The current status of the APPG on ME

What is the current status of the APPG on ME?

Some information finally emerges…

It’s over four months now since the last APPG on ME meeting was held, on 22 January.

This meeting had been attended by Ann Keen MP. It was announced in July 2007, that Ms Keen, the new Parliamentary Under-Secretary of State at the Department of Health, had been given the job of overseeing the Department’s work on ME.

In the House of Lords, on Monday 2 June, Lord Darzi referred to Ms Keen’s attendance at the January APPG meeting, during a short debate centering around several ME related issues initiated by an Oral Question from the Countess of Mar.

Read the Hansard transcript of this short debate here:

https://meagenda.wordpress.com/2008/06/03/countess-of-mar-house-of-lords-2-june-2008/

We have a situation where Health Ministers and members of the House of Lords are referring to statements made by a Parliamentary Under-Secretary of State during an APPG meeting which took place over four months ago, but where interested parties cannot review the Minutes of the meeting in question since the Minutes have still not been published.

Although both Vice-Chairs to the APPG were present at the meeting on 22 January, the meeting was chaired by Dr Ian Gibson, APPG Secretary, in the absence of the Group’s Chair, Dr Des Turner.

Dr Gibson left before close of meeting and handed the chair over to Kerry McCarthy MP, who is not an Officer of the APPG on ME. It is my understanding that Ms McCarthy has not previously attended a meeting of this Group, but nevertheless, she was left, by Dr Gibson, to wind up the meeting.

No date or provisional date for a future meeting could be set by Ms McCarthy but Dr Gibson, as chair of the meeting, had not appeared to have given this any consideration before he departed.

Over the last four months, those making enquiries of the Officers of the APPG, that is to Dr Gibson and Dr Turner and also to the secretariat to the APPG, that is AfME and the ME Association, have met with either a wall of silence regarding the publication of Minutes and a date (or provisional date) for the next meeting or have been passed from pillar to post and back again.

The issue of the APPG on ME has become a hot potato.

As a result, and given the ambience at the last meeting and the tenor of comments made by Vice-Chair, Tony Wright, and by Dr Gibson, there has been much speculation about the current status of the APPG on ME and Dr Turner’s intentions for the future of the Group and his continuing chairmanship of it.

ME issues are being raised and discussed in the House of Lords by members of the APPG on ME, such as the Countess of Mar, with Ministers such as Lord Darzi, during debates attended by patient charity organisation reps such as Dr Charles Shepherd and non registered organisations such as BRAME.

[Dr Shepherd reports that “Representatives from BRAME (Christine and Tanya Harrison) and The ME Association (Dr Charles Shepherd) were present ‘Below the Bar’ in the House of Lords on Monday 2 June to listen to a series of questions to Health Minister, Lord Darzi, on the subject of ME/CFS.]

Written Questions relating to ME are being raised by Dr Ian Gibson and Dr Des Turner in the House of Commons. But members of the ME community making enquiries of Dr Gibson, Dr Turner and the APPG secretariat in relation to the APPG, itself, have not been receiving responses. So just what is going on?

Is the focus shifting away from the discussion of ME issues at APPG meetings in favour of a select few raising questions in both houses of parliament witnessed by a select few?

Following discussions at the last APPG, the ME Association had been pushing for a meeting with Lord Darzi – this appears to have come to naught. And although Dr Shepherd finds time to smugly report that his own “pet” issue – that of the Royal College of General Practitioners – was given an airing in the House of Lords on Monday, he and his fellow board members and staff do not apparently have the time nor the inclination to respond to enquiries from their members and the wider ME community in connection with concerns about the future of the APPG.

So, in the absence of satisfactory responses from Dr Gibson and Tony Britton (who had taken the Minutes at the January APPG meeting) and with no response at all from Dr Turner, I telephoned Mr Britton, yesterday.

I established the following:

I have been advised by Mr Britton:

That draft Minutes are said to have been submitted to the chair, last week, for approval.

That arrangements are being made for the next meeting of the APPG to be held some time in the first two weeks of July.

That the Minutes of the 22 January meeting have now been approved by the chairman and that Mr Britton was passing a copy on to Dr Ian Gibson (who chaired the January meeting in the absence of Dr Des Turner) “as a matter of courtesy”.

That Mr Britton anticipated that the meeting announcement and Minutes of the January meeting would be circulated by the end of this week.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A copy of the Minutes of the January meeting will be posted on this site as soon as they are available.

An Agenda for this proposed July meeting will also be posted as soon as an Agenda has been drawn up and issued for circulation.

It might be anticipated that a meeting proposed for early July will also serve as the Group’s AGM and that no additional meeting will be called before Parliament breaks up for the summer recess.

Since no meetings were held between the last Group AGM in July 2007 and the meeting which took place on 22 January and for which Minutes are still awaited, under the Secretariatship of Dr Ian Gibson only two APPG on ME meetings will have been held during the entire 2007 to 2008 parliamentary term.

I recommend that all those who are in a position to do so attend this meeting should a date be announced. Previous AGMs have struggled to make a quorum. Let us hope that Dr Gibson, as Secretary to the APPG on ME, will be doing his utmost to ensure an adequate turn out of Officers and members.

Suzy Chapman

5 June 2008

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