MEA: Summary of APPG on ME meeting 10 March 2010

ME Association: Summary of the All Party Parliamentary Group on ME (APPG on ME) meeting on 10 March 2010

Note: This is a personal summary prepared by Dr Charles Shepherd on behalf of the ME Association and not the official Minutes which will be published later.

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

MEA SUMMARY

This is a brief personal summary of the last meeting of the current APPG on ME before the general election takes place, almost certainly on 6th May.

The meeting was a friendly and harmonious occasion, which terminated in a vote of thanks to Dr Des Turner (who is retiring from parliament) and all the parliamentarians who have been involved with the current APPG.

After the election a new APPG on ME will have to be formed – provided there are sufficient parliamentarians willing to do so.

A more detailed account of this meeting will appear in the minutes and the transcript, which normally takes a few weeks to prepare, approve and publish.

VENUE

Committee Room 18 at the House of Commons.

The meeting lasted from approximately 1.30pm to 3pm.

ATTENDANCE

Parliamentarians

Dr Desmond Turner MP (Chair)
Countess of Mar

Parliamentary office representatives

Nick Osborne

Secretariat

Sir Peter Spencer (Action for ME)
Tristana Rodriguez (Action for ME)
Dr Charles Shepherd (MEA)

Organisations and individuals

Jane Colby – Tymes Trust
Jill Cooper – Warwickshire Network for ME
Christine Harrison – BRAME
Doris Jones – 25% Group
Bill Kent – reMember
Jill Pigott – Worcestershire ME Support Group
Mary Jane Willows – AYME

Ciaran Farrell
Michelle Goldberg
Augustine Ryan

Apologies to anyone whose name is missing from this list. I will include if you let me know.

AGENDA

There were two main items on the Agenda.

Firstly, a presentation from Vanessa Stanislas, CEO at the Disability Alliance, on issues surrounding disability poverty.

Secondly, publication of the final report which summarises the work and findings of the APPG Inquiry into NHS service provision for people with ME/CFS.

VANESSA STANISLAS: TACKLING DISABILITY POVERTY

VS started off by describing the work of the Disability Alliance. This is an organisation that brings together a wide variety of charities with whom they work collaboratively on issues relating to disability – state benefits and financial issues in particular.

A key part of their work at present is preparing for the general election and the need to highlight to all political parties the important issue of disability poverty.

To take this forward the DA has prepared a ‘Disability Manifesto’ titled Tackling Disability Poverty. Copies of this publication were circulated to all present and it is also available on the DA website at:

http://www.disabilityalliance.org/damanifesto.htm

VS went through some of the key facts and evidence about disability poverty that are referred to in the manifesto:

• Disabled people are twice as likely to live in poverty as other citizens
• 29% of disabled children live in poverty in the UK.
• A third of disabled adults of working age live in poverty.
• 50% of disabled adults of working age are not in paid work.
• 29% of pensioners in households with one or more disabled adults who were not in receipt of disability benefits lived in poverty.
• 80% of people with mental health problems and learning difficulties are not in employment.
• Half of all carers subsidise the cost of the disabled person they support because of inadequate disability benefits.
• And with the UK now experiencing a recession there is a real risk that the economic downturn will lead to a reduction in action to tackle poverty in those who are sick or disabled.

VS also referred to a number of very practical issues that disabled people have to face, all of which can have a significant effect on their income levels:

• Perverse and complex rules that govern eligibility to DWP benefits – people do not understand the benefit system.
• The resulting low take up of benefits that people may be entitled to.
• Employer discrimination.

A number of recommendations are being put forward by the DA to help reduce disability poverty with the aim of eliminating disability poverty by 2025. These include:

• Measuring disability poverty as a unique form of poverty.
• Excluding disability benefits from ‘income assessments’, or including the extra costs of living that disabled people experience.
• Measuring disability should be deconstructed by age group.

Following her presentation there were numerous questions and points. These included:

• Fuel poverty and the need to extend the extra heating allowance to sick and disabled people under pension age.

Des Turner said that the parliamentarians were pressing hard on this in relation to the discussions on Social Tariffs in the Energy Bill that is now going through parliament.

NEA link: http://www.nea.org.uk/charity-calls-for-energy-bill-to-address-injustice-of-poor-paying-more-for-fuel

• Problems relating to the differences between the medical model of disability (ie how illness disables people) and the social model of disability (ie how the world sees and deals with disabled people regarding the provision of services etc).

• Problems with ATOS – the agency that carries out medical examinations and assessments for DWP benefits.

http://www.atoshealthcare.com/index.php?option=com_content&task=blogsection&id=14&Itemid=288&Itemid=288 

• The Countess of Mar pointed out that an ESA review was taking place and this required representation from the ME/CFS charities
• Tremendous differences in the knowledge and attitude that is expressed about ME/CFS when cases are brought to tribunals. Des Turner stated that this was an important part of his workload. He supported these concerns about lack of knowledge regarding both the illness and the actual regulations.
• The political debate over targeting what money there is in the benefit pot at people most in need (ie means testing more benefits). Or do the problems this could cause mean that there should still be universal benefit provision – regardless of income and capital.
• Sick and disabled children.
• Social Fund – where grants have now been replaced by loans. This means that people are very reluctant to replace key items that break down.
• Is there enough evidence of discrimination and bad practice in the way the system works to force a judicial review?
• Disability poverty as it affects carers.

APPG REPORT ON THE INQUIRY INTO NHS SERVICES

The report is now finished. Copies were circulated to all present and a link to an electronic version has been placed on the MEA website.

Open APPG on ME Press Release: March 10 APPG Inquiry Press Release

Open Final Report:

APPG on ME Final Report Inquiry into NHS Service Provision for ME/CFS March 2010

Des Turner stated that the conclusions and recommendations are exactly the same as in the preliminary report that was circulated at the last meeting in December. The text of the final report expands on the justification for them.

Copies of the report, along with an appropriate accompanying letter, will now be circulated to:

Chief Medical Officer, Sir Liam Donaldson
DWP
Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs)
Medical Royal Colleges
Other professional bodies: Royal College of Nursing etc

Des Turner agreed that a list of PCTs who did and did not reply to the questionnaire should be made available on the APPG website. ( http://www.appgme.org.uk/inquiry/inquiry.html )

Des Turner circulated a letter he had sent to Mike O’Brien MP, Minister of State, Dept of Health, on the need for biomedical research, along with the minister’s reply.

The meeting thanked Nick Osborne for all the work he had done over the past year or so in collecting and analysing the evidence and drafting the various versions of the report.

A short discussion followed. Key points included:

Jill Pigott said training of NHS staff was vital and information about a range of ME/CFS conferences and meetings should be made available to NHS staff via the British Association for ME and CFS (BACME) and on their website.

Christine Harrison referred to the continuing problems in Norfolk in trying to re-establish a consultant led service following the retirement of Dr Terry Mitchell. She pointed out that yet another Working Group had been set up. The local patent representatives had a number of concerns about the report they have received.

Peter Spencer referred to the need to try and get the Select Committee on Health involved with the issue of NHS service provision.

Charles Shepherd pointed out that local political initiatives could help here and referred to the situation in Gloucestershire where the NHS Foundation Trust had just been heavily criticised by the county council’s health overview and scrutiny committee over lack of consultation on a proposal to cut 200 hospital beds in Cheltenham and Gloucester. As a result this proposal is now on hold. BBC link:

http://news.bbc.co.uk/1/hi/england/gloucestershire/8557590.stm

Jane Colby referred to children’s services and the need to take note of surveys of what children and young people want – as had been carried out in Essex.

Ciaran Farrell pointed out that is was very difficult for local people and local groups to make any impact on the decision making process at a local level because they often lacked the skills, knowledge and resources to do so.

Jill Pigott asked if there any good LMDTs that could be recommended to PCTs who may be interested in setting up an ME/CFS referral service.

Several people commented on the fact that the lack of direction from central government over local decisions on health issues was not helping people with ME/CFS get the services they need. The Dept of Health had to be more proactive, especially where local providers were not providing an NHS referral service.

The APPG has also issued a press release, which can be found on the MEA website. In it, Des Turner is quoted:

“Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS. We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients especially children and the most severely affected. We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients’ ability to undertake regular work.”

Press Release: March 10 APPG Inquiry Press Release

APPG LEGACY PAPER 

The final version of the APPG Legacy Paper 26.02.10 was presented and agreed. This is a document that will pass to the next APPG. The paper sets out actions and initiates that have been taken by the current APPG along with issues that remain to be addressed by the new APPG.

A few minor points were raised.

A copy of this document can be found on the MEA website.  (Here on ME agenda: APPG Legacy Paper 26.02.10 )

AOB:

STATEMENT FROM WEST MIDLANDS GROUP ME CONSORTIUM

With the time at just after 3pm, and ushers trying to clear the room for the next MPs meeting, there was no time for detailed discussion under AOB. Jill Piggott was allowed to present a written statement requesting that a representative from the CCRNC/BACME attends the next APPG meeting to discuss the nature of education and training for staff involved in providing NHS services. The MEA will place a copy of this statement on our website when we have one.

MEA WEBSITE:

http://www.meassociation.org.uk

Summary prepared by Dr Charles Shepherd, Hon Medical Adviser MEA

ENDS

RiME Notice: 15/03/10

RiME Notice: 15/03/10

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

RiME Campaigning for Research into Myalgic Encephalomyelitis  www.rime.me.uk 

RiME Notice

I wanted to let supporters know that I got Shingles 3-4 weeks ago. Unpleasant and I have to rest.

Frustrating… Much going on and much to do.

I had intended to attend the final meeting of the APPG on ME March 10 and make some points about the deeply flawed draft Report on the Inquiry into NHS Service Provision for ME/CFS (the one handed out at the previous meeting), notably:

1. What is this Inquiry really about? The description of ‘ME/CFS’ on Page 2 of the draft Report mentioned above is not about the neurological illness described by ICD 10 G93.3 or the Canadian Criteria.

2. That significant evidence submitted to the Inquiry (over 50 copies were sent to RiME) is not accurately reflected in the draft Report. Time and again ME parties say (A) the clinics set up following the CMO Report are not about the neurological illness Myalgic Encephalomyelitis (B) why is the APPG on ME (it recognises ICD G93.3 in its Code of Conduct) investigating these clinics?

That it is not reinforces the view that the APPG on ME is not for ME patients but about them; and that it is primarily about promoting Government policy (not about G93.3 ME).

I haven’t yet been able to read the Report handed out on March 10 but if it is anything like the last it is totally unacceptable and will need challenging.

If you’re not happy with it, let the politicians know – Dr Des Turner MP, Lady Mar, your own MP… (please send us copies).

If there are a few who still think the likes of Dr Turner and Lady Mar are, overall, helping ME patients – two words: Prove it.

Good Wishes, Paul

Paul Davis

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

Telegraph: Letters to the Editor: Breaking the ME enigma (jointly signed by ME spokespersons)

Telegraph: Letters to the Editor: Breaking the ME enigma (jointly signed by ME spokespersons)

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

Telegraph  |  06 February 2010

Breaking the ME enigma

SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

Such lack of understanding even extends to blaming parents for the severity of their child’s illness.

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.

Countess of Mar
Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot
Operations Director, ME Research UK
Jane Colby
Executive Director, The Young ME Sufferers Trust
Anne Faulkner
Hon Director, CFS Research Foundation
Tanya Harrison
Chairman, BRAME
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr
Consultant Senior Lecturer, St George’s, University of London
Simon Lawrence
Chairman, 25 per cent ME Group
Kathleen McCall
Chairman, Invest in ME
Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor
Derek Pheby
National ME/CFS Observatory
Neil Riley
Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer
Chief Executive Officer, Action for ME
Des Turner MP
Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME

Extract from controversial start to December APPG on ME meeting

Extract from the controversial start to the meeting of the APPG on ME held on 2 December 2009

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

Corrected version of Transcript available on Action for M.E.’s website: http://tinyurl.com/yhcxs3c  or open Word File here: Corrected Transcript APPG on ME 02.12.09

Open Transcript APPG on ME 02.12.09 PDF

Open Minutes APPG on ME 02.12.09 Word

Open Minutes APPG on ME 02.12.09 PDF

[Date of next meeting of APPG on ME announced as Wednesday 10 March 2010]

Update @ 4 February 10

Corrected version of transcript now appears below and in the Word File above.  Note that these corrections do not address the misattributions at the end of the meeting.

Edit: I have been asked to note that statements made by Nicky Zussman and recorded in the official transcript have been misattributed to Michelle Goldberg and that a request has been made to the APPG on ME Secretariat for amendments. Questions raised with the Chair, towards the end of the meeting, by John Sayer, have been misattributed to another attendee.

Because of the controversy surrounding the chairing of this meeting I am publishing an extract from the official verbatim transcript of the opening minutes.

(Transcript prepared through the offices of the parliamentary stenographer service, for the purpose of which an audio recording of the meeting was also made). I am told that a documentary production team (who were not filming) was also present, although its presence and purpose was not announced to the meeting.

It is understood that Dr Des Turner, MP, Chair of the APPG on ME, intends to stand down from his seat at the forthcoming election and and that he will be taking up a seat in the House of Lords.

Extract from official verbatim transcript: 2 December 2009

Des Turner MP (Chair): Good afternoon Ladies and Gentlemen and welcome to the all-party group on ME. Sir Peter Spencer has distributed a document to you, which is the interim report of the inquiry. We will discuss that in a short while but you have a chance to have a look at it before that.

I am glad to see so many people here this afternoon. The inquiry is the main topic of this meeting. Blood was sweated over this, but the piles of evidence were such that given the limited time and resources available to the group, we were not able to bring together a report with which we were totally satisfied—we nearly managed it, but not quite. Therefore, we decided to produce an interim report that contains the findings. Those findings are not going to change. The conclusions and recommendations of the report stand as they are in the interim report. The rest of the report has been reduced to a very brief introduction. We hope to produce the full report in due course, but it will contain the same recommendations and conclusions. They are as clear as daylight as far as the group is concerned, and are taken from the evidence. We thought it prudent to get something out as soon as possible, so that we could produce some effect with the recommendations. That is why the document is somewhat truncated. However, as I have said, the recommendations stand.

Paul Davies: A report has been handed out by Sir Peter Spencer. What was the consultation on that interim report?

Chair: This is the report. Let me make it clear that an all-party group is a group of parliamentarians. That group of parliamentarians has produced this report.

Paul Davies: But did you consult with Action for ME and the ME Association?

Chair: Yes, we did.

Paul Davies: Why did you consult only with those organisations?

Chair: Because they are the only groups who gave us any assistance. They are the only people who assist with the business of running this group. If you would offer to help with the secretariat you might get consulted, but you don’t.

Paul Davies: Yes, but the point is that this shows bias towards those organisations.

Chair: I am sorry. This does not show bias to anyone.

Paul Davies: It does because those organisations—

Chair: That is your opinion. This report is our assessment of the evidence. It is not biased for or against anyone.

Paul Davies: It is biased because you only consulted with Action for ME and the ME Association. Those groups support the clinics that we believe the large majority of ME patients do not want.

Sir Peter Spencer: May I make a quick point? The Minister will not have much time. Perhaps we could talk about this matter properly afterwards and have a proper discussion. Otherwise, the Minister will leave before we have had time to make use of his presence. We should get on with the main business.

Chair: I quite agree. Those comments bear no relation to the report. Can we get on with the report?

Paul Davies: They bear relation to those patients who do not want these clinics.

Chair: We will have that discussion afterwards. I know you feel that you represent millions of patients, but I do not think that you do. We will have that discussion afterwards. We are here to discuss the report.

The report is before you and the recommendations speak for themselves.

Ciaran Farrel: I was going to ask for some reading time. Perhaps we could go briefly through the report and the recommendations, so that we can understand what the Minister has to say.

Chair: You don’t know what I am about to say. To be honest, I am beginning to lose patience with you two. You would stretch the patience of any Chairman.

Countess of Mar: May I propose that these two people be evicted from the meeting so that we can carry on our business?

Chair: That would be the sensible thing to do. You two people spend most of your time trying to disrupt the work of this group.

Nicky Zussman: I don’t agree. I think that they bring important points.

Chair: I have yet to hear one.

Countess of Mar: In that case, I am going to leave. I am not prepared to waste my time listening to you when I have other things to do. I am sorry. I will not stay in a group with people who cannot behave themselves in a meeting and listen to the Chair.

[Countess of Mar leaves]

Chair: If you are not prepared to be quiet or leave, I will terminate this meeting. What will you do?

John Sayer: I am sorry Mr. Chairman. Why are you looking at me? It is the first time I’ve been here. I am a bit surprised at how things have gone so far.

Chair: So am I—surprised and exceedingly disappointed.

Nicky Zussman: We are the ill people. It is us who are being described. It is 11 years since the CMO’s working group was convened, and we are still being told what to do like very young children. I think that Paul has a point.

Chair: The Countess of Mar has put a lot of work into this. She works very hard to support ME sufferers, but she has just left in disgust. I feel very inclined to do so myself. If you wish to terminate the work of this group, continue with this utterly pointless discussion.

Nicky Zussman: We are not at school.

Chair: You are not at school, and you are on your own.

Janet Taylor: Please do not leave, Dr. Turner. I have come all the way from Yorkshire. I want to hear the Health Minister. I have important things to say.

Chair: I am sure you do. I am sorry, but we seem to have an element that is determined to be disruptive and does not want to listen to anything. Some people only want to rake over the coals of arguments that they have been making for years which lead absolutely nowhere. They are greatly to the detriment of the ME community.

Mary-Jane Willows: May I speak? On behalf of those patients who value and respect the work that you have tried to do for many years, I understand where you are coming from. I ask you to try and finish what you were saying. If you are interrupted again, I totally respect your decision to leave. I beg you to try once more and speak, without interruption.

Janice Kent: I second that.

Chair: Alright, but one more interruption, and I will call the police to remove you.

[End extract: Full verbatim transcript here: Transcript APPG on ME 02.12.09 PDF ]

RiME: Summary of APPG on ME meeting: 2 December 2009

RiME: Summary of APPG on ME meeting: 2 December 2009

Shortlink: http://wp.me/p5foE-2E8

Permission to Repost

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

RiME Summary of APPG Meeting 2/12/09

Dec. 1

Minutes of last meeting and APPG Draft Legacy Document, written by AfME and MEA, distributed over internet.

Dec. 2

3.00pm – 3.18pm attendees given copy of Interim Report ‘APPG on ME Inquiry into NHS Service Provision for ME/CFS’.

3.18pm meeting starts. Dr. Des Turner APPG Chair says you’ve got the Report; I’ll run you throught it; then I’ll introduce Health Minister Mike O’Brien who will talk about the Report; he’ll take a few questions but must leave by4.00pm. Dr. Turner says he is not entirely satisfied with Report; hence Interim Report; full report in due course; conclusions will remain the same.

Paul Davis RiME has hand up. If I remember correctly, Turner looked at me and nodded. I raised concerns about consultation asking if only AfME and MEA had been involved. Dr. Turner said that was the case.

Paul Davis said you (Dr. Turner) are biased toward AfME and MEA who support the clinics.

Dan Ward Norfolk Group said yes.

Ciaran Farrell said I want to support Paul’s point. Dr. Turner stopped him.

Nicky Zussman said she agrees with Paul’s point.

3.22pm Lady Mar said I move that these two individuals (Davis and Farrell?) are removed from the room. Nicky Zussman says they shouldn’t be removed from the room.

Lady Mar says if they’re not going I am. She leaves the room.

Nicky Zussman continues, saying that we are the patients, and that the APPG should be for the patients, but we don’t have a voice in it; you (Turner) are treating us like children.

Dr. Turner gets to his feet. He says, in raised voice, these two individuals have stretched my patience to its limits and he has a good mind to leave too.

Mary Jane Willows AYME and Jill Cooper West Midlands ME Consortium beg him to stay.

Dr. Turner says, in raised voice, he will stay but if there is one more interruption he will leave.

Dr. Turner goes through 11 key recommendations of Interim Report. There is no time for discussion.

3.47pm Dr. Turner introduces Mike O’Brien. Mike O’Brien said the CMO Report 2002 was a major turning point but the system had not responded adequately and put in place the various clinical, administrative and funding pathways recommended by the CMO Report. The APPG Report was another milestone; its recomendations were sound. ME was a complex, diverse condition. There are different views on treatment – Lightning Process (LP), CBT, GET – depends what works for you. Problems re. services are at a local level becuase ministers no longer rule from Westminster. The area of research was difficult; he was willing to talk to MRC about patients’ concerns. Stop arguing among yourselves.

Janet Taylor Kirklees Yorks talked about neurological services in her area, saying they had been disregarded, ‘what are you going to do about it?’

Janice Kent ReMember was sceptical about LP; Dr. Mike Broughton (Clinical Lead Sussex Services) said it only worked on people who aren’t ill.

Dr. Charles Shepherd MEA said there had been a dismal response from PCTs; they will not provide services at local level. O’Brien: local groups must unite to get proper services. Shepherd: you should be speaking to PCTs. O’Brien: it doesn’t work that way any more.

Dan Ward Norfolk Group said a young ME patient had been asked to prove their fatigue.

Minutes: Paul Davis said he switched his computer on yesterday afternoon to find the minutes and the APPG Legacy Draft Paper. Insufficient time for ME patients to read and digest. Questions Peter Spencer AfME. Spencer says it was due to the short time between meetings. Andrew Stunell MP calls for the minutes to be adopted, but it is agreed they will be bound over.

Dr. Shepherd on XMRV. He had met a number of doctors at MRC. Replication studies are happening and are about to take place in the UK. Early results based on Fukuda CDC criteria patients. Says funding will not be a problem.

Legacy Paper: Dr. Turner says it will be guiding not binding (patients unclear as to what will happen next).

Venue of APPG Meetings: Paul Davis asked if meetings could be held at Portcullis House with easier access for disabled persons. Turner says House of Commons is best place for them.

Welfare: Peter Spencer said evidence suggests that fewer people are getting support.

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

Overview    Control Freakery Taken to New Heights?

Dec.1 RiME wrote to Tristana Rodriguez AfME asking if ME patients were expected to read all the information sent out (see above) by 3.15pm the next day. No reply. Dec. 2 Let’s focus on main topic – Interim Report on Services set up following CMO Report:

First, the Interim Report was handed out shortly before the meeting to attendees, giving them inadequate time to read, digest and comment. It seemed to be presented like a fait accompli. It is evident now that the only ME parties consulted were AfME and the MEA. There are several points I want to make, here:

1. The two charities have supported the clinics from the outset. Their view contrasts with that of RiME and other ME organisations. There is a difference, though: RiME’s concerns about the clinics are backed up by substantial evidence – see our website, Clinics and Letters folders. Theirs is not. We refute their view on that basis.

2. That the APPG would only consult with these two organisations who support the clinics (on what basis?) demonstrates bias.

3. Are these two misguided organisations misleading politicians?

4. The influence of these two organisations within the APPG is totally disproportionate to the size of their memberships; they probably wouldn’t represent 5% of ME patients between them; and their respective memberships seem to be declining.

5. They have an unfair advantage at meetings in that they are ‘in the know’.

What happened at the start of the meeting needs to be viewed within that larger context. First, there is no need for me to defend my action; I acted within the code of conduct. I had my hand up from the start of the meeting; if I remember correctly, Des Turner looked at me; nodded; I spoke. One could make out a case that the meeting was interrupted in that Dr. Turner was talking about the content of the Interim Report, and I took matters back to pre-report; but I stand by what I did; it was a point which I (and others) felt needed making then; and I wanted the objection recorded.

The allegation which was made about the conduct of myself and two others does not stand up. The only person who appeared to be aggressive at the start of the meeting was the Chair (will return to this).

It is disappointing if a few read one of two inaccurate accounts and then jump on the bandwagon; what follows is the usual spiral of claims and counter-claims on the internet which helps no-one; we say to the former: listen to what several have to say before jumping in; and be more careful.

There seems to be a few who feel that the way forward still is to ‘educate and persuade’ politicians. I suggest they read the RiME website, especially ForT and Second Petition folders. I asked Tony Wright to start a Group at the beginning of 1998. Myself and others asked him to pay detailed attention to matters of nomenclature and classification, and focus upon the need for biomedical research. Did he and others heed what we said? No. We say to the above, especially newcomers: Get yourself informed, understand the history, don’t run before you can walk…

Too, there are a few who say we must be nice to one another and the politicians, whatever this means. This is all very well, but when one has tried that approach and got no results, is it sensible to continue that way? In the face of prolonged injustice, is one not entitled to challenge the politicians and national ME charities and make one’s points in a firm, decisive way?

Moving on to the conduct of Lady Mar and Des Turner:

Lady Mar: to say Lady Mar’s action was an over-reaction would be an understatement. If she had said that she objected to the line of questioning and would like it minuted, that’s one thing; if she had said that she objected to the line of questioning and, that if the persons concerned continued in that vein, they should be asked to leave – it would seem OTT. But no, she wanted ME patients forceably removed. For what? Raising issues about consultation.

Dr. Turner: well, he appeared to either lose it or be close to losing it; following Lady Mar’s departure, he seemed to shout at us like naughty school children. Re. what he said – see summary.

We deem the behaviour of both politicians inappropriate and unacceptable. What are they frightened of? The truth?

To sum up: these are the ugliest incidents I have seen to date at an APPG meeting. Were we surprised? Yes and no. Yes, by the extremity of what happened. No, in that it is an extension of what has happened at past meetings. Clearly, there is friction between those run and seek to control the Group and ME patients. The reason behind this is not just to do policy (and consultation), but the way meetings are mis-chaired….

Remember that APPG meetings were only opened up to the public in 2006 (this would seem to be after RiME’s representations to the Parliamentary Commissioner). From the outset there was very much a feeling of ‘them and us’ or ‘patricians and plebs’. At an early stage, it became apparent that the politicians and secretariat (AfME and MEA) could speak when they wanted to and for as long as they wanted (enabling them to influence the course of meetings); whereas, the mere patients had to wait on the discretion of the Chair; consequently we had situations where ME patients (1) would sit indefinitely with their hands up (2) would be stopped from speaking by politicians (3) were not protected from interruption. Have a look at what happened July 2007 and January 2008 (RiME website, APPG meetings folder).

As Nicky pointed out, it has been a Group which is not for ME patients but about them: a Group which is primarily about promoting Government policy (not about G93.3 ME) with its cheap, inappropriate options for ME patients….

Re. the contents of the Interim Report, RiME will post on this shortly (also, RiME’s submission on APPG Legacy Document). Enough for now.

Unwanted Xmas cards – please send to RiME, 10 Carters Hill Close, Mottingham, SE9 4RS

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

Minutes and Verbatim Transcript: APPG on ME meeting 2 December 2009

Minutes and Verbatim Transcript of APPG on ME meeting 2 December 2009 published

Date of next meeting of APPG on ME announced as Wednesday 10 March 2010

Shortlink: http://wp.me/p5foE-2E1

ME Association

Thursday, 14 January 2010 15:22

The next meeting of the All Party Parliamentary Group on ME will be held 1.30-3pm, Wednesday 10 March 2010, Committee Room 18, House of Commons. The agenda will follow in due course.

The APPG on M.E. will be open to members of the public. Before they travel, visitors should check for announcements on the Action for M.E. and ME Association websites, as the meeting room may change at very short notice if it is required by a parliamentary committee.

Entrance to the meeting will at the St Stephen’s Door to the House of Commons, and then ask the way to Committee Room 18. Please allow sufficient time in case there are big queues waiting to go through the security gatehouse. There is separate access for people in wheelchairs.

The minutes and a full transcript of the last meeting in December are available for downloading here.

Please note: amendments to minutes should be put in writing to the Secretariat one week before the meeting.

Email Tristana Rodriguez

or write to: Tristana Rodriguez, Action for M.E., Canningford House, 38 Victoria Street, Bristol BS1 6BY.

The official minutes of the meeting of the APPG on ME held on 2 December 2009 – together with a verbatim transcript – are now available for downloading from this website.

In response to demand, they are offered in both pdf and Word formats.

Minutes APPG on ME 02.12.09 Word

Minutes APPG on ME 02.12.09 PDF

Transcript APPG on ME 02.12.09 Word

http://tinyurl.com/yhcxs3c  

 

Next meeting – 10 March, Committee Room 18, 1.30-3pm.

You can find them at the MEA website at: http://tinyurl.com/ybgel9e

APPG on ME website

Forward-ME: Minutes of meeting 24 November 2009

Forward-ME: Minutes of meeting 24 November 2009

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

Ed: Forward-ME is a caucus group to the All Party Parliamentary Group on ME (APPG on ME) convened by the Countess of Mar in order to “hammer out areas where [the national patient organisations] shared common ground”.

Membership of Forward-ME is by invitation of Lady Mar, who also chairs these meetings. Members of the public are not permitted to attend the meetings, either as participants or observers. When the Countess of Mar had announced her desire, in mid 2008, to convene a group away from the APPG on ME, no discussions had taken place with the ME community around how, and on what basis it would be decided to whom invitations to participate in these meetings would be extended.

Nor had it been discussed whether the ME community would welcome such a group convening behind closed doors in between meetings of the APPG on ME (which members of the public are able to attend). Nor was it discussed who would be setting the agenda for these meetings.

Forward-ME meetings are attended by representatives of Action for M.E., the ME Association, AYME, The Young ME Sufferers Trust, BRAME, reMEmber (The Chronic Fatigue Society) and Mrs Sue Waddle, on behalf of ME Research UK.  

The 25% ME Group had been a member of Forward-ME but withdrew from the group following the “Countess of Mar NICE Guideline” issue.  Lady Mar was also asked to stand down as Patron to the 25% ME Group.

Invest in ME are also members of the group but have been dithering for sometime now over whether to also withdraw their support.

Since Forward-ME was convened, no further meetings of the ME Alliance have been held. It would appear that these meetings chaired by Lady Mar have become a substitute for (an extended) ME Alliance, although no formal statement on behalf of the Alliance has been issued around its current status or its future.

Correspondence between RiME and Lady Mar

Statement from Invest in ME on Forward-ME

Statement from 25% ME Group on Forward-ME

FORWARD-ME

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

Minutes of the meeting held on Tuesday 24 November 2009

At the House of Lords

1. Present:

Christine Harrison – BRAME
Bill and Janice Kent – ReMEmber
Peter Spencer – AfME
Charles Shepherd – MEA
Sue Waddle – MERUK
Margaret Mar – Chairman

2. Apologies:

Mary-Jane Willows – AYME
Jane Colby – TYMES Trust
Tanya Harrison – BRAME
Kathleen McCall – Invest in ME

3. Dr James Bolton, Deputy Chief Medical Adviser, Department for Work and Pensions.

The Chairman introduced Dr Bolton and thanked him for agreeing to address the Group.

Dr Bolton began by saying that the health and work agenda provided a lot to talk about. He had been looking at some graphs which showed that proportionally, there were more people of pensionable age, fewer people of working age, and those of working age were getting older. As the working population grew older they suffered from more adverse health conditions. The question then arose as to how to support people with health conditions in work. It was not only for economic reasons. There was a huge amount of evidence that showed the benefits of being in work and that being out of work was harmful.

This was the challenge. It would be necessary to get individuals, GP’s and employers to talk to each other and to work together. The current medical certificate or ‘sick note’ showed only that an individual was fit or not fit for work. This was in contrast with the proposed new ‘fit note’, for which legislation would be required, which would be used for people in work who would be capable of doing some kind of work which was not necessarily the same work as they had been doing. The GP would be expected to recommend which types of work were suitable. This would mean that appropriate and reasonable adjustments may have to be made in the workplace.

It was intended that pilot schemes would be run to make sure that people got appropriate treatment as soon as possible and that they were helped to get back to work. If these were successful the procedures were introduced universally. Most big businesses had access to occupational health services and were already able to cater for some changes. For small and medium enterprises (SME’s) an occupational health line with employment advisors would be appointed to provide an advisory service. This, again, would be piloted.

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

—————-

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

—————-

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.

—————-

**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.

——————

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.

Action for M.E: Initial responses to the APPG interim report

Shortlink: http://wp.me/p5foE-2s7

Action for M.E. publishes its initial responses to the Interim Report of the APPG on ME.

http://www.afme.org.uk/news.asp?newsid=702

News

Initial responses to the APPG interim report

03 December 2009

The All Party Parliamentary Group (APPG) on M.E.’s interim report on its Inquiry into NHS services for people with M.E./CFS, was launched yesterday in the presence of the Rt Hon Mike O’Brien MP, Minister of State for Health Services.

The Minister had been shown a courtesy copy of the report in advance of the APPG meeting.

He broadly supported the main thrust of the recommendations, although he questioned some points of detail. He was at pains to point out that budgets and responsibilities delegated to Primary Care Trusts meant that lobbying at the local level for better treatment of patients was usually more effective than looking towards ministerial intervention.

Nevertheless he acknowledged publicly that the implementation of the 2002 CMO report has not been developed sufficiently and that the system in the NHS was not good at dealing with complex illness such as M.E.

He later admitted, as a former Minister in the Department for Work and Pensions, that this Department also did not deal well with this illness.

The Minister identified three priorities:

1. To improve the quality and levels of service across all areas of the country and eliminate the variations in how patients are being treated.

2. To get agreement across the medical profession on a clear view about the clinical pathways for people with M.E.

3. To increase scientific research and our knowledge of the statistics of the needs of those with M.E.

Sir Peter Spencer, CEO, Action for M.E., invited Mr O’Brien to promote research as a key priority, because without a proper understanding of the biology we would not achieve the necessary agreement amongst doctors.

The Minister has agreed to write to the Medical Research Council, highlighting the need for research and to the Department of Health about the postcode lottery which exists for people with M.E.

A full transcript of the meeting will be posted on this website in due course.

Commenting today on the APPG’s interim report, Sir Peter said:

“It is of course disappointing that the full report with the supporting evidence has not yet been published owing to the limited resources available to the Inquiry group.

“However we recognise that it is nevertheless appropriate for the group to promulgate these recommendations early. This creates the opportunity to make the right impact with Health Ministers and with all major political parties at Westminster in order to establish cross party commitment to a longer term agenda that can be followed through when the next Parliament is formed after the election.

“The eleven recommendations in this interim report are welcome.

“There may not be anything that is particularly new here but together these recommendations form a powerful re-statement of the compelling need for improvement and for consistency throughout England in providing high quality healthcare to all people with M.E.

“Action for M.E. supports the emphasis on meeting the particular needs of children and the severely affected.

“We welcome the focus on training in M.E. for medical students, GPs and other healthcare professionals.

“And we strongly agree with the importance attached to biomedical research.”

Commenting on two recommendations in particular, Sir Peter added:

(Recommendation 1): “Establishing accurate estimates of people with M.E. is a major challenge. The pilot disease register which has been developed within the M.E. Observatory with money from the Big Lottery Fund could be expanded to play an significant role in this aspect of the needs assessment within each catchment area of the NHS.”

(Recommendation 4): “In remedying the lack of consistency in treatment options offered in different PCTs, the D of H should address variations in both quantity and quality; it should also implement the Government’s commitment to patient choice with treatments tailored to each patient’s specific needs and preferences.”

Inquiry into NHS Service Provision for ME/CFS 

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