Summary of ME Association Board of Trustees meetings 14 and 15 June 2010
ME Association | 17 June 2010
This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees.
These meetings took place at our Head Office in Buckingham on Monday afternoon, June 14th and on Tuesday morning, June 15th 2010.
This is a summary of the Board meetings – not the official minutes.
The order of subjects below is not necessarily in the order that they were discussed.
MEA website: http://www.meassociation.org.uk
Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Rick Osman (RO)
Janet Thomas (JT)
FINANCES, ADMINISTRATION, PREMISES AND STAFF
ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of April 2010. There has been a drop in some areas of income during the past few months when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is currently running slightly ahead of unrestricted income.
However, income from fundraising has shown a significant and welcome increase over the same period in 2009 and in order to cope with the increased demand on fundraising support services it was decided to create a new part-time post to deal with fundraising administration with immediate effect. Details about this new post will be placed on the MEA website when trustees have agreed the job description.
There has also been a significant increase over the past twelve months in the ring fenced funding held by the Ramsay Research Fund for research purposes.
Trustees once again reviewed the current ‘best buys’ for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.
The new computer equipment for Head Office staff is now fully installed and working in a satisfactory manner. GB reported that a few minor problems have still to be resolved.
Trustees discussed some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.
Trustees passed on best wishes to Lucy Kingham, at Head Office, who will be taking maternity leave in October.
Trustees held a further discussion on the future growth of the MEA. This work includes looking at areas of priority for expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so.
Trustees followed up some points from a presentation given by a professional fundraiser to the previous meeting in March. This had covered all the various options that a charity such as 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 of research grants – and the most efficient ways of developing and supporting fundraising.
The recommendations and advice was particularly relevant to the current general financial situation whereby people are reducing donations to the charity sector. At the same time, demand on support and information services is steadily increasing, especially in relation to benefit and employment information now that the previous government’s welfare/benefit reforms and difficulties associated with the introduction of the ESA are taking effect. Trustees and staff are therefore devoting a significant part of their time to financial matters and boosting fundraising activities in order to maintain our current level of information and support services.
Northern Ireland fundraising for ME/CFS research: Mid Ulster Vintage Vehicles Tractor and Car Club: Sponsored trek from Moneymore to Castlerock-Limavady
TB updated trustees on the Mid-Ulster Vintage Vehicles Club’s 100-mile vintage tractor and car trek, which this year will be raising money for the Ramsay Research Fund. It will start in Moneymore on Saturday 23rd July and finish the following day in Castlerock-Limavady. TB paid particular tribute to the tremendous support of the O’Neil family – father John, sons Ronald and Richard and daughters Jacqui and Fiona – who are also involved in other fundraising events for the RRF being planned later this year. TB and CS both recalled the very enjoyable meeting they had with the club committee earlier this year.
More information on this important fundraising event will appear in the July issue of ME Essential magazine and on the MEA website.
2010 London Marathon
The MEA paid for two guaranteed places for experienced runners in the 2010 London Marathon – so we had two good runners taking part as well as several other people running who also raised money for The MEA. Our two sponsored runners were:
Colin Green, a physiotherapist from Oldham, who is still raising funds at
Victoria Randall, the senior physical educational lecturer at Roehampton University, South London, who is still raising funds at
Additional runners included Stuart Carroll, Julie Penman and Des Rabbitts.
The total amount raised so far by all our runners stands at almost £4,500.
Amazon Walk to raise funds for a tissue and post-mortem/brain bank:
BS reported on Ed Stafford’s most recent progress on his Amazon Walk – now estimated, because of unexpected flooding, to be nearer to 7,000 miles than the original 4,000 miles. Ed has now been walking solidly for just almost 800 days and has reached Almeiron, where the Amazon becomes tidal, and from where he made a 28km crossing in a rubber raft at the peak of the flood season.
Ed now hopes to finish his epic journey in September 2010 and has booked his flight home! His Peruvian guide Cho, who has now been walking with Ed since Autumn 2008, is just as determined as Ed to complete the walk and has stayed with Ed as a walking companion when they reached Brazil. Cho is now going to come to Britain at the end of the walk.
Ed’s most recent blog describes life in this part of the Amazon basin, which includes giving himself intravenous antibiotics to treat a nasty skin ulcer.
Ed’s weekly progress can be followed on his Amazon Walk blog: http://www.walkingtheamazon.com
The most recent publicity has been on American ABC television: http://abcnews.go.com/GMA/Inspirations/video/bill-weir-inspiration-explorer-ed-stafford-10708807
Trustees discussed a number of ideas for possible fundraising events on his return home. Ed’s first talk on the Amazon expedition will be given to a meeting of the Royal Geographical Society in November, where he will be joined by the distinguished explorer Sir Ranulph Fiennes and Michael Palin.
• If anyone is willing to hold an Amazon Walk fundraising event in the next few months, Ba Stafford (MEA trustee) will happily attend and give a short talk on the expedition and the tissue bank appeal. Please contact us via ME Connect if you wish to follow this up.
• Ed Stafford has a fundraising page for MEA/RRF research at: http://meassociation.workwithus.org/Fundraising/Donate.aspx?page=1307
Around £8000 has been raised so far and Ed hopes to raise around £20,000.
‘Just Four Quid’ Appeal TB reported on wind up to this internet based fundraising campaign that has brought in regular small donations for both the Ramsay Research Fund and for ME Research UK (MERUK) over the past year. The total amount raised amounts to just over £15,440. The Appeal has now closed but the JFQ website remains open for any late donations: http://www.justfourquid.com
Eric Smart’s Sponsored Cycle ride from Aberdeen to Australia Eric’s 21,500 mile round-the-world cycle ride is now complete and after safely returning home to Aberdeen, Eric has now set off abroad once again to be “roadie” with the Veronica Taheny European folk-singing tour. He last met Ronnie during his MEA cycle in her home city of Adelaide, South Australia. The ride raised almost £13,000 for The ME Association and was the biggest individual fundraiser in the past 10 years.. If you would still like to make a donation to Eric’s fundraising initiative, this can be done via www.justgiving.com/ericsmart. There is a further short feature on page 24 of the May issue of ME Essential magazine.
MEA website shopping This new 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 means that 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, trolley coins and computer mouse mats MD reported on the latest financial returns from these on-going fundraising initiatives. Returns of ink jet cartridges are proving 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 May 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 Two new designs will be on sale later in the year.
Blue ribbons for ME Awareness These are now in stock and can be obtained using the pdf Order Form on the MEA website. Single ribbons cost £1 and there is a discount for bulk orders over 20.
Summer Raffle This will be drawn at the end of July. Tickets appeared the in the May issue of ME Essential. Further books of tickets can still be obtained from Head Office.
Fundraising information Two new fundraising leaflets are available for use at fundraising events and for approaches to sponsors and requests for donations. Free copies can be obtained by phoning MEA Head Office on 01280 818968.
2010 AGM AND TRUSTEE ELECTIONS
Trustees finalised the timetable for these events. The date for the AGM, which will be held at MEA Head Office in Buckingham, is now fixed for Tuesday afternoon, 7th September 2010. More information in the May issue of ME Essential magazine.
Trustees standing for election this year will be Ewan Dale and Charles Shepherd. Janet Thomas has reluctantly had to withdraw due to ill health but will remain as an observer, It was agreed that she has been an excellent trustee and it was hoped that she would re-apply if her health improves. More details on the candidates, along with a voting form, will appear in July ME Essential.
APPG CS updated trustees on the various initiatives that are taking place to try an set up a new APPG on ME following the General Election. This will involve finding a new Chairman because Dr Des Turner retired at the election, as well as finding a small number of other parliamentarians who are willing to take up the post of Treasurer, Secretary etc. At this point it is difficult to be certain about what will happen to the APPG because a number of MPs who were closely involved with parliamentary work on ME/CFS lost their seats at the election. This list includes Tony Wright, Dr Richard Taylor and Dave Drew. An inaugural meeting of the APPG will have to be arranged – hopefully before Parliament breaks up for the long summer holidays. Further details of the agenda, time, venue for the next APPG, if one is to be arranged, 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, has written to Dr Des Turner to express our thanks for chairing the APPG and wishing him a happy retirement from Westminster.
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 the May issue of ME Essential for the benefit of all MEA members. 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 As reported at the last Board meeting, the first meeting planned for 2010 had to be postponed because the Countess of Mar was unwell. Fortunately, she was able to attend the APPG meeting in March and has now arranged a meeting for Wednesday 7th July at which the group will be discussing a range of current issues. 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.:
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
Discussions took place to the effect that we are now in a position to fund some new worthwhile research in addition to current commitments and funding that has been raised to help set up a UK tissue and post-mortem bank.
RRF: XMRV: Trustees discussed the latest XMRV research results from four validation studies that have been carried out in three European centres and the American study from Professor Brigitte Huber (Tufts University, Boston) that was reported at the Invest in ME Conference. 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 also 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 our 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, Chief Medical Officer at the Department of Health, about the XMRV research findings and the implications for blood donation and blood transfusion. A reply from the CMO has been received and a question regarding blood donation was asked in the House of Commons by David Drew – the former MP for Stroud. All of this information, along with the MEA advice regarding XMRV testing here in the UK, can be found in the news archives on the MEA website.
RRF: Professor Julia Newton et al, University of Newcastle CS reported that assessments have now 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: CS reported on a research meeting that he had attended on Thursday 10th June at the University of Newcastle – where 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 is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting will be posted on the MEA website shortly. A more detailed summary will appear in the July issue of ME Essential magazine.
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
and in the February 2010 issue of ME Essential. There is a large 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, have been published in the open access scientific journal, BMC Medical Genomics here
Although RRF funding has now finished, we continue to remain in close contact with Professor Gow 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 included attending a focus group meeting held on Friday 4th June in London. This meeting 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 are currently involved with.
RRF funding = approximately £14,000
ME Observatory Steering Group CS updated trustees on all the various ME Observatory studies. This 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 funding ends later in the year. 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. The ME Observatory has arranged a half day Dissemination Conference that will also cover issues relating to work, welfare and benefits. This event has CPD (continuing professional development) accreditation and will take place in London on Saturday 25th September . Two MEO workshops are also taking place on 28 September (in Sheffield) and 29 September (Birmingham).
Medical Research Council (MRC) Expert Group on ME/CFS Research CS reported on the follow up to the two day research workshop that was held on November 19th and 20th 2009. A follow up meeting took place on March 1st. and a meeting to finalise research priorities was held on Friday 4th June. Summaries of the presentations and slides used at the November workshop are now 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
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 project will investigate how children and adolescents could be involved into 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. More information on the study can be found in the March news archive on the MEA website.
FINE AND PACE Trials CS updated trustees on the responses to publication of the results from the FINE trial that have appeared on the BMJ website, including one from The MEA, and 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, which we understand will take place later in the year. Responses to the results of the FINE trial can be accessed via the MEA website
Royal Society of Medicine CS reported on a research meeting held at the Royal Society of Medicine on 16 April that related to research being carried out by Professor Martin Pall in America.
Invest in ME Conference CS and TB reported on the fifth IiME conference that was held in London on Monday 24th May. An initial report can be fund on the MEA website
• A comprehensive report will appear in the July issue of ME Essential magazine.
Information on the work of the RRF can be downloaded from the research section of the MEA website.
ED reported on progress relating to (a) publication of clinical guidance on ME/CFS for doctors in Scotland – a document partly based on the MEA purple booklet for health professionals: ‘ME/CFS/PVFS: An Exploration of the Key Clinical Issues and (b) the Scottish Public Health Network Needs Assessment. As noted in previous MEA Board meeting reports, the timescale for both projects had to be re-organised in 2009. Progress was considerably delayed as a result.
The current situation is that the clinical guidance document has been reviewed and amended by a group of health professionals recruited by Lewis Ritchie, Professor of General Practice at the University of Aberdeen, following a previous negative review of last year’s agreed draft by a representative of the Royal College of GPs. The Scottish Health Department have also required that there should be coordination in content and publishing schedule between the SGPS and the Needs Assessment.
Among comments from the health professionals in the review group, which have caused disagreements with patient representatives on the Cross-Party Group on ME, the representative of the Scottish Neurosciences Council’s assertion that recognition of certain neurological symptoms is inappropriate for GP guidance has been the most controversial. However, the consultation period is effectively over, and Prof. Ritchie hopes that final revisions will provide a final draft which is a reasonable compromise, and which is intended for publication around early September.
OTHER ME/CFS MEETINGS
MEA Annual Medical Meeting 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 so far confirmed include 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 May issue of ME Essential magazine.
REPORT ON THE MEA MANAGEMENT QUESTIONNAIRE
This 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. Extracts from the report were included in the APPG report into NHS Service Provision.
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 be going to the Ramsay Research Fund. Unfortunately, we are not able, at present, to provide the additional statistical analysis due to the fact that the trustee dealing with this aspect of the report is taking a period of medical leave.
The latest MEA Management File on Orthostatic Intolerance and Orthostatic Hypotension (= problems and symptoms related to sanding up) appears in the May issue of ME Essential. A new Management File on the subject of Fatigue is now being prepared for the July issue of ME Essential. The MEA now has almost 70 leaflets and booklets covering all aspects of research, diagnosis and management.
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 slight 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 May issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
Trustees discussed various matters relating to The MEA website. We are still intending to add an on-line facility for anyone who wishes to purchase MEA literature and merchandise, and also for anyone who wishes to join the MEA, or renew a subscription via the website. Although unable to be present at the Board meeting, RO is going to take this forward.
The regular on-line survey feature remains very popular. Topics surveyed so far include the NICE guideline on ME/CFS (December 2008); 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). The current (June) question asks for opinions on DWP medical assessments that have been carried out by ATOS.. 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.
Trustees reviewed the administration of telephone calls and emails received by ME Connect, our information and support service. Last year the service dealt with around 2500 emails and around 3100 phone calls – a total of nearly 5600 enquiries. 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 firstname.lastname@example.org
ME ESSENTIAL MAGAZINE
TB reported on plans for the July issue of ME Essential. Any remaining copy must be with Tony by the end of June. We are aiming for publication in the final week of July.
Trustees held a further discussion on the difficult issue of trying to achieve the right balance between medical content and lighter human interest content. In recent issues, with so many important medical issues appearing, the balance has significantly shifted towards the medical pages and it was felt that we should try to include more human interest items in future issues. The Editorial Board is always happy to receive constructive comments about any aspect of the magazine.
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, 6th and 7th September 2010 to coincide with the AGM.
MEA website: http://www.meassociation.org.uk
Summary prepared by Dr Charles Shepherd, Trustee
June 17, 2010