Extract from controversial start to December APPG on ME meeting

Extract from the controversial start to the meeting of the APPG on ME held on 2 December 2009

Shortlink: http://wp.me/p5foE-2Ex

Corrected version of Transcript available on Action for M.E.’s website: http://tinyurl.com/yhcxs3c  or open Word File here: Corrected Transcript APPG on ME 02.12.09

Open Transcript APPG on ME 02.12.09 PDF

Open Minutes APPG on ME 02.12.09 Word

Open Minutes APPG on ME 02.12.09 PDF

[Date of next meeting of APPG on ME announced as Wednesday 10 March 2010]

Update @ 4 February 10

Corrected version of transcript now appears below and in the Word File above.  Note that these corrections do not address the misattributions at the end of the meeting.

Edit: I have been asked to note that statements made by Nicky Zussman and recorded in the official transcript have been misattributed to Michelle Goldberg and that a request has been made to the APPG on ME Secretariat for amendments. Questions raised with the Chair, towards the end of the meeting, by John Sayer, have been misattributed to another attendee.

Because of the controversy surrounding the chairing of this meeting I am publishing an extract from the official verbatim transcript of the opening minutes.

(Transcript prepared through the offices of the parliamentary stenographer service, for the purpose of which an audio recording of the meeting was also made). I am told that a documentary production team (who were not filming) was also present, although its presence and purpose was not announced to the meeting.

It is understood that Dr Des Turner, MP, Chair of the APPG on ME, intends to stand down from his seat at the forthcoming election and and that he will be taking up a seat in the House of Lords.

Extract from official verbatim transcript: 2 December 2009

Des Turner MP (Chair): Good afternoon Ladies and Gentlemen and welcome to the all-party group on ME. Sir Peter Spencer has distributed a document to you, which is the interim report of the inquiry. We will discuss that in a short while but you have a chance to have a look at it before that.

I am glad to see so many people here this afternoon. The inquiry is the main topic of this meeting. Blood was sweated over this, but the piles of evidence were such that given the limited time and resources available to the group, we were not able to bring together a report with which we were totally satisfied—we nearly managed it, but not quite. Therefore, we decided to produce an interim report that contains the findings. Those findings are not going to change. The conclusions and recommendations of the report stand as they are in the interim report. The rest of the report has been reduced to a very brief introduction. We hope to produce the full report in due course, but it will contain the same recommendations and conclusions. They are as clear as daylight as far as the group is concerned, and are taken from the evidence. We thought it prudent to get something out as soon as possible, so that we could produce some effect with the recommendations. That is why the document is somewhat truncated. However, as I have said, the recommendations stand.

Paul Davies: A report has been handed out by Sir Peter Spencer. What was the consultation on that interim report?

Chair: This is the report. Let me make it clear that an all-party group is a group of parliamentarians. That group of parliamentarians has produced this report.

Paul Davies: But did you consult with Action for ME and the ME Association?

Chair: Yes, we did.

Paul Davies: Why did you consult only with those organisations?

Chair: Because they are the only groups who gave us any assistance. They are the only people who assist with the business of running this group. If you would offer to help with the secretariat you might get consulted, but you don’t.

Paul Davies: Yes, but the point is that this shows bias towards those organisations.

Chair: I am sorry. This does not show bias to anyone.

Paul Davies: It does because those organisations—

Chair: That is your opinion. This report is our assessment of the evidence. It is not biased for or against anyone.

Paul Davies: It is biased because you only consulted with Action for ME and the ME Association. Those groups support the clinics that we believe the large majority of ME patients do not want.

Sir Peter Spencer: May I make a quick point? The Minister will not have much time. Perhaps we could talk about this matter properly afterwards and have a proper discussion. Otherwise, the Minister will leave before we have had time to make use of his presence. We should get on with the main business.

Chair: I quite agree. Those comments bear no relation to the report. Can we get on with the report?

Paul Davies: They bear relation to those patients who do not want these clinics.

Chair: We will have that discussion afterwards. I know you feel that you represent millions of patients, but I do not think that you do. We will have that discussion afterwards. We are here to discuss the report.

The report is before you and the recommendations speak for themselves.

Ciaran Farrel: I was going to ask for some reading time. Perhaps we could go briefly through the report and the recommendations, so that we can understand what the Minister has to say.

Chair: You don’t know what I am about to say. To be honest, I am beginning to lose patience with you two. You would stretch the patience of any Chairman.

Countess of Mar: May I propose that these two people be evicted from the meeting so that we can carry on our business?

Chair: That would be the sensible thing to do. You two people spend most of your time trying to disrupt the work of this group.

Nicky Zussman: I don’t agree. I think that they bring important points.

Chair: I have yet to hear one.

Countess of Mar: In that case, I am going to leave. I am not prepared to waste my time listening to you when I have other things to do. I am sorry. I will not stay in a group with people who cannot behave themselves in a meeting and listen to the Chair.

[Countess of Mar leaves]

Chair: If you are not prepared to be quiet or leave, I will terminate this meeting. What will you do?

John Sayer: I am sorry Mr. Chairman. Why are you looking at me? It is the first time I’ve been here. I am a bit surprised at how things have gone so far.

Chair: So am I—surprised and exceedingly disappointed.

Nicky Zussman: We are the ill people. It is us who are being described. It is 11 years since the CMO’s working group was convened, and we are still being told what to do like very young children. I think that Paul has a point.

Chair: The Countess of Mar has put a lot of work into this. She works very hard to support ME sufferers, but she has just left in disgust. I feel very inclined to do so myself. If you wish to terminate the work of this group, continue with this utterly pointless discussion.

Nicky Zussman: We are not at school.

Chair: You are not at school, and you are on your own.

Janet Taylor: Please do not leave, Dr. Turner. I have come all the way from Yorkshire. I want to hear the Health Minister. I have important things to say.

Chair: I am sure you do. I am sorry, but we seem to have an element that is determined to be disruptive and does not want to listen to anything. Some people only want to rake over the coals of arguments that they have been making for years which lead absolutely nowhere. They are greatly to the detriment of the ME community.

Mary-Jane Willows: May I speak? On behalf of those patients who value and respect the work that you have tried to do for many years, I understand where you are coming from. I ask you to try and finish what you were saying. If you are interrupted again, I totally respect your decision to leave. I beg you to try once more and speak, without interruption.

Janice Kent: I second that.

Chair: Alright, but one more interruption, and I will call the police to remove you.

[End extract: Full verbatim transcript here: Transcript APPG on ME 02.12.09 PDF ]