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.