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, March 28th and on Tuesday morning, March 29th 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 some background information, or an MEA website link, relating to the issue that was discussed.
PRESENT
Trustees:
Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman by telephone link
Charles Shepherd (CS) – Honorary Medical Adviser
MEA Officials:
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Maya Thomas (MT) – Fundraising
Apologies:
Rick Osman (RO)
Barbara Stafford (BS)
Trustees were joined for both meetings 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 February 2011.
As noted in the website summary for the January meeting, there was a significant drop in some key areas of income during 2010 when compared to 2009 – unrestricted donations, gift aid and bank interest in particular. As a result, general expenditure ran ahead of unrestricted income for much of 2010.
Trustees once again 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 during 2011 were agreed last time. One immediate measure is to limit the page size of the magazine to 48 pages from now on.
The trustees also agreed that the previous practice of exempting The Ramsay Research Fund from any overheads should be altered – please see the Statement on this on the MEA website: www.meassociation.org.uk/?page_id=1086
Income from fundraising during 2010 showed 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 during 2011. Maya Thomas, our new part-time fundraising assistant is continuing to work closely with Tony Britton on a number of new fundraising initiatives. Trustees reviewed the latest progress report from Maya, who attended the meeting on this occasion.
There was also a welcome and significant increase during 2010 in the ring-fenced funding held by the Ramsay Research Fund.
Trustees reviewed the results of on-going changes to banking arrangements which are aimed at improving interest received on deposit accounts. Major changes were carried out during 2010 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.
Lucy Hawker, who has been on maternity leave, returned to the office at the beginning of March.
A letter from NR has gone 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 met with a member on Tuesday morning 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 a trustee 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: www.ncvo-vol.org.uk/vacancies/trustee-me-association
Trustees carried out some further forward planning arrangements for both the 2011 AGM and the 2011 trustee elections. Plans to hold the AGM on Tuesday 14th 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 twenty 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 decided to step down from our medical team at the beginning of the year and will no longer be dealing with medical or benefit enquiries.
Anne has agreed to accept our invitation to become a Patron of the MEA.
DR ELLEN GOUDSMIT
Ellen has decided to stand down as an official adviser but will be continuing to assist The MEA on an informal basis with issues relating to psychology. Trustees thanked Ellen for all her input and in particular the detailed advice she has been recently been providing regarding the PACE trial results.
LOUIE RAMSAY
Trustees have sent a message of sympathy to George Baker following the death of Louie Ramsay, daughter of Dr Melvin Ramsay and a Patron of the MEA. Obituaries for Louie appeared in several newspapers and the one from The Guardian is on the MEA website www.meassociation.org.uk/?p=5191. If anyone would like to send a card to George Baker we will pass these on.
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 cover 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. The impending changeover from ICB to ESA is going to add to this workload. 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 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, Emily Wren, raised funds for us when she ran in the Reading half-marathon last month. More details can be found here: http://runningforme2011.wordpress.com/
Four people will be raising money for the MEA in this year's London Marathon on 17 April. They all secured places through the ballot. They are: Steven Whitaker from Bury St Edmunds (www.justgiving.com/stevethepostman), Steve Black from County Antrim, Northern Ireland (www.justgiving.com/Steve-Black), Peter Dollman from Hemel Hempstead (www.justgiving.com/Peter-Dollman) and Tom Liddle from North London (www.justgiving.com/tom-liddle).
We are in the process of booking eight guaranteed places in the 2012 BUPA 10k run, which will take place along the Olympic route in Central London – more information in the June issue of ME Essential.
Amazon Walk to raise research funds for an ME/CFS tissue and post-mortem/brain bank:
Ed Stafford still has a fundraising page at http://meassociation.workwithus.org/Fundraising/Donate.aspx?page=1307 Over £9,000 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. First is a 20km trek, including an ascent of Scafell Pike in the Lake District, on 24-26 June. The second is a bike ride through Tuscany on 7-11 September. More details here:www.meassociation.org.uk/?p=3832
A brochure covering these events is available for downloading at the website and more information can be found in February issue of ME Essential.
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 – www.giveacar.co.uk/donate-a-car-to-charity/the-me-association
Collection boxes: Trustees agreed to place an order for two types of collection boxes – a small cardboard one for use in the home and a larger plastic one for use at events. This will take time to design and produce – more details will appear in June ME Essential.
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.
Christmas cards: Trustees approved a new Christmas card design. Cards will be available to purchase from September onwards.
Fundraising information: As reported in the January 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 phoning 01908 310052 between 9.30 and 17.00 Monday to Friday (please leave a message if the line is untended and Maya will get back to you).
PARLIAMENTARY MATTERS: APPG on ME
CS reported on the last meeting of the APPG on ME – which had the largest attendance of politicians for some time. This took place at Westminster on 16 February 2011. The main topic for consideration was research and there was an excellent presentation (followed by plenty of good questions) from Professor Stephen Holgate – who is Chairman of the MRC Expert Group on ME/CFS research.
The APPG parliamentarians decided that this should again 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 continue to hold closed meetings 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 encourage the new group to allow some form of public presence at future APPG meetings.
CS presented a report on the work of the new group set up by Professor Malcolm Harrington to examine the way in which ESA Work Capability Descriptors apply to fluctuating conditions such as ME/CFS. CS is a member of this group and a briefing paper was distributed to the politicians.
Other subjects discussed included child protection issues, the possible revision of the NICE guideline, welfare reform and possible replacement of DLA.
The minutes of this meeting are on the MEA website www.meassociation.org.uk/?p=5413
Details of the next meeting of the APPG on ME, which is a meeting with Care Services Minister Paul Burstow, are also on the website:
www.meassociation.org.uk/?p=5394
We would like to increase both the membership of the APPG and attendance of MPs at meetings – so please check if your MP is a member of this group. If not, please try to persuade him/her – by letter or preferably in person – to join and attend the next meeting. The current list of members of the new APPG can be found on the MEA website.
House of Commons Early Day Motion (EDM) on ME Research: More information on this EDM, which has now been signed by 116 MPs, can be found on the MEA website: www.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: www.appgme.org.uk
PARLIAMENTARY: Countess of Mar's Forward ME Group
Dr Jane Rayner, Chief Medical Member of Social Security Tribunals (the tribunal service which hears DWP benefit appeals) gave a presentation and answered questions at a meeting held on Wednesday 26th January 2011. This was an extremely useful presentation that covered a wide range of issues relating to DWP appeals. The content will be of use to anyone who is having to appeal against a DWP benefit refusal. A summary of the presentation can be found in the minutes for this meeting.
The last meeting took place on Tuesday 1 March. The main topic for discussion was the current state of NHS services for people with ME/CFS. This included a discussion on GP commissioning and the threat to ME/CFS referral services that are based on a biomedical model. Other topics included child protection and use of the Mental Capacity Act, PACE trial results and the NICE guideline review, and an update on progress in setting up the ME/CFS biobank. CS updated members on the work being carried out by Professor Malcolm Harrington's group on fluctuating conditions.
The minutes for these two recent meetings have been posted on the Forward ME Group and MEA websites.
As a follow up to the last meeting several members of the group signed a letter to The Times expressing concerns about GP commissioning in relation to services for people with ME/CFS. The letter was published in the paper edition of The Times. MEA website link: www.meassociation.org.uk/?p=4978
In relation to the ethics of the Lightning Process trial, the Countess of Mar tabled a parliamentary question in the House of Lords:
www.meassociation.org.uk/?page_id=1685
The Countess of Mar has asked a number of parliamentary questions in recent weeks – these can be found in the MEA website news archive – and took an active role in the debate on changes to the WCA descriptors:
The Forward ME Group website: 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:
WELFARE REFORM: ESA, WCA, DLA and ICB
Trustees reviewed the current MEA strategy regarding all the various benefit reforms that are now taking place, or are due to take place. The main issues currently relate to:
* The changeover from ICB to ESA that started in pilot form in October 2010 in Aberdeen and Burnley. This will now gather pace quite rapidly and we suspect it will result in many people with ME/CFS who currently claim ICB not being able to claim ESA.
* The government consultation regarding possible changes to DLA. ED has prepared the MEA response to the government consultation on DLA. This can be found on the MEA website: www.meassociation.org.uk/?p=4612
* 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: www.meassociation.org.uk/?p=1639 CS is a member of the group that has been asked to review the WCA descriptors that apply to people with fluctuating medical conditions. The report has to be completed by the end of April. Updates on progress can be found in the news archive section of the MEA website.
* The decision to bring in changes to the WCA descriptors as from 28th March. Motions in the House of Lords to try and annul the Statutory Instrument that brought in the new WCA descriptors were tabled in the House of Lords by both Lord Kirkwood of Kirkhope and the Countess of Mar. This led to a House of Lords debate on Wednesday 16th March. A television recording, and Hansard transcript of the debate, can be found on the MEA website: www.meassociation.org.uk/?p=5180
During the debate Lord Freud made the following very important statement in a response to the Countess of Mar:
”The internal review consulted a range of experts and groups and, as I described just now, tried to reach consensus. Significant concerns were expressed by the groups around the descriptors. I will not go into those because I am short of time, but I can respond to the noble Countess, Lady Mar, on fluctuating conditions. It must be possible for all the descriptors to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity.”
PACE TRIAL RESULTS AND NICE GUIDELINE REVIEW
Trustees discussed the PACE trial results, which have now been published in The Lancet, and the decision by NICE to not now carry out a planned review of the (2007) guideline on ME/CFS. The next guideline review date has been fixed for 2013. More information on the background to the NICE decision can be found on the MEA website: www.meassociation.org.uk/?p=5169
The MEA has sent a letter to the The Lancet. This can be found on the MEA website: www.meassociation.org.uk/?p=4900
We have also written to the Science Media Centre to complain about the way in which the PACE trial results were presented to the media and the subsequent unbalanced press coverage. A copy of this can be found here: www.meassociation.org.uk/?p=5041
More information on the PACE trial results, including a copy of the paper and accompanying editorial, can be found in the March news archive on the MEA website.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
RRF: XMRV and MLV:Trustees discussed the latest XMRV research results from validation studies and the continuing controversy relating to the contamination hypothesis. CS reported on discussions that he continues to have with UK virologists on this subject. The latest XMRV summary can be found in the November issue of ME Essential and on the MEA website: www.meassociation.org.uk/?p=2240.
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 he is continuing to have with virologists on how best to take this research forward in the UK – including the initiative by Dr Kate Bishop to re-test anyone here in the UK who has sent a blood sample to the US laboratory.
RRF: Professor Julia Newton et al, University of Newcastle: CS reported that this research proceeded according to plan during 2010 and that assessments have been completed on 25 subjects who were 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 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. 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 2010 issue of ME Essential magazine and on the MEA website: www.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: hwww.meassociation.org.uk/?p=642
RRF funding = approximately £38,000.
RRF: Biobank and Post-mortem tissue bank: CS updated trustees on both of these research initiatives.
Phase two of the co-funded feasibility study into setting up an ME/CFS blood bank (biobank) and post-mortem tissue bank was completed at the end of last year. This work 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. www.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, can be found 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 2010. More information, including the conference presentation abstract, can be found on the MEA website report: www.meassociation.org.uk/?p=3765
A paper describing the way in which we are hoping to set up a tissue bank has 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
CS reported on his visit in February to the opening of the new biobank facility at University College London. This is sited at the Royal Free Hospital in Hampstead, London. Our short term aim – in conjunction with AfME, a very generous private donor who has links to The MEA, and possibly another UK charity – is to set up an ME/CFS biobank during the summer of 2011. We are now confident that we are going to raise around £180,000 – the sum that is required to set up the facility and maintain it for a period of 18 months. Once the biobank has been set up the next stage will be to test the facilities through a small piece of research – which might, for example, involve a virological study. All those involved in the biobank project are very well aware of the need to establish a first class research facility that contains blood samples from well characterised people with ME/CFS (who will initially be recruited through the ME Observatory Disease Register). So we are submitting the proposal to very robust and critical peer review as we go along.
Plans for the post-mortem tissue bank are currently on hold because this will be a far more expensive and time-consuming project to set up.
RRF funding for feasibility studies = approximately £14,000
Trustees agreed at their November 2010 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 can then be asked to donate blood when, as hoped, we are able to continue to move forward with the establishment of a biobank that will then collect and hold blood samples for research purposes. Trustees agreed to a further extension to this funding so that the database at the London School of Hygiene and Tropical Medicine can now be maintained until July 2011.
RRF Funding for extension till July 2011 = approximately £2,000
Trustees agreed at their previous meeting 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 and is fully established in a UK hospital or research institute. As far as tissue and post-mortem samples are concerned, the November issue of ME Essential magazine contains information that can be placed in a 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 is 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.
An abstract from the most recent MEO research paper to be published can be found here: 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 took place last year. Summaries of the presentations and slides used at the research workshop are available via the MEA website. www.meassociation.org.uk/?p=935
Trustees discussed the recent announcements from the MRC regarding action being taken on the recommendations for research priorities that were made by the Prioritisation Group. Details can be found here: www.meassociation.org.uk/?p=4727
Minutes for the prioritisation meeting can be found here: www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174
Lightning Process: Trustees held a further short 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: www.meassociation.org.uk/?page_id=1341
Following a review of the decision, the NRES upheld the original decision to carry out the trial. We remained unhappy with certain aspects of the review process and wrote again to the NRES to take up various points relating to the Minutes of the meeting held in December where the ethics committee decision was reviewed. Trustees discussed the reply and what further action may be appropriate.
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: www.meassociation.org.uk/?p=2921. A transcript is also available on the MEA website.
CBT, GET and Pacing: FINE AND PACE Trials
Responses to publication of the results from the FINE trial appeared on the BMJ website, including one from The MEA. The replies can be accessed via the MEA website: www.meassociation.org.uk/?p=925
Trustees discussed the way in which results from the MRC funded FINE and PACE trials affected the review of the NICE guideline on ME/CFS and what further action may be appropriate, in addition to our letter to The Lancet, may be appropriate.
Results from a new study from Spain comparing CBT, GET and standard care can be found on the MEA website: www.meassociation.org.uk/?p=3870
Sleep Disorders Conference: Following on from his attendance at this conference CS has written 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: CS will be attending this meeting in May.
Netherlands Medical Conference: CS has been invited to speak at a medical conference in Amsterdam on 12th May.
RRF: 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.
Research into transcription factors and ME/CFS Trustees agreed to approve full funding for a research proposal that has been submitted by Professor Peter Behan, Professor Chris Hillier, Professor John Gow and Dr Abhijit Chaudhuri. The study will investigate the role of what are called transcription factors in ME/CFS. The study of transcription factors is an exciting and relatively new area of medicine and is something that is also linked in to XMRV infection – see recent paper in The Journal of Virology: http://jvi.asm.org/cgi/content/short/85/7/3179. The study will be carried out at Glasgow Caledonian University.
RRF funding: Approx £42,000 More information on this new research can be found in a website statement: www.meassociation.org.uk/?p=5392
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 TB reported on progress re a new electronic application form.
SCOTTISH MATTERS
ED reported on the final meeting of the Scottish Cross Party Group (CPG) before the elections in May. The meeting was inquorate and Andy Kerr MSP brought it to a close after a very short period of time. As the group will have not held an AGM by the close of parliament the future looks uncertain after the election. Unlike the APPG at Westminster, the Scottish XPG has to hold its meetings in public.
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 2010, trustees discussed several offers from local groups regarding places and venues where the 2011 meeting might be held.
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).
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.
MEA LITERATURE
A fully updated Management File on the subject of Employment appears in the February issue of ME Essential. The same issue contains 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.
We are in the process of updating our information leaflet covering Travel Insurance and want to hear about both good and bad insurers when it comes to purchasing travel insurance if you have ME/CFS.
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 £2. This research was funded by the Ramsay Research Fund.
The new 40 page (2011) edition of ME/CFS/PVFS – An Exploration of the Key Clinical Issues is now available This is an expanded and fully updated sixth edition which now includes a full page on XMRV research.
Trustees agreed to remove from circulation our leaflet on how to fill in the ESA application forms due to the fact that major changes to the Work Capability Assessment descriptors took place on 28 March and further changes may well occur as a result of the additional reviews covering mental health descriptors and those which apply to fluctuating conditions.
MEA literature can be obtained using the website pdf ORDER FORM:
www.meassociation.org.uk/wp-content/uploads/2011/03/MEA-Order-Form-March2011-use-this.pdf
01280 827070.
Kay Gilderdale book: This is being published by Random House on 14th April and is also being serialised in a national newspaper. Copies will be available on our literature order form following publication.
MEA WEBSITE
Trustees discussed some further alterations and additions to the MEA website. Public reaction to the changes so far 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 March question asked for opinions on the outcome of the PACE trial The April question is assessing reactions to antibiotics. 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 interested, please contact us via administration@meassociation.org.uk
ME ESSENTIAL MAGAZINE
TB reported on the February issue of ME Essential and plans for the next issue, which will appear in June.
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine and we have a Readership Survey on the website.
INTERNATIONAL ME ASSOCIATION
Trustees discussed the formation of a new organisation called the International ME Association. NR has written to the directors to explain that the similarity in names is causing some confusion. The MEA has no links to the IMEA.
DATE OF NEXT BOARD MEETING
Monday and Tuesday, 13th and 14th June 2011.
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
13th April 2010