To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council's policies towards ME research over the last decade; and if he will seek those people's removal from positions of influence over future of ME research.
As with all the questions posed by Kelvin Hopkins the replies said more about the establishment postition on ME than intended by the scant responses - which were full of obfuscation, apathy and unwillingness to act.
The problems with the policies toward ME research for the last generation, and everything they have led to, is something the charity has been commenting on for some time.
Notably this is maybe epitomised by the events described above involving discussions and emails by CMRC members to contact the charity's advisors without our knowledge.
But looking back over some of our previous newsletters we see that little has changed since Invest in ME became a charity.
In our December 2008 newsletter we wrote of the Medical Research Council when it announced its "new" " "MultiDisciplinary" Panel
If the objective of forming this panel is to encourage new researchers into the field then what has caused this change of policy from the MRC when they have for years rejected high-quality biomedical research proposals and only funded research based on the behavioural view of the illness?
It is difficult to see how this panel could work for the benefit of people with ME and their families when the members of the panel maintain such opposing views of the illness. Maybe members of those charities whom the MRC have chosen to invite to this panel could ask their elected representatives to ensure that correct diagnostic criteria will be used for any future research projects funded by the MRC (i.e. the Canadian Guidelines). Otherwise statements from this panel stating that they are interested in encouraging more research into ME will be based on a charade and will have no real value.
Almost 8 years on and these words from that newsletter seem very prescient – especially the predictions (and when reading this please reflect that this was eight years ago - eight years of people's lives) -
Whatever some may think of the MRC's current, protracted policy toward ME (their current effort, which consists of a panel formed by Professor Stephen Holgate, has taken two years to set up its first workshop) the fact remains that the MRC continues to delay what is urgently required - funding of biomedical research into ME.
Perhaps one of the last vestiges from the old establishment mismanagement of funding for ME research will be published next year by psychiatrists who were given funding from the MRC for research based on flawed diagnostic criteria.
At the MRC Workshop on CFS/ME held on 19th / 20th November 2009 at Heythrop Park, Oxfordshire, in his introduction Professor Stephen Holgate effectively said that the reason for the meeting was the need to move forward, to get away from old models and to use proper science, and that there was no reason not to change things, a view he had also expressed at the RSM meeting "Medicine and me" on 11th July 2009.
The outcome of PACE is predictable (the report will undoubtedly state that CBT is beneficial for people with ME). The fact that proper science, based on biomedical research, has already made the PACE trials redundant and irrelevant is testament to the wasted years of MRC mismanagement.
Unfortunately Professor Holgate has found a strange way to get away from "old models" by including known proponents of the psychosocial view of ME to be present on his panel of experts.
In the UK ME patients and their families are now witnessing the real fallout from the discredited PACE Trial - a meaningless and flawed trial, using £5 million of scarce funding.
The conduct of the trial has been wholly unscientific (i.e. when empirical evidence from their own studies show their ideas to be wrong, the evidence is either ignored (e.g. as in the FINE Trial), or misrepresented (PACE Trial), and the system which is meant to protect against this - academic peer review - fails completely to protect against the dissemination of papers which contain shocking errors.
To try to shore up the establishment charade and present PACE as valid science the gatekeepers of misinformation are rolling out one after another simplistic and biased articles in the media condemning ME patients as militants.
A raft of puppet freelance journalists have been orchestrated to write a series of articles denigrating ME patients and to support these failed fear avoidance and deconditioning models of ME which have been thoroughly disproven.
The behaviour of the health editors in the media, as similarly indicated by the Leveson Inquiry, has generally been appalling.
It is quite telling to see how easy it is for known proponents of ME as a somatoform illness to be given media space yet how difficult it is for patients or ME charities who wish to tell the real story to be given the same amount of publicity.
In our view the CMRC is riddled with so many conflicts of interests and the merging of different functions and responsibilities that should be separated that we cannot be bothered to comment further.
"It looks to me increasingly that the CMRC and MEGA are both essentially grant commissioning bodies. Yet patients have been given to believe that members of the MEGA team are likely to be the grant applicants when the project gets written. That is suggested by comments that detailed protocols have not yet been written. Protocols are written by applicants, not commissioning bodies. My understanding is that a grant commissioning body is not entitled to award itself grants but that any work commissioned goes out for competitive tender. I think the CMRC needs to make its position clear on this. "
When Professor Holgate meets those participating in the Forward-ME group and discusses research then it would be as well for all of those sitting around the table to reflect on this -
All of these years have gone past – and nothing has fundamentally changed regarding MRC/CMRC policies towards research into ME it seems.
Meanwhile Invest in ME Research continues to offer a better alternative for the future - something that can drastically change things
After the suggestion by a trustee of another charity was made to Professor Holgate to contact our advisors then we had wondered if the other trustees of that charity were aware this action, and whether they had sight of the originating email sent to Professor Holgate which we have seen, or if they condone that action and agree with the contents of that email? That is a matter for them, of course.
But we did expect an answer from Professor Holgate to our questions asked in Friendly Fire? The Fog of ME Politics
We have only seen this one email trail. Are there others that concern Invest in ME Research within the CMRC or MEGA proposal group?
Is this part of a larger campaign, or campaigns, against dissenting voices who oppose MEGA by the CMRC, or by those involved in MEGA, or by another group or organisation of which you are a member?
We note that, in your email to our advisory board member, you purposely included and cc:d several others of the CMRC – including some MRC representatives. Are all members of the CMRC aware of this and in agreement with your action in contacting our advisory board without the knowledge of Invest in ME Research?
Is it the norm for the CMRC to contact the advisors of other charities who oppose CMRC projects, without the knowledge of the charity chair and trustees – and is this a policy of the CMRC which is meant to influence the policies of that charity?
If this is so then has that policy been authorised with the knowledge and agreement of the full CMRC board and of CMRC members? And if so has it been documented for the public to see?
Have you made contact to all of our advisory board or to others in the ME community or research community, or any others, in any attempt to influence the policies of Invest in ME Research?
Have you also contacted the advisory boards, or equivalent supporting bodies, of other charities who oppose MEGA without the knowledge of the charities themselves?
We note that the most recent organisation to have signed the OMEGA petition which opposes the MEGA project is the Irish ME Trust – an organisation not located in the UK. Have you also contacted their advisory board, or equivalent, to attempt in any way to alter their policy?
As we know that the Science Media Centre sits on the board of the CMRC then is it also with the involvement of the Science Media Centre that you have contacted our advisory board?
With your status as an advisor to Action for ME do you not feel that you have a distinct conflict of interest if one also considers your involvement in CMRC and MEGA and MRC - and that you should not be contacting our advisor in this way as it may make you appear to be less than impartial when attempting to influence research into ME?
Will you and the CMRC provide an assurance that you will not endorse or condone any attempt to subvert the policies of Invest in ME Research by influencing our advisory board and that you will contact the chairman of Invest in ME Research directly if you have any issue with the charity’s position on any subject related to ME?
It would be interesting to receive responses to all of these points so that people with ME and their families and carers may judge themselves what is/has been occurring.
Neither did the charity receive any explanation or comment from the ME charity whose spokesperson had requested Holgate contact our advisor.
“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.
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 http://www.investinme.org/Article-015%20FINE%20Trials.htm ) - 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.
The MRC panel will state that it will promote biomedical research and lull the ME community into a false sense of progress
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
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.
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.
A foundation of biomedical research is now established with 5 PhDs participating in biomedical research into ME and preparations being made for a UK clinical trial of rituximab and with major European and international collaboration.
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