Welcome to a
Special Invest in ME Newsletter
for November 2006.
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 -
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.
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.
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.
The MRC should do more to encourage
applications for funding into biomedical models of ME.
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.
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
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.
No representative who appeared at the Oral Hearings proposed CFS/ME
was entirely psychosocial. So why has this model taken such a
role in the UK?
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
It is recommended that ME be recognised as one which requires an
approach as important as heart disease or cancer. There is no
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