this might give you some idea what CR 54 was about - |
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Dear Professor Turnberg . . .
First and foremost, why were 8 of the 15 doctors on this committee psychiatrists? Could I please have a committee list, together with the names of the Presidents who nominated each individual and the Senior Fellows and/or other parties, from whom advice was taken in each case?
CHAPTER 2 - BACKGROUND
The Oxford Criteria (OC) and CDC criteria are inappropriate. The OC includes all categories of 'fatigue' in the case definition of CFS and excludes core symptoms, e.g. neurological. The OC makes no effort to sub-group. Do you not think it too loose and pervasive? If doctors use the OC, ME will be heavily over-diagnosed - the report's estimate of up to1 million sufferers in the UK is a vast overestimation.
CHAPTER 3 - DEFINITIONS
3.1 'The most appropriate term for the syndrome is CFS'. CFS is not accurate or descriptive; the condition is not simply about fatigue, as equated with tiredness. Again there is no attempt to sub-group. Persons who can work will be lumped together with persons who are house-bound/bed-ridden/paralysed. Methods of care, management and treatment for each of the above must surely be different?
The World Health Organisation lists ME as a neurological, brain disorder. (ICD10: 1992, G93.3).
CHAPTER 6 - MUSCLE DYSFUNCTION AND IMMUNOLOGY
Muscle studies are dismissed in 7 lines; the authors believe that any abnormalities so far reported are simply due to inactivity. The most recent report from America does not support this view (Ref: Muscle and Nerve, 1996, 621 - 625). Your comments please?
CHAPTER 7 - PSYCHIATRY AND NEUROPSYCHIATRY
7.3 The authors say that 75% of CFS controls have affective or psychiatric disorder. The above figure includes persons with anxiety and depression. Are these conclusions based on the Diagnostic and Statistical Manual of Mental Disorders (DSM)? If so, depression requires the presence of 4 symptoms from a shortlist that includes fatigue, concentration difficulties and changes in eating and sleeping pattern. Is this enough to confirm patients as psychiatric cases? I do not dispute that some people with ME are anxious or depressed; I feel, however, that these are secondary factors. The authors devalue neuroimaging on the grounds that factors such as anxiety and depression have not been taken into account. Neuroimaging is, of course, a technique used by Dr DC Costa of the Institute of Nuclear Medicine; his studies show hypo-perfusion of the brainstem; the hypo-perfusion in ME controls was significantly lower than depressed patients and normal controls. (Nuclear Medicine Communications, May 1994).
Dr Costa's work is corroborated by Dr Tavio from Italy; Using Positron Emission Tomography, Dr Tavio found significant hypometabolism in the right frontal cortex and in the brain stem of 'CFS patients', as compared to depressives and normal controls. (San Francisco Conference 13-16 October 1996).
Your comments please?
CHAPTER 8 - LOOKS AT INVESTIGATION
8.9 '... detailed laboratory investigation is largely unhelpful in anyone with fatigue lasting more than 6 months.' The authors always urge against over-interpreting the physical abnormalities: virology (5.5); muscle pathology (6.5); neuroimaging (7.13); immunology (8.9). Emphasis, instead, is always on psychological/psychiatric factors (8.16). 'Chronicity is likely to be associated with perpetuating factors unaddressed psychological issues.' Your comments please?
CHAPTER 9 - MANAGEMENT
9.6 The authors allude to 'pre-existing personality': the best way to modulate such attitude problems is Cognitive Behaviour Therapy, 9.8; the latter involves programmes of graded activity/exercise. The references at the back of the report feature Simon Wessely 27 times and Michael Sharpe 14; both advocate CBT. I ask for information re: their controls . . .
CHAPTER 10 - CHILDREN AND CFS
10.2 'CFS in children covers a broad spectrum of problems perhaps even Munchausen's by Proxy Syndrome.' The authors are against home tuition and advocate 'immediate return to school' (10.12). School phobia and avoidance are featured (10.8) and the child's management should include psychiatric skills (10.19). NHS Consultant Paediatricians have already condemned the recommendations, i.e. immediate return to school. Are you concerned about any aspects of this chapter?
CHAPTER 11 - FUTURE RESEARCH
11.1 'We are satisfied that the normal process of supporting sound research are adequate in this respect. The Medical Research Council and the major medical charities have supported and continue to support CFS research.' Well, the MRC did not fund any research into ME 1996-7 and are not doing so 1997-8. In short, the government is giving no money to research/investigation of ME. Does this concern you?
CHAPTER 12 - FACILITIES AND SERVICE PROVISION
12.1 'We see no reason for the creation of specialist units' and 'We do not think that specific guidelines on the management of CFS should be issued for GPs' (12.4). Do you endorse these conclusions? . . . |
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I received a disappointing two-paragraph reply from his press secretary along the line, 'we'll have to agree to disagree'.
Turnberg must have been aware of other criticism, e.g. the Lancet, October 1996 (see ForT Petition); the American CFIDS magazine (Winter 1997) condemned the report on its front page and carried an excellent article by Dr Terry Hedrick, 'The Royal Colleges' Report on CFS: Insidiously Biased and Potentially Harmful'. One could point to many other examples.
It is puzzling why the Government referred enquiries to the Royal College of Physicians since it was the Royal College of Psychiatrists who were asked to set the committee up. A letter was sent to ForT by the Registrar of the Royal College of Physicians 24 July 1998 stating, 'Although the working party met in this College it was not responsible for its establishment, the lead being taken by the Royal College of Psychiatrists'.
The tactics of the Government at this stage appear quite clear. Following the National Task Force Report on CFS/ME 1994 which had called for research into ME, get a panel of psychiatrists and like-minded doctors together and muddy the waters as much as possible: mix ME up with CFS; make a case that the majority have psychiatric disorder; and recommend more psychiatric treatment - GE/CBT... ; shouldn't cost too much and will protect the insurance/pension sectors and not offend the chemical, pharmeceutical industries? Neat. |
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ME Alliance's Response |
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The Alliance's (MEA, AfME, Westcare, Harold Wood) initial response was predictably weak and too accommodating. It did not condemn the Report but feebly said, 'we wholeheartedly AGREE with the unequivocal acknowledgement that this is a genuine and seriously debilitating condition (what does this mean? - the title of the report is CFS; the criteria used Oxford/CDC) which is poorly understood and poorly managed by some doctors'. The response went on to say it 'agrees', 'supports' and 'welcomes' particular sections of the Report.
A fuller response appeared on 31 January 1997. People with ME welcomed some of its' criticisms but found the response, overall, to be equivocal and not strong enough. The response contained more accommodating language such as 'we agree... ', 'we are pleased to see... ', 'whilst we agree... '. ME patients were particularly disappointed with the Alliance's comments on Management e.g. 'We welcome the use of CBT.... CBT... can help to bring about an improvement in quality of life... and might possibly assist complete recovery in a few... CBT can also produce undoubted benefits in patients where psychological problems or abnormal illness behaviour are delaying any potential recovery process'. |
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ForT 1997-2000 |
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ForT was set up in April 1997: the two trustees - myself and Paddy More. ForT was essentially about challenging psychiatric bias and prejudice where the diagnosis, treatment and research of ME is concerned; and campaigning to get proper research into ME: epidemiology; aetiology and pathogenesis. In June we circulated a Petition with the following wording: |
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Dear Lady Jay [Health Minister dealing with ME]
We, the undersigned, ask that that Royal Colleges' Report on CFS (CR 54), 1996, be rejected and withdrawn from circulation forthwith.
In the words of the Lancet Editorial, 'The report was haphazardly set up, biased, and inconclusive, and is of little help to patients or their physicians'. Or as the Department of Health weakly put it: The report will 'provide a further contribution to the ongoing debate'.
Meanwhile, patients suffer, benefits are withdrawn, and at least one person with ME takes his or her life each month. ME persons need help now. |
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ForT wrote to Lady Jay on 17 July, 6 and 29 September, 1997 asking for a time when it could present the Petition to her. We got no response re. the Petition. We faxed her office re. the Petition 4 ovember and 'phoned a number of times. Still no response re. the Petition.
The Petition signed by 12,502 people was eventually presented to Lady Mar outside the House of Lords on 26 November 1997. Lady Mar in turn presented it to Lady Jay in The House of Lords Chamber that afternoon. In the course of the afternoon questions were put to Lady Jay re. ME (the debate was organised by Lady Mar). Lady Jay said that CR 54 endorses what is known as 'the bio-psycho-social approach to diagnosis, which means there is no polarised position between this being a psychological or a medical disease... it is something which needs to be handled in a holistic way.' (Deja vu?) When asked why she hadn't received the Petition herself from ForT, Lady Jay said she wasn't aware of it. |
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ME Charities' Response to ForT Petition |
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The ME Association condemned the Petition in September 1997 and threatened ForT with legal action. The Medical Advisor to AfME wrote to ForT in August saying, 'I feel a petition such as yours might be a rather blunt tool and ... counterproductive ... funding for research needs to have a guide rail and the only guide rails so far published have come from psychiatric units and this is where we have to start ... '.
After the event The ME Association recognised the event (Perspectives 66) and wanted to work with us. AfME thanked ForT for its efforts with a double page spread in InterAction 25. So, AfME then was thanking ME patients for challenging the work of Simon Wessely and Michael Sharpe - CR 54 contains 27 references to Wessely, 14 to Sharpe, many of them about GE/CBT and 'functional somatic syndrome'. Now AfME is working directly with Wessely and Sharp, promoting GE/CBT . . . |
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All Party Parliamentary Group on ME (APPG) |
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One of the MPs who attended the ForT presentation in November 1997 was Tony Wright (Labour MP for Great Yarmouth). Mr Wright gave me his card and said he wanted to help. ForT wrote to Mr Wright on 9 January 1998 asking him to take the lead in setting up a parliamentary group on ME. We received a positive response on 22 January. ForT had a telephone meeting with Mr Wright on 25 March. ForT emphasised the need for proper research into ME: epidemiology; aetiology and pathogenesis. Mr Wright seemed receptive to ForT's requests. BRAME also contacted Mr Wright in the wake of their May 1998 meeting. When ForT contacted Tony Wright's office in the spring, it said don't phone any more - we'll be in touch as soon as anything happens. It didn't get back in touch and only the ME Charities were invited to preliminary meetings, an omen of what was to come. (Please see RiME's Report on APPG). |
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Meeting with Calman, March 1998 |
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The ForT Petition led to a meeting in March 1998 which involved Sir Kenneth Calman (CMO), Lady Mar, Doris Jones, an independent researcher, and Dr Dowsett, ForT's Medical Advisor. Issues covered included: Dr Dowsett presenting 70 pieces of work which supported the organic basis of ME; CR 54 discussing CFS in relation to WHO's ICD-10 definition of neurasthenia and not ME which is categorised as a neurological disease under G93.3; children; and evidence of ME patients' problems since the publication of CR 54; these included compulsory referrals to specialists with a known bias toward psychiatric/psychological causes of ME and problems with medical assessments for pensions, insurance and disability payments. Sir Kenneth announced soon after that a working group would be set up. Unfortunately, when it was it was not what the ME campaigners of 1997/8 wanted: The CMO Group's Terms of Reference were to look into 'The Management of CFS'. And the Group was to be funded by the Linbury Trust, an organisation well known for funding the 'Wessely school of psychiatrists'. Why did the ME Charities sign up to this inappropriate, misguided project?
Many contacted ForT expressing concerns. Common concerns were listed in ForT's Newsletter Nº 6, August 1999, notably : That the composition of the Key Group was biased toward those who promoted/were inclined to a psychiatric aetiology for CFS; That the ME Alliance was over represented to the expense of Independents - ForT wasn't invited; That ME was being further fudged with CFS; That the Group was not looking into the physical causes of ME (how can you discuss treatment if you don't, first, define what an illness is or what causes it); That the plight of severely affected people with ME was being neglected; That the Reference Group had met only once with ME patients and that the latter had not been given an adequate chance to speak. |
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Paul Davis |
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