Invest in ME - APPG January 2012

APPG for ME – Meeting 24^th January 2012

Annette Brooke MP 24 January 2012

Dear Annette,

Thank you for inviting Invest in ME to the APPG on 24th January.

Unfortunately we are unable to attend in person and send our apologies due to continuing illnesses in the families of two of the trustees.

We would like to submit the following for comment and question into the APPG meeting on 24th January.

Whilst we are pleased the Medical Research Council (MRC) allocated £1.6 million for ME/CFS research we are concerned that a large proportion of that money was awarded to projects that do not even involve ME patients as primary research participants.

We would like to pose the following question to Sir John Saville, director of the MRC, and Professor Stephen Holgate, chair of the MRC ME/CFS Group.

Has the MRC ME/CFS Group agreed upon diagnostic and research criteria to be used for the MRC funded ME research or is it up to each research group to decide which criteria they use? Surely it is now time to standardise on one criteria.

The Norwegian researchers , Professor Mella and Dr Fluge, have stated they believe the Canadian Consensus Criteria are the most accurate criteria to be used for patient selection for their ongoing clinical trial using the drug Rituximab to treat ME patients.(1)

The Norwegian Directorate of Health has now also adopted the new international (ICC) criteria which are an update of the Canadian Criteria as the criteria to be used to diagnose ME patients.(2, 3)

1	1. Fluge Ø, Bruland O, Risa K, Storstein A, Kristoffersen EK, et al. 2011 Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study. PLoS ONE 6(10): e26358.doi:10.1371/journal.pone.0026358
2	http://www.helsedirektoratet.no/helse-og-omsorgstjenester/cfs-me/diagnosekriterier/Sider/default.aspx
3	Myalgic Encephalomyelitis: International Consensus Criteria. Bruce M Carruthers, Marjorie I van de Sande, Kenny L De Meirleir, Nancy G Klimas, Gordon Broderick, Terry Mitchell, Don Staines, Peter Powles, Nigel Speight, Rosamund Vallings, Lucinda Bateman, Barbara Baumgarten-Austrheim, David S Bell, Nicoletta Carlo-Stella, John Chia, Austin Darragh, Daehyun Jo, Don Lewis, Alan R Light, Sonya Marshall-Gradisbik, Ismael Mena, Judy A Mikovits, Kunihisa Miwa, Modra Murovska, Martin L Pall, Staci Stevens. Journal of Internal Medicine. Accepted Article, July 20, 2011 doi: 10.1111/j.1365-2796.2011.02428.x (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full)

We would also like to make attendees of this meeting aware of the 7th International ME/CFS Conference which Invest in ME are hosting on 1st June 2012 in Westminster.

Invest in ME would like to extend invitations to the chair and vice-chair of the APPG for ME to attend the conference as our guests.

We would appreciate these points being made and minuted at the APPG meeting.

Thank you again for inviting Invest in ME to be part of the APPG for ME.

Kathleen McCall

Chairman Invest in ME

(These was the agenda for the APPG meeting as passed to IiME on 20th January 2012)

APPG AGENDA Tuesday 24 January 2012

1. Welcome by the Chair

2. Speaker: Prof Sir John Savill, CEO, Medical Research Council Followed by question and answer session

3. Minutes of the last meeting

4. Matters arising

5. Date of next meeting

6. Any other business

Note:

IiME have not seen the minutes from the last (October) APPG meeting yet and do not know if our submission to that meeting was discussed or commented upon.

Our submission for the October meeting is here - click here.