Invest in ME Newsletter Special November 2006

Newsletter
No.06/11-2  November 2006
 

Gibson Inquiry

Welcome to a Special Invest in ME Newsletter for November 2006.

"This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve. It is an illness whose time has certainly come. "

Thus concludes the report from Dr Gibson’s Group on Scientific Research in to Myalgic Encephalomyelitis (ME) – otherwise known as the Gibson Inquiry. Unfortunately, that time is too late for some of the victims who have lost their lives to this devastating illness. 

Invest In ME welcomes the broad message of this parliamentary report and thanks Dr Gibson and his group for all their efforts. The Inquiry calls for this illness to be given due recognition, alongside heart disease and cancer. It also calls for ring-fenced money for bio-medical research as happened with AIDS. ME in fact affects five times as many people as does AIDS but can have a much more devastating impact on quality of life. The Inquiry recommends that research must be made a priority and suggests that 11 million should be made available for research to redress the balance in an illness where too much emphasis has been put on psychological “coping strategies”. The Inquiry accuses the MRC of merely “paying lip-service” to the call for bio-medical research. 

Invest In ME feel it is a relief that at last a government body is acknowledging that ME is a severe, incapacitating, illness and that those who suffer from it, as well as their carers and families, may have their lives completely ruined. We have been asking for a long time for very simple, common-sense things such as the adoption of comprehensive diagnostic criteria and epidemiological studies. We are delighted that this report agrees that this is vitally important.

This report does not stint in its criticism of the Medical Research Council and NICE.  Indeed, it warns that NICE should rethink very carefully one of its recommended treatments, Graded Exercise Therapy (GET) because there is evidence that in 80% of M./E. sufferers there is diastolic cardiomyopathy. Invest in ME has warned NICE only last week that by recommending GET they would put patients lives at risk, and risk Judicial Review. We can only hope that NICE will take notice.

Invest In ME also welcomed the call for an independent scientific committee to be established to oversee all aspects of research, as well as an inquiry into the vested interests of insurance companies whose advisors also act as advisors to the DWP. Dr Gibson’s Group recommends an investigation of these vested interests by a standards committee because too often, it states, patients have to live with the double burden of fighting for both their health and their benefits.

Invest in ME now believe that we must  move forward and ensure that people are correctly diagnosed with this illness and that doctors and scientists treat patients knowing and accepting that they have a genuine and serious illness.

Invest in ME now ask that the government and MRC take this opportunity and work with the ME community and biomedical researchers to ensure that this illness can be understood, that proper biomedical research is funded and that archaic and unjust perceptions by government departments, sections of the health service and those responsible for deciding funding strategy are once and for all discarded.

This is an opportunity to benefit patients and find a cure for this illness.

Invest in ME ask the government to ensure that this opportunity is not lost and that yet another generation of UK citizens is not abandoned.

Some highlights from the Inquiry report -

o The Group calls for a further Inquiry into the Scientific Evidence for CFS/ME by appropriately qualified professionals. This Inquiry should be commissioned by government undertaken by an independent panel of scientific and medical experts, including virologists, immunologists, biochemists etc who can objectively assess the relevance and importance of the international scientific data.
o

The NICE draft guideline makes little reference to the possibility of viral investigation in ME patients.

The Group recommends, firstly, that these studies and others like them must be examined by an independent scientific advisory committee such as the one proposed above. Secondly, many of the studies we received were conducted on a very limited scale and their findings need to be confirmed or refuted by large scale investigation. Until this happens, the field will remain confused.

o

Provision of resources for biomedical research is urgently needed. The committee would like to see a similar arrangement to the AIDS programme funded previously by the MRC.

o

The MRC should do more to encourage applications for funding into biomedical models of ME.

o

The Groups feels that patients with CFS/ ME, which is often an extremely long term condition, should be entitled to the higher rate DLA. The sooner there is a biomedical model of assessment for this illness the better.

o

There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness 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. It may even be that assessment by a medical ‘expert’ in a field of high controversy requires a different methodology of benefit assessment

o

ME and CFS have been defined as neurological illnesses by the World Health Organisation. Various clinical and epidemiological research studies in countries around the world have suggested CFS/ME to have a biomedical cause. The UK has not been a major player in the global progress of biomedical research into CFS/ME. Although some interesting biomedical research has been done in the UK precedence has been given to psychological research and definitions. The Group believes the UK should take this opportunity to lead the way in encouraging biomedical research into potential causes of CFS/ME.

o

No representative who appeared at the Oral Hearings proposed CFS/ME was entirely psychosocial. So why has this model taken such a prominent role in the UK?

o

The MRC should call for research into this field recognising the need for a wide ranging profile of research. The committee would like to see a similar arrangement to the AIDS programme funded previously by the MRC

o

It is recommended that ME be recognised as one which requires an approach as important as heart disease or cancer. There is no compelling evidence it is a purely psychosocial

The challenge now will be to harness the momentum generated by this Inquiry to  proceed with proper funding for biomedical research and a will to find a cure for this illness.

More details can be found here.

 

Contacts: 

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