Minutes: APPG on ME research meeting, 19 May 2011

June 13, 2011

Five members of the All Party Parliamentary Group on ME met researchers who were in London to attend the annual Invest in ME conference in May. Here are the official Minutes of their meeting, which were signed off by acting chair Annette Brooke MP this week:

Meeting of Invest in M.E. and the Whittemore Peterson Institute, Nevada with the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (M.E.)

Summary of meeting held 19 May 2011, Portcullis House, Westminster


Annette Brooke MP (Chair)
Ian Swales MP
Marcus Jones MP
Chloe Smith MP
Countess of Mar

Parliamentary office representatives:
Sophie Tredinnick (Office of Peter Luff MP)
Dominic Haney (Office of Ian Swales MP)

Also in attendance:
Tristana Rodriguez (Action for M.E.)
David S. Bell MD (Researcher)
Annette F. Whittemore (Whittemore-Peterson Institute)
Judy A. Mikovits (Whittemore-Peterson Institute)
Malcolm Hooper (Invest in M.E.)
Andreas M. Kogelnik MD, PhD (Stanford University)
Rosamund Vallings (IACFS)
Richard Simpson (Invest in M.E.)
Pia Simpson (Invest in M.E.)
Anna Louise Midsem (Danish M.E. Association)
Regina Clos (Fatigatio e.V. Germany)
Rosemary Humby (Cambridge M.E. support Group, carer)
Cllr Ted Eden (Councillor, Romford)
David Eden (M.E. sufferer)


The Chair welcomed attendees and proposed an informal approach to the meeting. Key speakers were invited to address the Group in turn, and attendees were welcomed to make comments and ask questions as they arose.

Richard Simpson gave a brief introduction to the charity Invest in M.E., which campaigns for biomedical research into M.E. They organise an annual international research conference in London, which is accredited for Continuing Professional Development, and concentrate on three areas: diagnosis, education of health care professionals, and perception of M.E.

Richard also spoke about the steps that have been taken to try to set up a centre of excellence for M.E. in Norwich.

Dr Judy A. Mikovitz described the work of the Whittemore Peterson Institute in Nevada which has presented a possible link between xenotrophic murine retro-virus (XMRV) and CFS.

Dr David Bell shared his experience as a paediatrician in a small isolated community in Buffalo, New York in 1985 when 210 people became ill with symptoms resembling Royal Free Syndrome and the Iceland epidemic.

Dr Andreas M. Kogelnik, an infectious disease clinician, explained how it is possible to look at disease at the molecular level and to define clusters for people with M.E./CFS. He will be publishing his findings soon.

Prof. Malcolm Hooper commented that enterovirus and herpes virus has been identified amongst some people with M.E. Environmental conditions also play a part.

The Chair assured the Group that the current All-Party Group are determined to make a difference to the lives of people with M.E. She said that she was aware that the process is painfully slow, and that people have waited for far too long. She thanked the Group for a most informative meeting.

The meeting was called to a close.

4 thoughts on “Minutes: APPG on ME research meeting, 19 May 2011”

  1. She said that she was aware that the process is painfully slow, and that people have waited for far too long

    Unacceptably so. Patients have had enough & will take action & make a reluctant government act.

  2. Hope there was more too it than that!? Sounds like the shortest meeting involving parliamentarians I have ever ever come across 😉

  3. Hear, hear, wildconfined.

    I’ve been writing to my MP for 12 years (present incumbent for 10) – result? Nothing. He doesn’t give a toss.

    Thank goodness for Annette Brooke et al but I can’t honestly see what the APPG has achieved so far. To date, it’s just been another politicians’ pow-wow party – let’s hope the present members live up to their words. If they improve matters for us, I’ll be first in the queue with the bouquets!

  4. What a pathetic situation they have created. You must find the cause to have research funding, care or treatments. How many diseases do we not know the cause of?

    XMRV is going to come down hard on all of them. They should have acted long before this retrovirus infected so many.

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