MRC CFS/ME “multi-disciplinary panel” FOI request

The MRC’s CFS/ME “multi-disciplinary panel” and a request under FOI

According to the CFS Research Foundation Newsletter #12, it was anticipated that the new MRC CFS/ME “panel of experts” or “multi-disciplinary panel” would be meeting in April or May “…with crossboard membership along with outside groups which, it is hoped, will lead to a workshop.”

It might reasonably be expected, then, that the members of this panel have already been appointed. But other than naming the panel’s chair, Professor Stephen Holgate, who already holds office on a number of other MRC committees, the MRC has yet to identify any other members of this panel and place this information in the public domain.

In response to a written question from Horsham MP and Conservative front bench spokesman Francis Maud, Ian Pearson MP, Minister of State for Science and Innovation, wrote: “The [MRC] panel will come from varied fields including neuroscience, immunology, toxicology and imaging, and will involve interested parties and focus on the subtypes and causes of ME/CFS”.

Given the MRC’s previous track record, the construct of “multi-disciplinary” in the context of ME/CFS sends a cold shiver down my spine. One only has to review the list of participants of the joint AfME/MRC Research Summit which took place in November 2006, to get a feel for the MRC’s past interpretation of “multi-disciplinary”.

For the list of participants of the joint AfME/MRC Research Summit held in November 2000 see:
https://meagenda.wordpress.com/2007/10/11/the-afme-research-summit-and-the-list-they-did-not-want-us-to-see/

I am not alone in feeling more than a little apprehensive as we wait to hear who has been appointed to this MRC CFS/ME “panel of experts” or “multi-disciplinary panel”.

We’ve been told that the panel will seek to involve what have been described as “interested parties” or “outside groups”.

It has yet to be established what involvement, if any, Action for ME might already have or might be invited to have in the future with this new panel – a “multi-disciplinary panel” was one of the suggestions to come out of the AfME/MRC Research Summit.

It might be anticipated, also, that “interested parties” and “outside groups” have already been approached for their potential involvement.

It will be interesting to establish just who comprises this panel, through what process they were appointed and which “outside groups” and “interested parties” will be invited to become involved or may already have an involvement.

In April, I submitted a Freedom of Information request to the MRC.

Date request submitted: 25 April 2008

To: Freedom of Information Officer, Corporate Affairs Group, Medical Research Council, 20 Park Crescent, London W1B 1AL foi@headoffice.mrc.ac.uk

FOI Request

It was disclosed at a recent medical research conference held in Southampton, that Professor Stephen Holgate, professor of clinical pharmacology at Southampton University, has been named as chair of a new multi-disciplinary panel set up by the Medical Research Council which, it is said, will focus on the subtypes and aetiology of ME/CFS as part of a plan to fertilise cross-disciplinary research activity in this field.

I request under FOI, today, 25 April 2008:

1] A list of the names of all members of the ME/CFS multi-disciplinary panel set up by the Medical Research Council.

2] Through what process were the panel members appointed?

3] To whom will this panel directly report?

4] The panel’s Terms of Reference.

5] Any Standing Orders that the panel may have been given.

6] If a work programme has been drawn up for the panel, I request a copy.

I have been advised by the MRC that they will reply within the 20 working days deadline.
The MRC already publishes the names of members of various MRC steering groups and committees so I see no grounds for not fulfilling this request for information.

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