The following officers were elected at the Annual General Meeting of the APPG on ME yesterday (Wednesday, 22 June 2011):
Chair: Annette Brooke MP
Vice-Chairs: Ian Swales MP and the Countess of Mar
Secretary: Russell Brown MP
Treasurer: Martin Vickers MP
David Amess MP also attended the meeting.
As previously reported, the focus of the agenda was issues affecting children with ME. The speakers were Jane Colby, executive director of the Young ME Sufferers Trust, and Mary-Jane Willows, chief executive of the Association of Young People with ME.
Three briefing papers were circulated:
Main issues facing children with ME
The minutes of the meeting will be posted in due course.
Thank you Annette Brooke, Ian Swales, Countess of Mar, Russell Brown, Martin Vickers and David Amess for showing an interest – unlike my MP!
The bio bank (now only for blood?) will not be using a deferential diagnosis. It will never help anyone make any progress. If it is at the University College London will the Welcome Trust be involved? They don’t have a great track record of dealing with XMRV.
Why are you always so dismissive and antagonistic towards any research that is funded by the MEA Ramsay Research Fund?
The biobank is a separate initiative to the post-mortem and tissue bank initiative.
Now that biobank funding of up to £180,000 is secured and the protocols agreed we are aiming to open it very shortly. Surely this is a substantial achievement that warrants some support from people with ME?
The patients will be very thoroughly assessed – so we will know if they meet Fukuda criteria for CFS and/or Canadian Criteria. We are also looking at whether they can be sub-grouped according to whether they meet criteria for Ramsay ME. No other blood sample bank is doing this.
The Welcome Trust is not involved in the biobank and we have not approached them for funding.
The MEA Ramsay Research Fund is not the issue.
Why are you antagonistic to using strict definitions, such as the CCC? Is it the CCC you will be applying in this case or an adaptation of the 2003 criteria?
Without a diagnosis of inclusion no biomarkers will be uncovered, as you cannot find biomarkers for the social construct called Fukuda. People who meet the criteria for CCC (2003), will not necessarily meet Fukuda.
The other issue is how these banks will then be used. If separation of those with a diagnosis of inclusion from those without is achieved, will there be any research using those samples?
Regardless, HGRV research will shortly render the plans for both banks outdated.
This reply from Dr John H Greensmith, ME Free For All.org, to the BMJ, encapsulates the issues I and many other continue to raise on research criteria.
http://mefreeforall.org/wp/re-ending-the-stalemate-over-cfsme-fiona-godlee-british-medical-journal-22-june-2011/