Summary of March 2010 meeting of the ME Association Board of Trustees

March 26, 2010

This is a summary of key points to emerge from three meetings of The ME Association Board of Trustees.  These meetings took place at our Head Office in Buckingham on Monday morning and afternoon, March 22 and on Tuesday morning, 23 March 23 2010.

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


Please note that 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.


On this occasion trustees devoted significant sections of the meetings to four specific topics. The first was future planning and strategy for the charity over the next five years.  There were three presentations from a professional fundraiser, a professional financial adviser, and a possible new trustee






Ewan Dale (ED) – Honorary Treasurer

Mark Douglas (MD)

Neil Riley (NR) – Chairman

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)




A presentation from a professional financial adviser was given on all aspects of money management and investment strategy that is relevant to our charitable and company status.  There is a requirement in the Trustee Act for charities to do this.


Trustees discussed how ME and You Ltd – our trading company that deals with merchandise and literature sales – carries out its functions and stock control.


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 January 2010.  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.


Trustees reviewed the current ‘best buys' for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.  Some preliminary decisions were made on where we should place our reserve income for the coming year.


Trustees confirmed that Larking Gowan would be dealing with the auditing arrangements for the MEA accounts in the year ending December 2009.


Trustees agreed at the previous meeting to the purchase of some new computer equipment for Head Office staff.  This is because the present equipment is unable to cope with increasing data.  The equipment has now been installed.  Problems arising from the changeover meant that our Head Office was unable to use email communication for a short period of time a few weeks ago.  If anyone is still awaiting an email reply please get in contact again.


Trustees agreed to adopt a new Equal Opportunities Policy.




This included a presentation from a professional fundraiser who had previously met with the fundraising sub-group to discuss all the various ways in which a charity such as the MEA has to raise funds on top of membership subscriptions.


This presentation was particularly relevant to the current general financial 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 support and information services is steadily increasing, especially in relation to benefit and employment information now that the 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
  CS and TB reported on their visit to Northern Ireland the previous week in connection with a major summer fundraising event that will be collecting money for ME/CFS research.  More information on this event will appear in the May issue of ME Essential magazine and on the MEA website.


2010 London Marathon  The MEA has paid for two guaranteed places for experienced runners in the 2010 London Marathon. We now have two marathon runners taking part and several other people running who are also aiming to raise money for The MEA. Further information on all these runners and details on how to sponsor them can be found in the February issue of ME Essential magazine and on the MEA website.  Our two sponsored runners are:


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

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


Additional runners now include Stuart Carroll, Julie Penman and Des Rabbitts.

Amazon Walk to raise funds for a tissue and post-mortem/brain bank  BS reported on Ed Stafford's 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 is currently in the Itapiranga region of Brazilian rain forest and has now been walking solidly for just over 700 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, which includes problems with snakes and a nasty looking skin ulcer.  Ed's weekly progress can be followed on his Amazon Walk blog >> The Daily Mail has carried a feature on the walk  >>  and there is a feature on Ed in the February issue of Life After School magazine >> Click here.


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 >> Click here.  Around £8000 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 just under £11,500. More information  on JFQ >>


Eric Smart's Sponsored Cycle ride from Aberdeen to Australia  Eric who continued cycling round the world is in America.  Eric and his family in Aberdeen are hopeful that he will achieve the target of raising £12,000 for The ME Association.  There were features on Eric in the Scottish Sun >> and the February issue of ME Essential.   If you would like to sponsor Eric, click on  Eric hope to be back in Scotland sometime in April.


MEA website shopping  We have a 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. There is a section for Easter shopping!


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 8-page 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 and mobile phones can be ordered using the order form.


Christmas cards
  Trustees discussed a number of new designs with the intention of adding a further card to our list for sale later in the year.


Blue ribbons  Trustees agreed to explore the possibility of producing blue ribbons for people who wish to make use of this ME awareness product.


Raffle  Trustees agreed to draw the annual raffle at the end of July with tickets appearing the in the May issue of ME Essential.


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.


Legacies  Information on how to donate your body to medical research, along with a Codicil for a Will, can be found in the February issue of ME Essential magazine.




Trustees interviewed a potential new trustee.


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 is now fixed for Tuesday afternoon, 7 September 2010.  Trustees standing for election this year will be Ewan Dale, Charles Shepherd and Janet Thomas.  More details will appear in May ME Essential.




APPG Inquiry into NHS Services  CS reported on the public and press launch of the full report that was presented to the last meeting of the APPG on 10th March. A summary of this meeting can be found in the March news archive on the MEA website. The MEA website also has a link to the 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 report because we believe this information should be readily available to members of the public who do not have internet access. Details of the interim report appeared in the Spring issue of ME Essential for the benefit of all MEA members.


APPG  After the General Election,steps will need to be taken to try and once again set up an APPG on ME.  We will also have  to find a new Chairman because Dr Des Turner MP will be retiring at the election.  At this point it is difficult to be certain about what will happen but the MEA will be contacting key politicians in the new parliament to try and set up a meeting as soon as possible – hopefully before the end of May.  Further details of the agenda, time, venue etc 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.  It was agreed that Neil Riley, Chairman of the MEA, would write to Dr Turner to express our thanks for chairing the APPG and to wish him a happy retirement from Westminster.


Countess of Mar's Group: FORWARD ME
  As reported at the last Board meeting, the meeting planned for 27 January had to be postponed as the Countess of Mar was unwell.  Fortunately, she was able to attend the APPG meeting in March and hopes to set up the next Forward ME Group meeting shortly after the general election. 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.



  Trustees discussed the latest XMRV research results from validation studies that have been carried out in three European centres and the role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate 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 – including our current initiative to retest anyone here in the UK who has set 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 has been asked in the House of Commons by Dr Shepherd's local MP for Stroud – David Drew. All of this information can be found in the news archives on the MEA website.


RRF – Professor Julia Newton et al, University of Newcastle  Trustees discussed the half term report on the research study into muscle function and metabolism in ME/CFS that is being funded by the Ramsay Research Fund.  Assessments have now been performed on 25 subjects who have been recruited via the Northern Regional 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 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, including a link to the paper, can be found on the MEA website >> Click here 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
  The Ramsay Research Fund is 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.  Work on phase two commenced in February and this 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 issue of ME Essential. Trustees also discussed the various post-mortem research examinations that we are currently involved with.


RRF funding = approximately £14,000


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 MEO meeting 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 people with well characterised ME/CFS 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 on Friday April 30th 2010


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 19 and 20  November  2009.  A follow up meeting took place on March 1st. The outcome is a further MRC meeting in April with the aim of producing a number of specific research recommendations.  Summaries of the presentations and slides used at the November workshop should be appearing shortly on the MRC website.


Lightning Process  Trustees discussed a new research study that has been announced into the use of the Lightning Process.  Costing £164,000, the project will investigate how to recruit children and adolescents 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.


Royal Society of Medicine  Professor Martin Pall has invited Dr Charles Shepherd to a meeting at the Royal Society of Medicine on 16 April.


MRI scans  Trustees briefly discussed a new research study which involves MRI brain scans:


Longitudinal MRI shows no cerebral abnormality in chronic fatigue syndrome.  Perrin R et al.  British Journal of Radiology, 2010 March 11 (Epub ahead of print]


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 and progress was considerably delayed as a result.


The current situation is that both documents have been 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 finalised and the target date for publication of the two documents is May 26th 2010.




MEA Annual Medical Meeting
  Trustees discussed the 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. This year we are co-operating with the Welsh group WAMES with the intention of holding the meeting in Cardiff on a Saturday afternoon during October.  More information will appear in the May issue of ME essential magazine.


Invest in ME Conference  Charles Shepherd and Tony Britton will be attending this conference in May.




Trustees were updated by JT on 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.  Work on the detailed statistical analysis of the results, which will provide the basis for a more substantial report that summarises and comments on the results, is now complete.  All this material available, plus any necessary statistical analysis and comment, will be incorporated into a report that will be given to health professionals, NHS administrators etc.  The report will be distributed (free) as part of the May issue of ME Essential.  Extracts from the report have been included in the APPG report into NHS Service Provision.




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


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.  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.  We are considering sending a copy to all medical and hospital libraries in the UK.


MEA literature can be obtained using the pdf ORDER FORM on the MEA website, 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, including the recent changeover to a new website host. 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 meetings, RO is going to come into the office to take this forward.


The regular on-line survey feature remains very popular and trustees have been discussing 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).  The current (March) question asks whether the NHS should be spending £4 million per year on homeopathic treatments and hospitals.  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 interested in hearing from anyone who would like to become involved with this service as a volunteer.




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


Trustees discussed 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.




  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.  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 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.




Fixed for Monday and Tuesday, 14th and 15th June 2010


Summary prepared by Dr Charles Shepherd, Trustee

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