MRC “CFS/ME” multi-disciplinary panel: Request under FOI

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

According to the CFS Research Foundation’s Newsletter #12, it was anticipated that the new MRC “CFS/ME panel of experts” or “CFS/ME 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 as Professor Stephen Holgate*, who holds office on a number of MRC committees, the MRC has yet to identify the other members of this panel.

In response to a written question from Francis Maud MP, Ian Pearson, 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”.

See:  CFSRF statement re MRC CFS/ME panel
https://meagenda.wordpress.com/2008/04/27/cfsrf-statement-re-mrc-cfsme-panel/

Government confirm plans for MRC panel
https://meagenda.wordpress.com/2008/04/27/government-confirm-plans-for-mrc-panel/

With the line-up of the Royal Society of Medicine’s “CFS” conference still fresh in our minds and mindful of the MRC’s own previous track record, the construct of “multi-disciplinary” in the context of ME and “CFS/ME” 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 see:

The AfME Research Summit and the list they did not want us to see
https://meagenda.wordpress.com/2007/10/11/the-afme-research-summit-and-the-list-they-did-not-want-us-to-see/

I’m sure I’m not alone in feeling more than a little apprehensive as we wait to hear who the MRC appoints to this CFS/ME “panel of experts”.

We have been told that the panel also seeks to involve what are being referred to by the CFS Research Foundation as “outside groups” and the MRC as “interested parties”.

It has yet to be established how the MRC panel will define an “interested party” and how and by whom it will be determined which “interested parties” will be approached for their involvement.

It is not known on what basis these “interested parties” will be participating in the business of this panel, whether any “interested parties” have already been approached by the MRC for their potential involvement or whether any “interested parties” have made representations to the MRC for inclusion in this project or through what means they might they might apply for inclusion.

Is a select group of “interested parties” to be identified by the MRC and offered seats on a Steering or Working Group on an equal footing alongside the multi-disciplinary “experts” selected by the MRC or are they to be used as a reference group?

By “interested parties” does the MRC mean patient representation organisations or existing research organisations such as ME Research UK or the CFS Research Foundation, on whose research committee
Professor Holgate already sits, or both?

It is not clear what involvement Action for ME (AfME) might already have or might be invited to have in the establishment of this new panel and in the drawing up of its Terms of Reference – a “multi-disciplinary panel” was one of the suggestions to come out of the joint AfME/MRC Research Summit.

On 25 April 2008, I submitted a request to the MRC under FOI Act for information relating to the setting up of this multi-disciplinary panel on “CFS/ME”.

On 27 May, I received the following response from Ms Wendy Raymond of the Medical Research Council.

Note that the specific fields of psychology and psychiatry were omitted from the list of fields cited by Ian Pearson, MP in his written response to Francis Maud but that “psychology and psychiatry” are included by Ms Raymond in her response on behalf of the MRC, below:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From: Wendy Raymond, Medical Research Council
foi@headoffice.mrc.ac.uk

Date: 25 April 2008

Thank you for your enquiry of 25 April 2008 asking a number of questions relating to a new multi-disciplinary panel on CFS/ME.

As you note, Professor Holgate discussed that the new panel was being established at a recent meeting in Southampton. You may also be aware that Professor Holgate is currently the Chairman of the MRC’s Population and Systems Medicine Board and is a member of MRC’s Strategy Board. The MRC is currently working to establish a panel of experts from different disciplines to look more closely at current research in CFS/ME. The panel will focus on the subtypes and causes of CFS/ME and will aim to identify and encourage new research towards increasing understanding of the basis of CFS/ME.

You have asked a number of questions about the proposed panel:

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

The panel has not yet established. As noted at the meeting in Southampton, Professor Stephen Holgate will chair the Panel. Once finalised, the membership of the panel will be published on the MRC website.

2] Through what process were the panel members appointed?

The members of the panel will be appointed by invitation, and membership will include leading experts in a number of fields including neuroscience, immunology, toxicology, imaging, psychology and psychiatry and will involve other interested parties.

3] To whom will this panel directly report?

The panel will report to the MRC’s Strategy Board. The Strategy Board (chaired by the Chief Executive) develops the overall strategic scientific plans for the MRC and ensures that the organisation is responsive to the current and future scientific landscape.

Further information on the role of the Strategy Board can be found on our website at www.mrc.ac.uk/NewsViewsAndEvents/News/MRC004303 .

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.

As outlined above, the panel is being established to look more closely at current research in CFS/ME, the panel will focus on the subtypes and causes of CFS/ME and will aim to identify and encourage new research towards increasing understanding of the basis of CFS/ME. The terms of reference will be discussed at the first panel meeting (date not yet arranged). We would be happy to send you a copy once they have been agreed.

After agreeing terms of reference, the panel will discuss their priorities and any programme of activities at this, and subsequent meetings.

As I have noted, further information about the panel will be published on our website as it becomes available. If you have any additional queries in the meantime or require any further information please do let me know.

I hope that you find this information useful and that you are satisfied that we have handled your request appropriately. However, if you are not satisfied, you may appeal using the MRC’s complaints procedure.
Details are on our website at:
www.mrc.ac.uk/index/about/about-contact/about-complaints_procedure.htm .
You may contact the MRC Complaints Officer by email at
customer.service@headoffice.mrc.ac.uk .
If, following the Complaints Officer’s reply, you remain dissatisfied; you may contact the Information Commissioner.
Details of how to take your complaint further are at
www.informationcommissioner.gov.uk .

Wendy Raymond
Medical Research Council
20 Park Crescent
London
W1B 1AL
DL Tel no 020 7670 5211
Fax: 020 7436 2665

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*Professor Stephen Holgate sits on a number of government scientific and advisory boards, chairs or is a member of several Medical Research Council committees and sits on numerous scientific advisory boards.  For MRC Declarations of Interest, research interests and consultancies see:
http://www.mrc.ac.uk/Utilities/DeclarationsofInterest/MRC003744

Professor Holgate is also a Member of the James Lind Alliance Strategy and Development Group, 2008. For further information about the James Lind Alliance see:
http://readmeukevents.wordpress.com/2008/05/08/the-mea-and-the-james-lind-alliance/

Professor Holgate’s areas of expertise are listed as asthma, air pollution and allergies, genetics of asthma and allergy, genetics, virus infections (lung); he has co-authored papers in these areas.

Professor Holgate is a member of the CFS Research Foundation’s research committee.  He is a co-author of the papers:

Gene expression subtypes in patients with chronic fatigue syndrome/myalgic encephalomyelitis.
J Infect Dis. 2008 Apr 15;197(8):1171-84: Kerr JR, Petty R, Burke B, Gough J, Fear D, Sinclair LI, Mattey DL, Richards SC, Montgomery J, Baldwin DA, Kellam P, Harrison TJ, Griffin GE, Main J, Enlander D, Nutt DJ, Holgate ST.

Current research priorities in chronic fatigue syndrome/myalgic encephalomyelitis: disease mechanisms, a diagnostic test and specific treatments. J Clin Pathol. 2007 Feb;60(2):113-6. Epub 2006 Aug 25. Review: Kerr JR, Christian P, Hodgetts A, Langford PR, Devanur LD, Petty R, Burke B, Sinclair LI, Richards SC, Montgomery J, McDermott CR, Harrison TJ, Kellam P, Nutt DJ, Holgate ST; Collaborative Clinical Study Group.

Gene expression in peripheral blood mononuclear cells from patients with chronic fatigue syndrome.
J Clin Pathol. 2005 Aug;58(8):826-32: Kaushik N, Fear D, Richards SC, McDermott CR, Nuwaysir EF, Kellam P, Harrison TJ, Wilkinson RJ, Tyrrell DA, Holgate ST, Kerr JR.

For statement from the CFS Research Foundation re MRC CFS/ME panel see:
https://meagenda.wordpress.com/2008/04/27/cfsrf-statement-re-mrc-cfsme-panel/

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