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

ME Association: Board of Trustees meetings: 18 and 19 January 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, 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.



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


Rick Osman (RO)


ED updated trustees on the current financial situation.

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

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

Trustees agreed to once again ask Larking Gowan to deal with the auditing arrangements for the MEA accounts in the year ending December 2009.

Trustees agreed to the purchase of some new computer equipment for Head Office staff as the present equipment is unable to cope with increasing data.

Despite all the bad weather, which has created travelling difficulties for both staff and volunteers in Buckingham, GB reported that everything is running smoothly at Head Office and there are now no longer any delays in sending out MEA literature and merchandise.


The MEA continues to face a general situation whereby people are reducing the amount of money they are able or willing to give to the charity sector. At the same time, demand on our support and information services is steadily increasing, especially in relation to benefit and employment information now that the government’s welfare/benefit reforms and the introduction of the ESA are taking effect. Trustees and staff are therefore devoting a significant part of their time to financial matters and fundraising activities in order to maintain our current level of information and support services.

2010 London Marathon The MEA has paid for two guaranteed places for experienced runners in the 2010 London Marathon. We have found two good marathon runners who can confidently guarantee to complete the run and also bring in a substantial amount of sponsorship money. Further information on our two chosen runners and details on how to sponsor them will appear in the February issue of ME Essential magazine and on the MEA website.

Colin Green, a physiotherapist from Oldham, is already raising funds at

Victoria Randall, the senior physical educational lecturer at Roehampton University, south London, is asking for donations at  

Both of these runners, selected from a shortlist of 12 runners to take up the MEA’s guaranteed places in the London Marathon, have succeeded in enlisting other runners who secured their places by entering the main ballot, to also raise money for the MEA.

Fundraising event at BGC Partners in London The MEA took part in a major charity fundraising event that was organised by BGC Partners in London on Friday September 11th. BGC is a global financial services company and they hold a charity event each year in memory of colleagues who died in the Twin Towers attack in New York on September 11th 2001. All of the revenue generated from the day’s trading at BGC is donated to the various charities taking part, and The MEA is due to receive a donation of over £3,000. More information on the 5th Annual BGC Charity Day can be found at: An MEA press release on the event can be found at:  along with photos of some of the celebrities – including Ian Botham, Elaine Page and Tara Palmer-Tomkinson – who took part. A two page photo feature on this event appeared in November ME Essential.

  • If anyone knows of a company that they have good links to and who hold a charity event of this nature each year please contact Tony Britton at the MEA.

Amazon Walk to raise funds for a tissue and post-mortem tissue/brain bank: BS reported on Ed Stafford’s latest progress on his Amazon Walk – now estimated, because of unexpected flooding, to be nearer to 7,000 than the original 4,000 miles. Ed is currently in the Manaus region of Brazilian rain forest and has now been walking solidly for 660 days. He now hopes to finish his epic journey in September 2010. His former Peruvian guide Cho, who has now been walking with Ed since Autumn 2008, has become as determined as Ed to complete the walk and has stayed with Ed as a walking companion when they reached Brazil. Ed’s most recent blog describes life in this part of the Amazon basin and how he and Cho spent the New Year. Ed’s weekly progress can be followed on his Amazon Walk blog at .

The Daily Mail has carried a feature on the walk >>  

  • Trustees discussed a number of other possible options for major fundraising events when Ed returns from the Amazon. If anyone is willing to hold a 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 JustGiving: .

Around £8,000 has been raised so far and Ed hopes to raise around £20,000.

‘Just Four Quid’ Appeal TB updated trustees on this internet based fundraising campaign that aims to bring in regular small donations for both the Ramsay Research Fund and for ME Research UK (MERUK). The total amount raised so far amounts to over £9,000.. More information on JFQ at:

Eric Smart’s Sponsored Cycle ride from Aberdeen to Australia Eric has extended his cycle ride to include New Zealand (where he was in December) and the USA. He is currently cycling through California.. Eric has set himself a new target to raise £12,000 for The ME Association. There were features on Eric in the Scottish Sun >>  and the Scottish Daily Mail (no website link).

If you would like to sponsor Eric, click on

MEA website shopping We have a new facility on the MEA website home page that provides a direct link to well known shops and on-line stores. Purchasing goods on-line from companies such as John Lewis 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.

Mobile phone and ink cartridge returns, trolley coins, computer mouse mats and WOW mugs MD reported on the latest financial returns from these on-going fundraising initiatives. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website:, or the literature order form insert in the February issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. Envelopes for the return of ink cartridges can be ordered using the literature order form. A mobile phone return envelope was inserted in November MEE.

Fundraising information Two new fundraising leaflets have been produced by BS and the fundraising sub-group – one of which was sent out in August ME Essential. The second leaflet describes ME symptoms and the work of the MEA. It can be given out at fundraising events and used for approaches to sponsors and requests for donations.

Legacies The importance of people considering making a bequest to the MEA in their Will was again discussed. Progress on an information leaflet plus a Codicil that has being prepared by BS and the fundraising sub-group was discussed – the aim is to have this ready for the May issue of ME Essential. Information on how to donate your body to medical research will appear in the February issue of ME Essential magazine.


The MEA is 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.


Trustees finalised the timetable for these events. The date for the AGM has been fixed for Tuesday 7th September. Trustees standing for election this year will be Ewan Dale, Charles Shepherd and Janet Thomas.


APPG Inquiry into NHS Services CS reported on the public launch of the interim report that was presented at the last meeting of the APPG on 2nd December. A summary of this meeting can be found in the December news archive on the MEA website. The MEA website also has a link to the interim report and our response to recommendations made in the interim report.

The APPG website:  contains information regarding Terms of Reference etc for the Inquiry as well as the minutes and transcript from the last meeting. Trustees previously agreed to help fund the production of some paper copies of the interim 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 report will be added to the literature list (as a free item) in the February issue of ME Essential for the benefit of all MEA members.

APPG The date of the next meeting of the APPG will be 10th March. Further details of the agenda, time, venue etc will appear on the MEA website at:  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

Countess of Mar’s Group: FORWARD ME CS reported that the next meeting, planned for 27 January, has had to be postponed as the Countess of Mar is unwell. The Forward ME Group website: 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.:


RRF: XMRV: Trustees devoted a considerable amount of time to discussing the XMRV research findings from America, the results of the first replication study from Kings College Hospital/Imperial College, and the role of the MEA Ramsay Research Fund in funding UK research groups who want to try and replicate the findings, or do other relevant work on XMRV. 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. 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 research findings and the implications for blood donation and blood transfusion. A reply from the CMO has been received. All of this information can be found in the news archives on the MEA website.

RRF: Professor Julia Newton et al, University of Newcastle CS updated trustees on the new research study into muscle function and metabolism in ME/CFS that is being funded by the Ramsay Research Fund. Data has been collected on over 70 patients as part of the clinical cohort study. The assessment protocol has been refined and tested on controls and while the first patients are ready to go through assessment procedures, there is at present an administrative delay. Further information on this study can be found in the August issue of ME Essential magazine. RRF funding = approximately £13,800.

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 now been published in an open access on-line journal. More information can be found on the MEA website (January news archive) and in the February 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, has been published in the open access scientific journal, BMC Medical Genomics::  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 It was confirmed that the Ramsay Research Fund will be co-funding, with AfME, phase two of the feasibility study into the setting up of an ME/CFS brain and tissue bank. The total cost to the RRF will be around £14,000. This work is being carried out by Dr Luis Nacul and colleagues at the London School of Hygiene and Tropical Medicine and will start in February 2010. An article summarising all the various 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 will appear in the February issue of ME Essential. Trustees also discussed the various post-mortem research examinations that we are currently involved with.

ME Observatory Steering Group CS reported that work on all the various ME Observatory studies is proceeding to plan with several research papers being prepared or submitted for publication. The last meeting also discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular, which now has around 500 cases on it – once funding from the Big Lottery Fund finishes in 2010. A Dissemination event is being planned for 2010. The next ME Observatory meeting will take place in February 2010

Medical Research Council (MRC) Expert Group on ME/CFS Research CS reported on the two day research workshop held on 19 and 20 November. A summary of this meeting will appear in the February issues of ME Essential.

  • 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 has had to be re-organised and therefore considerably delayed.

The current situation is that both documents are being reviewed by a group of health professionals that has been put together by Lewis Ritchie, Professor of General Practice at the University of Aberdeen. The SGPS is now almost finalised and the target date for publication of the two documents is March 2009.


MEA Annual Medical Meeting Trustees discussed the possible format and venue for our annual medical meeting. This is an open and free medical meeting, often in an ‘ME Question Time’ format, that we rotate around the country and usually hold in September or October. Previous meetings have been held in Chichester, Colchester, Peterborough and Chester. Our preference this year is to go to Wales or South West England. If a local group would like to co-operate in putting on such a meeting later in the year please let us know.

Invest in ME Conference Trustees agreed to pay for two places at this conference in May.


Trustees were updated by JT on the 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. Work on the detailed statistical analysis of the results, which will provide the basis for the preparation of a more substantial report that summarises and comments on the results, is now complete. The intention is to make all this material available, plus any necessary statistical analysis and comment, in the form of a report that can be given to health professionals, NHS administrators etc. We are aiming for the report be ready for distribution with the May issue of ME Essential.


A new MEA information leaflet on Employment and Support Allowance (ESA) has been prepared and is almost ready. This new leaflet will be available via the next issue of ME Essential in February.

A new MEA information leaflet on Cognitive Dysfunction appeared in the November issue of ME Essential.

A fully updated version of the MEA leaflet on New and Experimental (drug) Treatments will appear in the February issue of ME Essential.

The October 2009 fully updated version of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ is now available. This 36 page easy to digest 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. The new edition is now available to purchase from the MEA. 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 pdf ORDER FORM on the MEA website:, or the 8 page order form insert in the February issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.


Trustees discussed various matters relating to The MEA website. We intend 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 meeting, RO is going to come into the office to discuss the practicalities of these proposals.

The regular on-line survey feature remains very popular and trustees discussed the possible content of further questions.  Topics surveyed so far include public opinion on reactions to flu vaccination (November 2008); 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), Probiotics (August 2009). The current (January) question asks about whether doctors should be able to prescribe unlicensed and unproven treatments. Results from all the previous on-line surveys can be found on the MEA website.


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.

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 interested in hearing from anyone who would like to become involved with this service as a volunteer.


TB reported on the February issue of ME Essential. Any remaining copy must be with Tony Britton by the end of January. We are aiming for publication in the third week of February.


Volunteers In addition to the telephone volunteers who deal with ME Connect enquiries, we have a small number of regular volunteers who come into the MEA office in Buckingham on a regular basis to help with various aspects of our work. The contribution made by Ann, Donald, John, Lydia and Pam is very much appreciated and was covered in the November issue of ME Essential. If you know of anyone who lives locally to Buckingham, and would like to come into the office and help out occasionally please get in touch with Gill Briody. The MEA office is modern, on the ground floor of an out-of-town site, and has good free car parking facilities right outside.


Provisionally fixed for 22nd and 23rd March 2010

MEA website:

Summary prepared by Dr Charles Shepherd, Trustee