Inaugural meeting of the APPG for ME: Wednesday 30th June

Inaugural meeting of the APPG for ME: Wednesday 30th June


Update: On Friday, 25 June, the ME Association announced a change of date.  Please note that the APPG on ME inaugural meeting is now scheduled for Wednesday, 7 July.

Change of date for APPG on ME reformation meeting – now July 7

“Unfortunately, the Westminster meeting to reform the All Party Parliamentary Group on ME has had to be moved forward a week – to Wednesday, July 7. On the bright side, this does mean that there is more time to encourage your own MP to attend.”

Action for M.E. and the ME Association have published the following information:

Help make sure the All-Party Parliamentary Group for ME reforms

Tuesday, 22 June 2010

The All Party Parliamentary Group for M.E. (Myalgic Encephalomyelitis) strives to support the improvement of health and social care of all people with M.E. in the UK. All APPGs were dissolved at the end of the last Parliament before the general election. Arrangements are being made to re-register this group as a matter of urgency.

An inaugural meeting of the APPG for ME will be held by David Amess MP on Wednesday 30th June, at Westminster.

The agenda will deal with appointment of office holders and members only and due to limitations of time and space it will not be possible to open the meeting to the public on this occasion. This is in order to ensure that the vital work required to re-register the APPG is carried out in a timely manner for the 13th July deadline.

It is vital that as many MPs as possible join the group as we need to identify at least 20 Parliamentarians to act as qualifying members. These must include at least ten who are not part of the government and of which at least six are members of the main opposition party i.e. Labour.

If you would like to help please send your local MP an email or letter asking them to join the APPG. There is a draft letter here to help get you started.

Open Word document here on ME Agenda: Example letter

or here on the ME Association’s website or here on Action for M.E.’s website

Dear __________________

As one of your constituents, I sincerely hope you will strongly support the interests of people with Myalgic Encephalomyelitis (M.E.), the long-term fluctuating illness also known as Chronic Fatigue Syndrome (CFS), which is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS).

M.E. affects 250,000 people in the UK and is recognised by the NHS and National Institute for Health and Clinical Excellence to be as disabling as multiple sclerosis, rheumatoid arthritis, congestive heart failure, and other chronic conditions yet it receives nowhere near the same degree of recognition or funding.

A very powerful way of demonstrating this to your constituents would be to join the All Party Parliamentary Group for M.E. and to help it to re-register in the new Parliament.

An inaugural election of officers at a meeting of the APPG for M.E. to be held by David Amess MP on Wednesday 30th June. This will not be a long affair but is a necessary preliminary to re-registration before the 13 July deadline.

I do hope that you will be able to attend but if this is not possible, could you please join the group anyway. We need to identify at least 20 Parliamentarians to act as “qualifying members” in order to remain on the approved list.

Yours sincerely


Ed: Note that this meeting is not a public meeting and the room number and time are not being publicised. If your MP expresses an interest in attending the inaugural meeting you may need to contact Action for ME’s Policy Officer, Tristana Rodriguez ( and ask for details of the meeting to be forwarded directly to your MP.  Alternatively, refer your MP to David Amess, MP, outgoing APPG for ME Treasurer, who is convening this inaugural meeting.

Minutes of previous APPG for ME Meetings and Legacy document

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

APPG Legacy Paper 26.02.10


Clarification regarding membership of the APPG for 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 for ME.

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

In the case of Associate Parliamentary groups, applications for membership may be considered 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 for 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 for ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG for 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.”

At the time of publication, the House of Commons Session 2009-10, Register of All-Party Groups [As at 12 April 2010] can be accessed here:


The Nature of All-Party Groups
Purpose and Form of the ‘Register of All-Party Groups’
Purpose and Form of the ‘Approved List’ of Groups
Administration of the Register and Approved List

At the time of publication, the Registry entry for the outgoing APPG for ME group could be viewed here:

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. 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).”

In the past, AfME and the MEA have alternated the task of minute taking and the preparation 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 have been opened up 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 members of the ME community and their carers, who can and do regularly attend and contribute to these meetings. This has not always been the case and the presence of members of the public is at the discretion of the APPG chair and committee.

So none of the following five national registered membership ME patient organisations are members of the APPG for ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, have provide the secretariat function: 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 : a research organisation and 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.

The names of ME patients and carers attending meetings are recorded in the minutes of meetings and their contributions to these meetings are minuted.

For the past couple of meetings, an official verbatim transcript has been prepared from an audio recording of the procedings and this has been published alongside briefer minutes. This parliamentary service has been funded by Action for M.E. and the ME Association.

It is not known whether transcripts will continue to be provided for the meetings of any new group that may be convened. It is unconfirmed whether minutes will be published for the inaugural meeting or whether representatives of the outgoing group’s secretariat will be present.

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:

or opened here on ME agenda

APPG Groups Rules