Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

Dr Esther Crawley: Transcript of Presentation: “The Future of Research in CFS/ME”

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In March, this year, Dr Esther Crawley gave a presentation to a Dorset patient support group entitled “The Future of Research in CFS/ME” during which she also spoke on XMRV research and delivered some very controversial comment on the operation and findings of the Whittemore Peterson Institute (WPI).

It is understood that the presentation was attended by Annette Brooke (MP for Mid Dorset and North Poole) and Vice-Chair of the re-formed APPG on ME.

Below is an unofficial transcript that has been provided to me to supplement the partial transcript ( Dr Esther Crawley discusses XMRV and Whittemore Peterson Institute (WPI), March 2010 ) which was first published on ME agenda, in August.

Care has been taken in the preparation and proofreading of this text; some transcription errors and ommissions may remain.

 

Dorset CFS/ME Society
Annual Medical Lecture

27th March 2010

The Future of Research in CFS/ME

Esther Crawley

It’s a great pleasure to be here, everybody, and I’m really glad actually that my talk actually fits in very nicely with what William’s just said. Phew!

I’m going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So you’ll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on epidemiology. Continue reading

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ME and CFS in Parliament: Term dates, APPG on ME and Lightning Process pilot study, Written Question, new EDM

ME and CFS in Parliament: Term dates, APPG on ME and Lightning Process pilot study in children, Written Question, new EDM

Shortlink: http://wp.me/pKrrB-Qf

A compilation of Parliamentary related items

House of Commons Recess dates 2010-11 (Note: All recess dates are provisional)

House of Commons

State Opening: 25 May 2010

Conference Recess: House Rises: 16 September 2010 House Returns: 11 October 2010

Christmas Recess: House Rises: 21 December 2010 House Returns: 10 January 2011

Half term to be confirmed

Easter to be confirmed

APPG on ME

The reconvened APPG on ME had been expected to hold a planning meeting in September. I cannot confirm whether and when a planning meeting took place.

Today, I have written to David Amess MP (Acting Chair, APPG on ME), Annette Brooke MP (Vice-Chair, APPG on ME), APPG on ME ME Association Secretariat and Jane Colby (The Young ME Sufferers Trust).

I have requested that the controversial issue of the Bath/Bristol Lightning Process pilot study in children (which for which ethics approval was obtained in September and for which the study protocol and related documents were published on 16 September) is going to be tabled for discussion at the first meeting of the APPG on ME, on whatever date this takes place. If this is not being tabled for discusion I have requested that it be added to the Agenda.

The following have been advised: Invest in ME; 25% ME Group; RiME, Sue Waddle (rep for ME Research UK) and BRAME.

I took the opportunity of thanking Annette Brooke, again, for raising this issue with Rt Hon Andrew Lansley, MP, Secretary of State for Health and also for tabling the Parliamentary Question for which a response was received from Paul Burstow, MP, Minister of State (Care Services), on 11 October.

I also thanked the ME Association and The Young ME Sufferers Trust for their very strong opposition statements, their joint press release and for their representations to the Department of Health and to the Chair of South West 2 Research Ethics Committee.

I will confirm whether this issue is being tabled for discussion at the next meeting of the APPG on ME, which is expected to be held in November but for which a date has yet to be confirmed.

 

New EDM

An EDM (Early Day Motion) has been tabled by Ian Swales MP (LibDem Redcar). It is understood that this results out of lobbying by Jan Laverick and a family member.

EDM 778

MYALGIC ENCEPHALOMYELITIS
11.10.2010

Swales, Ian

That this House notes that despite the fact that the Department of Health now accepts myalgic encephalomyelitis (ME) as a genuine medical condition, diagnosis can still pose a problem because ME symptoms are similar to those present in a number of other medical conditions; recognises that one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease; believes that funding and research must be focused on the bio-medical factors involved and not just simply managing the psychological symptoms; requests that the Government establishes an independent scientific committee to oversee ME research; and calls on the Government and the Medical Research Council to work with ME sufferers and bio-medical researchers in order to achieve a proper understanding of the condition’s challenges and unjust perceptions of the condition.

At 14 October, 18 MPs had signed up to the EDM. Follow its progres, here, where signatures of supporting MPs are listed:

EDM 778 MYALGIC ENCEPHALOMYELITIS

Ian Swales MP maintains a Facebook page here: Ian Swales (Liberal Democrat) for Redcar on Facebook

What are Early Day Motions?

Early day motions (EDMs) are formal motions submitted for debate in the House of Commons. However, very few EDMs are actually debated. Instead, they are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view.

More information on the nature and purpose of EDMs, here, on the Parliament website

 

Contacting MPs

For contact details for MPs go to this page on the Parliament website:

http://www.parliament.uk/mps-lords-and-offices/

or here on They Work for You: http://www.theyworkforyou.com/

Find out about your new MP/ MSPs/ MLAs

Read debates they’ve taken part in, see how they voted, sign up for an email alert, and more.

They Work for You links to:

The most recent Commons debates

The most recent Westminster Hall debates

The most recent Written Answers

The most recent Lords debates

The most recent Written Ministerial Statements

 

Written answers and statements, 13 October 2010 [2]

Written answers and statements
Hansard source (Citation: HC Deb, 13 October 2010, c347W)

Work Capability Assessment: Chronic Fatigue Syndrome

Margaret Curran (Labour, Glasgow West): To ask the Secretary of State for Work and Pensions whether the agency contracted to provide medical examinations as part of the Work Capability Assessment has been issued with specific guidance on the assessment of persons presenting a diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome. [14304]

Chris Grayling (Minister of State for Employment): All health care professionals working for Atos Healthcare are required to read an evidence based protocol on chronic fatigue syndrome as part of their induction training. This was last updated in January 2010. In addition, all health care professionals are required to engage in a programme of continuing medical education which includes two modules on chronic fatigue syndrome. These were last updated in April 2009 and March 2010 respectively.

Related information

[1] “Unethical” Lightning Process pilot study in children receives ethics approval 

[2] Information on tabling Parliamentary Questions:
http://www.parliament.uk/documents/commons-information-office/p01.pdf

RiME: Commentary on APPG on ME Inquiry into NHS Service Provision for ME/CFS, March 2010

RiME: Commentary on APPG on ME Inquiry into NHS Service Provision for ME/CFS, March 2010

Shortlink: http://wp.me/p5foE-39y

From Paul Davis RiME Campaigning for Research into Myalgic Encephalomyelitis

16 September 2010

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

There is a link to the full Report on the RiME Website, see NHS Services Inquiry folder.

The Report was signed by five members of the APPG on ME: Des Turner MP (Chair), Tony Wright MP, Andrew Stunell MP, Peter Luff MP, Lady Mar.

Note: The Committee on Standards in Public Life promotes, ‘high standards in the public sphere through the seven principles… ‘: they include: objectivity and honesty. Have these criteria been met?

Paul Davis paul641@talktalk.net   www.rime.me.uk

RiME Condemns APPG Inquiry Report

Problems re. Nomenclature and Classification

In the Foreward P.3 Des Turner writes, ‘… The APPG accepts the WHO Classification of ME (ICD G93.3) as a neurological condition… ‘ However, if one flicks to the back of the Report, 14 out of the 24 sources refer to Government Reports (1), with the Royal College of GP’s Report, connected to CMO Report and NICE Guidelines, being used seven times; sources which are not about the illness described by G93.3. The Inquiry Group also received evidence from PCTs: but ME patients complain that clinics set up following the CMO Report are not about ME; the clinics in Kent, for example, exclude patients with neurological illness; so, is the evidence from PCTs accurate or relevant as far as ME is concerned?

The Terms of Reference say (P. 21):

ME is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of ME or else adopts the hybrid CFS/ME in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to only use the precise WHO classification of ME above will impede access to information from the NHS that is crucial to the success of this inquiry…

Continue reading

Summaries: MEA Board of Trustees meetings 6th and 7th of September 2010 and AGM

Summaries of ME Association Board of Trustees meetings held on 6th and 7th of September 2010 and AGM (Annual General Meeting) held on 7th September

Shortlink: http://wp.me/p5foE-39l

New MEA website link for these Summaries:

http://www.meassociation.org.uk/?p=1659

Summary of MEA Board of Trustees meetings held in September 2010

This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees.These meetings took place at our Head Office in Buckingham on Monday afternoon, September 6 and on Tuesday morning, September 7 2010. This is a summary of the Board meetings – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

Where appropriate, there is background information relating to the issue being discussed.

The final part of the summary also contains key points from the AGM held on Tuesday afternoon, results of trustee elections, and the post AGM Board of Trustees meeting.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman by telephone link.
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO)
Janet Thomas (JT)

FINANCES, ADMINISTRATION, PREMISES AND STAFF

ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of July 2010. There has been a continuing drop in some areas of income during the first seven months of 2010 when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is still running slightly ahead of unrestricted income.

Income from fundraising has shown a continuing and welcome increase over the same period in 2009. In order to cope with the increased demand on fundraising support services a new part-time post to deal with fundraising administration has been created. Applications for the new post are now being considered.

There has also been a significant increase over the past seven months in the ring-fenced funding held by the Ramsay Research Fund.

Trustees reviewed the changes in banking arrangements, aimed at improving interest received on deposit accounts, that have been carried out in the past few weeks in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.

Trustees held a further short discussion on some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on their best wishes to Lucy Kingham at Head Office – who is taking maternity leave in September – and finalised arrangements for a temporary member of staff to cover her absence.

MEA TRUSTEES

Trustees had intended to spend part of Monday afternoon interviewing a potential new trustee but he was unable to attend. This interview was therefore postponed to a later date.

As reported previously, Janet Thomas had to withdraw from the 2010 trustee election due to ill health but will remain as an observer. It was agreed that she has been an excellent trustee and it is hoped that she will re-apply if her health improves.

We are still able to increase the number of co-opted trustees – so we are keen to hear from anyone who would like to discuss the possibility of joining the MEA in this role. Applications are welcome from people with ME, carers, and anyone who has a skill which they feel could be of benefit to the charity. In order to proceed with an application, non- members would have to become members of the MEA.

FORWARD PLANNING

A further short discussion on the future growth of the MEA was held on Tuesday. This work includes the expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so.

FUNDRAISING INITIATIVES

The MEA has to raise funds on top of membership subscriptions, which currently only provide around half of the general income that is required to fund the basic running of the charity and Head Office administration. We are also facing a situation whereby people are reducing donations to the charity sector. At the same time, demand on support and information services is increasing, especially in relation to benefit and employment information now that the welfare/benefit reforms and difficulties associated with the introduction of the ESA are taking effect. Trustees and staff therefore have to devote a significant part of their time to boosting fundraising activities in order to maintain our current level of services.

Northern Ireland fundraising for ME/CFS research. Mid Ulster Vintage Vehicles Tractor and Car Club: Sponsored trek from Moneymore to Castlerock-Limavady

TB reported on the outcome of the Mid-Ulster Vintage Vehicles Club’s 100-mile vintage tractor and car trek, which this year has raised a substantial sum for the Ramsay Research Fund. The event started in Moneymore on Saturday 23rd July and finished the following day in Castlerock-Limavady. A tremendous effort has been put in by the O’Neil family – father John, sons Ronald and Richard and daughters Jacqui and Fiona. Following a request from the organisers, TB and CS will be travelling to Northern Ireland later this month for the presentation ceremony.

More information on this important fundraising event appeared in the July issue of ME Essential magazine.

2010 London Marathon

The MEA paid for two guaranteed places in the 2010 London Marathon – so we had two runners taking part as well as several other people running who raised money for The MEA. We would welcome offers from anyone who wants to raise funds in 2011 but we are not paying for any guaranteed places next year.

Amazon Walk to raise funds for a tissue and post-mortem/brain bank:
BS reported on the return of her son Ed, following completion of his epic Amazon Walk. Ed has walked solidly for 859 days and covered around 6,000 miles. He is the first person to carry out what has been an outstanding physical and mental challenge and he will quite rightly enter the history book of hazardous expeditions.

On his return in early August Ed appeared on a number of radio and television programmes – including GMTV, BBC Breakfast Time and the BBC One Show – and his story has been given extensive coverage in the UK and international press. A full summary of media coverage can be found on the MEA website news section.Ed’s progress can still be be seen on his Amazon Walk blog >> http://www.walkingtheamazon.com 

Trustees discussed a number of ideas for possible fundraising events following his return home. One of Ed’s first talks on the Amazon expedition will be given to a meeting of the Transglobe Expedition Trust at the Royal Geographical Society in November, where he will be joined by the distinguished explorer Sir Ranulph Fiennes and Michael Palin.

Ed Stafford has a fundraising page for MEA/RRF research here. Around £8000 has been raised so far.

Vegepa for ME scheme The Vegepa for ME Scheme is proud to announce a new partnership with the ME Association’s Ramsay Research Fund to run alongside their long-standing enterprise with ME Research UK in a joint effort to improve the lives of ME sufferers. From August 2010, The Scheme, which has donated over £36,000 since it started up in 2006, will be raising money for crucial biomedical research undertaken by both of these ME charities. The Vegepa for ME Scheme, devised and run by Lynne Kersh, mother of a daughter with long-term ME, has a secure website which sells clinical-grade, patented Vegepa and its various sister products.

MEA website shopping  This facility on the MEA website home page provides a direct link to well known shops and on-line stores. Purchasing goods on-line from companies such as John Lewis, M&S, and Amazon via the MEA website is simple and we receive a commission of up to 15% from the shop at no charge whatsoever to the purchaser. Please give it a try! It only takes a few seconds to register for the service on the Easyfundraising.com website.

Mobile phone and ink cartridge returns and trolley coins MD reported on the latest financial returns from these on-going fundraising initiatives. Returns of ink jet cartridges continue to be a very successful source of income – so please keep sending them in. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the literature order form insert in the August issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. Envelopes for the return of ink cartridges and mobile phones can be ordered using the literature order form.

Christmas cards We have three cards for sale this year – details and pictures in the October issue of ME Essential magazine. A pdf order form can be downloaded the MEA website by clicking here.

Blue ribbons for ME Awareness These can be obtained using the pdf Order Form on the MEA website. Single ribbons cost £1 with a discount for bulk orders over 20.

Summer Raffle This was drawn at the end of July and the winner of the first prize kindly sent the same amount back to the MEA!

Fundraising information Fundraising leaflets are available for use at events and for approaches to sponsors and requests for donations. Free copies can be obtained by phoning MEA Head Office on 01280 818968.

PARLIAMENTARY MATTERS

APPG CS updated trustees on events that had taken place to set up a new APPG on ME following the General Election. This involved finding a new Chairman because Dr Des Turner had retired at the election, as well as finding a small group of other parliamentarians willing to take up the post of Treasurer, Secretary etc.

An inaugural meeting was held on 8 July – shortly before Parliament broke up for the long summer holidays. Those present agreed that David Amess MP would take on the role of Chairman. Other officers elected: Annette Brooke MP (Vice Chair); John Leech MP (Secretary) and Martin Vickers MP (Treasurer). A copy of the Minutes for this meeting can be found in July ME Essential magazine and on the MEA website. The current list of members of the new APPG can be found here.

A planning meeting was proposed for September but no date has yet been fixed.

Further details of the agenda, time, venue for the next full APPG will appear on the MEA website as soon as they become available. It is advisable to check with the MEA website the day before APPG meetings in case any late changes are made.

Neil Riley, Chairman of the MEA, wrote to Dr Des Turner to express our thanks for chairing the APPG and wishing him a happy retirement from Westminster.

The August MEA website poll asked people what they felt was the most important topic for the new APPG on ME to take on. Votes were as follows:

XMRV: 913
Benefits: 442
Medical Education: 274
MRC research: 100
NHS Services: 78
NICE guideline review: 74
Severely affected: 47
Children: 15
None: 7

These results have now been forwarded to David Amess, along with a summary of recent developments relating to benefits, research, NICE guidelines, Lightning Process research etc.

APPG Inquiry into NHS Services Trustees previously agreed to help fund the production of some paper copies of the report because we believe this information should be readily available to members of the public who do not have internet access. A paper copy of the final report has been added to the MEA literature list (as a free item) in ME Essential.

The report can also be downloaded from the MEA website or the APPG website: http://www.appgme.org.uk

Countess of Mar’s Group: FORWARD ME The meeting planned for Wednesday 7th July, at which the group intended to discuss a range of current issues, had to be cancelled due to the Countess of Mar being unwell. A new date has not yet been arranged for this meeting.

The Forward ME Group website >> http://www.forward-me.org.uk has information about the group and archives of minutes from past meetings, including a detailed summary of the presentation on benefit issues (ICB and ESA in particular) from Dr James Bolton, Deputy Chief Medical Adviser at the DWP, to the last meeting.:

BENEFITS

Trustees discussed the current situation regarding benefit problems, the changeover from ICB to ESA starting in October, and the Independent Review of the WCA. A copy of the MEA submission to this review can be found on the MEA website here.

NICE GUIDELINE REVIEW

CS reported on correspondence with NICE regarding the date of the proposed guideline review. A copy of our most recent reply from NICE dated 23 August can be found on the MEA website here.

RESEARCH AND RAMSAY RESEARCH FUND (RRF)

RRF: XMRV and MLV: Trustees discussed the latest XMRV research results from validation studies that have been reported in the medical journals – in particular the results from the study by Lo et al that supports a link between retroviral infection (XMRV or MVL) and ME/CFS. The MEA summary and statement on this paper can be found in the website news section here.

The role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate the American findings, or do other relevant work on XMRV was discussed. CS reported on the various contacts and discussions he is continuing to have with virologists on how best to take this research forward in the UK – including the current initiative to retest anyone here in the UK who has sent a blood sample to the US laboratory. The MEA has issued regular website position statements on XMRV and will continue to do so. We have also written to Sir Liam Donaldson, the previous Chief Medical Officer at the Department of Health, about the XMRV research findings and the implications for blood donation and blood transfusion. We have now written to Dame Shirley Davies, the new acting CMO, about extending the blood donation ban to people who have recovered from ME/CFS. A reply from the new CMO states that the current ban will be extended to include anyone with a past history of ME/CFS as from 1 November. This will cover the whole of the UK.

CMO correspondence.

RRF: Professor Julia Newton et al, University of Newcastle CS reported that assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The initial assessment procedures include testing autonomic nervous system function, muscle performance, exercise physiology and body composition (ie the amount of fat and muscle present). The next phase of the study will involve the use of magnetic resonance spectroscopy to assess the way in which their muscle is producing energy and lactic acid. Further information on this study can be found in the August 2009 issue of ME Essential magazine.

RRF funding = approximately £13,800.

Newcastle University Fatigue Research Symposium: Dr Shepherd met Professor Newton at this research meeting which was held on Thursday 10th June at the University of Newcastle. There were presentations from Professor Newton and colleagues on muscle and autonomic dysfunction research involving people with ME/CFS. The meeting focussed on muscle research and considered the role of fatigue in other medical conditions such as HIV and other infections, mitochondrial myopathies, primary biliary cirrhosis and Sjogren’s syndrome. The session on HIV and fatigue covered the important issue of muscle mitochondrial damage following antiretroviral therapy (AZT) and this is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July issue of ME Essential magazine and on the on the MEA website here.

An abstract from a new research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle can be found on the MEA website here:

RRF: Factors involved in the development of severe ME/CFS The results of this questionnaire based research, carried out by Dr Derek Pheby and Dr Lisa Saffron, and funded by The ME Association, have been published in an open access on-line journal. More information, including a link to the paper, can be found on the MEA website here.
There is a vast amount of useful information in this paper for anyone with severe ME/CFS, especially those who are involved in disputes over benefits, social care etc.

RRF funding = approximately £30,000.

RRF: Gene expression research Results from a study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, were published in the open access scientific journal, BMC Medical Genomics.

Although RRF funding has now finished, we remain in contact with Professor Gow and colleagues in Glasgow regarding further work in this important area.

RRF funding = approximately £38,000.

RRF: Post-mortem tissue bank feasibility study CS updated trustees on phase two of the feasibility study into the setting up of an ME/CFS brain and tissue bank. This has included a focus group meeting which allowed a group of people with ME/CFS to freely express their views on the various ethical, legal and practical issues surrounding tissue and post-mortem research. Work on phase two commenced in February and is being carried out by Dr Luis Nacul and colleagues at the London School of Hygiene and Tropical Medicine. An article summarising all the various MEA post-mortem research initiatives that are taking place can be found on the research section of the MEA website. An article on phase two of this research appears in the February 2010 issue of ME Essential.

Trustees also discussed the various post-mortem research examinations, along with plans for publication, that we have been involved with. CS reported that results from four post-mortems will be presented and discussed at an international conference later in the year.

The next meeting with the researchers involved will take place on September 9th.

RRF funding = approximately £14,000.

ME Observatory Steering Group The final stages of this work are proceeding to plan with several research papers being prepared or submitted for publication. The last MEO meeting discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular – when Lottery funding ends in September. The Disease Register now has around 500 people with well characterised ME/CFS – new cases recruited from primary care and others with chronic severe disease via the CHROME database – and it is hoped that this important work will continue and be of use to the researchers in due course.

The ME Observatory has arranged a half day Dissemination Conference that will also cover issues relating to work, welfare and DWP benefits. This event has CPD (continuing professional development) accreditation and will take place in London on Saturday afternoon, 25th September. A senior person from the DWP that deals with ESA will be giving one of the presentations at this event.

Two MEO workshops will be taking place on 28 September (in Sheffield) and 29 September (Birmingham). The next MEO Steering Group meeting will be held on September 9th.

Medical Research Council (MRC) Expert Group on ME/CFS Research Two follow up meetings relating to the two day research workshop that was held on November 19th and 20th 2009 have been held. The minutes of the last meeting, which outlines priorities identified for MRC funded research, can be found on the MRC website. Summaries of the presentations and slides used at the November workshop are available on the MRC website. Further information on the MRC Expert Group can be found on page 12 of the May issue of ME Essential and on the MEA website here.

We are now awaiting a statement from the MRC as what action they propose to take on the recommendations for research priorities that have been made by the Expert Group.

Lightning Process Trustees held a further discussion on a new research study that has been announced into the use of the Lightning Process. Costing £164,000, the feasibility study will investigate how children and adolescents could be involved in a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns have been raised about the possible use of children and adolescents in this type of study and we are discussing this with our colleagues in other ME/CFS charities. As a result of these discussion the MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern, which can be found here.

This was sent to the Department of Health with a request that it should be forwarded to the ethics committee that is dealing with the application. The DoH have refused to do so – a decision which we believe is unacceptable.

FINE AND PACE Trials Responses to publication of the results from the FINE trial have appeared on the BMJ website, including one from The MEA. Trustees discussed the way in which results from the MRC funded FINE and PACE trials are likely to affect a review of the NICE guideline on ME/CFS. Responses to the results of the FINE trial can be accessed via the MEA website here.

We understand that results from the PACE trial will be reported to the BACME conference in October.

Biochemical and Vascular aspects of paediatric CFS

Trustees briefly discussed the University of Dundee research findings relating to infection and inflammation in children with ME/CFS that had received widespread media publicity on the BBC on Tuesday morning. CS also did some BBC interviews during the day, including Radio 5 Live during their lunchtime news programme. More information on this research can be found on the MEA website.

Sleep Disorders Conference CS has been invited to attend an important clinical and research conference in London in December that will be discussing all aspects of sleep disorders.

*
The MEA is now in a position to fund new research in addition to current commitments and the funding that has been set aside to help set up a UK tissue and post-mortem bank. Information on the work of the RRF can be downloaded from the research section of the MEA website.

SCOTTISH MATTERS

ED reported on publication by the Scottish Health Department on 1 September of clinical guidance on ME/CFS for doctors in Scotland – a document that had originally been based based on the MEA purple booklet for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues. Publication of the Scottish Public Health Network Needs Assessment has not yet taken place As noted in previous MEA Board meeting reports, the timescale for both projects had to be re-organised in 2009 and progress has been considerably delayed as a result.

Trustees discussed the content of the Scottish Good Practice Statement and the feedback so far from patient representatives that have been involved in their development. A preliminary MEA statement can be found on the MEA website here.

ED will be attending a meeting of the Cross Party Group committee on Wednesday 8th September and the full meeting of the CPG on Wednesday 22 September where the documents will be discussed.

MEA ANNUAL MEDICAL MEETING IN CARDIFF

Trustees finalised arrangements for our annual medical meeting. This is an open and free meeting in an ‘ME Question Time’ format that we rotate around the country. Panel members will be Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Neil Riley (Chairman, MEA), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA). This year we are co-operating with the Welsh group WAMES and holding the meeting in Cardiff on Saturday 23rd October. More information can be found on page 3 in the July issue of ME Essential magazine or on the MEA website.

If any local groups are interested in co-hosting this meeting in 2011 please let us know.

MEA LITERATURE

The latest MEA Management File on Fatigue (involving both brain and muscle) appears in the July issue of ME Essential. A new Management File on the subject of XMRV and MLVs is now being prepared for the October issue of ME Essential.

An updated leaflet on dental anaesthetics has been prepared by Dr Richard Cantillon, our dental adviser.

The MEA now has almost 70 leaflets and booklets covering all aspects of research, diagnosis and management.

The MEA Management Report contains the final analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of patient and carer opinion about management issues that has ever been undertaken here in the UK, possibly in the world. The report was distributed free as part of the May issue of ME Essential. It can also be downloaded from the MEA website – where over 3,000 people have already viewed the report. Extra paper copies can be obtained from the MEA at a cost of £2.50p. This research was funded by the Ramsay Research Fund – so any profits will go to the Ramsay Research Fund.

The October 2009 version of ME/CFS/PVFS – An Exploration of the Key Clinical Issues is continuing to be well received. This 36 page booklet for both doctors and people with ME/CFS contains references to all new research and treatment developments up to October 2009, including a prominent boxed section on the XMRV research findings. The MEA medical guideline is therefore the only substantial publication of this nature covering research, clinical assessment and management to also include XMRV research. As before, The MEA is willing to make a reduction in price for bulk orders from local groups, other ME/CFS charities and PCTs.

MEA literature can be obtained using the website pdf ORDER FORM or the 8-page order form insert in the July issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.

MEA WEBSITE

Trustees discussed various matters relating to The MEA website.

The regular on-line survey feature remains very popular. Previous polls have asked about attitudes to post-mortem research (February 2009); GP skills and knowledge (March 2009); how much people have spent on services/treatments outside the NHS (May 2009), Vaccines as trigger factors (May 2010)and opinions on DWP medical assessments that have been carried out by ATOS. The current (September) question asks for opinions on how employers view ME/CFS . Results from all the previous on-line surveys can be found on the MEA website.

If anyone has any suggestions for future website polls please let us know.

ME CONNECT

Trustees reviewed the administration of telephone calls and emails received by ME Connect, our information and support service. Up to the end of July 2010 the service dealt with 1151 emails and 1727 phone calls – a total of nearly 3000 enquiries so fat this year. A recent check on telephone response times audit indicated that almost all calls were being answered either immediately or within a few minutes. However, there will always be occasions when a delay is inevitable due to the volunteer on duty having to deal with a difficult call.

ME Connect, our telephone information and support service, operates every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm. Tel: 0844 576 5326.

We are always keen to hear from anyone who would like to join ME Connect as a volunteer. If you are interested please contact the MEA via ME Connect

This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

ME ESSENTIAL MAGAZINE

TB reported on plans for the October issue of ME Essential. Any remaining copy must be with Tony by the middle of September. We are aiming for publication in the middle of October.

The Editorial Board is always happy to receive constructive comments about any aspect of the magazine.

NEW SHORT FILM ON ME : ‘ALL ABOUT ME’

This is a new short documentary film (in two parts) about Laura Fursland, a very promising young music student who developed ME following an episode of glandular fever, with complications, at the age of 18. The film deliberately concentrates on Laura’s story and how it has affected all aspects of her life – in particular how her life is now “on hold” and her plans to go to university to study music.

The medical input – covering key symptoms, possible causation, drug treatments and the losses/social isolation of living with ME at this age – is briefly inserted at various points. The film is not intended to focus on the medical and science behind ME/CFS.

This film was made by Teesside University with information being provided by the MEA.

McCarrickFilms  | 14 August 2010
(Part 1/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…

McCarrickFilms | 13 August 2010
(Part 2/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…

 

MEA HEAD OFFICE: VOLUNTEERS WANTED

In addition to the telephone volunteers who deal with ME Connect enquiries, we have a small number of dedicated volunteers who come into the MEA office in Buckingham on a regular basis to help with various aspects of our work. If you know of anyone who lives locally to Buckingham, and would like to come into the office and help out on a flexible basis please get in touch with Gill Briody. The MEA office is modern, on the ground floor of an out-of-town site, has disabled access, and good free car parking facilities on site.

DATE OF NEXT BOARD MEETING

Fixed for Monday and Tuesday, 15th and 16th November 2010.

AGM AND TRUSTEE ELECTION RESULTS

The Annual General Meeting of the charity took place on Tuesday 7 September at the Head Office in Buckingham.

Present

Ewan Dale
Mark Douglas
Neil Riley by telephone link
Charles Shepherd
Barbara Stafford

Tony Britton
Gill Briody

Agenda

The minutes of the previous AGM were agreed.

Neil Riley presented the Chairman’s report

Ewan Dale presented the Treasurer’s report

Auditors for the financial year ending in December 2010 were appointed

Trustee Elections

Ewan Dale: 389 votes in favour, 12 votes against
Charles Shepherd: 410 votes in favour, 2 votes against

11 abstentions
5 votes not accepted due to membership not being renewed
11 votes not accepted as received after the closing date

Both candidates were elected

A full report on the AGM will appear in the October issue of ME Essential

POST AGM BOARD MEETING

Neil Riley re-elected as Chair
Ba Stafford re-elected as Vice Chair
Ewan Dale re-elected as Treasurer
Gill Briody re-elected as Company Secretary

Summaries prepared by Dr Charles Shepherd, Trustee

Lightning Process pilot: Update and response from Research Governance Manager, DoH

Lightning Process pilot for children with CFS and ME aged 8 to 18: Update and a response from Research Governance Manager, Department of Health

Shortlink: http://wp.me/p5foE-30G

For background to this issue see ME agenda 5 July report:

Advertising Standards Authority (ASA) Adjudication: Withinspiration (Lightning Process)

For joint ME charity statement and press release see:

Joint Press Release and statement: ME Association and The Young ME Sufferers Trust

Update

It’s now five and a half months since the RNHRD NHS FT Bath/University of Bristol announced its intention to undertake a pilot study looking into the application of the Lightning Process in children aged 8 to 18. The press release issued 2 March can be read here:  Press Release, a media article here: Media article.

Joint charity press release

On 4 August, the ME Association and The Young ME Sufferers Trust issued a joint statement and press release strongly opposing the pilot study and calling for it to be abandoned. Their joint press release can be read here.

The press release was issued too late for inclusion in the ME Association’s Autumn issue of ME Essential. But the magazine does include a write up, on Page 4, of the Advertising Standards Authority (ASA) adjudication against Lightning Process company “Withinspiration”.

ASA adjudication against Lightning Process company

In June, the ASA upheld a complaint against an advertisement in which unsubstantiated claims had been made about the efficacy of the Lightning Process for CFS and ME.

Read the full ASA adjudication against “Withinspiration” here

Alastair Gibson, the Lightning Process practitioner associated with the company, had let it be known in March that he was one of two Lightning Process practitioners involved with this controversial NHS study. This information no longer appears on the “Withinspiration” website and the current status of his involvement in this pilot study is unknown.

25% ME Group position

On 11 August, Simon Lawrence, Chair of the 25% ME Group Management Committee, confirmed that the 25% Group is intending to issue a position statement shortly and that my concerns and documents sent to them have now been passed on to their medical advisors, Dr Byron Hyde, Canada, and Dr Nigel Speight (former NHS paediatrician with a special interest in ME in children).

Requests for information under the Freedom of Information Act

On 22 July, I submitted a formal request to the University of Bristol’s Director of Legal Services for an internal review of their decision to withhold nearly all information around the study under FOIA Clause 22(1)(a). A response is due on or before 19 August. My request for an internal review can be read here.

On 3 August, I submitted a request for information to the National Research Ethics Service (NRES). This is due for fulfilment on or before 31 August. Questions submitted under FOIA around the application for ethics approval and the application timeline can be read here.

Responses from parliamentarians and government departments

In July, I approached my MP, Annette Brooke (Lib Dem, Mid Dorset and North Poole), for her involvement with this issue. (Mrs Brooke is the MP who gave the adjournment debate speech on ME before Parliament dissolved prior to the election and is now Vice-chair of the recently reformed APPG on ME.)

On 31 July, I received a copy of a paper letter from the Parliamentary Office of Annette Brooke to the Rt Hon Andrew Lansley MP, Secretary of State for Health, Department of Health, dated 29 July. Mrs Brooke has requested that the Secretary of State for Health look into this matter. A response is pending.

I also raised my concerns with the Countess of Mar, Lord Clement-Jones and Earl Freddie Howe, all three being Patrons to the Young ME Sufferers Trust. Earl Howe is the Parliamentary Under-Secretary of State for Quality.

My communication was forwarded by Earl Howe to Matthew Harpur, Department of Health.  Mr Harpur forwarded it to Bill Davidson, Research Governance Manager, Department of Health, who has responded on behalf of Earl Howe.

Response from  Bill Davidson, Research Governance Manager, Department of Health on behalf of the Parliamentary Under-Secretary of State for Quality:

30 July 2010

Thank you for your e-mail of 16th July to the Parliamentary Under-Secretary of State for Quality regarding a research project involving the “Lightning Process” in 8- to 18-year-olds with myalgic encephalomyelitis. Earl Howe has asked me to reply.

You are quite right that new treatments should be compared with current standards to see which is better. You are also right that this comparison should be made in appropriate participant groups.

New treatments are not generally tried out first in children before there is evidence of their safety and efficacy in adults, but sometimes it is appropriate to do so. It is a matter for a research ethics committee to be assured that the evidence supports the extension of the new treatment to children.

We require the decisions of research ethics committees to be independent and free from bias and particular stakeholder interests. It would therefore be inappropriate to have a mechanism through which particular stakeholders might seek to affect a research ethics committee’s decision. We require research ethics committees that become aware of a possible breach of good practice in research to inform the relevant authorities so that they can take appropriate action.

Our National Research Ethics Service publishes lay summaries of the research approved by research ethics committees. It is normal practice for researchers also to put details of interventional studies on an open-access register, before the first participant is recruited, unless there is very good reason for delaying disclosure.

I note that the outcome of the research ethics committee review of the proposal for this project has not yet been reached. I expect it will, in accordance with Department of Health policy, come to a decision that takes account of all the ethical issues, including the appropriateness of the proposed participant group.

Yours sincerely,

Bill Davidson
Research Governance Manager
Department of Health
Quarry House
Quarry Hill
Leeds LS2 7UE
Tel: 0113 254 6184 / 07900 164755
Fax: 0113 254 6174
E-mail: bill.davidson@dh.gsi.gov.uk
Web: www.dh.gov.uk

All Party Parliamentary Group on ME reforms

All Party Parliamentary Group on ME reforms in the new Parliament, and list of members

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

Update: Added since first published

1]  Clarification regarding membership of the APPG for ME by Suzy Chapman

2]  Register of All Party Parliamentary Groups at 30 July 2010

Open PDF here: APPG Register at July 2010  [< 2MB]

or here: http://www.publications.parliament.uk/pa/cm/cmallparty/register/register.pdf

 

On 9 July, the ME Association published the membership list for the reformed APPG on ME:

09 July 2010

On Wednesday 7 July David Amess MP chaired the inaugural meeting in Westminster of the All Party Parliamentary Group (APPG) for M.E.

We are pleased to report that the decision was taken to re-register as an approved APPG and that the mandatory 20 qualifying names of Parliamentarians were obtained to enable this to happen.

For further information, including the names of the office holders, you can find the minutes of the meeting here:

http://www.meassociation.org.uk/images/stories/appg_minutes_070710.doc

Open Word doc here: APPG on ME Minutes 07.07.10 

also appended.

MEMBERS OF PARLIAMENT WHO HAVE JOINED THE APPG FOR ME

1. David Amess MP (Conservative, Southend West)
2. Graham Brady MP (Conservative, Altrincham and Sale West)
3. Laurence Robertson MP (Conservative, Tewkesbury)
4. Adrian Sanders MP (Liberal Democrat, Torbay)
5. Peter Bottomley MP (Conservatve, Worthing West)
6. John McDonnell MP (Labour, Hayes and Harlington)
7. Russell Brown MP (Labour, Dumfries and Galloway)
8. Nigel Evans MP (Conservative, Ribble Balley)
9. Iain Liddell-Grainger MP (Conservative, Bridgwater and West Somerset)
10. Annette Brooke MP (Liberal Democrat, Mid Dorset and North Poole)
11. Sharon Hodgson MP (Labour, Washington and Sunderland West)
12. John Leech MP (Liberal Democrat, Manchester Withington)
13. Kerry McCarthy MP (Labour, Bristol East)
14. Kelvin Hopkins MP (Labour, Luton North)
15. Jim Dowd MP (Labour, Lewisham West and Penge)
16. Mark Garnier MP (Conservative, Wyre Forest)
17. Dave Anderson MP (Labour, Blaydon)
18. Harriett Baldwin MP (Conservative, West Worcestershire)
19. Richard Burden MP (Labour, Birmingham Northfield)
20. Countess of Mar (Cross-bencher, House of Lords; chair of the ‘Forward ME’ Group)
21. Tony Baldry MP (Conservative, Banbury)
22. Sajid Javid MP (Conservative, Bromsgrove)
23. Hywel Williams MP (Plaid Cyrmu, Arfon)
24. Peter Aldous MP (Conservative, Waveney)
25. Nigel Dodds MP (Democratic Unionist, Belfast North)
26. Lord Puttnam (Labour, House of Lords)
27. Martin Vickers MP (Conservative, Cleethorpes)

All Party Parliamentary Group on M.E.

Minutes of a meeting of the All Party Parliamentary Group on M.E.

Chair: David Amess
Vice-Chair: Annette Brooke MP
Secretary: John Leech MP
Treasurer: Martin Vickers MP

Minutes of a meeting of the All Party Parliamentary Group on M.E.

held at 11am, Wednesday 7 July 2010

Room B, 1 Parliament Street London

Present

Parliamentarians

David Amess MP – chair of this meeting
Annette Brook MP
John Leech MP
Martin Vickers MP

Parliamentary office representatives in attendance

Joanna Ashworth, office of David Amess MP
Richard Crossick, office of John Leech MP

Secretariat in attendance

Sir Peter Spencer (Action for M.E.)
Charles Shepherd (MEA)

Apologies:

Harriet Baldwin MP
Tony Baldry MP

1.Welcome

David Amess welcomed his fellow MPs and explained that the meeting had been called to see if the APPG for M.E. should be formed again in the new Parliament and re-registered on the approved list. He had agreed to sponsor this inaugural meeting because he was the only remaining officer from the APPG on M.E. in the previous Parliament still able to participate.

2. Election of Officers

The meeting was quorate and elected the following officers:

Chair – David Amess MP
Vice-Chair – Annette Brooke MP
Secretary – John Leech MP
Treasurer – Martin Vickers MP

David Amess explained that he would act as chair on an interim basis only because of the volume of his other commitments. He had found a fellow MP who would be very suitable as chair and hoped that this member would come forward for election to the post before too long. Meanwhile he would hold the fort.

3. Registration

The meeting decided to apply for re-registration on the list of approved APPGs. The secretariat confirmed that the criteria for qualifying members had been met with a list of 20 parliamentarians of the required party mix. David Amess and John Leech signed the application form. This will now be delivered to The Office of the Parliamentary commissioner of Standards ahead of the 13 July deadline.

4. Date of Next meeting

It was decided that the next meeting of the APPG would be held in November 2010. This would be preceded by an informal planning meeting in September to discuss the future agenda and decide how the group will operate in this Parliament.

5. AOB

The secretariat distributed copies of the legacy paper which was produced by the previous APPG and of the “Turner” paper on the APPG inquiry into NHS Service Provision for M.E./CFS.

 

 

Clarification regarding membership of the APPG for ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group for ME.

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

In the case of Associate Parliamentary groups, applications for membership may be considered by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group for ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG for ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG for ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

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

INTRODUCTION

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

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. and the ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

In the past, AfME and the MEA have alternated the task of minute taking and the preparation and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and have been opened up to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties. 

They are also open to members of the ME community and their carers, who can and do regularly attend and contribute to these meetings. This has not always been the case and the presence of members of the public is at the discretion of the APPG chair and committee.

So none of the following five national registered membership ME patient organisations are members of the APPG for ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, have provide the secretariat function: AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group.

ME Research UK : a research organisation and registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

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

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

It is not known whether transcripts will continue to be provided for the meetings of any new group that may be convened.

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

or opened here on ME agenda

APPG Groups Rules

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

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

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

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

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

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

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

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

Tuesday, 22 June 2010

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

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

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

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

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

Open Word document here on ME Agenda: Example letter

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

Dear __________________

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

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

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

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

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

Yours sincerely

 

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

Minutes of previous APPG for ME Meetings and Legacy document

The APPG for ME website has PDF copies of Minutes of meetings going back to 31 January 2001 collated at: http://www.appgme.org.uk/minutes/mintues.html

APPG Legacy Paper 26.02.10

 

Clarification regarding membership of the APPG for ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group for ME.

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

In the case of Associate Parliamentary groups, applications for membership may be considered by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group for ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG for ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG for ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

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

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

INTRODUCTION

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

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

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi422.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).”

In the past, AfME and the MEA have alternated the task of minute taking and the preparation and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and have been opened up to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties. 

They are also open to members of the ME community and their carers, who can and do regularly attend and contribute to these meetings. This has not always been the case and the presence of members of the public is at the discretion of the APPG chair and committee.

So none of the following five national registered membership ME patient organisations are members of the APPG for ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, have provide the secretariat function: AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group.

ME Research UK : a research organisation and registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

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

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

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

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

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

or opened here on ME agenda

APPG Groups Rules

Summary ME Association Board of Trustees meetings 14, 15 June 2010

Summary of ME Association Board of Trustees meetings 14 and 15 June 2010

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

ME Association  |  17 June 2010

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees.

These meetings took place at our Head Office in Buckingham on Monday afternoon, June 14th and on Tuesday morning, June 15th 2010.

This is a summary of the Board meetings – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

MEA website: http://www.meassociation.org.uk

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO)
Janet Thomas (JT)

FINANCES, ADMINISTRATION, PREMISES AND STAFF

ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of April 2010. There has been a drop in some areas of income during the past few months when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is currently running slightly ahead of unrestricted income.

However, income from fundraising has shown a significant and welcome increase over the same period in 2009 and in order to cope with the increased demand on fundraising support services it was decided to create a new part-time post to deal with fundraising administration with immediate effect. Details about this new post will be placed on the MEA website when trustees have agreed the job description.

There has also been a significant increase over the past twelve months in the ring fenced funding held by the Ramsay Research Fund for research purposes.

Trustees once again reviewed the current ‘best buys’ for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.

The new computer equipment for Head Office staff is now fully installed and working in a satisfactory manner. GB reported that a few minor problems have still to be resolved.

Trustees discussed some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on best wishes to Lucy Kingham, at Head Office, who will be taking maternity leave in October.

FORWARD PLANNING

Trustees held a further discussion on the future growth of the MEA. This work includes looking at areas of priority for expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so. Continue reading

RiME: Notice and Letters 11/5/10

Campaigning for Research into ME (RiME):  Notice and Letters 11/5/10

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

www.rime.me.uk

From Paul Davies

11 May 2010

Campaigning for Research into ME (RiME)

Hi,

Thanks to those who have sent good wishes re. my bout of shingles. Slow progress…

Trying to catch up on correspondence… Because of increased and increasing support for RiME it gets increasingly difficult to reply to everthing. If you have sent a letter/email recently which you feel warrants a reply, please try again.

Good Wishes, Paul rimexx@tiscali.co.uk  www.rime.me.uk

Selected Letters Oct. 2009 – April 2010

Views expressed in the letters do not necessarily reflect those of RiME.

Ref: 799 Grampian

Thank you for sending me the latest newsletter. As always, the newsletter is realistic with regard to all aspects of the ME situation. When will this change in the UK?

The leading ME charities seem to go round in never ending circles achieving very little for neurological ME patients. It is as though they are reluctant to admit that they are representing both G93.3 patients and F.48 patients at the same time. Is this because they don’t want to choose between the two groups? Is this why they still back the ludicrous CFS clinics dolling out CBT/GET? Who profits from this approach?

Worryingly these are the groups who supposedly “represent” neurological ME patients in the UK. They should truthfully state which group of patients they represent. Or perhaps it is time for a new ME Group which truly represents neurological ME patients. Perhaps an alliance between some of the already existing smaller pro-neurological ME groups? I like the idea of one “UK ME Society” representing G93.3 patients only. Sounds quite a good name too because it incorporates all sufferers the length and breadth of the UK.*

It is incredible that following the latest XMRV research results the MEA is not recommending that research scientists should adhere to the stricter Canadian Clinical Guidelines for research patient selection. This says it all. Why does the MEA wish to leave the research door wide open to include F48.8 patients?** Do they really want both G93.3 and F48.8 patients to continue to be lumped together, thus watering down research results? Don’t they want to find a diagnostic test, followed by appropriate treatment? Or do they want ME patients to remain in the Chronic Fatigue/F48.8 mire for all time? If this is the case then a new UK ME Group is sorely needed…

Ref: 804 London

Thank you for the last Newsletter. Excellent. Yes, how we do get rid of AfME + MEA? Perhaps it’s something that needs to be discussed on the internet. Would you consider putting this letter on message boards? The point is: If the vast majority don’t feel the above are acting in their interests (indeed, many feel they are acting against them in that they are not really about G93.3 ME) then let’s robustly discuss that knotty problem ‘how do we get rid of them’?

1. It’s excellent to see their respective memberships nose-diving but the trouble is, will they not be propped up by Government funding? Could we petition the Health Department asking that Section 64 funding be withdrawn?

2. I find it difficult to think of anyone now who genuinely supports them. I know a few who still get their awful rags because ‘they want to know what’s going on’. Is there a way that more people can access their information but without subscribing ie share-swaps or info. being circulated via ‘net.

3. Challenge those groups who still support them – it never ceases to annoy me when I see a Local Newsletter which says at back ‘useful addresses – AfME, MEA… ‘ Too often the wrong people get to run local groups – there seems to be so many troglodytes and blissninnies who feebly accept the status quo; sadly, too few challenge what they do re. the larger picture.

4. The obvious way to get rid of the above is for us to start a new national ME Society*. But without the backing of a wealthy philanthropist, it won’t be easy… If the philanthropist doesn’t materialise, could one have a process where ME patients pledged money as they did re. the Judicial Review. Tricky. Would people be prepared to do it without knowing exactly what the end product would be?

Food for thought…

Ref: 806 Lincs

I wish I had the energy to write a long post about my NHS experience however to summarize:

I had similar experiences as people here.
Each session of the NHS CFS group was 2 hours long, this was at least 1hr too long. It made it a 3-4hr event.
They made us sit on school class room style chair, agony.
If/when you left they blamed you for not cooperating so it didn’t go into any statistics I went to 6 out of 8 sessions. When I left half had gone already. The ones that stayed seemed to have other conditions.
It sent me into a bad relapse.
It was even suggested I leave my wife and children to avoid stress.
It was horrendous, I didn’t get to see a consultant or even a doctor.
I had my initial assessment with a nurse and the sessions were run by an OT.
No tests or specialist help just relaxation and exercises to stop my negative thinking.

Bad bad bad…

Ref: 810 Glamorgan

APPG Legacy Document… This is a deeply depressing document.

Can we get anywhere while the Group pretends its remit is ME, but acts as if it’s CFS?

Perhaps the answer is to split it into two separate Groups. Those who favour the psychiatric clinics to call themselves APPG on CFS. Those who commit themselves only to ICD-10 G93.3 ME to use the existing name, the Canadian Consensus Criteria &/or the Nightingale definition of ME, and pursue biomedical research and treatments specifically for ME and provision by the DWP appropriate to a disabling neuroimmune disease?

You deserve several medals for plugging away at this so faithfully…

Ref: 813 Norfolk

… Just want to register at this point my ongoing gratitude and continuing support for your efforts to make us heard!
and also to applaud those efforts of the other-equally beleaguered-ME sufferers at these meetings – please don’t let them silence any of you – I only wish I was well enough to attend myself; alas have now been housebound for months
But you need to continue to speak up because you are just about the only people there who are actually stating the facts and representing the true needs of ME patients. Without your voices we will all be gagged.

Lady Mar should step down in my opinion, since she seems completely unable to control her temper it follows that she is hardly a suitable person to act as Chair…

Ref: 816 Yorks

… I must congratulate you. When you first notified me about the Inquiry, the common question was “will it try to concoct a favourable report and publish it in the run up to the next election?”

I think your actions have helped ensure that did not happen. It sounds quite awful what happened to you at the last meeting. The current APPG does not appear to be fit for purpose. Let’s hope after the election, the situation will improve.

A big “THANK YOU” for your sterling efforts, which hopefully is a step towards stopping the abuse of patients, given the unsupported diagnosis of ME/CFS.

I discovered the report on 10th January; it was unacceptable the way it was presented to the APPG. It was also very discourteous that Dr Turner did not even acknowledge receipt of papers people sent in. We were not told when the hearings took place. We were not told the Interim Report had been issued….

Ref: 822 Birmingham to Parliamentary Commissioner

… I understand that you have been contacted recently by ME sufferers who attended the APPG meeting for ME held on the 2nd of December last year. I wish to add my support to their complaint.

I think it may help if I give you some background information that has given rise to unhappiness that is surfacing at meetings. Currently there is tension amongst the ME community due to the fact that they feel their illness is not being taken seriously at Westminster. Part of the blame for this stems from what sufferers see as a failure of ME charities and their supporters to adequately represent them. Because of this, some feel they have no choice but to struggle to meetings in the hopes of trying to educate politicians as to how dire their situation is. People such as I who have been ill for twenty- two years cannot make the trip to London and are extremely grateful to sufferers who do make an effort; aware that many do so at a cost to their own health. Nevertheless and regardless of their efforts, politicians still only see ME charities as being representative of all sufferers and show favourable bias towards them. Whilst recognising that meetings only have a limited time in which to conduct business it needs to be borne in mind that the APPG for ME has been in existence for just over a decade, yet not one success can be pointed at to justify its cost to the taxpayer. The equivalent of a business plan has never been put forward. Had politicians developed one it would have shown a real commitment on their part, and gone some way to show to the public what expectations they should have, and what can reasonably be achieved by a group having APPG status. As a result dissatisfaction with the APPG group has steadily grown.

At the moment it is far too easy for group politicians to portray the public as being awkward or aggressive when the group’s lack of progress is being brought to their attention, but unfortunately that is what is now happening. In my view politicians appear to feel that just showing a willingness to be involved with ME, is in itself enough for nothing other than gratitude to be shown towards them. Whilst I and many others are grateful if a politician shows an interest, there seems little point if nothing of any substance ever materialises. As you know yourself living in a democracy allows people, if unhappy, every right to say so without fear. This ought to be obvious to the politicians involved. They should also be aware that they are displaying poor judgment when they show not only an unwillingness to listen, but believe it acceptable conduct to flounce out of meetings. Their actions only feed into underlying concerns the public in general have regarding the standard of politics in the UK. Concerns that are understandable given what is being currently being said in the media.

I am also worried that – as an election is on the horizon – there may have been some manipulation of events at the last few APPG meetings, in order to try to justify the current APPG not being reformed when a new Parliament reconvenes. This would leave only ForwardME as the only ME lobby group within Westminster; a group in which it has been made quite clear to the ME community that only people acceptable to it are allowed to attend…

(Ed. copies to RiME of letters sent to Parliamentary Commissioner go into double figures).

Ref: 830 Kent

Thank you for the summary of the APPG meeting, and for standing up for ME patients. I hope it didn’t take too much of your energy, it’s appalling that they respond in the way they do. R says don’t let the xs get you down….

Thank you again for your email. Surely there will be a breakthrough in someone’s research somewhere in the world and the politicos and Wesselyites will have to eat mounds of humble pie. Won’t that be bliss!

Ref: 832 Yorks to Daily Telegraph

A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’, which says in para. 4 ‘it is time the nation started taking ME seriously’. I wish to comment on the said letter by pointing out the following:

The rank and file have been trying to get the nation to do this since 1997… Often it has been done without any support from the main groups who seem content to let things ride referring to any such attempt as counter productive, and sitting on the side lines… Some representatives from these groups have even signed the letter.

Any progress in the nation becoming aware of ME of which there are many enlightened citizens has been done by the rank and file going among them, it is a sad fact that the establishment is not as enlightened, a point which the general public have often commented on at fundraising and awareness events.

Other signatories are members of the APPG on ME, which when it was formed as a result of action taken again by the rank and file between 1997 and 1998. In eleven years the APPG has not once championed the cause of ME biomedical research, but have debated other issues and when complaints have been made at meetings have threatened to evict anyone who disagrees, as a result of this dictatorial behaviour they have been reported to the Parliamentary Commissioners for Standards….

Yes ME has needed the enigma to have been broken and resolved but this should have been done long ago, by those whom we looked to for leadership but were sadly let down…

Ref: 835 Dorset

I hope you don’t mind me emailing you but x y posted your message about the latest APPG debacle on Facebook. Firstly, thank you for all you do. I am in agreement with your comments regarding certain members of the APPG. They seem to be conducting highly irrelevant investigations into what amount to highly irrelevant NHS services. I have pointed this out to many people including CS of the MEA but there seems to be a reluctance to admit any fault….

Anyway, I understand that Des Turner is stepping down as chairperson so it could be an opportunity for some new blood in the group. My MP, Annette Brooke (Lib Dem) might be somebody to approach about this. She has shown a lot of concern towards me and my worries about the lack of research into ME. You may have seen the adjournment debate she led in parliament a few weeks ago. I was partially responsible for this although I wasn’t entirely happy with the early part of the speech (I wrote the second half!) as it was rather too complementary about our local ME clinic/support group which quite frankly are a disgrace….

Ref: 837 London

… The Internet is a powerful tool which can work to ME patients advantage, especially in terms of exposing the national ME Charities’ errant ways. Running Internet Services is not an easy job, and there can be a fine line between freedom of speech and moderation. However, if a person makes accusations which are inaccurate and unfair, then one wonders if a line has been crossed. Critical comments have been made recently about persons attending the Dec. 2 2009 APPG meeting, with words such as ‘rude’, ‘aggressive’ and ‘disruptive’ being used.

I was there that day. For the record: No ME patient acted rudely. No ME patient acted aggressively. The only rude and aggressive behaviour came from politicians. Consequently, several have complained to the Parliamentary Commissioner.

Distorted and exaggerated accounts are too readily accepted by a few Internet users, and they need to be more careful what they write.

Disruption? That is a moot point. If there was, fine with me. The way the APPG Inquiry into ME/CFS Services was set up certainly needed challenging (with only AfME and MEA being consulted re. writing of Report). Moreover, if ME patients hadn’t spoken up at the start of the meeting, I dare say they wouldn’t have been given the chance.

The whole thing stinks. Talking to friends around England, I don’t get any good reports on the clinics set up following the CMO Report; indeed, the opposite – more GET, CBT… Yet the APPG, in conjunction with AfME and MEA, has published a Report which does not accurately reflect how ME patients feel…

‘Relax, we’re winning, XMRV… ‘ I don’t subscribe to that view; it smacks of complacency, if not Micawberism. The Government in cahoots with ‘Wesselyites’ will hold out for as long as they can. Why? Money, of course. If replicated test results from ME patients show anomalies, we still have a mountain to climb.

Note the evolution of the Wesselyite argument: First, didn’t they say ME doesn’t exist? Now, are they not saying that there is a biological element but it is still largely psychosocial; treat the latter, and ME patients will improve/recover? Their studies (not about strictly defined ME) provide the Government with a cheap option which I think they will cling to for as long as possible.

So, we must challenge clinics set up following the CMO Report upon the ‘Wessely model’. Congratulations to those who had the courage to speak out on Dec. 2; they deserve our loyalty and support…

Ref: 842 Lancs

Dear Mr Turner

You are to be commended for your courage in taking the chair at any meeting concerning ME. Obviously you must have been aware previously that there is a sizeable bone of contention between certain factions of those people who are focused on progressing the interests of ME sufferers. That such a rift exists, reflects the wide variations in the severity of the condition (a variety mentioned by the Minister himself) and is a considerable factor behind such bitter disagreement.

From the minutes of the last APPG meeting it seems patently clear to me that you (and the Countess) do not acknowledge a similar act of courage to your own from ME sufferer Mr Paul Davis and some of his supporters given the severity of the condition encountered by these people. Merely attending the meeting is in itself an ordeal which prevents others with similar problems from playing any part in fighting their corner. Mr. Davis’s efforts are truly Herculean and the Chair, whatever the difficulties, must recognise this and, on all occasions, give respect, at least, to his views. Mr Davis and his supporters are fighting for their very lives and this cannot be said, with the best will in the world, in respect of the “professionals” who represent the large charities. Mr Davis does indeed carry the hopes of many sufferers of severe ME who, however, are effectively disenfranchised by the fact that government and the APPG meetings both operate from a far corner of the UK so that, given their debilitating illness, they find the time and distance to be problems which they are completely unable to endure. Let this never be forgotten.

Quite frankly, your treatment of Mr Davis was nothing less than appalling and revealed a complete lack of skill for anyone acting as Chair. You openly admit, as reported in the minutes, that AFME and MEA were the only groups consulted, a fact which needed to be brought to attention at the outset. Your “reason” for carrying out this act of impartiality being “because they are the only people who assist with the running of the Group” (APPG) is completely outrageous and does not bear thinking about. (I trust that this is not a usual Parliamentary practice). Given the widely known polarised views on ME, this impartiality is a blatant slap in the face for Mr Davis and his supporters in RIME.

To the injury supplied to Mr Davis above you then had the audacity to add insult. Your recorded stab at Mr Davis “I know you feel that you represent MILLIONS of patients” was unacceptably contemptuous. (It is, however, pertinent to state what the Minister himself said, that the number of ME sufferers is not actually verifiable, which is a comment in itself about the progress made with M.E.). To cap it all, the minutes record that, in repost to a supporter of Mr Davis that “important points” had been made by Mr Davis and his colleagues, you retorted “I have yet to hear one.” Bias, Mr Chairman? You supply any synonym you like….

Ref: 844 Kent

… I’m so sorry to hear that you’ve got shingles; really nasty. I hope it soon abates. It was a great pity that you had to miss the latest APPG meeting; I’ve been trying to get there for the past year or so, but it’s still beyond me at the moment.

Was really glad, though, to see – on ME Agenda – Chris Ellis’s excellent letter condemning the treatment you were afforded at the previous meeting, behaviour which was truly appalling and at the same time cutting to the chase on what the APPG should really be about. Will they take notice I wonder…

Not a lot of hope out there for us at the moment with the conflicting XMRV test results floating about. Have just finished reading Hillary Johnson’s Osler’s Web… fascinating and illuminating, bringing home how serendipitously ME (or CFS as it was in the States) became ‘associated’ with psychological problems, and in such a cynical way.

Have just read the APPG Governance procedures, which seem to indicate that the Chairman is always right…

Please don’t respond, you’ll have enough on your plate coping with yet another painful and debilitating symptom; just wanted to get in touch to give you my support. Will try to take some action on the Report.

Ref: 846 Surrey

To RiME,

Letter to Lady Mar… Don’t let the Blissninnies and PollyAnnas get you down.

Dear Lady Mar,

I have read the full transcript of this meeting (APPG on ME Dec. 2 2009).

Myself and others associated with ME congratulate Paul Davis RiME on the points he made at the beginning of the meeting. He was quite right to ask who was consulted regarding the writing of the Report on ME/CFS Service Provision, and to raise concerns in that respect.

These were valid and legitimate points.

I don’t know anyone, incidentally, who is attending the clinics set up following the CMO Report 2002.

Can I ask, therefore, why you asked for him to be evicted? …

Ref: 851 Leader of Manchester Group

Charles. Yes it is a funny old world. The whole scenario reminds me of the fable of the Emperor’s new clothes. A case of collective denial. I don’t know where you’re getting your feedback from maybe you could share it with us.

There is not one single children’s NHS clinic that doesn’t treat ME as a psychosocial illness. The APPG report doesn’t see this as a problem. It ‘accidentally’ omits the advice of the TYMES Trust and repeatedly quotes Esther Crawley, the staunch Wessely School specialist. If Des Turner gets his wish and CFS/ME children’s clinics are funded throughout the UK we will almost definitely see more of the same. The number of children being forced into harmful/abusive psychosocial treatments will dramatically increase. Why on earth would people with ME want to thank Des Turner for that?

The MEA’s repeated excuse of supposed ‘feedback’ to try and justify their atrocious position on the clinics is beginning to grate.

The MEA justify their backing of the clinic (which almost entirely consist of psychosocial treatments) by quoting feedback of those who most probably have psychological chronic fatigue.

*Ed: The ME Association has already registered “The ME Society” with the Charity Commission as an alternative name to its operating name.

**Ed: If the author is referring to ICD-10 Neurasthenia, the ICD-10 code is F48.0, not F48.8.

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