May be reposted
Before I post the Agenda for the next meeting of the APPG on ME I’d like to correct a misconception posted on one of the forums of the Benefits and Work site.
It has been posted that AfME (Action for ME), 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.
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 Lords are permitted membership of the group and only Members of the House of Commons or Lords have voting rights at its meetings.
In Associate Parliamentary groups, applications for membership of the group may be accepted by the group officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.
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 group’s current office holders and its 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 alternate 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 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 is a research organisation and a registered charity and is represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.
BRAME is an unregistered, non membership organisation run entirely by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.
RiME is an unregistered, non membership organisation 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 will be listed as attendees in the minutes of meetings, and their contributions to these meetings 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:
APPG on ME: Agenda for meeting of the Group which is also the Group’s AGM on Wednesday 2 July 2008 as provided by Tony Britton, MEA, secretariat to the APPG on ME on 24 June
Click here Agenda PDF for Agenda in PDF format
Meeting of the APPG on M.E. to be held on Wednesday 2nd July, 1.00-3.00pm
Committee Room 19, House of Commons
1. Welcome by the Chairman, Dr Des Turner MP
2. Apologies for absence
3. Minutes of the last meeting.
4. Matters Arising.
Annual General Meeting
1. Election of Chairman
2. Election of Vice-Chairs, Secretary and Treasurer
Business Meeting (continued)
5. Presentation on Child Protection Issues as they affect the families of children with ME by Jane Colby, executive director of The Young ME Sufferers Trust, and Mary-Jane Willows, chief executive of The Association of Young People with ME.
6. Oral Reports:
(a) NICE Guideline: Judicial Review hearing, 17th June
(b) House of Lords debate, 2nd June
(c) Royal College of General Practitioners classification
(d) Lord Darzi and the NHS Review
(e) The Strategic Health Authorities’ consultation on the NHS Review
(e) NHS Plus occupational health leaflets – update
(f) DWP medical guidance
6. Any Other Business
7. Date of Next Meeting