MRC and Biomedical Research
In recent months we have attempted to urge caution on the news of the UK Medical Research Council's plans for a "multi-disciplinary" panel to be set up for ME.
We are concerned that this panel, under Professor Stephen Holgate, is meant to marry the psychosocial view of those who perpetuate the myth of ME being a behavioural disorder with biomedical research. Have the MRC attempted to sweeten the perception of this panel's objectives by including two charities in the panel - in this way supposedly giving it authenticity in the eyes of the ME community?
How would this work if the two quite distinct sets of participants are studying different people and using completely different ME guidelines? What could this achieve but a total fudge and a complete blending of ME with the other nebulous chronic fatigue states so beloved of the psychiatric lobby.
One will likely hear much comment from this panel that the MRC panel is discussing biomedical research into ME.
We believe this scenario now represents a worrying and less than ideal future for ME.
We believe that money will be provided for ME by the MRC - at long last.
However, we also believe that the reason that the MRC panel is made up of many notable psychosocial proponents augurs badly for people with ME and their families.
The MRC have supported and funded the psychosocial view of ME for years and we don't believe their true objectives will change quite so quickly.
The PACE and FINE trials - the two ugly sisters of MRC policy on ME (see here) - are unscientific and essentially worthless trials funded by the MRC at the expense of true biomedical research. They will soon draw to a close and their results are almost certain to appear that CBT and GET are beneficial for people with ME. These studies are a not representative of ME but their results will be used to "justify" MRC intentions to perform more psychosocial research under the guise of biomedical research.
Professor Holgate's stated intention of tying both biomedical and psychosocial factions together will be a liability for future research and his publicised view that the problems with ME are the fault of patient groups' is simplistic and incorrect.
So picture this scenario -
The MRC panel will state that it will promote biomedical research and lull the ME community into a false sense of progress
The PACE and FINE trials will produce reports stating that CBT/GET are useful for ME patients
The MRC will announce that it is investing heavily into research in ME
The psychiatrists who have for so long monopolised the funds will control or heavily influence pseudo-biomedical research which will be aimed at proving that psychiatric paradigms being used for treatment of ME actually show biological evidence of their effectiveness
The psychiatrists will still control what the MRC fund and how they fund it
We are concerned that the MRC may masquerade their true psychosocial bias by merging biomedical research with input from psychiatrists and will force through findings that CBT and GET really make a difference. Such trials will be able to prove almost anything.
And so people with ME and their families will be consigned to another two or three years of false hopes and, eventually, wasted opportunities.
Another major concern may be that organisations (and biomedical research charities) which do fund and/or perform biomedical research will start to chase this new MRC money at any cost, under the illusion that the "MRC-funded" label will give authenticity to their research - even though it may well be constrained by manipulation from psychiatrists and destined to validate the views of psychiatrists.
Professor Holgate is now in a position where he can be open and honest about the MRC intentions or he can perform a monumental subterfuge with the future of pwme being the casualties.
Professor Holgate has once again been invited to the IiME International ME/CFS Conference. We hope this year he will accept - there is a lot he needs to think about.