Three upcoming events this week:
APPG on ME meeting
The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.
*Please note this change of venue which was previously given as Committee Room 20
The meeting will also serve as the group’s AGM. Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced. Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).
APPG on ME Inquiry into NHS Services for people with ME
There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:
“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”
But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.
According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence. No complete list of attendees has been issued.
It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public. Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.
Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence. So very few of those who would have liked to have attended these two hearings were in a position to do so.
It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner. There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have.
If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week. If any information filters out I will post an update.
Dr Des Turner: firstname.lastname@example.org Parliamentary Office: 020 7219 4024
This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July. Attendance of the RSM event is by reservation of seat.
For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:
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: http://www.appgme.org.uk/minutes/mintues.html
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 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 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: