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

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.

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.

Action for M.E. Election manifesto

Action for M.E. Election manifesto

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

Note: This site operates independently of any patient organisation. The publishing of material on this site does not imply endorsement or recommendation.

Action for M.E. News

http://www.afme.org.uk/news.asp?newsid=761

Election manifesto video launch
23 February 2010

M.E. manifesto video goes live

Today Sir Peter Spencer, Chief Executive, Action for M.E., launches a video urging people with M.E. and their family and friends to use our Election Manifesto for M.E. to lobby local Parliamentary candidates.

Tristana Rodriguez tristana.rodriguez@afme.org.uk, our Policy Officer, is keen to hear from anyone who forwards the manifesto to their MP, or potential MP, and receives a response.

The manifesto has been produced in partnership with the Association of Young People with M.E. (AYME) and in consultation with people who have the illness.

Initial responses to the document have already been received from the three main political parties. Action for M.E. has written back, calling for greater commitment to the issues which matter to people with M.E.

 

Parties respond to M.E. manifesto
19 February 2010

http://www.afme.org.uk/news.asp?newsid=757

All three main political parties have answered calls by Action for M.E. and the Association of Young People with M.E. (AYME) to outline their election pledges for people with M.E.

Responses to our Election manifesto for M.E. have now been received from Labour, the Conservatives and Liberal Democrats.

Labour has focused on health and welfare, increasing Access to Work and reassessing Incapacity Benefit or Income Support claimants to move them on to Employment and Support Allowance.

The Tories lead on speeding up drugs appraisal procedures, before moving on to single health and social care assessments and the introduction of a single integrated back-to-work programme for everyone on out-of-work benefits.

The Liberal Democrats, who are still working on their election manifesto, concentrate on investing in support for children, especially in terms of education.

Commenting on the responses, Action for M.E.’s CEO, Sir Peter Spencer says:

“I would like to thank the three parties for providing their responses to the manifesto for M.E. but I am very disappointed to see that they have each failed to address many of the key issues.

“We understand that certain policies may still be in development which may explain why our manifesto priorities have not been given the explicit emphasis we would expect. Perhaps these omissions will be resolved as the party policies develop.

“To this end, we will continue to lobby at a national level, and we would urge supporters of the manifesto to do the same with their local Parliamentary candidates. We want to see the next Parliament make a genuine and powerful commitment to tackle the huge problems faced by people with M.E. and their families and to remove the inequalities which have been overlooked for far too long.”

Mary-Jane Willows, CEO of AYME, comments:

“Whilst I am pleased that the responses were made they are all sadly lacking in content and substance. They still fail to acknowledge the huge shift in awareness and services required if the needs of children and young people with M.E. are going to be fully met.

“Individuals with M.E., their carers, parents and partners now need to take the manifesto to lobby all their Parliamentary candidates who then can’t fail to realise the scale of the issues this marginalised patient population is faced with in health, education, social care, benefits and employment.

“Ignoring this significant patient population must end now and be replaced with a clear and robust strategy that will increase awareness and support across the board.”

The charities are calling on local support groups, individuals with M.E., their carers, friends and others to join us in lobbying parliamentary candidates to sign up to the pledges in our election manifesto for M.E.

For free copies of the manifesto to send to your MP or local Parliamentary candidate – plus a sample campaign letter, please contact our Policy Officer, Tristana Rodriguez tristana.rodriguez@afme.org.uk tel: 0117 9301325 or Katie James katie@ayme.org.uk, from AYME, tel: 01908 379737, stating how many copies you need.

Documents:

Video
Election Manifesto
Sample Campaign Letter

Responses from three main political parties

Labour Response
Conservative Response
Liberal Democrat Response

MEA: Summary of APPG on ME meeting 10 March 2010

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

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

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

MEA SUMMARY

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

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

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

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

VENUE

Committee Room 18 at the House of Commons.

The meeting lasted from approximately 1.30pm to 3pm.

ATTENDANCE

Parliamentarians

Dr Desmond Turner MP (Chair)
Countess of Mar

Parliamentary office representatives

Nick Osborne

Secretariat

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

Organisations and individuals

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

Ciaran Farrell
Michelle Goldberg
Augustine Ryan

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

AGENDA

There were two main items on the Agenda.

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

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

VANESSA STANISLAS: TACKLING DISABILITY POVERTY

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

APPG REPORT ON THE INQUIRY INTO NHS SERVICES

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

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

Open Final Report:

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

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

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

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

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

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

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

A short discussion followed. Key points included:

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

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

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

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

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

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

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

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

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

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

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

Press Release: March 10 APPG Inquiry Press Release

APPG LEGACY PAPER 

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

A few minor points were raised.

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

AOB:

STATEMENT FROM WEST MIDLANDS GROUP ME CONSORTIUM

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

MEA WEBSITE:

http://www.meassociation.org.uk

Summary prepared by Dr Charles Shepherd, Hon Medical Adviser MEA

ENDS

RiME Notice: 15/03/10

RiME Notice: 15/03/10

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

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

RiME Notice

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

Frustrating… Much going on and much to do.

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

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

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

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

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

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

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

Good Wishes, Paul

Paul Davis

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

Agenda: APPG on ME meeting Wednesday, 10 March 2010

Agenda: APPG on ME meeting Wednesday, 10 March 2010

Shortlink: http://wp.me/p5foE-2P4

APPG Legacy Paper 26.02.10

Agenda meeting 10 March 2010

Next APPG

The next All Party Parliamentary Group on M.E. will meet in Committee Room 18, House of Commons, between 1.30 and 3pm, Wednesday 10 March 2010.

AGENDA

1. Welcome by the Chairman

2. Minutes of the last meeting

3. Speaker: Vanessa Stanislas, CEO, Disability Alliance, Tackling Disability Poverty

4. APPG Report on the Inquiry into NHS Services

5. APPG Legacy paper (attached) to be formally approved

5. Matters arising

– Review of NICE guidelines

7. Any other business

8. Date of next meeting

Changes to the minutes of the last meeting (attached) should be e-mailed to the Secretariat (tristana.rodriguez@afme.org.uk , 0117 9301325) by 5pm 3 March please.

Please note:
It has been known for committee rooms to be taken over for other pressing parliamentary events and/or for parliamentarians to be called away at short notice. To avoid disappointment, those planning to attend are advised to check this website where we will post a cancellation notice should this be necessary

Tristana Rodriguez
Policy Officer
Action for M.E.
Direct Dial 0117 930 1325

Registered charity number: 1036419. Registered in Scotland: SCO40452

www.afme.org.uk

Number10 e-Petition response

Number10.gov.uk The official site of the Prime Minister’s Office

e-Petition response

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

Update @11 February

A recent response from the Registrar of Members’ Interests, Office of the Parliamentary Commissioner for Standards also set out the status of All-Party Parliamentary Groups:

“All-Party Groups are informal cross-party groups that are not part of the official structure of the House of Commons. They are not funded by Parliament, nor are they accorded any powers by it.”

http://petitions.number10.gov.uk/MEInquiry/#detail

This petition is now closed, as its deadline has passed.

Submitted by Dave Loomes – Deadline to sign up by: 17 September 2009 – Signatures: 316

Petition update, 05 February 2010

The Prime Minister’s Office has responded to that petition. The response can be viewed here and is also appended.

http://www.number10.gov.uk/Page22366

More details from petition creator

The All Party Parliamentary Group’s Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor’s on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies.

The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke?

We the undersigned call for a immediate public inquiry into these inappropriate and blatant conflicts of interest!

Dave Loomes, the Petition Creator

Response published Friday 5 February 2010

http://www.number10.gov.uk/Page22366

E-petition response

We received a petition asking:

“We the undersigned petition the Prime Minister to take up Gibson Inquiry into ME recommendation of a Public Inquiry into vested interests.”

Details of Petition:

“The All Party Parliamentary Group’s Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor’s on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies. The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke? We the undersigned call for a immediate public inquiry into these inappropriate and blatant conflicts of interest!.”

Read the Government’s response

The independent inquiry mentioned in your petition stems from a report published in 2006. Neither the Department of Health nor the Department for Work and Pensions (DWP) were involved in producing the report and have no plans to respond to its findings. The recommendations in the report have since been surpassed by updated guidance from the National Institute for Health and Clinical Excellence for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

Professors Peter White and Simon Wessely hold Chairs in Psychological Medicine at London University. They have an international reputation in the clinical management of and research into several medical subjects, which include CFS/ME. As such, many organisations including government Departments will draw on their expertise. These doctors have been asked to provide factual clinical information about medical conditions and have no interest in the outcome of state benefit decisions or those made by the insurance industry. They have an ethical obligation to provide advice to the best of their knowledge and the Government is confident that they have done this in their advice to Departments.

Professor White has advised DWP in the development of guidance for Disability Living Allowance Decision Makers in a number of psychiatric conditions. He has also provided medical advice on CFS/ME and other related medical conditions. In addition to Professor White, DWP has also consulted with other medical experts with an interest in this condition including a rheumatologist, immunologist, occupational therapist, rehabilitation specialist, and physiotherapist. The guidance was also reviewed and discussed extensively with ME charities, welfare rights groups and their medical advisers who provided many helpful comments, which were included in the guidance wherever possible.

Professor White has provided his independent medical expertise to the insurance industry to help them to understand the medical issues when considering developing policies and deciding claims. As far as UNUM is concerned he has only ever attended one meeting organised by UNUM several years ago, but only as an independent specialist. This involvement in no way compromises the expert medical advice given to the Department, and his insurance consultancy work has always been known to the Department.

Professor Simon Wessely has not been involved in the development of CFS/ME guidance but has advised with guidance developed for some psychiatric conditions. He has served as a member of Dame Carol Black’s working group on employment. As far as UNUM is concerned Professor Wessely has not given advice, but has spoken at two UNUM sponsored medical meetings.

The term Chronic Fatigue Syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability.

A characteristic feature is fatigue/malaise that follows minimal exertion. People with CFS often describe the fatigue as being of a type and a scale beyond any other they have experienced. The illness may affect both physical and mental functioning, including cognitive function. Accompanying symptoms may include poor sleep, pain, poor concentration and memory, although this list is not exhaustive.

CFS is also known as Myalgic Encephalomyelitis (ME) and post-viral fatigue syndrome. There is some difference of opinion over whether ME is different from CFS; however, most authorities refer to the condition as CFS/ME.

CFS/ME is identified by its symptoms and disabling effects, and by excluding other medical conditions that could explain them. There are no confirmatory abnormal findings on physical examination, nor is there any specific investigation such as an abnormal blood test that is diagnostic. This does not mean that CFS/ME is not a real illness.

The classification of CFS/ME is confusing and controversial since there are five different World Health Organisation categories that could be chosen by a doctor to describe the illness. The Department of Health classifies the illness as neurological (G93.3). Since eligibility to State Benefits depends more on the severity and nature of disability and its effects, rather than the particular diagnosis, this issue is not central to the guidance developed by DWP. For the purpose of Disability Living Allowance the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered “physical.” For this purpose, CFS/ME is classified as “physical.”

 

This petition had not to my knowledge been widely circulated. Had it been brought to my attention with a view to my promoting it on this site, I would have alerted the petition’s creator to the following and suggested that the wording of the petition might be amended.

Had the creators of this e-Petition checked the Register of All-Party Groups before submitting their petition, they would have established the correct name and status of the group which undertook the “Gibson Inquiry”.

The All-Party Parliamentary Group on ME was not responsible for undertaking the “Gibson Inquiry” or publishing the “Gibson Report”.

This unofficial inquiry had been undertaken by an ad hoc group set up by former MP, Dr Ian Gibson, specifically to carry out the “inquiry” because Dr Gibson had been unable to achieve the instigation of the “full”, “high level” and “independent” inquiry he had been seeking within the very short time frame he had set for himself.

Dr Gibson chaired the panel, himself, and it was Dr Gibson who decided whom he would invite onto his panel.

It is the case that the “Gibson Inquiry” panel included some office holders of the APPG on ME and others associated with it. But the inquiry was undertaken independently of the APPG on ME and it did not report to the APPG on ME, in the sense that it was accountable to the APPG on ME, it was accountable only to itself.

The group was registered with the Office of the Parliamentary Commissioner for Standards as “The Group on Scientific Research into ME” (GSRME). 

Most, but not all, groups are on the “Approved List” of All-Party Parliamentary Groups and Associate Parliamentary Groups. The Group on Scientific Research into ME was not on the “Approved List”.

Because of its registration status, under the Rules on All-Party Groups the GSRME group was bound by different requirements for its convening and different rules for its operation, one rule being that it was not permitted to refer to itself as an “All-Party Parliamentary Group”. 

In January 2007, Philippa Wainwright, Office of the Parliamentary Commissioner for Standards clarified that:

“Because the group is on the Register of All-Party Groups it is entitled to use the House emblems (eg the Portcullis) on any of its documents (eg reports, press notices, agendas) and on its website, and it is also allowed to give ‘House of Commons’ as its address on its letterhead.

“However, groups that are not on the Approved List are not allowed to use the terms ‘All-Party’, ‘Associate’ or ‘Parliamentary’ in their title, In the light of what you say, I shall write to the group reminding them of the rules on this point.”

And clarifying the authority of the report that was e-published, only, by the GSRME, in November 2006, Ms Wainwright wrote:

“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.”

In terms of status, then, the GSRME sat on the lowest rung of parliamentary groups beneath that of All-Party groups.

The group disbanded in May 2007.

A pro bono website was placed at the disposal of the group which remains online, drifting like the Marie Celeste, here:  http://www.erythos.com/gibsonenquiry/

The APPG on ME’s website is this one:  http://www.appgme.org.uk/

 

The more recent inquiry into NHS service provision for people with ME, chaired by Dr Des Turner (who will be standing down at the election, and thus from office of chair to the APPG on ME) was undertaken by the APPG on ME.

This inquiry has published only an “interim” document and it remains unclear whether it intends to publish a final report before the group is dissolved at the forthcoming election (as all All-Party Groups will be).

If the APPG on ME is to continue beyond the election, a new group with a new chair and a new committee with 20 “Qualifying Members” (parliamentarians) will need to be convened.

As with the NHS service provision inquiry, the “Gibson Inquiry” was an unofficial inquiry.

The report that came out of the “Gibson Inquiry” does not have the authority of either House of Parliament nor any government department; it was not a commissioned inquiry nor the product of a select committee, standing committee or any other Parliamentary Committee.  It had no funding, no dedicated administrative staff or resources and as stated above, was accountable only to itself. 

It is incorrect to refer to the “Gibson Inquiry” as a “Parliamentary Inquiry”, a “government report” or an “official report” since it is none of these: no department or minister was obliged to respond to its recommendations and Dr Gibson and his panel received no responses to their report.

The APPG on ME had planned to try and secure the interest a select committee in its findings and recommendations for its own inquiry into NHS service provision. But only a very brief document has thus far been circulated by the APPG on ME chair (and note, not as a document for comment or discussion).

 

The Secretary to the GSRME resigned the day after the report was published. The group began to disassemble and formally disbanded in May 2007.

The No 10 e-Petition Response notes that:

“For the purpose of Disability Living Allowance the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered ‘physical.’ For this purpose, CFS/ME is classified as ‘physical.'”

The “Gibson Report” got this wrong (and there were other errors in the report).

In January 2007, Dr Gibson held a public meeting in London to discuss the content of the report and how it might be used as a campaigning tool. Dr Charles Shepherd (ME Association) and other national patient organisations and advocates had brought a number of significant errors, misconceptions, contradictions, omissions and ambiguities to the attention of Dr Gibson and what remained of his panel. Dr Gibson argued the toss over the issue of the panel’s misconception over entitlement to higher rate DLA, but he did eventually agree that the error the panel had made in its report would be corrected and that other problems with the report would be attended to. (Unofficial Transcript: Public Meeting of the GSRME, January 07)

But it was not corrected: once the public meeting to discuss the content of the report had been held, Dr Gibson was unable to get his panel to discuss making any amendments and the report remains entirely unamended. This misconception over higher rate DLA by the “Gibson panel” has been reiterated by the press on several occasions.

When drawing up the inquiry’s Terms of Reference, no procedures had been put in place by the panel for dealing with errors in the report; it was published without consultation and sent out to 600 odd MPs, to the Chief Medical Officer and various government ministers, complete with errors, before the ME community and ME patient organisations had had sight of it.

When it comes to inquiries be careful what you wish for.

I may comment at a later date on the content of the Number10 Response.

ME Association: Board of Trustees meetings: 18 and 19 January 2010

ME Association: Board of Trustees meetings: 18 and 19 January 2010

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

MAY BE REPOSTED

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, 18 January 2010 and on Tuesday morning, 19 January.

Informal discussions also took place on a number of issues on the Monday evening.

Please note that this is a summary of the two Board meetings – not the official minutes.

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

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman, who joined by telephone link up
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
Janet Thomas (JT)

MEA Officials:

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

Apologies:

Rick Osman (RO)

FINANCES, STAFF AND PREMISES

ED updated trustees on the current financial situation.

Trustees discussed the monthly management accounts for the period up to the end of November 2009. Despite a drop in some areas of income during the past few months, unrestricted donations in particular, the overall income for general funds continues to remain roughly in line with expenditure over the accounting period covered so far in 2009. Membership income is running slightly ahead of the same period in 2008 – which reflects a steady growth in new members joining the MEA throughout the year – as is income from fundraising events.

Trustees discussed some interest gaining options for the business and Ramsay Research Fund deposit accounts that are held in reserve.

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

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

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

Permission to Repost

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

RiME Summary of APPG Meeting 2/12/09

Dec. 1

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

Dec. 2

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

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

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

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

Dan Ward Norfolk Group said yes.

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

Nicky Zussman said she agrees with Paul’s point.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Overview    Control Freakery Taken to New Heights?

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

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

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

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

3. Are these two misguided organisations misleading politicians?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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