Report of Meeting of the All Party Parliamentary Group on ME by John Sayer

Shortlink: http://wp.me/p5foE-2wI

Update: A second report, in the form of a YouTube video, has also been published:

Dr Charles Shepherd’s unofficial summary of the 2 December APPG on ME meeting, published on behalf of the ME Association on 4 December, can be read here:

Summary of meeting of APPG on ME 2 December 2009: http://wp.me/p5foE-2sj

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Video Report on the UK Parliament All Party Group, APPG, on ME meeting of the 2nd of December

The APPG on ME met on the second of December this year to conclude the Inquiry the APPG has been conducting into publicly funded UK NHS health services for people with ME. APPGs are low level parliamentary committees made up of members of the elected House of Commons and the unelected second or upper tier of Parliament.

However, APPGs are not part of the structure of the UK Government and neither are they part of the official parliamentary committee structure for the scrutiny of government legislation or government departments like the Health Select Committee which scrutinises the Secretary of State for Health and their junior ministerial colleges in order to have parliamentary oversight of the Department of Health.

The main purpose of the APPG on ME’s Inquiry was to interest the Health Select Committee in setting up a similar and more powerful and well resourced Inquiry into NHS services for people with ME. This appears to be a very unlikely outcome given the way the APPG’s Inquiry was conducted and the way in which the Inquiry was concluded.

The meeting of the APPG held on 2/12/09 has proved to be a particularly controversial one and there have been a number of rumours running around the Internet about what took place. The first of a series of three videos gives a factual account of what took place at this meeting with comment and analysis. The remaining videos set out the background to the Inquiry from its inception through to the way in which the Inquiry was carried out.

I would therefore recommend that anyone who has seen the various accounts of the proceedings of the 2nd of December meeting on the Internet might like to watch these videos in order to place the events of the 2nd of December meeting in wider context of the APPG Inquiry as a whole, and then judge matters accordingly.

The report on the meeting of the 2nd of December APPG meeting can be viewed on the You Tube Channel action4change4me at :-

http://www.youtube.com/watch?v=YyFp_sTNj08

The background to the APPG Inquiry can be found from a previous video report of the 1st of April 2009 APPG meeting which deals with the setting up and launching of the Inquiry which can be viewed through the You Tube Channel action4change4me at :-

http://www.youtube.com/watch?v=ndqP-pSrj6I

There is another video report on the APPG on ME meeting of the 8th of October 2008 at which the APPG first decides to initiate the Inquiry, which can be viewed on the You Tube Channel GBC One here :-

http://www.youtube.com/watch?v=vPPClZDko8c

Ciaran Farrell

15 December 2009

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Meeting of the All Party Parliamentary Group on M.E.
12 December 2009

Report by John Sayer (Chair M.E. Support-Norfolk)

This was the first APPGME meeting I’d ever been able to attend (thanks to Dan, of M.E. Support-Norfolk, driving us down to London) and I’ve now seen for myself how the APPGME operates.

I was not impressed.

Worst of all was the appallingly unprofessional and unhelpful behaviour of the Chairman, Des Turner MP** and the Secretary, the Countess of Mar, right at the start of the meeting: Paul Davis (RiME) had tried to make a point to Turner as he started his opening remarks, and instead of the latter asking him to wait till he’d finished so he could take comments and/or questions (which would be the professional, polite and normal thing for someone chairing a meeting to do), he shouted at Davis for interrupting – like an angry teacher in a classroom – and continued remonstrating, subsequently also turning on attendee Ciaran Farrell, when he politely tried to calm the situation.

There must have been some background history of tension here, since there was no justification for Turner’s over-the-top outburst, and in the middle of his continuing rant Mar suddenly demanded that Davis and Farrell be ejected, otherwise she herself would leave. But without waiting for any response, and with attendees looking stunned and/or bemused, she grabbed her things, said she was leaving anyway, and promptly walked out.

Turner continued with his diatribe, and with belligerent looks and gestures, widened the target of his rebukes to apparently include the whole row of us who were seated together, at one point jabbing a finger in our direction and threatening to have anyone who interrupted him escorted out of the building by the police!

It was an apparent case of Turner, having lost his temper, further getting carried away with his emotions, because he then threatened to leave the meeting as well, actually getting to his feet and gathering up his papers. (Other attendees seated opposite us implored him to stay, which he did.)

This entire episode was completely ridiculous, and I suspect it was a case of Turner and Mar having anticipated trouble for some reason and behaving accordingly, but with no actual cause to do so. It was farcical.

As for the rest of the meeting, we ‘peasants’ were generally treated with what I can only describe as disdain. I would have been open-minded about anyone else’s account if I hadn’t experienced it for myself. It was a disgrace, in my view, and as far as I’m concerned we can do without ‘champions’ like these. What the motivation is for being involved, I don’t know, but I suspect it might have something to do with seeking to maintain control of ‘the movement’ through whatever channels available, the APPGME being just one of them.

My suspicions that this episode was artificially engineered were given strength by the subsequent address by Mike O’Brien MP**, Minister of State for Health Services, who – describing M.E. as “a set of conditions” (!) – appeared to labour the point that one of the obstacles to progress was the lack of unity and agreement amongst patient groups. (Where have we heard that one before?) How coincidental and convenient that the meeting began so ‘controversially’ and demonstrated what a bunch of ungrateful, bolshy irritants we M.E. patients are!

The overwhelming impression I got from this meeting (and not in isolation, as I’ve been following accounts of previous APPGMEs) is that the whole enterprise is becoming a sham. Having dragged myself down to London (at a cost that doesn’t need explaining here), I was well and truly hacked off at the Secretary walking out before the meeting had even got going, being treated like a pariah by a Chairman threatening to end the meeting and having chronically ill patients removed by the police, and being patronised by a Minister whose address was the epitome of political spin. O’Brien seemed to believe that having M.E. meant some days feeling poorly and some days feeling well – well enough to have a part-time job, in fact. So we know where he’s coming from: apparently the same place as Yvette Cooper MP** (guest speaker at the previous APPGME meeting), Secretary of State for Work and Pensions, who ‘had M.E’ some years ago but is now ‘fully recovered’…

In the meantime, Dr Charles Shepherd of the Myalgic Encephalopathy Association (MEA), has put his own account of the meeting on the MEA web site here

[extract]:

“Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

“On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.”

I’m afraid to say that this version of events at the start of the meeting is so inaccurate as to be justifiably called false. It is not just a distortion of the facts, it is blatantly wrong and I’m now ready to believe that this shameful episode really was deliberately engineered, in order to cast certain individuals – or ‘the M.E. community’ in general – in as bad a light as possible, presumably for the benefit of the Minister of State for Health Services and/or the TV production crew apparently, according to Shepherd’s notes, in attendance.

The “audience” as Shepherd calls us here, did not behave “in an aggressive and unpleasant manner”. Yes, technically speaking and in line with protocol, Davis should perhaps have waited for Turner to finish speaking before seeking to make a point to the Chair, but this was hardly the Crime of the Century and was certainly not a “very aggressive interruption”, as Shepherd would have it.

Neither did Turner make “several polite requests”; he was rude and abusive, to the point of verbal assault. That’s the simple truth. He behaved like an angry, out of control teacher trying to silence a pupil. It was a disgrace and an embarrassment and completely uncalled for. The ‘continued interruptions’ Shepherd refers to were actually contributions from those trying to calm Turner down – including, as I recall, Sir Peter Spencer, CEO of Action for ME!

It is not correct to say, “As a result [of the 'contuinued interruptions'], the Countess of Mar terminated her involvement with the meeting”. She delivered an ultimatum and then left before anyone could even consider it. There was no need for “those involved” to “calm down”, because people were calm – so calmly spoken in contrast to Turner’s agitated outpourings, in fact, that it was a strain to hear what they were trying to say.

As if to reinforce O’Brien’s assertion that it is partly the fault of ‘the M.E community’ that progress is not being made, Shepherd writes, “…it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters.”

No mention here of the APPGME Chairman “behaving in an aggressive and unpleasant manner” (which he did). No, let’s blame M.E. sufferers themselves for the lack of progress. This excuse just won’t wash any more, and in my own opinion, anyone – MP or otherwise – who is reluctant to get involved in our cause because of the justifiable frustration generally of M.E. patients who have had to suffer denigration, neglect and abuse for decade on decade, is quite simply of no use to us in the first place and we could well do without them.

(It is a ruse, in my view, to attempt to lay some of the blame for the lack of progress in our cause at the feet of patients attending these APPGME meetings and to thereby prejudice the understanding of those not privy to the facts. I have now reached the point, after 17 years, where I seriously believe that too many of our ’supporters’ are not there to help us at all, but to make sure we don’t actually get any help.)

And if they can’t cope with the issues surrounding ill and vulnerable people, how do MPs manage to deal with their constituents, and voters in general? (With the compensation of a life sweetened by the payment of their moat repairs, damp-proofing, fancy dress wigs and porn movies, perhaps?)

This meeting “got off to an extremely regrettable start” , alright – but not because of the M.E. patients present; it was thanks to the Chairman’s and Secretary’s inability to control themselves. But there’s no need to take my (or anyone else’s) word for what happened: the meeting was officially audio-recorded, and the transcript should eventually be made available for all to see.

Little wonder Shepherd refers in his account to “the audience” at this meeting. As far as I could make out, we were an audience, alright – watching a contrived performance.

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**Footnote

(From the Daily Telegraph supplement “The Complete Expenses Files”; italicised comments are my own):

Des Turner (salary £64,766) Des Turner is a former teacher [aha!] with a PhD in biochemistry. He claimed mortgage interest payments of up to £450 per month on a flat in London and also claimed up to £400 each month on food… [Note - the MPs' expenses allowance for food alone is equivalent to Incapacity Benefit payments for those unable to work!]

Mike O’Brien (salary £104,050) Claimed £825 for a Sony television in 2006-7, breaching £750 limit, and repaid money following year so he could move it to other home. Claimed £30 for a DVD player in March 2008, plus £250 a month mortgage interest on his designated second home in Nuneaton and £200 a month for food and more for other bills.

Yvette Cooper (salary £141,866) …At one point, Miss Cooper, the new Work and Pensions Secretary, and Mr Balls [husband], the Children’s Secretary, had their expenses docked, having each submitted two monthly claims for mortgage interest for nearly twice the cost of their actual payments. The couple denied flipping after switching their second home designation three times, saying that they had not sought to maximise their expenses and that, unlike some colleagues, they had paid capital gains tax on selling their home…In total, the couple claimed £24,400 between them on their second home allowance last year…

[And it's the sick and disabled these people are supposed to help who are branded "benefits scroungers"?]

Register of All-Party Groups and Guide to the Rules on All-Party Groups

Shortlink: http://wp.me/p5foE-2sb

The Register of All-Party Groups [As at 20 October 2009] is here:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

There are also links at the top of the Register for:

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
Complaints about All-Party Groups

The APPG on ME’s current office holders and twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed here:

Register:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi420.htm

Note that the Group details have not been updated since the AGM in July 2009.

The Office of Secretary to the APPG on ME became vacant following the standing down of Dr Ian Gibson from his seat for Norwich North, on 8 June 2009.

The Countess of Mar was elected to the Office of Secretary at the group’s AGM, on 8 July 2009.

Note also that the Chair, Dr Des Turner, MP, announced at the AGM that it was not his intention to stand at the next general election and that therefore a new Chair would need to be found at that point.

Guide to the Rules on All-Party Groups:

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

Page 17

General elections

If your group is NOT on the Approved List: this section applies to your group.

5. Once a general election has been publicly announced we write to groups with information about what action they need to take after the election. In essence, unless the group reregisters within two calendar months from the date when parliament first meets after a general election, it is removed from the Groups’ Register, and from the Approved List (if it is on the latter).8 The purpose of this is to allow groups some continuity from parliament to parliament and to give them time to appoint new officers, enrol new members etc.

6. In order to re-register after a general election a group has to hold an inaugural election of officers (which counts as the group’s first AGM of the new parliament) then complete and return the ‘Application Forms for Cross-Party Groups’, within the 2 month period.

[8] The only exceptions are registered groups funded by Her Majesty’s Government (currently only the British- American Parliamentary Group); such group are not required to re-register.

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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/memi417.htm

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).”

As joint secretariat, Action for M.E. and the ME Association undertake the 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.

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 listed as attendees in the minutes of meetings and 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.

APPG on ME meeting: Wednesday 2 December 09

Inquiry into NHS Service Provision for ME/CFS 

(Last night’s scanned PDF has now been replaced by the official PDF from the secretariat)

Click link for PDF:  Official PDF of APPG Interim Report v1

Update @ 7.00pm

I hope to have a copy of the “Interim Report” on this site in some format, tomorrow or later today.

Update @ 3.15pm

I am advised direct from the meeting that an interim report has been handed out because the Final Report is not ready  – why am I not surprised?

 

Shortlink: http://wp.me/p5foE-2rx

If you are planning to attend today’s meeting in House of Commons Committee Room 14 between 3.15-4.45pm please allow time for passing through security and locating the meeting room.

A bunch of friendly people will be meeting up beforehand for coffee and a chat from

2pm, Jubilee Cafe, just off Westminster Hall

 

I am anticipating live updates from the meeting. 

Information on the launch and publication arrangements for the APPG on ME’s report resulting out of its unofficial inquiry into NHS service provision for people with ME is expected to be announced this afternoon.  I will post information at the top of this posting and a copy of the report and any press notices as soon as these materialise.

Yesterday, the APPG on ME issued four documents:

Minutes of October 09 APPG on ME meeting

Verbatim transcript of October 09 meeting

APPG on ME Legacy Paper

APPG update on Welfare Reform Bill

 

Jump to this post to download these all four documents in Word format:  http://wp.me/p5foE-2r9

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For RiME’s “MPs Referendum on ME Research” go here:  http://www.rime.me.uk/MPs_Referendum.htm

For the APPG on ME’s Legacy Paper go here:  http://wp.me/p5foE-2r9

For those interested in scrutinising or commenting on Action for M.E. and AYME’s draft “Election Manifesto for M.E.” go here:

http://www.afme.org.uk/news.asp?newsid=671

Election manifesto for M.E.
09 January 2010

Election manifesto for M.E.

As the General Election approaches, Action for M.E. and the Association of Young People with M.E. (AYME) – in conjunction with The Princess Royal Trust for Carers – have produced a draft manifesto to draw the attention of the political parties to the issues which affect people with M.E.

http://www.afme.org.uk/res/img/resources/Election%20manifesto%20draft%2028.10.09%20with%20survey%20link.pdf

This has been based on ideas submitted through an initial online consultation with people with M.E. but we now seek views on the draft manifesto as a whole. If you think we’ve got it wrong or you have other ideas, please let us know your views by completing our short survey before 8 January.

https://www.surveymonkey.com/s.aspx?sm=s6Z_2bDPZYrMM0toczWL2xew_3d_3d

Action for M.E. and AYME will invite parliamentarians of all key parties to sign up to the policies identified in the final manifesto and will proactively approach them to request their support.

RiME: Summary of APPG Meeting 21.10.09

Shortlink: http://wp.me/p5foE-2rr

Permission to Repost

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

Dec. 1 2009

To Tristana Rodriguez AfME,

Today, the day before the APPG meeting, you have released (1) the minutes of the last meeting (2) a draft of the APPG Legacy Document.

It would seem you expect ME patients to read and digest all of this, before tomorrow’s meeting?

This is totally unacceptable and the matter needs to be discussed at tomorrow’s meeting.

It leads ME patients to ask, ‘Do the people running the APPG on ME understand what the neourological illness Myalgic Encephalomyelitis is?’

Yours Sincerely,

Paul Davis RiME

cc interested ME parties

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Permission to Repost

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

Summary of APPG Meeting 21/10/09

1.31 pm Meeting starts. Dr. Des Turner MP Chair says that the APPG will have to be reformed after the General Election in 2010. A legacy paper is being prepared – comments on the second draft of the paper must be sent to the Secretariat by November 20.

Dr. Turner says the date of next APPG meeting will be December 2nd. On the agenda will be the services inquiry report with the possible attendance of a Health Minister. He says that only AfME and the MEA will see the draft report.

Paul Davis RiME says that RiME has received over 50 copies of evidence submitted to Inquiry. Having read the large majority, with the exception of one, they are all negative. ME patients say the basis on which they were set up – CMO Report is bogus and they don’t want them. Period. Matters of structure, finance, post-code lottery are irrelevant.

Christine Harrison BRAME said she wanted to inject a note of optimism – I didn’t catch what she said after that.

Ciaran Farrell: re. consultation on Inquiry Report: the report needs to be circulated ahead of time so there can be a proper, informed discussion at next meeting.

Paul Davis said re. Oral Presentations that the Chair had allowed matters outside the Terms of Reference to be discussed.

Dr. Turner said something about being flexible.

Paul Davis specifically mentioned the Lightning Process: Did the Chair not only allow someone to talk about it but comment positively on it himself? To our knowledge LP isn’t being practiced in any of the clinics set up following the CMO Report.

Ciaran Farrell supported Paul Davis on the matter of LP and asked Dr. Turner if he is prepared to make a statement about how and why he was being flexible. Dr. Turner declined to do so.

Dr. Turner said we need to look at all treatments.

Michelle Goldberg ME patient talked about various forms of abuse; “Institutional domestic violence”.

Janice Kent Remember talked about misdiagnosis and says that other illnesses are treated better.

Dr. Shepherd MEA bemoaned lack of medical help and expertise.

Dr. Turner mentions XMRV Virus and ongoing research in America.

Paul Davis thanked the Chair for mentioning XMRV but pointed out that the British Government still isn’t funding any biomedical research.

Colin Barton Sussex Group said that some research might be carried out at Barts.

Annette Barclay raised concerns and said who would want Barts doing such research? Several put their hands up in support of Annette.

2.09pm – Yvette Cooper Secretary of State for DWP enters, accompanied by Dr. James Bolton, Deputy Chief Medical Adviser to DWP.

Ms. Cooper talked about her own experience, saying she had been ill with ME for two years (1993-5) and off work for a year. She outlined the changes to the care, welfare and benefits system – especially the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of Work Capability Assessment (WCA) in deciding eligibility for ESA. She said she understood concerns re. the fluctuating nature of ME and the need for a flexible approach re. return to work. She believed the ESA and WCA took those issues into account. Re. DLA: she said that DLA for people of working age was not under review.

Dr. Turner raised the issue of problems with tribunals. Examples of unsatisfatory procedures were mentioned by several attendees. Ms Cooper said tribunals were classed as ‘independent’ and their administration came under the Ministry of Justice.

Dr. Shepherd asked Dr. Bolton if he would meet with ME charity representatives to discuss concerns in more detail. He said yes. Shepherd says in his notes that this will be followed up via Forward-ME.

2.55pm Ms. Cooper left

Jill Cooper West Midlands Group Consortium read out a further statement to do with issues about patient representation, transparency, and the education and training program of the Co-ordinating Clinical and Research Network and Collaborative (CCRNC). She said that WMMEG had received a copy of the CCRNC Constitution from Dr. Esther Crawley. The document excludes anyone who does not support the NICE Guidelines. This practice is at variance with the Health Department’s position on patient representation which is to ‘provide a free exchange of ideas, questions, comments or criticisms… ‘

Dr. Shepherd confirmed that charities who do not support the NICE guidelines are excluded from the CCRNC.

Lady Mar and Jill Cooper disagree over CCRNC.

Ciaran Farrell said there is a great deal of concern about the NICE guidelines and that it was unfair and unreasonable to exclude people from the CCRNC.

Colin Barton objects to criticism of clinics saying many are being treated at them.

Annette Barclay and Jill Cooper disagree with him.

3.10 pm – Meeting Ends.

Disclaimer: the above is based on my and others’ scribbled notes; cannot guarantee 100% accuracy.

Overview

RiME got something in last week re. Legacy Document.

RiME’s submission said the performance of the APPG 1999-2009 had been disappointing, and concluded:

We deem the best criteria for adjudging the APPG 1999-2009 is to simply ask the question, ‘are ME patients better off now?’ Answer: No. Indeed, many would say they are worse off. The text above has focused upon concerns re. services and research. But are there not still problems in other areas such as welfare and child protection?

If those running the APPG were to counter by saying, we are essentially about awareness, not lobbying – then two questions come to mind (1) is awareness enough? (2) has the APPG been portraying an accurate picture eg has it painted too rosy a picture re. the clinics?

RiME recommends:

1. A fresh start with five new officers following 2010 General Election…

2. An independent Secretariat.

3. Detailed attention to matters of nomenclature and classification.

4. The focus to be on biomedical research…

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

APPG on ME: Minutes, Transcript, Legacy Paper, Updates to Welfare Reform Bill

Shortlink: http://wp.me/p5foE-2r9

If you are planning to attend the meeting on Wednesday 2 December a bunch of friendly people will be meeting up before the meeting for coffee and a chat.

2pm, Jubilee Cafe, just off Westminster Hall

A number of APPG on ME documents have been circulated, today.

 

Minutes of the APPG on ME annual general meeting, held on 21 October 2009:

Word doc:   APPROVED MINUTES APPG on ME 21 10 2009(2)

 

Verbatim transcript:

Word doc:  APPROVED Transcript APPG 21 October 2009

 

APPG on ME Legacy Paper: 

(NB: the paper uploaded was an incorrect version supplied by the APPG on ME secretariat; it has been replaced with the correct paper below.)

Word doc: DRAFT APPG legacy paper V5 27 11 2009 (2)

 

Updates to Welfare Reform Bill:

Word doc: All Party Parliamentary Group on ME Update on Welfare Reform Bill 23 11 2009

(The Welfare Reform Bill will be discussed at the next APPG, tomorrow, Committee Room 14, House of Commons, 3.15 – 4.45pm.)

 

Please be advised that the next meeting of the APPG for M.E. will now be held in House of Commons committee room 14, as opposed to room 15.

Agenda for the next APPG for M.E., sent on behalf of Des Turner MP, chair of the APPG.

AGENDA

Meeting to be held 3.15-4.45pm, Wednesday 2 December 2009,

Committee Room 15, House of Commons

1. Welcome by the Chairman

2. APPG Report on the Inquiry into NHS Services

3. Speaker: Mike O’Brien MP, Minister of State for Health Services

4. Minutes of the last meeting

5. Matters arising

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

- New research: murine leukaemia virus-related virus (XMRV)

- Accessibility of venues for future meetings

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

—————————-

UK Parliament All Party Group on ME meeting on Wednesday the 2nd of December

(Previously published on 29 November on Co-Cure mailing list)

The ME community in England are approaching what could turn out to be a critical All Party Group APPG meeting and possibly the last or the penultimate meeting of the APPG before the General Election. When the UK Parliament is dissolved for the General Election all APPGs are dissolved and must be re created in the new Parliament if they are going to continue to exist. A number of the parliamentarians who are central to the APPG including its Chair Dr. Des Turner will not be standing again or are unlikely to be re-elected.

The APPG is concluding its inquiry in NHS services for people with ME and this is one of the main foci of the meeting to be held on Wednesday the 2nd of December. The other main focus of the meeting will be  that the Health Minister Mr. Mike O’ Brien will be the guest speaker and he has been invited to discuss the findings of the inquiry.

The object of the inquiry is to try to get the UK Parliament’s Health Select Committee to take up the inquiry’s recommendations and conduct a further inquiry along similar lines. Therefore the  implications of the APPG inquiry may have far reaching consequences because the Health Select Committee is far more powerful than the APPG and if the APPG is successful in getting their inquiry on the Select Committee’s work programme the APPG’s inquiry initiative will live on after the General Election.

The subject of the inquiry has been the subject of significant discussion at APPG meetings as the way in which the inquiry has been conducted has been controversial. The situation about the minutes / transcript of the previous APPG meeting of the 21st of October is unsatisfactory. I have made enquires of Action for ME who provide the Secretariat for the APPG about these documents and it would appear that AfME have not yet received the verbatim transcript from the Hansard stenographic service from which AfME’s Heather Walker writes up the minutes and the condensed transcript. I think the verbatim transcript may very well be on a 60 day service and this is why it  is not ready.

The latest minutes that are available on the website that has been set up for the APPG are those of the 1st of April as can be seen at :-

http://www.appgme.org.uk

The minutes and transcript of the 8th of July meeting have not been placed on this website and can only be found I think on AfME’s and the ME Association’s websites. Therefore it is clear from this and from the lack of more modern material on the APPG’s Inquiry that this website is not being kept up to date.

The APPG Inquiry Panel held two oral Evidence Sessions on the 9th and the 16th of July and there are no official minutes, write ups or transcripts of these two meetings despite the fact that the APPG Chair Dr. Des Turner made a public commitment to publish the transcripts of the Oral Evidence Sessions at the start of the first Oral Evidence Session. There may have been technical difficulties involved which might have prevented a written transcript being made from the audio recordings of these meetings, but if this were the case, there has been no statement from the APPG Secretariat or Chair that they have been unable to follow through on the Chair’s public commitment to publish these transcripts.

At the last APPG meeting on the 21st of October Dr. Turner decided that despite representations made  to him by Paul Davis of RiME and myself that the APPG Inquiry report ought to be made available ahead of the 2nd of December meeting to enable effective consultation on the report through a fully informed discussion at the meeting, he would not allow the report to be released to the public before the meeting. He considered that the report would loose impact if it came out in what he described in drips and drabs, but he conceded that a summary of the report, or a summary of the report’s recommendations might be made available on Tuesday evening, and that he would make copies of the full report available to the MEA and AfME on a confidential basis.

It was not clear what procedures/mechanisms would be used to disseminate the summary of the report on Tuesday the 1st of December or who would be involved in operating them. This therefore places a question mark over whether or not any form of summary of the inquiry’s report will indeed be made available prior to the APPG meeting on Wednesday the 2nd of December, and also if copies of the full report will be made available at the APPG meeting itself.

This places ME sufferers and carers who attend as members of the public at APPG meetings in a very difficult position as the matter of the inquiry report is listed on the APPG meeting agenda and we either will only have a summary of the report, or perhaps not even that with which to prepare for the meeting where it is expected that the report will be endorsed. Even if full copies of the report are available at the meeting I do not consider that it would be fair or reasonable to expect participants to have to read the report whilst those in the know who already have read their copies of the report discuss the report’s contents with a view to endorsing the report and its recommendations.

I therefore consider that the inquiry panel made up of the parliamentarians drawn from the core membership of the APPG has not made adequate information available for there to be proper public scrutiny of their work, and neither will there be an opportunity for proper or adequate consultation on the findings and recommendations of the APPG on ME’s inquiry into NHS services for people with ME.

I consider that the ME community ought to think through what the implications of simply going along with the endorsement of the inquiry report might be. The inquiry panel have trailed the fact that they have found a very mixed picture in terms of some areas of the country being served by CFS clinics that principally offer only limited diagnostics and psychologically based treatments which comprise CBT and GET. There is approximately 60% coverage of current service provision for adult services and only 15% national coverage for children.

Where a Primary Care trust, PCT does not have a CFS clinic in its catchment area a PCT can contract into a service provided through another PCT, but not all PCTs do this and what are the service issues involved in patients being passed over into to another health service area in order to attend a CFS
clinic?

What view will the inquiry take about the issues around CBT and GET, and will they recommend that these psychological treatments be made available to all ME sufferers in order to overcome the CFS clinic post code lottery, or will they take a more sophisticated approach?

What view will the inquiry report take towards the applicability of CBT and GET in general and at the CFS clinics in particular?

Where there are CFS clinics or adequate access to them further a field there are specialist services for ME patients, but are these services meeting need and what advantage do they offer, if any, over generalist services available at the local hospital or through the patient’s primary care or GP service?

One specific area of controversy that may come up within the inquiry report might be the issue of the Lightning Process, LP, which the inquiry panel took a considerable interest in despite the fact that it does not really fall within the terms of reference of the inquiry as LP is not a treatment offered by the NHS. At the APPG meeting of the 21st of October Dr. Turner was asked by Paul Davis and I to explain the inquiry’s interest in LP and he responded that LP was a potential treatment for ME on the NHS and that he as Chair of the inquiry panel was being flexible about the inclusion of LP within the bounds of the inquiry and also in the way in which the inquiry had invited a witness to the Second Oral Evidence Session to give evidence on LP which was very positive. Some of the other patient witnesses at that session did point out that there was another less positive side to LP, but the panel did not invite another witness to put the opposing view. The panel spent a considerable amount of time on LP with the effect that other areas of inquiry such as children’s services were allocated less time even though they quite clearly fell within the main remit of the inquiry’s terms of reference.

This rather begs the question of whether or not the inquiry panel simply meandered a bit off topic and off task by dwelling so long and delving comparatively deeply into LP, or does the inquiry panel intend to take a specific view about LP, and if so, will they be making any recommendations about LP in their report about LP being a potentially effective treatment that might be offered on the NHS?

Therefore I would suggest that it would be a good idea for the ME community and most particularly the PWME regular attendees at APPG meetings to discuss there matters before the meeting, and even to hold a brief pre-meeting prior to the APPG itself in order to arrive at some kind of general consensus about how the above and other issues might best be handled at the APPG meeting itself.

Ciaran Farrell

29 November 2009

Next APPG on ME meeting: Delay in production of the Minutes

Heather Walker, Communications Manager, Action for M.E. has advised me, this morning, that the minutes of the last meeting will be delayed.

Shortlink: http://wp.me/p5foE-2qt

Ms Walker writes @ 25 November

On behalf of the APPG on ME Secretariat, my apologies for the delay in the production of minutes of the last meeting.

We are still awaiting arrival of the verbatim transcript, kindly produced by a Hansard stenographer, on which the minutes are based.

As has been pointed out, the APPG has a policy that any comments on the APPG minutes and transcript be sent in to the APPG Secretariat one week before the meeting. The meeting scheduled for Wednesday the 2nd of December would therefore indicate a deadline for comments and amendments to be submitted by Wednesday the 25th of November

The delay means the usual procedure will have to be changed – what to will depend on when the transcript and minutes become available.

We will circulate them as soon as possible.

Meanwhile, the agenda for next week’s meeting is as follows:

1. Welcome by the Chairman
2. APPG Report on the Inquiry into NHS Services
3. Speaker: Mike O’Brien MP, Minister of State for Health Services
4. Minutes of the last meeting
5. Matters arising

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

- New research: murine leukaemia virus-related virus (XMRV)

- Accessibility of venues for future meetings

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

Heather Walker

Communications Manager
Action for M.E
Direct line: 0117 930 1323

Action for M.E. is the leading charity dedicated to improving the lives of people affected by M.E.
Action for M.E., Canningford House, 38 Victoria Street, Bristol BS1 6BY, 0117 927 9551
Registered charity number: 1036419. Registered in Scotland: SCO40452
www.afme.org.uk

APPG on ME: Next meeting 2 December 2009 progress report

1] APPG on ME: Next meeting 2 December 2009 progress report;

2] Agenda for next meeting of Countess of Mar’s caucus group Forward-ME;

3] Clarification regarding membership of the APPG on ME

Shortlink: http://wp.me/p5foE-2n3

Yesterday, 12 November, I contacted Action for M.E.’s Policy Officer for an ETA for the Minutes and transcript of the last meeting of the APPG on ME (21 October). I also enquired when the Agenda for the 2nd December meeting was anticipated to be issued.

Tristana Rodriguez, Action for M.E.’s Policy Officer, has advised that the transcript typist for the last APPG meeting had said that a full transcript could be expected within four weeks or so. A transcript has yet to be provided and this would be chased up by Ms Rodriguez, next week, as the transcript typist was currently away.

I was advised that since the Minutes would be produced using the transcript for reference, no timeframe could be given for the publication of the Minutes until the transcript has been provided to the secretariat.

As far as the Agenda for the meeting on 2 December goes, secretariat were in the process of finalising details with the invited speaker.  When this had been achieved, an Agenda would be circulated. When the Minutes and Agenda have been issued I will publish copies, here.

Before the October meeting, a group of members from the ME community met up for coffee.  If you are interested in attending the December meeting and would like to meet up with a few others before the meeting starts drop me an email via the Contact Form with “December APPG meeting” at the top and I can put you in touch.

Link Back

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

Foward-ME

Forward-ME is a caucus group to the APPG on ME, convened and chaired by the Countess of Mar. Lady Mar decided which patient organisations would be extended an invitation to participate in her group and which would not. Unlike the APPG on ME, Forward-ME meets behind closed doors and members of the public are not able to attend, even as observers. Lady Mar convened this caucus group out of a desire to find “common ground” amongst the main patient organisations and the group appears to have superseded the now dormant ME Alliance.

No-one consulted with Lady Mar’s constituency of interest – the ME community – over whether a group which meets between meetings of the APPG, behind closed doors, would be welcomed and if so, what the extent of its remit should be, on what basis it would be decided to whom membership would be offered and how the wider ME community would inform its agenda. Forward-ME includes the organisation “ReMEmber” which promotes publications by Professor Michael Sharpe on its website; members also include representatives from Action for M.E., the MEA, AYME, the Young ME Sufferers Trust, Invest in ME, BRAME  and ME Research UK.

The 25% ME Group had been members but has since withdrawn support for Forward-ME. Invest in ME has already published its concerns in a statement (below) and its continued membership of the group is tabled for discussion at the next meeting of Forward-ME. 

Status 23rd March 2009

http://www.investinme.org/Article-182%20CoM%20Cooperation%20Meeting%2001.htm

 

A website for Forward-ME is maintained here where Minutes of previous meetings can be read and I append a copy of the Agenda for the next meeting:

http://www.forward-me.org.uk/24th%20November%202009.htm

FORWARD-ME

AGENDA FOR MEETING TO BE HELD

ON TUESDAY 24 NOVEMBER 2009

IN THE TELEVISION INTERVIEW ROOM, HOUSE OF LORDS

FROM 1.30 PM TO 3.00 PM.

1. Apologies.

2. Dr James Bolton, Deputy Chief Medical Adviser to the DWP.

3. Question and answer session.

4. Minutes of the meeting held on 8 July 2009.

5. Matters arising.

          i) Lightning Process

          ii) APPG Inquiry

          iii) MRC Project

          iv) Invest in ME membership of Forward-ME

6. Welfare Reform Bill.

7. Current Research.

8. Correspondence.

9. Any Other Business.

10. Date of next meeting.

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

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