From Paul Davis RiME Campaigning for Research into Myalgic Encephalomyelitis
16 September 2010
APPG on ME Inquiry into NHS Service Provision for ME/CFS March 2010
There is a link to the full Report on the RiME Website, see NHS Services Inquiry folder.
The Report was signed by five members of the APPG on ME: Des Turner MP (Chair), Tony Wright MP, Andrew Stunell MP, Peter Luff MP, Lady Mar.
Note: The Committee on Standards in Public Life promotes, ‘high standards in the public sphere through the seven principles… ‘: they include: objectivity and honesty. Have these criteria been met?
In the Foreward P.3 Des Turner writes, ‘… The APPG accepts the WHO Classification of ME (ICD G93.3) as a neurological condition… ‘ However, if one flicks to the back of the Report, 14 out of the 24 sources refer to Government Reports (1), with the Royal College of GP’s Report, connected to CMO Report and NICE Guidelines, being used seven times; sources which are not about the illness described by G93.3. The Inquiry Group also received evidence from PCTs: but ME patients complain that clinics set up following the CMO Report are not about ME; the clinics in Kent, for example, exclude patients with neurological illness; so, is the evidence from PCTs accurate or relevant as far as ME is concerned?
The Terms of Reference say (P. 21):
…ME is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of ME or else adopts the hybrid CFS/ME in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to only use the precise WHO classification of ME above will impede access to information from the NHS that is crucial to the success of this inquiry…
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:
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
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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
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.
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.
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.
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:
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.
• 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.
• 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.
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:
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.”
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.
RiME Campaigning for Research into Myalgic Encephalomyelitiswww.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.
Mr Ellis, who resigned as Chair and Trustee of the ME Association Board of Trustees in February 2004, wrote to Dr Des Turner, MP, a few weeks ago, after reading the Minutes of the December meeting of the All Party Parliamentary Group on ME.
Mr Ellis has kindly given permission for his letter to be published on ME agenda and Co-Cure mailing list and is to be commended for speaking out so passionately in support of those members of the ME community who struggle to attend these meetings and who represent the interests of those unable to participate.
Des Turner MP
APPG ON CFS/ME
House of Commons
London
08 February 2010
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 M.E. 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 M.E., 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 M.E. 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.
– 2 –
Turning now to the APPG report itself, the hotly disputed subject of CBT and GET treatments receives a bias which is unacceptable to the RIME faction I would think The minutes themselves show that the Minister himself has some reservations when he says “concerns have been expressed about the acceptability, efficiency and safety of several treatments including CBT and GET”. The report finds that these objections “might relate to the fact that they are not being delivered by properly trained healthcare workers”. Indeed a plausible concern and yet the obvious possibility that they just do not work and are dangerous when applied to M.E. sufferers (as distinct from the CFS hotchpotch) is not expressed. (Could it possibly be that I might be able to use the Psychiatric terminology that some people are “in denial” about such a hypothesis?). I would like to have been better informed about the submissions behind the report’s words “in part due to the fixed attitudes about causation by some health professionals”.
I would like to think that a more sympathetic manner will prevail towards Mr Davis and RIME in the future. I do believe that it is quite possible to remove most of the rancour if one simple action is taken.
And now I must offer you MY OWN APOLOGIES for the vehemence of the above words addressed to yourself. As the father of a young woman who, in her early twenties, contracted ME, who has continued to suffer a variety of severe symptoms (chronic “fatigue” indeed) for around 15 or so years AND has had to bear the “yuppie flue” stigma and the outrageous statements made by certain so-called eminent psychiatrists in the early years, I ask for your forgiveness. Yours is not an easy job, indeed.
Let us rid ourselves of much of the disputation at APPG meetings; let us achieve a more unified approach by ME organizations; just one simple and, what is more, virtually costless manoeuvre might well do the trick. Let us take the SPECIFIC application of the psychiatric initiatives out of the SPECIFIC ME equation. Let us simply re–name the local area clinics and associated baggage, which have hitherto been designated to ME, and let the new name reflect a comprehensive application of psychiatric treatments to any number of appropriate medical conditions. Given that it must be assumed that the medical profession approve of the likes of CBT and GET and must also be satisfied of the cost effectiveness of the present setup, surely it cannot be that such treatments would not benefit the recovery in a wide variety of illnesses.
Once removed from the equation SPECIFICALLY currently applied to ME, the hotly disputed psychiatric contribution to the subject would no longer be pivotal in causing such havoc in the realms of ME politics. You and the APPG would have a far quieter life, the Minister would have a much smaller angry postbag, the medical establishment would not I feel be terribly aroused and the cost would be minimal. Any mileage in this?
The APPG on ME 1999-2009 has been disappointing. RiME doesn’t feel it has been fighting the corner of people with the illness described by ICD-10 G93.3; rather, it has been more a vehicle for promoting Government policy.
Central to this view is the Group’s position on matters of nomenclature and classification; its imprecise and cavalier attitude, in this respect, will become clear as the text unfolds…
1999 – 2005 The Wright Years
During this period, the composite term ‘CFS/ME’ has been used. It is used, Tony Wright MP Chair of APPG said, because it is the official term used by the Department of Health and Chief Medical Officer. Meetings were dominated by the CMO/MRC Reports (not about G93.3 ME) which used ‘CFS/ME’ and the type of treatments they recommended, notably GET and CBT. Mr. Wright said that GET/CBT benefit people with ME; the basis for his view – York Review 1 (not about G93.3 ME). Mr. Wright has connected the clinics set up following the CMO Report to the causation of ME. And re. the MRC funded PACE Trials, he has supported the use of the Oxford Criteria.
The APPG was a ‘closed-shop’ at this time. And it invited to its meetings parties favourable to the CMO Report (there is a widespread feeling that the APPG is biased toward AfME and the MEA). Those who didn’t support the CMO Report eg RiME, 25% Group, MERGE, Hooper et al. weren’t invited.
The pivotal issue of biomedical ME research was neglected.
A lot of ME parties wrote to Mr. Wright with concerns; some communications were inadequately answered; others not answered at all.
For a more detailed appraisal of the above, see RiME website – Petition to Committee on Public Standards re. Conduct of APPG on ME 2005.
APPG 2005-9 The Turner Years
In July 2005, Tony Wright resigned as Chair and was replaced by Dr. Des Turner MP.
Same old, same old…
At the November 2006 Dr. Turner circulated a document which said the APPG does recognise the G93.3 code. Does it?
In the Autumn of 2005 we discovered that the Sussex Group had hosted a meeting involving Dr. Turner, AfME and the MEA. And that a business plan for the APPG had been discussed involving issues such as supporting the development of the NHS services; each of the three ME organisations in attendance have demonstrated support for the clinics set up following the CMO Report.
At the next APPG meeting November 2005, representatives from AfME and the MEA were invited to speak about the clinics, which they did favourably.
More time has been awarded to the clinics than any other issue. Recent meetings, of course, have been to do with the NHS Inquiry, which is being chaired by Dr. Turner. In the same vein as Mr. Wright, Dr. Turner seems well-disposed toward the CMO report and the clinics. At the APPG meeting 2/7/08, he said he expected the inquiry would be taking evidence on progress (? – ed.) made since the CMO Report in January 2002 (is Turner not prejudging? – ed.). And he signed the Gibson Report whose authors said they were extremely pleased with the advent of these centres and hoped they will be maintained and rolled out (the Report said they were to his [Wessely’s] model).
In short, a similar pattern…
Meanwhile, the matter of publicly funded biomedical ME research continues to be neglected.
Returning to the caucus meeting Autumn 2005: RiME wrote to the Parliamentary Commissioner, and Dr. Turner was asked to explain his actions. It seemed to be primarily as a result of this meeting that APPG meetings got opened up to the public.
Having attended 10 meetings now, I would say that a number of meetings have been poorly chaired with persons expressing legitimate concerns not being well treated eg the July 2007 meeting where the Chair Des Turner allowed Paul Davis RiME to be interrupted and heckled (while I was speaking he appeared to sit there smiling); concerns regarding the way I was treated and the way the meeting was chaired were voiced at the next meeting (January 2008).
That meeting was little better. Chaired by Dr. Ian Gibson MP, I was again interrupted and heckled; and, again, the Chair did not keep control or act fairly. In each case the APPG Code of Practice was not implemented. At the latter meeting, a person presented a petition signed by over 500 raising concerns about the clinics. The Chair asked whether or not the matter should be included in the minutes.
Again, a lot of letters sent to the Chair with concerns have gone unanswered.
Re. the issue of the clinics: RiME has raised the concerns of ME patients at several meetings (see RiME website, APPG meetings). Notable concerns: the clinics are not about G93.3 ME; criticism of GET/CBT.
Secretariat (AfME and MEA):
(i) Minutes to meetings: The Secretariat has disappointed. One notable example was the July 2007 meeting where (a) RiME’s comments were reported inaccurately (b) important points made by RiME were omitted altogether (see RiME website – APPG meetings). But there are others – Doris Jones 25% Group said at the next meeting that controversial subjects are not always included in the minutes.
(ii) ME patients feel that the influence of AfME and the MEA within the APPG is disproportionate to the number of ME patients they represent (probably not 5% between them). It is apparent that their role within the APPG is not purely secretarial but has been to do with policy matters.
(iii) ME patients fear that their disproportionate level of influence may extend to the Legacy Paper. Other parties who have attended APPG meetings regularly and contributed must be allowed their fair say, and this must be demonstrated in the final document.
Venue for Meetings
Meetings seem to be in just about the most inaccessible part of the Palace of Westminster, making it difficult for disabled persons, especially those in wheelchairs. I have requested a number of times that meetings be held at Portcullis House (venue for April 2006 meeting) but nothing changes; moreover, I have not been told why meetings can’t be held at Portcullis House.
Summary
We deem the best criteria for adjudging the APPG 1999-2009 is to simply ask the question, ‘are ME patients better off now?’ Answer: No. Indeed, many would say they are worse off. The text above has focused upon concerns re. services and research. But are there not still problems in other areas such as welfare and child protection?
If those running the APPG were to counter by saying, we are essentially about awareness, not lobbying – then two questions come to mind (1) is awareness enough? (2) has the APPG been portraying an accurate picture eg has it painted too rosy a picture re. the clinics?
RiME recommends:
1. A fresh start with five new officers following 2010 General Election (it would seem there will be many new MPs entering Parliament).
2. An independent Secretariat.
3. Detailed attention to matters of nomenclature and classification.
The All Party Parliamentary Group on M.E. (M.E. as defined by the World Health Organisation) will formally break up for the forthcoming General Election (date to be confirmed.) The Group leaves the following legacy paper to the APPG that will be reconstituted after the election, so that the work that has been carried out over the last four years will be clear and may continue as seamlessly as possible.
The APPG operates a code of practice, circulated November 2006 (see Appendix.)
Background
1. APPG on ME Inquiry into NHS services
A Report to the Chief Medical Officer in January 2002 led to the announcement by Government in May 2003 of an investment of £8.5m over two years in a centrally planned programme to set up new clinical services for people with CFS/ME in England. In 2009, the APPG held an inquiry into NHS services in England.
The inquiry’s interim report was released on 3 December 2009, making 11 recommendations to improve health and welfare services for people with M.E. The final report will be published on 10 March 2010. The recommendations are unchanged.
Issues to address:
a) How to follow through recommendations.
2. Group on Scientific Research into Myalgic Encephalomyelitis (M.E.) or GSRME
This Group was chaired by Dr. Ian Gibson and was constituted as a Registered Group which was not on the Approved List. The Group was composed of Parliamentarians who were for the most part members of the APPG on ME, and the formation of this group arose out of the work of the APPG on M.E.
The GRSME report dated November 2006 concluded that the research areas defined by the CMO Report in 2002 had not been addressed. The report’s final conclusion was that further research is the single most important area in this field and that the UK should take this opportunity to lead the way in encouraging biomedical research into the potential causes of CFS/M.E.
Many members of the M.E. community did not consider that the report went far enough by simply calling for parity between public money spent on psychological and biomedical research into M.E., as M.E. suffers and carers wanted public research money spent only on biomedical research.
Ongoing work / areas of concern
1. Research
Following the CMO’s Report in 2002 the Medical Research Council (MRC) set up a Research Advisory Group in 2003 which was made up of independent scientists and patient representatives, to develop a research strategy.
The advisory group made a number of recommendations, in particular that in the short term the research community should be encouraged to develop high quality research proposals addressing case definition, understanding of the symptoms of CFS/ME, and new approaches to disease management. A ‘Highlight Notice’ was placed to ensure that research into CFS/ME would receive priority funding. This approach has not succeeded in attracting enough high quality research proposals that have been funded by the MRC, and a new initiative is needed.
In 2008 the MRC set up a new Research Expert Group under the leadership of Prof. Steven Holgate of Southampton University to review current research, identify research opportunities and encourage new research towards understanding the basis of CFS/ME.
Issues to address:
a) Review the work of Prof. Holgate’s expert group on research
b) Monitor future allocation of funds for bio-medical research into CFS / ME and the proportion spent on research into paediatric and the most severely affected M.E. patients.
c) Press for the establishment of at least one specialist M.E. Research Centre to provide a multidisciplinary biomedical research environment to support and provide access to appropriate clinical, educational and support services based on an enhanced understanding of the multisystem organic symptoms suffered by those with M.E. and the disabilities they produce.
2. National Institute for Health and Clinical Excellence (NICE) guidelines
NICE published Guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children, in August 2007.
The Guideline has been criticised by some patient groups as being not fit for purpose and was the subject of a Judicial Review at the High Court in London, February 2009. This aimed to overturn the Guideline’s recommendations for the treatments of Cognitive Behavior Therapy, CBT and Graded Exercise Therapy (GET) as the only effective treatment for CFS/ME, and to open up biomedical treatments precluded by the Guideline. The Judicial Review found in favour of NICE.
The NICE CFS/ME Guideline will be reviewed by NICE from August 2010.
Issues to address:
a) The Guideline focuses on chronic fatigue and not M.E. as defined by the World Health Organisation. Diagnostic criteria used in the Guideline are too broad. The Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS of 2003 may be a useful starting point
b) NICE places an over-emphasis on randomised control trial (RCT) evidence over and above evidence from expert clinicians and especially patients.
c) Some M. E. sufferers and carers points to the interpretation and implementation of the Guideline as having an essentially “psychiatric” approach.
d) The NICE Guideline should be be reviewed in the light of emerging viral research, which should include the possibility of establishing testing and treatment for Xenotropic Murine Leukemia Retrovirus (XMRV), herpes and enteroviruses and other infections which may be found in people with M.E.
e) The review should revisit NICE’s management guidance on ME/CFS, in particular the mounting evidence for the need to broaden the range of appropriate therapies beyond CBT and GET, and to specify that all such therapies should be delivered by specifically ME/CFS trained professionals.
3. Welfare benefits and social care
M.E. suffers who are too ill to work and their carers, who may also be unable to work as a result of their commitments as a carer, are exceptionally vulnerable within the welfare benefits system. They face a number of very significant problems and hurdles in being able to successfully access, claim and retain their state benefit entitlements including Disability Living Allowance (DLA), Carers Allowance (CA, where applicable), Attendance Allowance (AA) Incapacity Benefit (IB) and more recently, Employment and Support Allowance.
There are serious issues with the Department for Work and Pensions (DWP) and Jobcentre Plus staff. Doctors and assessors in subcontracted medical services and decision makers often do not understand M.E.
Problems involved in benefit-claiming, assessment and decision-making have been illustrated by the high number of awards made at the appeal stage after rejection of the first claim.
Current social care proposals will have a significant impact on people with long-term conditions, in the short term and as they get older. The current economic climate threatens the provision of welfare support to those who need it most.
Issues to address:
a) The introduction of the new Welfare Reforms and how these affect people with M.E. In particular the impact and effectiveness of Employment and Support Allowance (ESA),Work Focused Interviews and Health Related Assessments.
b) The need for appropriate support from Government and employers for people with M.E. and other “fluctuating” conditions who want to stay in or return to work.
c) The impact of National Care Service proposals and the effect of these changes for people with M.E. eg. personal budgets and direct payments of personal allowances such as Disability Living Allowance (DLA) and Attendance Allowance (AA) to Social Services.
d) Improving knowledge about M.E. within local authority Social Services departments, the Department for Work and Pensions (DWP), Jobcentre Plus, subcontracted medical services.
e) The need for a fairer set of criteria / guidelines for CFS/M.E. claimants / patients to be issued by DWP and the Department of Health.
f) Review the current Occupational Health Guideline on CFS/ME used by the Department of Health for its own staff which acts as a benchmark in the health insurance industry.
4. Child Protection Issues
Some children with M.E. and their families are caught up in unnecessary, damaging and distressing child protection conferences and care proceedings because there is misunderstanding about M.E. amongst teachers, social workers, health workers and other professionals. Guidelines published by the Royal College of Paediatrics and Child Health in 2004 have largely gone unnoticed and have not had any real impact on the situation.
Issues to address:
a) Consider the needs identified by children and young people’s ME charities for:
(i) The Department for Children, Schools and Families to alert Social Services professionals to the frequency of misunderstandings in cases of M.E. There should be an investigation into the cost of pursuing these cases.
(ii) All parents under suspicion of putting their child at risk should be informed of their rights, and given information clarifying child protection procedures and details of organisations which can support them
(iii) Directive to be issued by the Royal College of Paediatrics and Child Health for all paediatricians to refer to the college’s guideline when treating children and young people with M.E.
(iv) M.E. to be included in the training of all GPs and paediatricians.
(v) M.E. education for all teaching professionals.
5. Mental Health Act and Mental Capacity Act – the implications for M.E.
Although the Government made important concessions to protect patients and their families, there have been concerns that the Bill might increase the number of people sectioned for refusing treatment. There was a risk of over-use of community treatment orders and there were concerns about the powers given to clinicians.
Issue to address:
a) Plan a discussion at a future APPG meeting inviting witnesses and considering documents and case-histories.
6. Occupational Health and NHS Plus guidance
The APPG played an active role during 2007 in obtaining changes to the NHS Plus guidance on occupational health that is aimed at employees, employers and occupational health staff.
Issue to address:
a) Work related issues, including strategies for returning to work on a flexible or part time basis, and ill health retirement for those who are unable to return to work, continue to cause considerable difficulties for people with ME/CFS.
Programme of work
1. Consider how to take forward issues to be addressed in 1-6 above.
2. Consider future opportunities for adjournment debates (last suggested July 2007; attempt unsuccessful)
3. Consider future opportunities for Early Day Motions (last suggested 2007 but deferred)
4. Possible APPG speakers:
· Chief Executive of the Medical Research Council (last spoke April 2006)
· Chair of the NHS CFS/M.E. Clinical & Research Network and Collaborative (CCRNC) Conference (last spoke Nov 2005)
· Secretary of State for Work and Pensions (previously spoke Nov 2006, Oct 2008)
· Chairman of the National Institute for Health and Clinical Excellence (last represented Feb 2007)
· Secretary of State for Health Services (last represented by Parliamentary Under Secretary of State for Health Services, January 2008)
· Chairman, Care Quality Commission
· Inspector of Social Services
· Human Rights Lawyer (relates to Mental Health Act and Mental Capacity Act)
· Representative from mental health charity (regarding sectioning rights)
5. Encouraging more MPs and members of the House of Lords to join the APPG and take an active part in the proceedings
Structural issues
The new APPG on M.E. may consider the following in order to review the new Group’s structure :-
1. Reviewing the Terms of Reference for the APPG on ME.
2. Reviewing the “Code of Practice for the APPG on M.E.” (See appendix.)
3. Drawing up a structured and prioritised Work Plan and programme of work, and an annual schedule of meetings each year, to accompany the Work Plan, which the APPG ought to revise and review annually at the APPG’s AGM. The Work Plan should be able to be adjusted at each APPG meeting to meet the prevailing needs of the day, and there should be an item on the agenda of APPG meetings entitled “Work Plan” for this purpose.
4. Consider making available a slot on the agenda of its meetings for members of the Public to raise items of concern in accordance with the terms of reference of the APPG on M.E.
5. Should the APPG on ME adopt the specific political objective of seeking parity between M.E. and other neurological and immunological medical conditions such as Multiple Sclerosis and HIV/AIDS?
6. The current Group has committed itself to using the World Health Organisation (WHO) Classification of M.E., for its work. However, it has not committed itself to the use the WHO International Classification of Diseases, ICD Classification Code for M.E. listed in the Neurological Chapter of the WHO ICD – 10 at G93.3, which is the single code the WHO uses for M.E. The new Group may wish to revisit this issue.
APPENDIX: Code of practice for the APPG on M.E.
1. The APPG and the Secretariat (Action for M.E. and the M.E. Association) accepts the WHO Classification of M.E. as a neurological condition and welcomes the recognition by the Department of Health of M.E. as a long term neurological condition.
2. The APPG strives to support the improvement of health, social care, education and employment opportunities for people affected by M.E.
3. The meetings of the APPG are held in public and it is expected that attendees will adhere to the principles of best practice in meetings:
Attendees will abide by the APPG Governance Procedures and Practices
This means that the attendees will honour the policies set up by the APPG to govern its own activities, including meeting protocols, committee rules etc. It is anticipated that attendees will follow basic rules of personal courtesy, attendance and being prepared. The APPG and the Secretariat recognise the connection between the behaviour of individuals in meetings and the ability of the APPG to address its business effectively. Attendees will be expected to participate so that APPG business progresses smoothly and efficiently.
· Participants will give apologies ahead of time to the Chair if unable to attend meetings
· The Secretariat will ensure that information is distributed prior to meetings, allowing participants time to read and digest important information ahead of a discussion
· Attendees will honour the authority of the Chair and respect his/her role as the meeting leader. When problems arise with meetings they should be dealt with as procedural issues rather than a personal criticism of the Chair and other officers.
· Participants will engage in debate according to procedures, maintaining a respectful attitude towards the opinions of others whilst making their own point.
· Attendees must express their views clearly when it is their turn to speak and then allow others to express their opinions in turn.
· Attendees must listen respectively to other meeting participants, to the Chair and to other speakers. They must not attempt to silence minority opinions, nor should they talk over others.
· Attendees must not use their mobile phones in meetings or adopt any other bullying tactics.
· Attendees are invited to offer suggestions to the Secretariat or the Chair on how best to enhance the role and function of the APPG.
These guidelines are produced as a method of efficiency. If an individual attendee does not comply with the code the Chair may institute a warning system. The APPG anticipates that debate should be lively but controlled and every effort will be made to hear a wide range of different opinions and elicit the opinions of those who may be inclined to be silent.
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.”
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!
“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 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.
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.
[Date of next meeting of APPG on ME announced as Wednesday 10 March 2010]
Update @ 4 February 10
Corrected version of transcript now appears below and in the Word File above. Note that these corrections do not address the misattributions at the end of the meeting.
Edit: I have been asked to note that statements made by Nicky Zussman and recorded in the official transcript have been misattributed to Michelle Goldberg and that a request has been made to the APPG on ME Secretariat for amendments. Questions raised with the Chair, towards the end of the meeting, by John Sayer, have been misattributed to another attendee.
Because of the controversy surrounding the chairing of this meeting I am publishing an extract from the official verbatim transcript of the opening minutes.
(Transcript prepared through the offices of the parliamentary stenographer service, for the purpose of which an audio recording of the meeting was also made). I am told that a documentary production team (who were not filming) was also present, although its presence and purpose was not announced to the meeting.
It is understood that Dr Des Turner, MP, Chair of the APPG on ME, intends to stand down from his seat at the forthcoming election and and that he will be taking up a seat in the House of Lords.
Extract from official verbatim transcript: 2 December 2009
Des Turner MP (Chair): Good afternoon Ladies and Gentlemen and welcome to the all-party group on ME. Sir Peter Spencer has distributed a document to you, which is the interim report of the inquiry. We will discuss that in a short while but you have a chance to have a look at it before that.
I am glad to see so many people here this afternoon. The inquiry is the main topic of this meeting. Blood was sweated over this, but the piles of evidence were such that given the limited time and resources available to the group, we were not able to bring together a report with which we were totally satisfied—we nearly managed it, but not quite. Therefore, we decided to produce an interim report that contains the findings. Those findings are not going to change. The conclusions and recommendations of the report stand as they are in the interim report. The rest of the report has been reduced to a very brief introduction. We hope to produce the full report in due course, but it will contain the same recommendations and conclusions. They are as clear as daylight as far as the group is concerned, and are taken from the evidence. We thought it prudent to get something out as soon as possible, so that we could produce some effect with the recommendations. That is why the document is somewhat truncated. However, as I have said, the recommendations stand.
Paul Davies: A report has been handed out by Sir Peter Spencer. What was the consultation on that interim report?
Chair: This is the report. Let me make it clear that an all-party group is a group of parliamentarians. That group of parliamentarians has produced this report.
Paul Davies: But did you consult with Action for ME and the ME Association?
Chair: Yes, we did.
Paul Davies: Why did you consult only with those organisations?
Chair: Because they are the only groups who gave us any assistance. They are the only people who assist with the business of running this group. If you would offer to help with the secretariat you might get consulted, but you don’t.
Paul Davies: Yes, but the point is that this shows bias towards those organisations.
Chair: I am sorry. This does not show bias to anyone.
Paul Davies: It does because those organisations—
Chair: That is your opinion. This report is our assessment of the evidence. It is not biased for or against anyone.
Paul Davies: It is biased because you only consulted with Action for ME and the ME Association. Those groups support the clinics that we believe the large majority of ME patients do not want.
Sir Peter Spencer: May I make a quick point? The Minister will not have much time. Perhaps we could talk about this matter properly afterwards and have a proper discussion. Otherwise, the Minister will leave before we have had time to make use of his presence. We should get on with the main business.
Chair: I quite agree. Those comments bear no relation to the report. Can we get on with the report?
Paul Davies: They bear relation to those patients who do not want these clinics.
Chair: We will have that discussion afterwards. I know you feel that you represent millions of patients, but I do not think that you do. We will have that discussion afterwards. We are here to discuss the report.
The report is before you and the recommendations speak for themselves.
Ciaran Farrel: I was going to ask for some reading time. Perhaps we could go briefly through the report and the recommendations, so that we can understand what the Minister has to say.
Chair: You don’t know what I am about to say. To be honest, I am beginning to lose patience with you two. You would stretch the patience of any Chairman.
Countess of Mar: May I propose that these two people be evicted from the meeting so that we can carry on our business?
Chair: That would be the sensible thing to do. You two people spend most of your time trying to disrupt the work of this group.
Nicky Zussman: I don’t agree. I think that they bring important points.
Chair: I have yet to hear one.
Countess of Mar: In that case, I am going to leave. I am not prepared to waste my time listening to you when I have other things to do. I am sorry. I will not stay in a group with people who cannot behave themselves in a meeting and listen to the Chair.
[Countess of Mar leaves]
Chair: If you are not prepared to be quiet or leave, I will terminate this meeting. What will you do?
John Sayer: I am sorry Mr. Chairman. Why are you looking at me? It is the first time I’ve been here. I am a bit surprised at how things have gone so far.
Chair: So am I—surprised and exceedingly disappointed.
Nicky Zussman: We are the ill people. It is us who are being described. It is 11 years since the CMO’s working group was convened, and we are still being told what to do like very young children. I think that Paul has a point.
Chair: The Countess of Mar has put a lot of work into this. She works very hard to support ME sufferers, but she has just left in disgust. I feel very inclined to do so myself. If you wish to terminate the work of this group, continue with this utterly pointless discussion.
Nicky Zussman: We are not at school.
Chair: You are not at school, and you are on your own.
Janet Taylor: Please do not leave, Dr. Turner. I have come all the way from Yorkshire. I want to hear the Health Minister. I have important things to say.
Chair: I am sure you do. I am sorry, but we seem to have an element that is determined to be disruptive and does not want to listen to anything. Some people only want to rake over the coals of arguments that they have been making for years which lead absolutely nowhere. They are greatly to the detriment of the ME community.
Mary-Jane Willows: May I speak? On behalf of those patients who value and respect the work that you have tried to do for many years, I understand where you are coming from. I ask you to try and finish what you were saying. If you are interrupted again, I totally respect your decision to leave. I beg you to try once more and speak, without interruption.
Janice Kent: I second that.
Chair: Alright, but one more interruption, and I will call the police to remove you.
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