PERMISSION TO REPOST
RiME Campaigning for Research into Myalgic Encephalomyelitis
Update on issues with Minutes of APPG Meeting 12/7/07: Latest…
RiME wrote a detailed letter to the APPG Chair Des Turner 8/11/07 re. the mintues of the 12/7/07 meeting ( www.erythos.com/RiME APPG Meetings, July ’07 Meeting), with copies to Heather Walker (AfME) and Tony Britton (MEA), complaining that what I said 12/7/07 was not reported or reflected accurately.
12/7/07 I read out statements from five Group leaders in England, condemning the clinics in their areas (this was corroborated by three attendees); two of the comments (Kent + Birmingham) were omitted altogether, and the rest of what I said was not reported accurately. There was also the matter of the Chair’s remark, ‘The Chair noted that the views of Mr Davis… did not seem to reflect those of the majority’. Four attendees (three of whom were taking notes) do not recall this.
Des Turner replied to the above letter on 16/11/07:
“… I am sorry you did not feel that the minutes gave a full and accurate report of the points you made. The minutes are not intended to provide a verbatim record…”
Tony Britton [Ed: MEA secretariat to the APPG on ME] replied on 14/11/07:
“Thanks for showing me this. I’ve just reviewed my notes. The minutes look fine to me – adequately reflecting what went on at the meeting.”
Heather Walker did not reply to RiME, but wrote to one of our supporters in Kent on 7/1/08:
“… As the person who drafted these minutes can I say that I stand by what I wrote 100% – and that I work very hard to try to ensure balanced reporting…”
At the beginning of the 22/1/08 Meeting, I challenged the minutes. It was agreed to amend the reporting of what I said; according to the official minutes of that meeting, ‘Heather Walker apologised for omitting mention of two of the five leaders… ‘ (I don’t recall hearing this, nor did Joy Birdsey and another person who were taking notes); but the Chair’s comment stayed in.
In a letter dated 5/6/08 Sir Peter Spencer [CEO AfME] wrote to one of our supporters in Scotland:
“… At the next meeting of the APPG, which was held in January, we apologised for omitting mention of two of the five group leaders to whom RiME referred in their statement. The omission was not deliberate…”
So, are we satisfied now? No, not entirely. We don’t feel that the Secretariat for the 12/7/07 meeting (AfME) responded appropriately to people’s concerns prior to the last meeting 22/1/08: RiME’s letter wasn’t answered; and in the above reply to Kent Ms Walker says she stood by what she wrote 100%.
Have the minutes been amended at the Charities’ end?
MEA Website: the 12/7/07 minutes, which I ran off 17/6/08 (can’t seem to find them on their website this week), appear to be the same as they were when published by AfME 2007.
AfME Website: having checked this week there seems to be nothing about the 12/7/07 or 22/1/08 Meetings; the APPG Minutes page seems to cut off at the May ’07 Meeting.
[Ed: This appeared to be due to a temporary technical glitch. I had the same problem but the page in question did load in full after a protracted delay.]
Accordingly, RiME has written to Ms Walker (AfME) 26/6/08:
“… RiME wrote to Des Turner MP, you and Tony Britton (MEA) 8/11/07 about inaccuracies in the official minutes of the 12/7/07 APPG Meeting. The other two replied, you didn’t. ME parties, especially ones in Kent and Birmingham, feel you should have replied and made more of an effort to sort the situation out.
“You wrote to a person in Kent 7/1/08:
…. As the person who drafted these minutes can I say that I stand by what I wrote 100% – and that I work very hard to try to ensure balanced reporting….
But Sir Peter Spencer wrote 5/6/08:
… At the next meeting of the APPG, which was held in January, we apologised for omitting mention of two of the five group leaders to whom RiME referred in their statement. The omission was not deliberate…
Do you still stand by your 7/1/08 statement to the Kent ME patient?
This letter will be put in the public domain…
RiME has also written to Sir Peter Spencer AfME 26/6/08:
… Your comments please re. the enclosed letter (letter to Heather Walker 26/6/08 – ed.).
Since there seems to be nothing on your website re. the minutes of the 12/7/07 APPG Meeting (and the last one), it is not possible to see if the necessary amendments have been made. Are you aware of this?
This letter will be put in the public domain…
NB A number of letters were sent in. Here is one by the leader of Kent ME Network 8/1/08:
Dear Dr Turner,
… At the last APPG meeting, Paul Davis of RiME read out the following statement on behalf of the Kent ME Network:
‘Sarah Gould wrote to you on June 15 2007 saying ”I attended the CBT clinic in Maidstone …it offers nothing to those with neurological conditions like ME … members feel that the money would be better spent on biomedical research…”
Could you tell me why this statement was not included in the official minutes? This is what he reportedly said:
‘Paul Davis read out a letter from the Norfolk Group which listed dissatisfaction with CBT-led specialist services amongst local support groups in Norfolk, Manchester, Winchester and Eastleigh, adding that money would be better spent on biomedical research’.
There was no mention of the much maligned Kent Clinics, and members of our Group are extremely upset that their views were not recorded in the official minutes. Some wanted to attend the meeting, but were unable to do so due to the nature of the illness.
I request that the minutes be amended accordingly.
I have yet to receive a reply to my letter of June 15 2007 regarding the clinics, and I look forward to hearing from you on each of these issues…
cc Heather Walker AfME, Tony Britton MEA