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

http://www.meassociation.org.uk/content/view/1053/161/

1] MEA summary of meeting of APPG on ME (21 October 2009)

(Note this is a brief personal summary published by Dr Charles Shepherd on behalf of the ME Association and not the official meeting Minutes.  The Minutes and possibly a verbatim transcript will be issued at a later date by the  secretariat on behalf of Dr Des Turner, Chair, APPG on ME.)

2] APPG on ME launches legacy paper consultation

WordPress Shortlink: http://wp.me/p5foE-2cK

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

This is a very brief summary of key points from the APPG meeting held on Wednesday 21 October in Committee Room 21 at the House of Commons.

The meeting was Chaired by Dr Des Turner MP.

Among parliamentarians present were the Countess of Mar, Russell Brown MP, Andrew Stunell MP, Bill Wiggin MP, and Tony Wright MP..

Representatives from charities and other organisations included those from AfME, BRAME, Kent and Sussex Alternative Group for ME, The MEA, reMember, RiME, Sussex and Kent ME Society, WMMEG and the 25% Group. There were also several members of public present.

A more detailed account of the meeting will appear in the Minutes, which will be posted on the APPG website when they have been through the drafting process and agreed.

PRESENTATION FROM THE RT HON YVETTE COOPER MP, SECRETARY OF STATE FOR WORK AND PENSIONS (DWP)

The main item was a presentation from the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, on benefit issues. Yvette was accompanied by Dr James Bolton, Deputy Chief Medical Adviser at the DWP.

Yvette explained that she had a strong personal interest in ME having suffered from it for a period starting in 1993 before entering parliament. During this time she was very ill for a period of roughly two years and completely off work for a year. This was followed by a period of recovery with more variable health over another two years. She has now made a full recovery and manages to combine being an MP, Minister and bringing up three children! During her early days in parliament she was actively involved with the APPG when it was chaired by Tony Wright MP. However, she did not feel it was appropriate to make general assumptions about ME/CFS based on her own experience.

Yvette briefly outlined the aims behind changes to the care, welfare and benefit systems that are now taking place –in particular the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of the Work Capability Assessment (WCA) in deciding eligibility for ESA. Following on from her personal experience with ME she fully understood the concerns being expressed about assessing the fluctuating nature of ME/CFS and the need for a flexible approach regarding any possible return to work. She believed that the new WCA for ESA claimants took these problems into account. However, she was very willing to look at the problems that were raised during the meeting.

Yvette answered a series of questions from the Chair, who also read out written questions that had been submitted in advance of the meeting, along with questions from those attending the meeting. Yvette had only intended to be there for around 20 minutes but managed to stay for about an hour.

Questions relating to all the common and very familiar problems facing people with ME/CFS were discussed. In particular:

• The role of the new Work Capability Assessment for ESA claimants – especially in relation to people being unable to sustain physical/mental activity and the post-exertional symptomatology experienced by people with ME/CFS. In response, Yvette pointed out that this assessment should not depend on a precise diagnosis but on what a claimant could and could not do from the point of view of physical and mental function.

• The type of information and training on ME/CFS that is given to DWP decision makers and examining doctors. In response, Yvette maintained that adequate training in relation to specific illnesses such as ME/CFS was part of the DWP programme.

• Difficulties in accessing assessment centres. In response, she noted these concerns, agreed that the centres must be accessible to people with disabilities, and said she is very keen to hear of specific examples.

• The way in which a patient’s own GPs and specialist were progressively being removed from the opinion gathering process and replaced by doctors who knew nothing about the patient’s social and medical background. In response she noted these concerns but did not indicate that there would be any shift in the DWP position.

• Providing real help for people who can and want to return to work on a flexible and/or part time basis. In response, she agreed that this was vital – citing her own experience of a gradual and flexible return to work after having quite severe ME.

• Reviewing the permitted work rules – which can be very unhelpful in the case of ME/CFS. These concerns were sympathetically noted.

• Des Turner raised the specific issue of problems with tribunals and the knowledge about ME/CFS of those who sat on the panels making these decisions. Examples of very unsatisfactory procedures at tribunals were mentioned by several of those present. In response, Yvette managed to somewhat duck the issue by explaining that the tribunals are classed as being ‘independent’ and their administration comes under the Ministry of Justice. This is clearly going to remain an important issue on the parliamentary agenda.

• Tony Wright MP made the point that something was clearly wrong with the benefit assessment system when so many people with ME/CFS were failing on their first application but then being successful on appeal.

• Charles Shepherd questioned the DWP auditing and monitoring of the success/failure rate of applications for ESA from people with specific illnesses, including ME/CFS. In response, Dr Bolton explained that no figures are available.

• With regard to DLA and the government Green Paper, Yvette was asked about the mixed messages coming from ministers on the future of DLA. In reply, she acknowledged the concerns being expressed and made it clear that DLA for people of working age was not under review. She stated that a government statement on DLA would be made on Wednesday 22 October by the Rt Hon Andy Burnham.

At the end of this presentation. Charles Shepherd asked Dr James Bolton if he would be willing to meet with ME/CFS charity representatives to discuss these concerns in more detail and he agreed to do so. This meeting is now being followed up through the Forward ME group.

OTHER MATTERS

APPG INQUIRY INTO NHS SERVICES IN ENGLAND Des Turner explained that the report was now being written with the intention of having it ready for presentation to the APPG at the next meeting in early December. A Minister from the Department of Health will be invited to attend this meeting to respond to the report.

APPG LEGACY PAPER Des Turner explained that the APPG would have to be reformed after the general election – which will have to take place before June 2010. And with him standing down as an MP we would need to find a new Chair in 2010. To coincide with the winding up of the APPG, a Legacy Paper is being prepared which outlines the key areas of work and actions that have been taken by the APPG during the current parliament, as well as future actions. The APPG is keen to receive input on this from people with ME/CFS and a copy of the current draft will be posted on the APPG website. Comments on this draft must be received by the Secretariat by 19 November – so that further discussion on a further draft can take place at the December meeting.

STATEMENT BY WMMEG (West Midlands ME Groups Consortium): Jill Cooper read out a further statement relating to issues about patient representation, transparency and the suitability of the education and training programme provided by the ME/CFS Clinical and Research Network and Collaborative (CCRNC) This was followed by a very lively discussion on the current state of NHS services for people with ME/CFS.

XMRV: A rather informal discussion on various aspects of the new viral research findings took place.

Date of next meeting: Provisionally fixed for Wednesday 2 December

APPG website: www.appgme.org.uk

——————

http://www.meassociation.org.uk/content/view/1052/161/

APPG on ME launches legacy paper consultation

A consultation on the Legacy Paper for the All Party Parliamentary Group (APPG) on M.E. was launched yesterday (October 22).

The current Chair of the APPG, Dr Des Turner, intends to stand down at the next General Election, due sometime before 3 June 2010.

Comments on the draft APPG legacy paper should be sent to the Secretariat tristana.rodriguez@afme.org.uk  

This email address is being protected from spam bots, you need Javascript enabled to view it no later than 19 November 2009.

The Countess of Mar, who is Secretary of the Group, thanked people with M.E. and Action for M.E. for the work done so far in producing the draft.

The main speaker at the meeting was the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, who described her own personal experience of M.E. and answered a number of questions. In particular, she reassured people with M.E. that it was not the Government’s intention to change working-age Disability Living Allowance under current care reform proposals.

Other topics on the agenda included an update on the APPG Inquiry into NHS services, which is expected to produce a report before the next meeting of the APPG, which will take place on Wednesday 2 December 2009. A Minister from the Department of Health would be invited to attend.

In addition to the Chair, Dr Turner and the Secretary, the Countess of Mar, the meeting was attended by Vice Chairs Andrew Stunell MP and Tony Wright MP (Vice Chairs), plus Bill Wiggin MP and Russell Brown MP.

Minutes and a transcript of the meeting will be produced in due course.

Download Draft Legacy Paper in PDF

Next APPG on ME: Wednesday, 21 October 2009

All Parliamentary Party Group on ME   http://www.appgme.org.uk/index.html

The next meeting of the APPG on ME is scheduled for

 

1.30-3pm, Wednesday 21 October 2009

Committee Room 20, House of Commons

 

AGENDA

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.

Email: turnerd@parliament.uk

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:  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.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

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:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

APPG on ME: Minutes and Transcript for 8 July 2009 meeting

All Party Parliamentary Group on ME meeting 8 July 2009

The last meeting of the APPG on ME took place on 8 July 2009.  The Minutes are published below, in both PDF format and as text.  The transcript of the entire meeting is posted in PDF format only.

Minutes APPG on ME 8 July 09

Transcript APPG on ME 8 July 09

 

Text of Minutes:

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Countess of Mar
Treasurer: David Amess MP

 

Minutes of the meeting of the All Party Parliamentary Group on M.E.
held at 1.30-3pm, Wednesday 8 July 2009
Committee Room 13, House of Commons

 

Present:

Parliamentarians
Dr Des Turner MP
Andrew Stunell MP
Countess of Mar
Peter Luff MP
Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Kimberley Hogarth (Action for ME)
Charles Shepherd (MEA)

Organisations and individuals
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Christine Harrison (BRAME)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper (Warwickshire Network for ME)
Bill Kent (reMEmber)
Janice Kent (reMEmber)
Augustine Ryan
Michelle Goldberg

Apologies:

1. Welcome

The Chairman welcomed those present and apologised to those who may have been inconvenienced by a change of room. Two further apologies were made: that unfortunately there would be no speaker today, and that the chair would have to leave the meeting at 2 p.m. but that the Countess of Mar had kindly agreed to complete the meeting.

2. Annual General Meeting

Current officers were re-elected with the exception of Dr Ian Gibson, who had resigned as an MP. The Countess of Mar was elected to replace him. The elected Officers for 2009-2010 are therefore:

Chair: Dr Des Turner MP
Vice-Chairs: Andrew Stunell and Anthony Wright
Treasurer: David Amess
Secretary: Countess of Mar

The Chair pointed out that he is not standing at the next general election, so a new Chair will have to be found at that point.

3. Minutes of the last meeting

The Chair reminded the Group that the minutes are not intended as a verbatim record; they are business minutes. However he accepted that Paul Davis had said at the last meeting: “There is a road map that goes back to the CMO report, York review 1, and a certain school of psychiatry.” The reference to the CMO report had been omitted from page six of the transcript.

4. Matters arising

Jane Colby asked that it be noted that the BBC Politics Show, filmed in part during the last meeting, was transmitted in ME awareness week, and that everybody was very grateful to the APPG for allowing it to happen.

5. APPG Inquiry into NHS Services

The Chair reported that evidence sessions were due to start at 2pm the next day in Committee Room 19. The first session would hear from patients and patient organisations. He hoped that the next week’s session would include a Minister, the Chief Medical Officer and service providers. Many patients had submitted evidence. Questionnaires had been sent to all Primary Care Trusts. The aim was to produce a report which would act as a campaigning tool to improve services for people with ME.

During the discussion which followed, Dr Turner had to leave and the Countess of Mar took the chair. Some concerns were raised eg. that:

i. Existing services were not focused on neurological ME and over-emphasised the psychosocial model
ii. Some people would not respond to the survey for that reason
iii. Some panel members had made favourable comments about existing services in the past
iv. Evidence sessions clashed with key local meetings elsewhere, affecting attendance
v. People submitting evidence had not received confirmation of receipt due to the inquiry’s lack of administrative support
vi. Publicity for the inquiry had been limited and would not reach the majority who were not in touch with certain charities, support groups or services
vii. Some patients do not collate evidence
viii. How issues not covered by surveys, such as the replacement of consultants by new services in some areas, could be addressed.

Some issues could be raised via questions through the panel eg. support for severe cases.

It was noted that the decision had been taken by parliamentarians at the last meeting, to drive forward the inquiry quickly, because of the imminence of a general election.

The hope was for a report by the inquiry which would have sufficient credibility, evidence and parliamentary authority for consideration by the Health Select Committee.

6. Statement from WMMEG (West Midlands ME Groups) Consortium on ME/CFS – Education and Training in the NHS

i. Heather Walker apologised formally for tabling the wrong statement on their behalf at the last meeting.
ii. Jill Cooper asked that sufficient time to be allocated to discuss the key issues of appropriate NHS training at a future APPG meeting.
iii. Sir Peter Spencer responded to the WMMEG statement saying that he did not believe that NHS staff were being ‘trained’ to treat this illness as a psychological illness and that Action for M.E.’s involvement in the last NHS collaborative conference had resulted in delegates hearing Professor Stephen Holgate emphasise the importance of getting new research talent into the field, plus discussion on the need for properly derived patient reported outcome measures.
iv. Noting to the statement’s reference to Pathways to Work, the Countess of Mar reported that the Welfare Reform Bill was going through the House of Lords. She had been fighting hard to have ME and other fluctuating conditions recognised in their own right by the Grand Committee and not “lumped in” with mental illness.

The meeting acknowledged its appreciation of all the work that the Countess had done.

7. Future Work of the APPG

Ideas included:

i. Inviting Baroness Young, Care Quality Commission, to address the Group
ii. Maintaining focus on the DWP and Welfare to Work
iii. Follow-up on the presentation made by Jane Colby and Mary-Jane Willows about child protection problems, by asking the Inspector of Social Services to come to the APPG to listen to parents, consider how social services might be alerted to the possibility of M.E. in children and examine how parents could be informed of their rights eg. though a simple leaflet signposting information and organisations that could help them.

8. All Party Parliamentary Group Legacy Paper

As a General Election was due and the Chair had noted his intention to stand down, it was suggested that it might be useful to draw up a short summary of the APPG’s recent activities, outstanding concerns and objectives for consideration by the new Chair and any other new officials.

People with M.E. could be invited to put forward three or four bullet point suggestions for the key issues and objectives and to submit them to Heather Walker, Action for ME and Charles Shepherd. On behalf of the Secretariat, Action for M.E. would produce a draft consensus document from the results.

Action: Heather Walker to supply a copy of the Legacy Paper produced by the Cross Party Group on ME in the Scottish Parliament before their last General Election.

Click for Legacy Paper

9. Website

A website had been set up for the APPG at www.appgme.org.uk. Although the impetus for the site had come from the inquiry, the site would continue after the inquiry and would be the central focal point of information about meetings and activity.

10. Any Other Business

Michelle Goldberg raised the case of Kay Gilderdale 54 and the assisted suicide of her daughter, Lynn, after 17 years of M.E.

Michelle described the lack of support she herself had faced and highlighted problems experienced by another woman proven innocent after receiving an ASBO.

Christine Harrison reported on her campaign about pets in holiday accommodation. Currently, customers with allergies can not be guaranteed a holiday property in which a registered guide and/or support dog has not stayed. The Countess of Mar had kindly taken this up in the House of Lords, asking for a new clause to be added to the Disability Discrimination Act to say that people who rent out holiday accommodation are permitted/allowed to have a policy of no pets and no smoking to allow them to offer accommodation to guests who may have health conditions  and/or allergies that might be exacerbated by the presence of pets and smoke.

11. Date of Next Meeting

The chair advised the group that the next meeting would be in the Autumn

APPG on ME: Agenda for next meeting Wednesday 8 July 2009

The next meeting of the APPG on ME will be held on Wednesday 8 July.  Members of the public are able to attend these meetings. 

The website of the APPG on ME is here: http://www.appgme.org.uk/

Minutes and full, verbatim transcript of the 1 April meeting here:

http://meagenda.wordpress.com/2009/06/15/appg-on-me-minutes-and-transcript-meeting-1-april-2009/

 

1.30 – 3pm, Wednesday 8 July 2009

Committee Room 19*, House of Commons

See latest update for a further room change

*Please note this change of venue – previously Committee Room 20

The meeting will be the Annual General Meeting and the future work of the APPG will be discussed.

AGENDA

1. Welcome by the Chairman

2. Minutes of the last meeting – available at:

http://www.afme.org.uk/res/img/resources/FINAL%20APPROVED%20%20MINUTES%20APPG%20on%20ME%201%20April%2009.pdf

3. Matters arising

- Update on the APPG Inquiry into NHS Services

- Statement from WMMEG (West Midlands ME Groups) Consortium on ME/CFS – Education and Training in the NHS

4. AGM

i. Election of Chairman

ii. Election of Vice-Chairman

iii. Election of Secretary

iv. Election of Treasurer

5. Future of the APPG

i. Future work

ii. APPG legacy paper (in preparation for a General Election)

iii. APPG website

6. Speaker to be confirmed

7. Any Other Business

8. Date of Next Meeting

 

Heather Walker, Action for M.E., Secretariat, APPG on ME

Or contact: Des Turner MP, 179 Preston Road, Brighton BN1 6AG

Tel: 01273-330610. E-mail: turnerd@parliament.uk

*It has been agreed that amendments to minutes should be put in writing to the Secretariat one week before the meeting. Please e-mail heather.walker@afme.org.uk

APPG on ME: Minutes and transcript, meeting 1 April 2009

The Minutes and a verbatim transcript of the APPG on ME meeting held on 1 April 2009 were published on 3 June by the APPG on ME secretariat.

The Minutes of the meeting of the All Party Parliamentary Group on ME dated 1 April 2009 can be viewed as a Word document here on ME agenda and are appended:

MINUTES APPG on ME 1 April 09

For a trial period, a verbatim transcript ofmeetings by a Hansard transcriber is also being made available. The transcript of the 1 April 2009 meeting can be read here (17 pages):

VERBATIM TRANSCRIPT APPG on ME 1 APRIL 2009

 

Note: Change of date for next meeting of the APPG on ME.

The date given at the end of the Minutes of the 1 April 2009 meeting was 24 June 2009.  This has since been changed to:

Wednesday, 8 July 2008

The next business meeting – and Annual General Meeting – of the All Party Parliamentary Group on ME at Westminster will be held be held on Wednesday July 8. It will take place in Committee Room 20, House of Commons, between 1.30pm and 3pm. Please watch the ME Association website for further details.

Minutes

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Ian Gibson MP (Ed: since stood down as MP for Norwich North)
Treasurer: David Amess MP

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30-3pm, Wednesday 1 April 2009  Committee Room 20, House of Commons

Present

Parliamentarians
Dr Desmond Turner MP (Chair)
Andrew Stunell MP (Vice Chair)
Peter Luff MP

Parliamentary office representatives
Koyes Ahmed, office of Dr Turner MP
Ceri Finnayson, office of Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Tony Britton (MEA)

Organisations and individuals
Dr Derek Pheby (ME Research Observatory)
Kirsty Haywood (Royal College of Nursing)
Sue Waddle (MERUK)
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper, Warks
Stephen Jones
Augustin Ryan
Alan Gold
Annette Barclay
Joan Duvey
Michelle Goldberg
Jill Cooper
Samantha Brown with Max Cotton (BBC Politics Show)

Apologies:

Parliamentarians: Anne Begg MP, Angela Browning MP, Andrew Dismore MP, William Etherington MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Ann Keen MP, Kerry McCarthy MP, Iris Robinson MP, Rudi Vis MP, Countess of Mar, Lord Puttnam

Non-parliamentarians: Dr Charles Shepherd, MEA, Christine and Tanya Harrison, BRAME, Janice and Bill Kent, Member, Janet Taylor (Kirklees Independent ME Support Group), Ciaran Farrell.

1. Welcome

The Chairman welcomed those present and explained that the meeting was joined by Max Cotton, BBC Politics Show, who was filming for a future programme featuring a person with M.E., plus a transcriber from Hansard, who would produce a verbatim note of the meeting. The verbatim note would be made available in addition to more concise business minutes produced by the Secretariat.

2. Minutes of the last meeting

The meeting agreed to:

i. Delete from item iii.f: “He also asked if the services inquiry would cover research”, as this was not said by Paul Davis.

ii. State that the Strategic Framework Document that Nicky Zussman referred to at the APPG of 8th July 2008 was: “Children and Young People’s Emotional and Mental Health in East Sussex 2005 – 08. The Strategic Framework for Commissioning and Planning Services. Appendix 4: Mental health of children and young people – classifications and definition.”

3. Matters arising

The meeting agreed to:

i. note that the Welfare Reform Bill was proceeding through the House of Lords

4. APPG Inquiry on NHS service provision for people with ME

i. Committee: The Chair announced that the Parliamentarians who will be considering evidence would be: Dr Ian Gibson MP, Tony Wright MP, Andrew Stunell MP, the Countess of Mar, Baroness Finlay and the Chair, Dr Des Turner.

Later in the meeting (under Terms of Reference), Peter Luff MP said he would like to be party to the process of obtaining information from health authorities, at which point the Chair invited him to join the inquiry group.

ii. Terms of Reference: The Terms of Reference (ToR), amended following feedback after the last meeting, were circulated.

The amended ToR were discussed in detail. It was decided that: while the APPG accepted the WHO definition of ME, the inquiry recognised but could not be delayed by debates about terminology and would look at services on offer to people classified as having either ME or CFS (but see below). There would be no further consultation on the amended terms of reference.

iii. Inquiry questionnaires and submissions of written evidence:

a. There would be two questionnaires: one for people with M.E./carers, one for PCTs.

b. Questionnaires to PCTs would ask questions about the criteria for diagnosis and ask about the basis of estimates of people with M.E.

c. There would also be a patient survey.

d. People who were not at the APPG meeting would have a chance to give evidence.

e. Anonymity would be granted to people who are prepared to give evidence. No individual would be named in the inquiry report without their express consent.

f. The way in which patient outcomes are measured will include adverse reactions to treatment and people dropping out of treatments.

g. To capture current USFDA guidance on how the inquiry measures and understands patient outcomes, it should refer to the term “patient-reported outcome.”

h. Kirsty Haywood would provide the Chair with an advance copy of her paper on patient reported outcomes, as submitted to the journal of the Royal Society of Medicine.

i. ME sufferers, carers or professionals were all welcome to submit suggestions for specific questions that could be asked in the survey. The deadline for receiving ideas was 5 May.

j. It was recognised that the timetable was demanding and the scope of the inquiry was limited by lack of time and resources but the parliamentarians present agreed that such a timetable was necessary if the inquiry was to complete the evidence-taking process before the summer recess and publish a report before the run-up to the next general election.

k. A press release about the launch of the inquiry would be issued straight away.

iv. Inquiry website: it was hoped that a website, with full timetable details of the inquiry, would be up and running shortly.

5. Any Other Business

Two documents were tabled by the Secretariat on behalf of organisations who were not able to attend the meeting.

i. The first document tabled should have been a statement by the West Midlands ME Groups Consortium (WMMEG), entitled ME/CFS – Education and training in the NHS / NHS CCRNC conference. However, a supplementary WMMEG statement from 2007 was tabled instead, in error. The correct statement was circulated electronically, with apologies, the following day.

ii. The second document tabled related to Care Quality Commission proposals to make NICE recommendations (for all conditions) mandatory. This matter was brought to the attention of the APPG by BRAME.

It was suggested that a representative from the Care Quality Commission should be invited to address the next meeting.

6. Date of Next Meeting

24 June 2009 (subject to speaker availability)  (Ed: Since changed to Wednesday, 8 July)

RiME: NHS Services Inquiry, Confusion re. Deadlines 27 May 2009

Ed: Note that a website for the APPG on ME (which includes pages for the APPG on ME inquiry into NHS service provision for people with ME) has now been launched.

Action for M.E. and the ME Association, who perform the role of secretariat to the APPG on ME, have yet to issue a notice alerting the ME community to the website.

The website can be found here:  http://www.appgme.org.uk/

The inquiry page here:  http://www.appgme.org.uk/inquiry/inquiry.html

The APPG on ME has yet to publish the Minutes of the 1 April 09 meeting or the promised transcript of the meeting.  No Timeline has been published for the inquiry.

RIME issued the following a couple of days ago:

RiME: NHS Services Inquiry, Confusion re. Deadlines 27 May 2009

Campaigning for Research into ME (RiME)  www.rime.me.uk

NHS Services Inquiry

Confusion re. Deadlines

In Terms of Reference 2 (document in full – www.rime.me.uk – Inquiry folder), it said that written evidence needed to be submitted by June 9.

However, in the Press Release by Des Turner 3/4/09 (on website), it says the cut-off point for the submission of written evidence is 30 June 2009 and that oral hearings are likely to take place in the middle of July.

So, two sources – two different deadlines.

The Press Release also says, ‘A website is being set up for the inquiry, which will include the timetable of activities’.

But, to our knowledge (May 27), there is still no website.  (Ed: See above)

There are rumours that the June 9 deadline is for those who want to attend oral hearings. But without written confirmation from Turner’s office, they are only rumours.

One doesn’t know how written evidence or applications to present evidence should be made ie should it be put on a questionnaire or ad lib?

To try to get clarification, I phoned Turner’s office May 12. I spoke to ‘Nick’ (a p.a) who said he was meeting with Dr Turner that afternoon and would phone me back. No call back that day. Phoned next day. Spoke to another p.a who said he would ask ‘Nick’ to phone me. As of today, I still haven’t heard anything. Tried yesterday (May 26), but got ansaphone. MPs are on Witsun recess this week.

I sense that more and more are getting impatient with the lax approach to procedure.

If the website was to appear on Monday June 1 with details re. June 9 deadline; well, again, it’s all too tight for people with ME.

The above hardly inspires confidence in the process or the APPG.

Does it have any Credibility?

The inquiry committee will consist of four APPG officials – Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP and Andrew Stunell MP; plus two APPG members – Peter Luff MP and Lady Mar.

The comments of five of them (see below) also don’t inspire confidence; leading some of our supporters to say it would be better if the Inquiry didn’t happen, and the current APPG just faded out…

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The Gibson Report was signed by two APPG officials – Dr Ian Gibson MP and Dr Des Turner MP; plus APPG member, Lady Mar. It says:

(A) ‘The £8.5m ring fenced by the DOH was used.. to set up 13 new CFS/ME treatment centres nationwide… The Group is extremely pleased with the advent of these centres and we hope they will be maintained and rolled out’ (5.1.) (B) that they were to his (Wessely’s) model (3.2) (C) that it was impressed with the work of Trudie Chalder (4.3) saying this treatment (CBT) has a role to play in treating CFS/ME.

Des Turner has already commented positively on the CMO Report. At the APPG meeting 2/7/08, he said he expected the inquiry would be taking evidence on progress (? – ed.) made since the CMO Report in January 2002 (is Turner not prejudging? – ed.):

Tony Wright MP Vice-Chair of APPG seems to link the ‘CFS/ME’ centres to the causation of ME. On 9/12/04 when APPG Chair he stated:

… With regard to your constituent’s points on CBT and GET, I believe that when these therapies are applied with the agreement of both patient and clinician they undoubtedly benefit some patients…

…I have always been, as Chair of the APPG… , active in calling on Government to provide more resources into finding the causes of ME. I am delighted that under this Government and for the first time government funding has been granted to directly benefit people with ME. The £8.5m is being released through 2004/5 to develop specialist NHS services for people with CFS/ME across England…

RiME’s West Midlands Officer received the following email from APPG Vice-Chair Andrew Stunell MP 21/4/04 (RiME Newsletter 3 Spring 2004 was critical of the CMO Report, York Review 1, GET, CBT):

… I am not clear why you have sent me this.

It may help you in approaching MPs to recognise that some of us have personal or family experience of ME. In my case the treatment system you scorn has been effective, as it appears to have been for quite a high proportion of sufferers.

It is seriously damaging to the case you espouse so passionately to waste time slagging it off, and casting ridiculous aspersions on those who deliver it.

Just think about it. Am I likely to ask a Health Minister to sack people who have provided very effective treatment for a member of my family?

There is a reasonable case for more research, but you don’t provide it. Can I suggest you pass this message back up the line to whoever is in charge of your communication strategy, and get them to change it? Otherwise don’t be surprised if this sort of stuff gets filed under ‘green ink’…

Lady Mar to RiME 13/11/08:

… I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET…

…The CMO, the Department of Health and NICE acknowledge that ME is not a psychosocial problem but, as with any long-term illness, there are psychological aspects to it. In the absence of any treatment, they recommend CBT/GET for a few who might benefit from it. It really is time that we all acknowledge the good bits of any government instigated proposals and that we work together to put right those parts that are unhelpful…

Paul Davis  rimexx@tiscali.co.uk    www.rime.me.uk

27 May 2009

Slip slidin’ away (APPG on ME inquiry into NHS services for ME)

APPG on ME inquiry into NHS services for people with ME

According to the draft Timeline circulated at the 1 April APPG on ME meeting:

5 May  Deadline for people with M.E. to submit questions to Dr Turner via website or in writing

(no website has been launched)

12 May  Compilation and issue of final questions

- patient survey
- questions for service providers identifying those that are obtainable under FO1

(no questionnaires or patient surveys have been issued)

19 May  Comment on draft surveys by parliamentarians – return to Dr Turner

Whitsun Recess

21 May -1 June

(Parliament is now in recess)

26 May  Issue final surveys and post them on inquiry website

(that’s today, no website, no surveys)

—————–

According to the ME Association (page 7, ME Essential)

“The delay arose because there was an initial problem finding an administrator. This has been resolved with the secondment of a parliamentary intern to the inquiry.”

 

We still have no Minutes and no transcript of the important 1 April meeting of the APPG on ME.  The inquiry’s Terms of Reference have been placed on Dr Des Turner’s parliamentary website, but no copy of any draft or finalised Timeline has been published.

Nobody knows what’s going on and Dr Turner is not responding to concerns.  Secretariat to the APPG on ME – that’s Action for M.E. and the ME Association, have issued no statements on the progress of these arrangements.

After the fiasco that was the “Gibson Inquiry”, why did the APPG committee think they could undertake this inquiry with unrealistic deadines and no adequate admin resources?

Why has the Secretariat encourage them to do so?

The APPG on ME should pull this inquiry.

The Secretariat should be advising them against going ahead.

BBC One: The Politics Show, Sunday 10 May: APPG on ME segment

BBC One: The Politics Show, Sunday 10 May: APPG on ME

The last meeting of the APPG on ME took place on 1 April. This meeting was largely devoted to discussion around the unofficial APPG on ME inquiry into NHS service provision, proposed by Dr Des Turner (APPG on ME Chair), last July.

At the meeting, it was stated that the website for the inquiry’s interface between the APPG on ME and the public would be launched later that week. This website was intended to have been one of the conduits via which comments and suggestions could be submitted to Dr Turner around the planned surveys and questionnaires which would form part of the data information gathering for the inquiry.  The deadline for receipt of comments and suggestions was 5 May.

It’s nearly six weeks since that meeting and no website has materialised.

The inquiry’s controversial Terms of Reference have meanwhile been parked on Dr Turner’s parliamentary website.  A draft Timeline had also been circulated at the meeting but no draft or final Timeline has been posted on Dr Turner’s website nor on the websites of Action for M.E. or the ME Association (APPG on ME joint secretariat). 

A stenographer was present at this meeting and according to Dr Turner and Action for M.E. it was intended that a transcript of the proceedings would be made available.

We are still waiting for the Minutes of this meeting and for the transcript.

A spokesperson for Action for M.E. has said that all future meetings of the APPG on ME are to be transcribed – again, we are waiting for official confirmation from the APPG on ME committee and the reason for a change of procedure.  

The ME Association had no representative at the meeting and has made no comment on the inquiry’s already slipping schedules, on the non appearance of the website nor on an ETA for the Minutes of this important meeting.

The BBC were also present at the meeting to video a segment for The Politics Show, broadcast yesterday.

BBC One: The Politics Show London

Broadcast on: BBC One, 11:00am Sunday 10th May 2009
Duration: 60 minutes
Available until: 12:09pm Sunday 17th May 2009

Segment at 1.00.34

http://www.bbc.co.uk/iplayer/episode/b00kg98b/The_Politics_Show_London_10_05_2009/

or clip, here:

“PWME Samantha Brown goes to Westminster to express her unhappiness at the medical tests for Disability Living Allowance and Incapacity Benefit.”

RiME: NHS Services Inquiry, 4 May 2009

ME agenda: Position on the unofficial APPG on ME inquiry into NHS service provision for people with ME

Given an apparent lack of funding for the administration and resources to support the undertaking of an inquiry; given the APPG on ME’s failure to properly consult with the ME community (other than with the APPG on ME Secretariat) over this inquiry’s remit and before publishing its Terms of Reference; given the many concerns that were expressed to Dr Turner in October and November, last year, and the current level of concern over the Terms of Reference and the tightness of deadlines, I consider that Dr Turner should postpone taking this initiative forward until proper consultation has taken place over what the aims and objectives of any inquiry carried out in the name of the ME community should be and how the APPG on ME might best set about achieving those objectives.

In failing to recognise this inquiry’s shortcomings and in failing to acknowledge and respond to the levels of concern, our national patient organisations are failing to act in the interests of their membership and the wider ME patient community. 

Action for M.E., the ME Association and our other national ME patient organisations should call jointly on Dr Turner to slam the brakes on this juggernaut by withdrawing their support for this inquiry until the problems around this initiative have been thrashed out.

In November, in response to my concerns about the inquiry, the Countess of Mar wrote that she would like to point out to me that the APPG on ME, like all APPGs, is there for the benefit of members of both Houses who wish to be informed about a particular interest and that she believed it was therefore appropriate for the Chairman and his officers to decide what subjects they wish to tackle and how they intend to proceed.

I am sure I do not need to remind the Countess that MPs are paid to represent our interests – not their own.

Suzy Chapman
4 May 2009

—————————

Campaigning for Research into ME (RiME)  www.rime.me.uk 

NHS Services Inquiry

There is a new folder on RiME Website re. above.

Note that closing dating for ’survey submissions’ is May 5 (Tuesday). Some have written asking what this means. Well, one can only go on what’s on the press release by Des Turner 3/4/09:

“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.

“People with ME, carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.”

A selection of comments we have received so far are below. If you haven’t yet replied, please consider doing so (and please send us copy).

Comments to turnerd@parliament.uk

Paul Davis rimexx@tiscali.co.uk     www.rime.me.uk 

———————–

North London

“… I am concerned that in order to evaluate the CFS Clinics properly and adequately in the round it will require a great deal of work on the part of the Inquiry Team, and that insufficient thought has been given by the Inquiry as to how to handle and evaluate the volume of paperwork that will be generated by this part of the Inquiry alone.

I therefore do not see that the Timetable Tabled at the APPG meeting of the 1st of April as being workable on this particular score alone….”

Gloucs

“… Does the slash (/) between CFS (Chronic Fatigue syndrome) and ME (Myalgic Encephalomyelitis), CFS/ME mean “and” or does it mean “or”? That is, do you take CFS and ME to be synonymous and interchangeable? Or do you think that ME is an illness that can be subsumed under the diagnostic label, Chronic Fatigue Syndrome, which includes several other illnesses of various physical and/or psychiatric causes?

I’m sure that you can guess that veteran ME sufferers know that it is neither of these but a discrete neurological illness, named in the 1950s, recognised by the World Health Organisation (WHO) in 1969 and for which there is an abundance of physiological evidence to justify its name today.

But, if you are going to continue to bundle ME, together with an unknown number of illnesses, all of various uncertain causes, can you say how you are going to be any more likely to provide an enduring effective and safe treatment for people with ME than you can with those currently available – Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) – which have neither of these merits and which, in too many cases, make matters worse, sometimes irrecoverably so…”

Lanarks

“… As a severely affected ME patient in Scotland, I feel compelled to write (1) to support ME friends in England (2) because we don’t want the English CFS Clinics north of the border.

It is evident from the RiME website and other sources that the clinics do not address the neurological illness Myalgic Encephalomyelitis. Myalgic Encephalomyelitis has been fudged with other illness/conditions resulting in (1) Myalgic Encephalomyelitis getting skewed and diluted (2) inappropriate treatments for ME patients, notably GET and CBT, which are proven to be harmful.

Until the powers to be take the issues of nomenclature and classification seriously, ME patients will continue to suffer, and be denied hope.

Any effective project has to begin by screening the biomedical research of which there is plenty. How long before the science is acknowledged Dr Turner?”

South London

“… I think the time-scales for ME patients getting comments/evidence in are too tight.

Can I ask please who was responsible for initiating the Inquiry? Was it the APPG or did the Health Department or Government approach you to do it?

Any public Inquiry/Report into ME should begin by screening the biomedical evidence. But once again, it would appear that that evidence will be overlooked.

Instead, it will approach providers who appear to be catering for something else. Too, probably some patient organisations who do not adhere to a strict ME Code.

The APPG’s cavalier attitude to matters of nomenclature and classification will most probably, in my opinion, render the project skewed and void.

It’s not too late to change your mind Dr Turner. Ditch the Inquiry and lobby vigorously for biomedical research: what ME patients primarily want…”

Yorks

“…1) TIMETABLE I am concerned that there are conflicting dates for the cut-off point for submission of written evidence.

I am also concerned that there is such a short timescale:

If questionnaires are to be prepared and distributed after the 5th May for written evidence from patients and NHS service providers….

… 3) TERMINOLOGY

…. It is agreed that to use only the precise WHO classification of ME will impede access to information from the NHS. However it has to be understood that the refusal of the NHS to provide any treatment for our neurological problems has caused much suffering for patients and their families. I personally have suffered for over twenty years.

4) FREEDOM OF INFORMATION

The UK Medical Research Council has a file on ME; it contains records and correspondence since at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023.

Recently many files are being opened early. Perhaps consideration could be given to this file being opened now, if it would help resolve the suffering in this country.”

Lancs

“… I am writing to you regarding the APPG Inquiry into NHS services for CFS/ME sufferers and would like to tell you of my experience.

When I first became ill and my blood tests came back negative my GP implied there was nothing wrong with me other than depression

I was ill for 4 months before being referred to a specialist and only then because I was persistent

I was diagnosed with CFS by a Consultant in Medicine only to attend a follow up appointment 2 months later and be told by the Consultant’s registrar that it was “all in my head”

I was discharged back to GP care but my GP did not want to know

I asked to be referred to my local CFS/ME clinic and had to wait 13 months for an appointment

I am now under the clinic but because they are so underfunded yet cover 2 counties in the North West I am only seen sporadically

I attended my GP on 2 occasions with groin pain and was told it was down to my CFS so go away and get on with it. I was eventually diagnosed with osteoarthritis in my hips and had been suffering for 6 months

I decided I could no longer cope with the GP surgery so had to move practices

I have been astounded by the lack of support for CFS/ME sufferers from the NHS. It really is a case of go away and get on with it yourself. As an ex-NHS employee I am more than aware of the support sufferers of other conditions get.

I also wish to point out that the World Health Organisation (WHO) classified CFS/ME as a neurological disorder in the WHO’s International Classification Of Diseases (ICD G93.3). So sufferers should not be made to feel like it is psychological and ‘all in our heads’ which seems to be the view of a lot of NHS staff…”

Leader of Kent ME Network

“… Could you confirm that the APPG on ME recognizes the definition of ME as a neurological illness under WHO G93.3?

The clinics cater for a hybrid ME/CFS and specifically exclude those with neurological illnesses, which obviously excludes those with ME.

Will the Enquiry Team be approcahing the Kent Clinics as providers, and if so, is there not a discrepancy betweent the admission criteria of the clinics and the definition of ME under G93.3?”

North London

“… Re. the APPG on ME Inquiry into NHS Services, will you be asking the CNCC at Barts London (info. below) for evidence?

Please note (1) the patients’ leaflet is entitled ‘The Chronic Fatigue Service’ (2) the Referral Criteria says, ‘A primary complaint of unexplained fatigue’ (3) the unit offers GET and CBT.

Is this consistent with the illness described by WHO ICD G93.3 (which the APPG recognises) and Canadian Criteria?

I don’t get good reports on the clinic from ME patients.

If you were to accept evidence from this CNCC, would it not render the Inquiry defective…”

Yorks

“…As leader of the NHS Services Inquiry, what consideration has been given to the large number of research papers from 24 countries all showing physical anomalies in ME patients?

If the Government is so sure ‘present treatment’ is correct and adequate why do they find it essential to hold secret files of information re. ME on UK Government archives not to be available until 2023.

A reply would be gratefully appreciated…”

Surrey

“… The APPG on ME recognises the WHO ICD G93.3 Classification of ME; that is, ME is a neurological illness.

Can you explain to me, therefore, why it is taking the lead in investigating services which appear not to be about G93.3.

One example that comes to mind is the clinics in Kent. Under Section 5.4 of the admittance criteria, do they not exclude people with neurological illness?

If your inquiry was to approach the Kent Clinics as service providers, would it not render the project flawed, if not bogus?”

Worcs + Essex

“… We feel it important to bring to your attention the statement below. We would also like you to note the events that took place which led to the statement being drawn up, and the subsequent support it received from approximately five hundred members of the ME community, despite the limited time scale available. Although almost two years has now passed the same concerns mentioned within the statement are still very evident: It is clear to us from the feedback we receive, that many members of the ME community remain unhappy at the lack of decent critical appraisal from within Westminster regarding the setting up and continuation of the controversial NHS CFS/ME clinics; and also there is a belief that any Inquiry undertaken in the present climate will further endorse the psychosocial approach currently favoured as best practice…”

A Need of Accountability and a Firm Resolution

Following the events of the APPG meeting of July 12th, and the official minutes that followed, it has become clear that there is a high amount of dissatisfaction with or objection to the approaches of the majority of the NHS ‘CFS/ME’ clinics amongst the ME/CFS community, and that this fact was not properly recognised at the APPG meeting for a number of reasons. Ian and I feel that if the objections people have to these clinics are prevented from being aired and formally acknowledged, the current situation, by which the only ‘treatments’ being offered by the clinics are those psycho-social in nature, with serious physiological impairments being trivialised and/or ignored, is likely to become more and more entrenched as ‘best practice’, with disastrous results for the community on an individual and collective basis. With this in mind, it is proposed that a formal statement is delivered to the APPG, (both as written communication to the chair, and as an oral statement read out at the next APPG meeting under ‘Any Other Business) to register objections to this state of affairs. We feel it vital that people who share the same concerns should be given an opportunity to become co-signatories to the statement if they wish.

The statement will be as follows:

STATEMENT TO THE APPG

“We are a group of individual people suffering from or closely connected to someone suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome; an illness classified as neurological by the World Health Organisations ICD-10 under code G93.3.

We advise the APPG today of the following:

From the evidence available, it has become apparent that the majority of NHS ‘CFS/ME’ clinics do not adopt a suitably biomedical approach towards M.E. sufferers. Instead, these clinics inappropriately focus on a Cognitive Behavioural Therapy approach, some combined with Graded Exercise Therapy approaches, neither of which has been shown to be effective treatments for M.E. sufferers, and for which there is evidence of potential risk to patients from both treatments.

We advise you that, by not focusing on a biomedical approach to diagnosis and treatment/support, and by focusing on controversial psycho-social treatments, such clinics are causing M.E. sufferers to be put at risk, both physically and psychologically. We therefore feel the approaches of these clinics are inappropriate for M.E patients.

In addition we remind the APPG of its duty to safeguard the interest of ME sufferers, and ask that it immediately clarifies its ambiguous position of supporting the setting up and continuation of the CFS/ME clinics – especially as that support is also being given on the extremely vague pretext that they are ‘a base to build from’, despite all evidence to the contrary. We also remind the APPG that their remit is to support, only the WHO code G93.3 of ME/CFS, and therefore believe an unequivocal position of insistence on only a biomedical approach should have been taken from the outset.

We trust that the APPG will now acknowledge that there are, within the ME/CFS community, serious concerns about and objections to the approaches of the majority of the NHS ‘CFS/ME’ clinics, and have this formally entered in the minutes….

Latest on APPG on ME inquiry into NHS services

Update: Jane Colby, The Young ME Sufferers Trust, advises that the Producer of the BBC “The Politics Show” has informed her that the broadcast has been rescheduled for May 10th.  Part of the APPG on ME meeting held on 1 April is expected to be featured in this broadcast.  I will post more details nearer the time.

Latest on APPG on ME inquiry into NHS services

It’s proving difficult obtaining information around the non appearance of the dedicated website for the APPG on ME inquiry into NHS services for people with ME and also on the availability of minutes for the meeting held on 1 April – a meeting largely given over to discussion of the inquiry.

This is the most recent information I have:

Inquiry website:

At the meeting on 1 April, Dr Des Turner, Chair of the APPG on ME, is reported as having said that the website for the Inquiry would be launched later that week.

The 3 April Press Release had stated:

“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009”.

It was intended that the inquiry website would be one method via which comments around patient surveys and service provider questionnaires could be submitted to the inquiry panel.  According to the draft Timetable circulated at the meeting on 1 April, the deadline for “people with ME to submit questions to Dr Turner via website or in writing” was also given as 5 May – next Tuesday.

Four weeks down the line, schedules are already starting to slip and no website has been launched.  Some members of the ME community may have been waiting for the website to appear in order to submit their suggestions.

I contacted the Office of Dr Ian Gibson (Secretary to the APPG on ME and APPG on ME Inquiry Panel Member) on Tuesday morning with concerns about the non materialisation of the website but have received no response.

I have been told by Action for M.E. that the organisation does not have anything to do with the APPG Inquiry other than that it is related to ME and it was suggested I chase Dr Turner.

Dr Turner issued the following on Tuesday afternoon:

That the inquiry website is currently being built but that for the time being, the Terms of Reference have been placed temporarily on Dr Turner’s parliamentary website at: http://iwc2.labouronline.org/165220/me-nhs-enquiry

That once the “APPG ME” website has been built, the information on the parliamentary website will be placed on the new website along with the minutes of the previous meeting.

That currently, the deadline for written evidence is the 9th of June.

——————–

Note that the draft Timeline circulated at the APPG on ME on 1 April has not been published on Dr Turner’s website nor on Action for M.E. or the MEA’s websites and is not freely available online. 

Minutes of previous meeting:

At the meeting of the APPG on 1 April, a stenographer was present recording the proceedings. This is not the usual practice at APPG meetings.

Dr Turner is reported as having said that the minutes of APPG meetings were getting too long and that a transcript of this meeting would be available soon.

As already reported, here, Tony Britton had stood down from secretariat duties. I haven’t been able to establish whether, on this occasion, Heather Walker was present and also taking minutes in addition to the stenographer’s presence.

Enquiries have been made of Action for M.E. and of the Office of Dr Gibson (Secretary to the APPG on ME) as to the reason for the stenographer’s presence and to what purpose this transcript was to be put, and when and where it would be made available.

No response has been received from Dr Gibson.

In response to a request for a clarification, Action for M.E. tells me that their understanding is that the APPG was recorded and that the company who made the recording will be using it to provide a full transcript which will be made available via the Action for M.E. and ME Association websites.

Due to pressure of work, Action for M.E. says that it has not chased the company for the transcript.

According to Action for M.E., the intention is that transcripts will be made available for future APPGs – “presumably with a faster turnaround time – but will be funded by Action for M.E. and the ME Association and so will be subject to the usual funding pressures”.

——————-

Since this is a departure from the usual proceedings, the costs of which appear to be being met by the APPG secretariat, it would have been appropriate for Dr Turner to have briefly explained the reason(s) behind these changes.

What still isn’t clear, is whether in future the secretariat will still be minute taking during these meetings (or who will be undertaking this task) or whether the minutes will be prepared from these transcripts by Action for M.E.’s Policy Manager, once this new post is taken up.

One of the tasks written into the Job Spec is:

“7. Provide the Secretariat for the All Party Parliamentary Group (APPG) at Westminster, liaising with the office of the Chair of the APPG and others to organise meetings, prepare minutes and agenda and ensure timely posting of information on our website, facilitate actioning of decisions eg. by drafting letters, maintain APPG files.”

If the minutes were going to be largely extracted from transcripts, unless someone is also minute taking during the course of the meeting, I can foresee problems around the identification of speakers, since those making contributions at meetings do not always announce their names before speaking. These are informal meetings, often up to two hours long, with contributions from the floor as well as from committee members, parliamentarians and invited speakers.

Also, it’s not clear whether the production of the minutes for the last meeting is dependent upon the receipt of an externally produced transcript or whether minutes were also being taken during that meeting by Heather Walker; that is, are we still waiting on Action for M.E. to write up the minutes and have them approved by the Chair, or are we waiting on the provision of a transcript before the minutes can be extracted from that?

This was an important meeting, devoted primarily to discussion around the APPG Inquiry. But four weeks down the line, we still have no Inquiry website, no minutes, no transcript and no official explanation for this change in procedure which is said to be being facilitated through patient organisation funding.

A statement of clarification from the ME Association would be welcomed.

Suzy Chapman

30 April 2009