Digest of Gibson Report on CFS/ME.
On 26th November an all-party group of parliamentarians launched an explosive report on the lack of British research into CFS/ME. They said:
· Although there is no compelling evidence that CFS/ME is psychological, there is persistent psychiatric bias in the UK.
· The UK is lagging in biological research; important international research is ignored.
· The Medical Research Council is funding only psychological research into CFS/ME.
· The ME patient community is "extremely hostile" to certain psychiatrists.
· Current treatments amount only to symptom management, not cure.
· There should be a government inquiry into ongoing research failure.
· Some senior doctors have a "blatant conflict of interest", and should be investigated.
The group was chaired by Dr. Ian Gibson, past chairman of the Commons Science and Technology Select Committee. Other members included veteran Labour MPs Ann Cryer and Michael Meacher, Dr. Des Turner, chairman of the All Party Parliamentary Group on ME, Lords deputy Speaker the Countess of Mar, and Lord Turnberg former President of the Royal College of Physicians.
£3.5 Billion Annual Cost.
CFS/ME is one of the most contentious illnesses in modern medicine, say the MPs. In Britain it affects more than 200,000 patients. It can be a severely incapacitating illness; many who suffer from it have their lives completely ruined. There is no effective method of diagnosis, treatment or cure. Current NHS provision leaves much to be desired. CFS/ME costs the UK about £3.5b annually in medical services, social benefits and lost incomes.
Some Doctors Stigmatize ME Patients.
The MPs say they "heard a number of extremely disturbing testimonials from patients dismissed by their GPs as ‘attention seeking'." The inability of some in the medical profession to identify genuine patients with CFS/ME "enhances the view that all patients with CFS/ME are neurotic or not genuinely ill".
They were also "concerned to receive written submissions from parents of children with CFS/ME " who were disbelieved by social services and GPs. As a result "their children were put on the at risk register, or even made wards of court and removed from the family home." The MPs said CFS/ME "should not be confused with Munchausen by Proxy".
ME and CFS have been defined as neurological illnesses by the World Health Organisation. "There is no compelling evidence it is purely psychosocial", say the MPs. But in Britain there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME, they found. "The UK has not been a major player in the global progress of biomedical research into CFS/ME".
The effects of this psychiatric bias can be seen in some major British textbooks for doctors. The 2004 edition of Kumar & Clark's "Clinical Medicine" relegated CFS/ME to the chapter on psychiatric medicine. "While CFS/ME remains only in the Psychological section of medical discourse, there can be little chance of progress", the MPs conclude.
Professor Wessely of King's College Hospital is considered by many to be the leading expert on treating CFS/ME. But many patient groups believe Dr. Wessely and his colleagues are responsible for the perception that ME is a psychosocial illness. "It is clear the CFS/ME community is extremely hostile to the psychiatrists involved". "The Group invited Wesseley to speak at an Oral Hearing, however he declined the offer", says the report. "The Group were disappointed not to have the opportunity to discuss this important issue with such a key figure".
No medical witness who appeared at the Oral Hearings proposed that CFS/ME was entirely psychosocial. "So why has this model taken such a prominent role in the UK?" the committee asked.
International Research Ignored.
The committee preferred the Canadian diagnostic protocol to existing British criteria, and reproduced it in full in their report. "The Canadian Clinical Criteria were much more detailed, including many more symptoms of CFS/ME compared with the Oxford Criteria". They also admired new American guidelines issued by the US Centers for Disease Control: "The CDC provides very patient focused criteria".
The MPs wondered why British doctors had not made use of valuable international research: "The Group was very interested in the international evidence submitted and concerned as to why this evidence has not been seriously examined in the UK".
Biomedical research needed.
"The underlying theme in all of our hearings was the paucity of research into causes", said the Group. The origins and causes of CFS/ME will only be found through scientific research. Provision of resources for biomedical research is urgently needed. But there has been no massive investment. Research areas defined by the Chief Medical Officer's 2002 Report on CFS/ME have not been addressed.
The MPs called for a government Inquiry into the Scientific Evidence for ME/CFS, undertaken by independent scientific and medical experts, (including virologists, immunologists, biochemists) to objectively assess the relevance of international scientific data.
They called for a crash programme of research investment, similar to the AIDS project funded previously by the MRC.
Existing treatments consist of psychotherapy and exercise (CBT & GET). These treatments "should be regarded as symptomatic treatments, not as cures", say the MPs. CBT is at best only a partial answer. "It is most effective in those with less severe forms of CFS/ME and appears to be much less effective in those with severe disease".
"GET is an area for particular concern", they continued. "Some of our evidence suggests that GET carries some risk". Some patients claim they are harmed by this treatment, and as a result, there can be "serious antipathy to the doctors offering it", the MPs found.
Treatment guidelines for CFS/ME will be released by the National Institute for Clinical Excellence next April, and will likely recommend CBT and GET. "The Group is concerned that NICE guidelines are recommending these treatments without caveats", says the report. NICE guidelines should accept that, as the causes and pathogenesis of ME/CFS remain poorly researched, treatments are empirical and of only marginal symptomatic help in some cases. "NICE will certainly benefit from listening to international experts", they say.
Depression caused by medical neglect.
The committee noted a "close link with depression in many ME cases." However many cases of depression were made worse by medical neglect. There are "professionals who do not believe" CFS/ME patients, and subject them to "social stigma." Often CFS/ME is not accepted as a legitimate condition; there is "lack of classification". Unlike other illnesses, there is less "possibility of a cure." All of these factors "leave the CFS/ME sufferer more disillusioned than those with other chronically disabling diseases, and thus more prone to depression".
The Medical Research Council confirmed that from Apr. 2003 to Nov. 2006, it has turned down 10 biomedical applications relating to ME/CFS. Over the same period it has funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain. These amounted to £11m. Biomedical applications rejected include those by Professor Jill Belch (herself a Principal Fellow of the MRC) and Dr Vance Spence of Dundee, as well as Dr Jonathan Kerr of St Georges, London.
"The group were concerned by the MRC CFS/ME Research Advisory Group paper", which concentrated "research effort on case management and 'potential interventions' ", and "diverted attention away from the need for more research into causation and diagnosis". "The MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME". "They should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research".
Social Security Benefits.
People with ME/CFS, like others, often experience great difficulty in obtaining state sickness and disability benefits. CFS/ME patients are at a massive disadvantage because of the controversy surrounding the cause of their illness and suggestion that it may be psychosomatic. At present ME/CFS is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. This classification is in the financial interest of both the DWP and the insurance companies.
"The sooner there is a biomedical model of assessment for this illness the better", say the MPs.
"The Group feels that patients with CFS/ ME, which is often an extremely long term condition, should be entitled to the higher rate DLA. Until medical opinion is better informed as to the nature of this illness ME sufferers will have to live with the double burden of fighting for their health and their benefits".
"Blatant" Medical Conflict of Interest.
"There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illnesses, there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body".
The MPs say they will not be "distracted by debates centring on semantics in this difficult and contentious field. The principal actuality remains, that there exists a serious disease, which causes much suffering for patients, and which may be severe and incapacitating."
"Our aim is to build consensus from this point forward', and to "ensure that the voice of the patient is heard".