Next APPG on ME: Wednesday, 21 October 2009

All Parliamentary Party Group on ME

The next meeting of the APPG on ME is scheduled for


1.30-3pm, Wednesday 21 October 2009

Committee Room 20, House of Commons



1. Welcome by the Chairman

2. Speaker (TBC. The Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, has been invited.)

3. Minutes of the last meeting – available here

4. Matters arising

– APPG Inquiry into NHS Services

– Future Chairmanship

– Future Work of the APPG

– APPG legacy paper (in preparation for the General Election)

5. Green Paper, Shaping the Future of Care Together

6. Welfare update

– Employment and Support Allowance

– Welfare Reform Bill

7. Any other business

8. Date of next meeting

Note: Legacy Paper

One of the items on the agenda is the drafting of a legacy paper, outlining areas of work for the APPG, in the event of a change of officials following the General Election. The Chair, Dr Des Turner, has already indicated his intention to stand down.

Members of the APPG and people with M.E. are invited to put forward three or four bullet point suggestions for the key issues and objectives for the APPG, following the General Election. Please e-mail your ideas to the Secretariat, who will produce a draft consensus document from the results. Submissions received by 5pm 19 October will be considered for inclusion in a draft legacy paper to be tabled 21 October. Later submissions should be received no later than 20 November, to be considered for inclusion in the second draft.

Issued on behalf of: Des Turner MP, 179 Preston Road, Brighton BN1 6AG. Tel: 01273-330610.


By: Heather Walker, for the Secretariat (Action for M.E. and the ME Association)

Ed: All enquiries in connection with this meeting to APPG on ME Chair, Dr Des Turner, or to APPG on ME secretariat


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: