Two MPs tabled separate questions about ME research and received almost identical replies from the Minister concerned on Tuesday, 18 January 2010.
Kerry McCarthy, Labour MP for Bristol East, asked if the Secretary of State for Health would commission research into the biomedical causes of myalgic encephalomyelitis.
Chris White, Conservative ME for Warwick and Leamington, asked the Secretary of State for Business, Innovation and Skills what steps his Department is taking to support research on myalgic encephalomyelitis, and if would make a statement.
Apart from telling Ms MCarthy that he had been asked to reply by the Health Secretary, Minister for State for Universities and Science David Willetts told both MPs:
The Medical Research Council is an independent body which receives its grant-in-aid from the Department for Business, Innovation and Skills. The MRC is one of the main agencies through which the Government supports medical and clinical research. In keeping with the Haldane principle, prioritisation of an individual Research Council's spending within its allocation is not a decision for Ministers.
The MRC supports research into all aspects of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) , and welcomes high-quality research applications in this area. The MRC does not normally commission research but supports high-quality investigator led proposals submitted in open competition, the selection of projects for funding is determined through peer review.
An Expert Group on CFS/ME established by the MRC has worked with experts in the field of CFS/ME and research leaders in aligned areas to identify and prioritise research topics where the MRC might target efforts to encourage and support high-quality proposals. The MRC is now preparing to take forward these recommendations.
Further information on research supported by the MRC and about the work of the group, including the recommendations for research topics and priorities can be found at:
http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm
Who does have authority over the MRC? How are they regulated? Why has a complaint on the PACE trial still not been investigated, when the MRC have the responsibility to respond in 20 days? The Government may not wish to interfere in spending decisions, but I’m sure they could choose to if the MRC is acting illegally. Should it not be illegal to abandon so many people for so long? If we lived in the middle east would the Government consider invading to save us? Can the Government not side step the MRC for once and make progress in researching this disease? Are people with ME not to be regarded as human beings for once?
What is the ME Association doing to try to break this scandalous cycle of ministerialy endorsed buck passing?
When a family of infectious retroviruses is eventually found to be causing a multitude of chronic illnesses, who will be held to account for the UK media and British researchers being at the forefront in attempts to undermine the Whittemore Peterson Institute?
Now would be a good time for the ME Association to show strong leadership.
I quite welcomed the news actually.
Was pleasing to hear two MP’s I hadn’t heard before raising the questions.
Also it gave me some greater insight into the process. Always welcome that.
Interesting to note that researchers must approach the MRC with their proposals in order for funding to be considered.
I can’t see how it would work otherwise to be honest. I mean research grants given by the MRC to a project are not always the sole means of funding are they?
A ‘scientist’ will potentially make his case to the MRC and to other potential sponsors. He may not get all his money from one source or from the MRC at all.
I guess one could petition the MRC CFS/ME Committee direct if one wanted a particular focus for research… Hmmm…
Firestormm,
I can only assume from your comments that you are fairly new to this frustrating process.
There are some of us who have being doing as you suggest for years and years and years…… to no avail.
With the MRC summary dismissal of Prof Hooper’s complaint in the past couple of days, the situation has now gone beyond reasoned debate and no-one should be under any illusion about the contempt with which the MRC regards ME sufferers.