BBC One: The Politics Show, Sunday 10 May: APPG on ME
The last meeting of the APPG on ME took place on 1 April. This meeting was largely devoted to discussion around the unofficial APPG on ME inquiry into NHS service provision, proposed by Dr Des Turner (APPG on ME Chair), last July.
At the meeting, it was stated that the website for the inquiry’s interface between the APPG on ME and the public would be launched later that week. This website was intended to have been one of the conduits via which comments and suggestions could be submitted to Dr Turner around the planned surveys and questionnaires which would form part of the data information gathering for the inquiry. The deadline for receipt of comments and suggestions was 5 May.
It’s nearly six weeks since that meeting and no website has materialised.
The inquiry’s controversial Terms of Reference have meanwhile been parked on Dr Turner’s parliamentary website. A draft Timeline had also been circulated at the meeting but no draft or final Timeline has been posted on Dr Turner’s website nor on the websites of Action for M.E. or the ME Association (APPG on ME joint secretariat).
A stenographer was present at this meeting and according to Dr Turner and Action for M.E. it was intended that a transcript of the proceedings would be made available.
We are still waiting for the Minutes of this meeting and for the transcript.
A spokesperson for Action for M.E. has said that all future meetings of the APPG on ME are to be transcribed – again, we are waiting for official confirmation from the APPG on ME committee and the reason for a change of procedure.
The ME Association had no representative at the meeting and has made no comment on the inquiry’s already slipping schedules, on the non appearance of the website nor on an ETA for the Minutes of this important meeting.
The BBC were also present at the meeting to video a segment for The Politics Show, broadcast yesterday.
BBC One: The Politics Show London
Broadcast on: BBC One, 11:00am Sunday 10th May 2009
Duration: 60 minutes
Available until: 12:09pm Sunday 17th May 2009
Segment at 1.00.34
or clip, here:
“PWME Samantha Brown goes to Westminster to express her unhappiness at the medical tests for Disability Living Allowance and Incapacity Benefit.”