On Wednesday 7th December the Forward-ME group will meet with Professor Stephen Holgate of the MRC/CMRC to discuss the MEGA proposal.
In the
Forward-ME minutes for 25th October it was already stated that Professor Holgate would be invited to this meeting.
The Forward-ME minutes from October are quite interesting if one also reflects on comments from some CMRC members since that meeting.
But it is even more of a surprise that one trustee of another charity, also a member of the CMRC board and a member of Forward-ME, should have contacted Professor Holgate on 3rd November, after the October Forward-ME meeting, to suggest that Professor Holgate contact Invest in ME’s advisory board regarding the opposing petition –
OMEGA.
This Professor Holgate did – and all of this without the knowledge Invest in ME [
click here].
This sorry state of affairs seemed to us to be an ugly attempt by the CMRC to influence the charity’s position!
Almost one month on from sending a letter to Professor Holgate to seek clarification about the CMRC (MRC) position on this matter Invest in ME Research has still received no acknowledgment from Professor Holgate – let alone an answer to the questions we asked.
We notified the CEO of the Medical Research Council, Sir John Savill, of the lack of a reply to our questions –
Thank you for confirming receipt of our letter.
You may be interested to know that Professor Stephen Holgate has not even had the courtesy to respond to our recent letter – despite seemingly responding to all others who have contacted him, from what we can discern from the internet.
As Professor Holgate had signed his email to our advisor as “MRC Clinical Professor of Immunopharmacology” then we also assume that he was representing the MRC, as well as the CMRC.
We raised legitimate questions regarding the way that the CMRC, and by association the MRC, conduct their business relating to ME – as well as the distinct conflicts of interest that would seem to exist.
As you will no doubt be aware everyone in the charity are entirely appalled and disgusted with the actions of Professor Holgate – as well as the particular CMRC board member who suggested that our advisors are contacted in this way.
We further stated -
Should we not expect more from the MRC?
It is obvious that we have no faith at all in the CMRC board.
As MP Kelvin Hopkins has asked in a parliamentary question [
http://tinyurl.com/h3rnngq]
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.
From our
January 2009 newsletter - in the section MRC and Biomedical Research on Page 3.
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) -
January 2009 newsletter
From our
December 2009 newsletter -
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.
And
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.
Margaret Williams writes in her article on the Pace trials (
Can the MRC PACE Trial Be Justified?)-
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 our
2012 Christmas newsletter we wrote –
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.
