Summary of MEA Board of Trustees meetings in January 2011

MAY BE REPOSTED

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, January 17th and on Tuesday morning, January 18th 2011. Informal discussion on some of the topics also occurred on the Monday morning.

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. Where appropriate, there is background information relating to the issue being discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

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

Apologies:

Rick Osman (RO)

Trustees were joined on Tuesday morning by a former director of a leading UK company, who is kindly proving us with on-going advice on various aspects of administration and management.

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 November 2010.

Overall, there has been a significant drop in some key areas of income during 2010 when compared to the same period in 2009 – unrestricted donations, gift aid and bank interest in particular. As a result, general expenditure has run ahead of unrestricted income and we have had to dip into our reserves to cover the shortfall.

Trustees spent a considerable period of time reviewing the various options for ‘balancing the books’ as we have a duty to run the MEA in both a business-like manner as well as a charity.

A number of options regarding ways of reducing certain aspects of current expenditure and increasing income were discussed. One immediate measure will be to limit the page size of the magazine to 48 pages from now on. Further discussion will take place at the next Board meeting – when we have the final figures for 2010 and a better idea of whether this trend is continuing into 2011.

Income from fundraising during 2010 has shown a slight increase over the same period in 2009, and with membership fees remaining roughly static this is one area where trustees feel that a significant increase in income could and should be achieved in 2011. Maya Thomas, our new part-time fundraising assistant who met with trustees at the Board meeting in November, is continuing to work closely with Tony Britton on a number of new fundraising initiatives. Trustees reviewed a progress report from Maya.

There has also been a welcome and significant increase over the past year in the ring-fenced funding held by the Ramsay Research Fund.

Trustees held a further review of the results of changes in banking arrangements, aimed at improving interest received on deposit accounts, that have been carried out in the past few months in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.

Adjustments to year end accounts and submissions to HMRC were discussed, and the programme for inspection of the final accounts by the Independent Examiners (re-appointed at the last AGM) was outlined.

Lucy Hawker, who has been on maternity leave, will be returning to the office at the beginning of March. Trustees thanked Toni Archer, the temporary member of staff who quickly settled in to cover Lucy’s maternity leave. Toni left in early January to take on a permanent position elsewhere.

NR has drafted a letter that will go out to local businesses and civic leaders in Buckingham in order to increase their awareness of our presence in the town.

MEA TRUSTEES and 2011 AGM

Trustees discussed a preliminary application from a member who has expressed an interest in helping the MEA, possibly as a co-opted trustee.

We would still like to hear from anyone else 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. We are particularly keen to hear from anyone with either management or accountancy skills. In order to proceed with an application, non-members would have to become members of the MEA. An informal discussion can be arranged before any commitment is made.

We have advertised a vacancy for a Trustee on the website of the National Council for Voluntary Organisation. Please read the details at
http://www.ncvo-vol.org.uk/vacancies/trustee-me-association

Trustees carried out forward planning arrangements for both the 2011 AGM and the 2011 trustee elections. Provisional plans to hold the AGM in November were agreed.

DR ANNE MACINTYRE

Longstanding members of The MEA will know that Dr Anne Macintyre has worked as one of our volunteer medical team for almost 20 years. Anne wrote one of the first self-help guides to the illness and has taken a particular interest in the problems relating to medical assessments and examinations for DWP benefits.

Besides having ME, Anne has other health problems. Unfortunately, these have progressively deteriorated over the past few years. As a result she has decided to step down from our medical team and will no longer be dealing with medical or benefit enquiries.

Dr Shepherd has spoken to Anne on behalf of staff, trustees and members to thank her for all the time she has given to helping people with all aspects of ME over the years. He has asked Anne if she would consider writing about her experiences for the May issue of ME Essential.

We are very happy to forward any messages or cards that people would like to send to Anne. Please send them to Gill Briody at MEA Head Office.

FUNDRAISING INITIATIVES and DONATIONS

The MEA has to raise a substantial amount of 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 (including administration of the Ramsay Research Fund). We are also facing a situation whereby people are reducing donations to the whole 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 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 and research activity.

2011 Reading Half Marathon and London Marathon

We are already being contacted by people who are intending to run in marathons, or half marathons, during 2011 in order to raise money for The MEA. One member will be raising funds for us when she runs in the Reading Half Marathon. More details can be found here: http://runningforme2011.wordpress.com/

The MEA paid for two guaranteed places in the 2010 London Marathon – so we had 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 will not be paying for any guaranteed places this year.

Newtownards Charity Committee

CS reported on the visit he made to Northern Ireland in December to receive a very generous donation from the Newtownards Charity Committee. During his day in Newtownards he also met with Jim Shannon MP for Strangford, who is a party spokesman on Health.

Aston University donation

CS reported on a visit he made to Aston University to receive a donation that was raised during their annual Rag Week

Amazon Walk to raise research funds for an ME/CFS tissue and post-mortem/brain bank:

BS updated trustees on the various lectures and media work that Ed Stafford has been carrying out following the completion of his epic Amazon Walk. Ed 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. The most recent accolade is being made a Fellow of the Royal Geographical Society.

One of Ed’s first talks on the Amazon expedition was given to a meeting of the Transglobe Expedition Trust at the Royal Geographical Society in November, where he was joined by the distinguished explorer Sir Ranulph Fiennes and traveller Michael Palin.

Ed Stafford still 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 for the Ramsay Research Fund tissue bank project.

MEA Adventure Challenges 2011:

We have arranged for two challenges for more adventurous supporters this year.

The first will be a 20km trek, including an ascent of Scafell Pike in the Lake District on 24-26 June:
http://www.adventure-cafe.com/Content/ForeignAdventure/ForeignAdDetail.asp?aid=1\193302308&org=1288864979&stat=0)

The second is a bike ride through Tuscany on 7-11 September:
http://www.adventure-cafe.com/Content/ForeignAdventure/ForeignAdDetail.asp?aid=\1216579323&org=1288864979&stat=0

A brochure covering these events will shortly be available for downloading at the website.

Give A Car

If you have an old banger that you want to get rid of, let GiveaCar Ltd take the strain and arrange for it to be collected. You will be making a donation to the MEA in the process – whatever state the car is in. Fill in the form here – http://www.giveacar.co.uk/donate-a-car-to-charity/the-me-association

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! Registering only takes a few seconds on the Easyfundraising.com website.

Mobile phone and ink cartridge returns and trolley coins

Returns of ink jet cartridges and old mobile phones continue to be a successful source of income – so please keep sending them in. 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 and mobile phones can be ordered using the literature order form.

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.

Fundraising information

As reported in the November Board meeting summary, we have a new part-time member of staff, Maya Thomas, who is dealing with fundraising administration and support. Please contact Maya if you have any ideas for a fundraising event that you want to discuss. Fundraising leaflets and a fundraising pack are available for use at events and for approaches to sponsors and requests for donations. Free copies can be obtained by contacting Maya Thomas by email: maya_mea@talktalk.net or by phone (01908 310052 between 9.30 and 17.00 Monday to Friday, please leave message if untended).

PARLIAMENTARY MATTERS:

APPG on ME

The first full meeting of the new APPG on ME took place at Westminster on Tuesday 9 November 2010. The APPG parliamentarians decided that this should be a closed meeting – so attendance was restricted to MPs, members of the House of Lords and the APPG Secretariat (CS from MEA and Sir Peter Spencer from AfME).

The decision to hold a closed meeting was taken by the parliamentarians – not the Secretariat. While The MEA recognises that members of the public who attend these meetings are in effect guests of the APPG, and that confrontational or time-wasting interruptions are unacceptable, we also feel that members of the public, along with charity representatives, make an important contribution to the work of the APPG. The MEA will therefore continue to argue that the new group must allow some form of public presence at future APPG meetings.

The main item on the administrative agenda was a discussion on how the new APPG will operate during this parliament. The main item on the ME/CFS agenda was the subject of DWP benefits. Other subjects discussed included the possible revision of the NICE guideline, the research priority recommendations from the MRC Expert Group on ME/CFS research, XMRV research and the Lightning Process trial.

More information on this meeting, along with the minutes, can be found on the MEA website:
https://meassociation.org.uk/?p=2869 (background) https://meassociation.org.uk/?p=3000 (minutes)

The next meeting of the APPG on ME, which will again be a closed meeting, will be held on Wednesday 16 February. The invited speaker is Professor Stephen Holgate, Chair of the MRC Expert Group on ME/CFS research. Other items on the Agenda include a discussion on Professor Malcolm Harrington’s Review of the Working Capacity Assessment and Welfare Reform – in particular the introduction of the Personal Independence Payment to replace Disability Living Allowance.

We would like to increase both the membership of the APPG and attendance of MPs at meetings – so it’s important to check if your MP is a member of this group and if not try to persuade him/her – by letter or preferably in person – to join and attend the next meeting in February. The current list of members of the new APPG can be found on the MEA website

More information on the February meeting can be found on the MEA website: https://meassociation.org.uk/?p=3452

House of Commons Early Day Motion (EDM) on ME Research

More information on this EDM, which has now been signed by almost 100 MPs, can be found here: https://meassociation.org.uk/?p=2403

APPG Inquiry into NHS Services

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

PARLIAMENTARY: Countess of Mar’s Forward ME Group

The last meeting took place at the House of Lords on Tuesday 26 October. Topics discussed included DWP benefits, Research (Lightning Process trial; MRC Expert Group, Dundee research on children, neuroendocrine testing and XMRV), the NICE guidelines review and links to other neurological groups The minutes for this meeting have been posted on the Forward ME Group and MEA websites. In relation to the ethics of the Lightning Process trial, the Countess of Mar tabled a parliamentary question in the House of Lords: https://meassociation.org.uk/?page_id=1685

The final meeting for 2010 was planned to take place on December 14th when there should have been a presentation from Professor Malcolm Harrington, who has been carrying out the independent review into the ESA Work Capability Assessment (WCA) Unfortunately, this meeting had to be cancelled at very short notice due to the student demonstrations regarding tuition fees. The Countess of Mar has, however, continued to liaise with Professor Harrington. As a result, the group was asked to provide a representative to sit on a new Working Group with Professor Harrington that will be producing recommendations regarding WCA descriptors for fluctuating conditions such as ME/CFS. This group will be starting work shortly and CS has been appointed to represent the Forward ME Group of charities.

Dr Jane Rayner, Chief Medical Member of social security tribunals (the tribunal service which hears DWP benefit appeals) will be the speaker at the next meeting on Wednesday 26th January 2011.

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 meeting that took place last year:

DWP BENEFIT STRATEGY

Trustees reviewed the current MEA strategy regarding benefit problems including the changeover from ICB to ESA that started in pilot form in October, the government consultation regarding possible changes to DLA, and Professor Malcolm Harrington’s Independent Review of the Work Capability Assessment. A copy of the MEA submission to this review can be found in the November issue of ME Essential and on the MEA website: https://meassociation.org.uk/?p=1639

The MEA did not produce an immediate website response to the most recent government proposals for benefit cuts and changes because we have been considering the best way to try and persuade the coalition government to make changes in their very drastic proposals – which are going to cause major problems for people with ME/CFS, especially the changeover from ICB to ESA that will rapidly gather pace as from Spring 2011. CS discussed benefit issues and cuts at a Forward ME Group meeting with the Countess of Mar at the House of Lords on Tuesday 23 October. David Amess MP, the new Chair of the APPG on ME at Westminster, also agreed to include benefits as a priority item when the APPG held its first meeting on November 9th – despite the fact that the top item in our website poll for the APPG was XMRV research. The most effective way forward here will be through a joint initiative from all the medical charities representing people with serious long-term disabilities.

ED has been tasked with preparing the MEA response to the government consultation on DLA.

NICE GUIDELINE REVIEW

CS reported on continuing correspondence with NICE regarding the original proposal to review this very controversial guideline on ME/CFS in late 2010. The MEA replied to NICE in 2010 to say that we believed a review should take place. The current position is that situation is still under review – although a decision is likely to be made once the results of the PACE trial have been released.. A copy of our most recent response can be found here https://meassociation.org.uk/?p=2955

RESEARCH AND RAMSAY RESEARCH FUND (RRF)

RRF: XMRV and MLV:

Trustees discussed the latest XMRV research results from validation studies, along with the new papers published in Retrovirology in December 2010 relating to the contamination hypothesis. CS also reported on the outcome of discussions that he continues to have with UK virologists on this subject. Our latest XMRV summary can be found on the MEA website: https://meassociation.org.uk/?p=2240 and in the November issue of ME Essential.

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 by Dr Kate Bishop to re-test anyone here in the UK who has sent a blood sample to the US laboratory.

Following our correspondence with Sir Liam Donaldson, the previous Chief Medical Officer, the current ban on blood donation from people with symptomatic ME/CFS has been extended to include anyone with a past history of ME/CFS as from 1 November. 2010. This ban will cover the whole of the UK. The CMO correspondence can be found on the MEA website. We shall be monitoring the implementation of this new guidance.

RRF: Professor Julia Newton et al, University of Newcastle

CS reported that work has proceeding according to plan during 2010 and assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The assessment procedures included testing autonomic nervous system function, muscle performance, exercise physiology protocol, and body composition (ie the amount of fat and muscle present). The second phase of the study involved the use of magnetic resonance spectroscopy to assess the way in which muscle is producing energy and lactic acid during exercise. The results are now being analysed and prepared for publication.

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 met Professor Newton at a research meeting that was held at the University of Newcastle last year. 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) – something that 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 MEA website: https://meassociation.org.uk/?p=975

An abstract from a recent research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle (= muscle that moves bones) can be found on the MEA website. An abstract from another recent study from this research group, relating to abnormalities in pH (ie acid) handling by skeletal muscle, can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2009.02160.x/abstract

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. A link to the paper, can be found on the MEA website:https://meassociation.org.uk/?p=784 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 the 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: https://meassociation.org.uk/?p=642

Unfortunately, there are no plans to continue with this type of research at present.

RRF funding = approximately £38,000.

RRF: Post-mortem tissue bank feasibility study

CS updated trustees on the completion in November 2010 of phase two of the co-funded feasibility study into setting up an ME/CFS blood bank (biobank) and post-mortem tissue bank. This has included consultation with relevant experts and 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. This work has been carried out by Dr Luis Nacul and Dr Eliana Lacerda 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. https://meassociation.org.uk/?p=3765

An article summarising progress so far, and how we intend to deal with the practicalities of setting up both a biobank and tissue bank, will be included in the February 2011 issue of ME Essential magazine.

The results from four post-mortems carried out in the UK were presented and discussed at an international research conference in Australia in December. More information, including the conference presentation abstract, can be found on the MEA website report: https://meassociation.org.uk/?p=3765

A paper describing the way in which we are hoping to set up a tissue bank has now been published in the Journal of Clinical Pathology.
An abstract can be found here: http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032

RRF funding = approximately £14,000

Trustees agreed at their November meeting to co-fund an extension to the work that has been carried out by the ME Observatory in setting up a Patient Database that includes people with ME/CFS who have been recruited from primary (ie GP) care, along with a severely affected group that have been recruited via the database held by the charity CHROME. It was felt that it is essential to keep the patient database maintained and up-to-date because people from this well-characterised clinical group could then be asked to donate blood when, as hoped, we are able to continue to move forward in 2011 with the establishment of a pilot biobank that will then collect and hold blood samples for research purposes.

RRF Funding = approximately £5,000

Trustees agreed to some further funding to assist Dr Dominic O’Donovan (neuropathologist at Addenbrooke’s Hospital, Cambridge) with the virological examination of existing post-mortem material.

RRF funding = £500

Donating blood and tissue samples to ME/CFS research:

We are aware that people with ME/CFS are very keen to donate blood samples for research studies, and in some cases tissue samples after death. Unfortunately, we cannot accept any blood samples until a biobank facility has been set up in a UK hospital or research institute – which we hope will occur in 2011. As far as tissue and post-mortem samples are concerned, the November issue of ME Essential magazine contains information that can be placed in your Will, or as a Codicil to a Will. This gives permission for tissue to be taken after death, along with further information on what we may be able to do with tissue donation prior to a post-mortem tissue bank being set up.

ME Observatory Steering Group

The final stages of this work are now complete 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 ended in September 2010. The Disease Register now has around 500 people with well characterised ME/CFS – new cases being recruited from primary care and others with chronic severe disease via the CHROME database.

An abstract from the most recent MEO research paper to be published can be found here: http://www.biomedcentral.com/content/pdf/1471-2296-11-89.pdf

Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research

Two follow up meetings relating to the MRC research workshop that was held in November 2009 took place during 2010. Summaries of the presentations and slides used at the November workshop are available via the MEA website. https://meassociation.org.uk/?p=935

We are still awaiting an announcement from the MRC as to what action they propose to take on the recommendations for research priorities that were made by the Prioritisation Group at their meeting on 4 June 2010. CS (who is a member of the Expert Group and the Prioritisation Group) has written to Professor Stephen Holgate (Chair) to ask when the MRC announcement might be made on funding for biomedical research. Minutes for the prioritisation meeting, along with the list of research priorities that were agreed, can be found here: http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174

Fortunately, there were no major reductions in government funding for scientific research in the Chancellor George Osborne’s October spending review statement.

A ministerial reply from David Willetts to questions on MRC research priorities in ME/CFS can be found on the MEA website: https://meassociation.org.uk/?p=3899

Lightning Process

Trustees held a further discussion on a controversial 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 and objections have been raised about the possible use of children and adolescents in this type of study and we are continuing to discuss these concerns with our colleagues in other ME/CFS charities. As a result of these discussions The MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern: https://meassociation.org.uk/?page_id=1341

This statement 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. However, the DoH refused to do so. Following a Freedom of Information request the identify the ethics committee that was dealing with the application was obtained and our statement was then forwarded to the Chairman. Unfortunately, due to initial secrecy surrounding the identity of the ethics committee, the information did not reach them till after the application had been approved.

We then passed our concerns to the National Research Ethics Service (NRES), who considered whether the local ethics committee should review their decision. More information on this approach can be found on the MEA website: https://meassociation.org.uk/?p=2720

Following a review of the decision, the NRES upheld the original decision to carry out the trial. We remain unhappy with certain aspects of the review process and will be writing again to the NRES in due course to take up various points relating to the Minutes of the meeting held in December where the ethics committee decision was reviewed..

A BBC radio discussion from Thursday 11 November about the Lightning Process – which included contributions from Professor Leslie Findley, Dr Charles Shepherd and Phil Parker and was chaired by Anne Diamond – can be heard on YouTube: https://meassociation.org.uk/?p=2921. A transcript is also available on the MEA website.

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 any future review of the NICE guideline on ME/CFS. Responses to the results of the FINE trial can be accessed via the MEA website: https://meassociation.org.uk/?p=925

We understand that results from the PACE trial are likely to be published in the medical journals sometime in late January or February 2011.

Results from a new study from Spain comparing CBT, GET and standard care can be found on the MEA website: https://meassociation.org.uk/?p=3870

Sleep Disorders Conference

CS reported on an important clinical and research conference in London in December that discussed all aspects of sleep disorders. Following on from this, he is writing a new MEA information sheet on Restless Legs Syndrome for the February issue of ME Essential and will be updating all our information on the management of sleep disorders.

Invest in ME Conference

Trustees agreed to pay for CS to attend this meeting in May.

Netherlands Medical Conference

CS has been invited to speak at a medical conference in the Netherlands in May.

New research proposals

Trustees held a further discussion on three new research proposals that have been submitted to the RRF for funding – two of which link in with the list of biomedical research priorities that have been identified by the MRC Expert Group on ME/CFS research

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.

Ramsay Research Fund Grant Application Form

Trustees discussed some practical problems that have emerged in transferring the paper version of the RRF grant application form into an on-line version.

SCOTTISH MATTERS

ED reported on a discussion by the Scottish Cross Party Group (CPG) in November on the formal circulation of the ‘Scottish Good Practice Statement on ME-CFS’ (SGPS) via the Chief Medical Officer for Scotland’s letter of 18th November, and the consequent opportunities for promotion of their use. (The SGPS was originally based on the MEA purple booklet for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues.)

The CPG also heard from Phil Mackie, who lead the Scottish Public Health Network’s ‘Health Care Needs Assessment of Services for People with ME-CFS’, which was also formally released on 18th November. The CPG discussed opportunities for engaging with Health Boards on their proposals for implementing the Needs Assessment recommendations.

Further consideration of the opportunities for developing understanding, practice and service delivery was due at a CPG meeting on Wednesday 19th January, but this meeting was cancelled on Tuesday 18th, due to unavailability of MSPs. A further CPG meeting is scheduled before the break-up of this Scottish Parliament prior to the election in May.

MEA ANNUAL MEDICAL MEETING

Following on from another very successful ‘Question Time’ meeting that was held in conjunction with WAMES in Cardiff on Saturday October 23rd, trustees discussed possible places and venues where the 2011 meeting might be helped.

The MEA annual medical meeting is an open and free meeting in a ‘ME Question Time’ format that we rotate around the country each year. Panel members include Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA).

If any local group is interested in co-hosting this meeting in September or October 2011, please let us know. The MEA pays for the full cost of the venue and any expenses incurred by panel members. All we normally ask from the local group is some practical help with publicity and local administration. We are keen to take this meeting to a part of the UK where we have not been before or recently – ie the South West, North West or North East in particular.

MEA LITERATURE

A fully updated Management File on the subject of Employment will appear in the February issue of ME Essential. The same issue will contain a short Management File of Restless Legs Syndrome. This will be added to the literature order form when we have updated the one of Sleep – this is planned for May.

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 can be downloaded from the MEA website. Extra paper copies can be obtained from the MEA at a cost of £1. This research was funded by the Ramsay Research Fund.

CS and TB reported on the new 40 page (2011) edition of ME/CFS/PVFS – An Exploration of the Key Clinical Issues. This is an expanded and fully updated sixth edition which now includes a full page on XMRV research. The booklet is now at the printers and copies should be available early next week.

MEA literature can be obtained using the website pdf ORDER FORM: https://meassociation.org.uk/wp-content/uploads/2010/09/MEA-Order-Form-November-2010.pdf or the 8 page order form insert in the February issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.

MEA WEBSITE

Trustees discussed some further minor alterations and additions to the new MEA website. Public reaction so far has been very favourable and we are dealing with a significant increase in requests for information as a result.

A number of important changes relating to how to contact various people and departments at the MEA by email have now been inserted – so please check that you are using the correct contact address.

The monthly on-line website survey feature remains very popular. Previous polls have asked about attitudes to flu vaccine, post-mortem research; GP skills and knowledge; how much people have spent on services/treatments outside the NHS, vaccines as trigger factors and opinions on DWP medical assessments that are carried out by ATOS. The current (January) question asks for opinions on the most useful source of information on 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 heavily used information and support service.

Up to the end of 2010 the service dealt with just over 1926 emails and 2932 phone calls – a total of almost 5000 enquiries during 2010.

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 administration@meassociation.org.uk

ME ESSENTIAL MAGAZINE

TB reported on the February issue of ME Essential, which will be mailed out in mid February.

The Editorial Board is always happy to receive constructive comments about any aspect of the magazine and we are intending to include a Readership Survey in this issue.

DATE OF NEXT BOARD MEETING

Provisionally fixed for Monday and Tuesday, 28 and 29 March 2011.
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Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
20 January 2010

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.