APPG on ME: Next meeting 2 December 2009 progress report

1] APPG on ME: Next meeting 2 December 2009 progress report;

2] Agenda for next meeting of Countess of Mar’s caucus group Forward-ME;

3] Clarification regarding membership of the APPG on ME


Yesterday, 12 November, I contacted Action for M.E.’s Policy Officer for an ETA for the Minutes and transcript of the last meeting of the APPG on ME (21 October). I also enquired when the Agenda for the 2nd December meeting was anticipated to be issued.

Tristana Rodriguez, Action for M.E.’s Policy Officer, has advised that the transcript typist for the last APPG meeting had said that a full transcript could be expected within four weeks or so. A transcript has yet to be provided and this would be chased up by Ms Rodriguez, next week, as the transcript typist was currently away.

I was advised that since the Minutes would be produced using the transcript for reference, no timeframe could be given for the publication of the Minutes until the transcript has been provided to the secretariat.

As far as the Agenda for the meeting on 2 December goes, secretariat were in the process of finalising details with the invited speaker.  When this had been achieved, an Agenda would be circulated. When the Minutes and Agenda have been issued I will publish copies, here.

Before the October meeting, a group of members from the ME community met up for coffee.  If you are interested in attending the December meeting and would like to meet up with a few others before the meeting starts drop me an email via the Contact Form with “December APPG meeting” at the top and I can put you in touch.

Link Back

MEA summary of meeting of APPG on ME (21 October 2009) and APPG Legacy paper


Forward-ME is a caucus group to the APPG on ME, convened and chaired by the Countess of Mar. Lady Mar decided which patient organisations would be extended an invitation to participate in her group and which would not. Unlike the APPG on ME, Forward-ME meets behind closed doors and members of the public are not able to attend, even as observers. Lady Mar convened this caucus group out of a desire to find “common ground” amongst the main patient organisations and the group appears to have superseded the now dormant ME Alliance.

No-one consulted with Lady Mar’s constituency of interest – the ME community – over whether a group which meets between meetings of the APPG, behind closed doors, would be welcomed and if so, what the extent of its remit should be, on what basis it would be decided to whom membership would be offered and how the wider ME community would inform its agenda. Forward-ME includes the organisation “ReMEmber” which promotes publications by Professor Michael Sharpe on its website; members also include representatives from Action for M.E., the MEA, AYME, the Young ME Sufferers Trust, Invest in ME, BRAME  and ME Research UK.

The 25% ME Group had been members but has since withdrawn support for Forward-ME. Invest in ME has already published its concerns in a statement (below) and its continued membership of the group is tabled for discussion at the next meeting of Forward-ME. 

Status 23rd March 2009


A website for Forward-ME is maintained here where Minutes of previous meetings can be read and I append a copy of the Agenda for the next meeting:





FROM 1.30 PM TO 3.00 PM.

1. Apologies.

2. Dr James Bolton, Deputy Chief Medical Adviser to the DWP.

3. Question and answer session.

4. Minutes of the meeting held on 8 July 2009.

5. Matters arising.

          i) Lightning Process

          ii) APPG Inquiry

          iii) MRC Project

          iv) Invest in ME membership of Forward-ME

6. Welfare Reform Bill.

7. Current Research.

8. Correspondence.

9. Any Other Business.

10. Date of next meeting.

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA have alternated the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here: