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 June 13th and on Tuesday morning, June 14th 2011. Informal discussion on some of the topics also occurred on the Monday evening.
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.
Ewan Dale (ED) – Honorary Treasurer
Rick Osman (RO)
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Maya Thomas (MT) – Fundraising (on Tuesday am)
Neil Riley (NR) – Chair
Martine Ainsworth-Wells (Associate Trustee)
RO was only able to attend on Monday; BS was only able to attend on Tuesday.
In the absence of NR, the meeting was chaired by RO on Monday and by BS on Tuesday. Trustees were joined for both meetings by a former director of a leading UK company, who is kindly proving us with on-going advice and information on various aspects of administration and management.
Trustees passed on their best wishes for a speedy recovery to Neil Riley, who is recovering from an emergency operation. Neil will be recovering and convalescing at home for the next few weeks and will not therefore be able to deal with day-to-day management issues for a while.
FINANCES, ADMINISTRATION, PREMISES AND STAFF
ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of April 2011. Despite the very difficult economic climate for charities, it is encouraging to note that our general income is still running slightly ahead of expenditure so far this year. Trustees once again considered options for ‘keeping the books in balance’ during these difficult times as we have a duty to run the MEA in both a business-like manner as well as a charity.
There has been a small increase in funding held by the Ramsay Research Fund so far this year. Trustees reviewed on-going changes to banking arrangements which are aimed at improving the 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.
A letter from NR went out to local businesses and civic leaders in Buckingham in order to increase their awareness of our presence in the town but there has been very little response so far. RO led a discussion that covered a range of computer and IT issues, including the new MEA Facebook page.
MEA TRUSTEES and 2011 AGM
Trustees discussed a communication from a carer who has expressed an interest in becoming an MEA trustee. A meeting is being arranged to take this forward. 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 management, fundraising 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 also 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 forward planning arrangements for both the 2011 AGM and the 2011 trustee elections. Trustees standing for election this year are Neil Riley and Rick Osman. The AGM will be held in Buckingham on Tuesday 14th November. More details on both the AGM and the trustee elections can be found in the June issue of ME Essential.
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 the general income that is required to cover the basic running costs 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 changeover from ICB to ESA is now adding to this workload.
Trustees and staff therefore have to devote a significant part of their time to fundraising activities in order to maintain our current level of services and research activity. Maya Thomas, fundraising assistant, reported on current and future fundraising initiatives when she attended the meeting on Tuesday morning.
2011 Reading and London Marathons
The number of sponsored events continues to steadily increase and we are still 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 of our member successfully raised funds for us when she ran in the Reading half-marathon. More details can be found here: http://runningforme2011.wordpress.com/ and in the June issue of ME Essential.
Five people raised money for the MEA in this year’s London Marathon in April. They were: Steven Whitaker from Bury St Edmunds (www.justgiving.com/stevethepostman); Steve Black from County Antrim, Northern Ireland (www.justgiving.com/Steve-Black); Petern Dollman from Hemel Hempstead (www.justgiving.com/Peter-Dollman); and Tom Liddle from Finsbury Park, North London (www.justgiving.com/Tom-Liddle.
We have eight guaranteed places in the 2012 BUPA 10k run, which will take place in Central London on 27 May 2012. We already have three expressions of interest. More information in the June issue of ME Essential.
While runs, bike rides and other sporting events are very effective ways for carers, relatives and friends to raise money for The MEA, they are clearly not appropriate for people who are ill. Trustees therefore considered how people with ME might become involved in less active sponsorship events and we would also welcome the views of the membership on this.
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. BS told trustees that his hardback book – Walking the Amazon– has now been published and is already entering the best sellers list.
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
Maya is co-ordinating the design and production of a flatpack MEA collection box.
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 quick and easy 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: www.meassociation.org.uk, or the literature order form insert in the June 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 or contacting Head Office.
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: This year’s cards will be available to purchase from September onwards.
The ‘Big Give Christmas Challenge’:
Trustees agreed to apply to become part of this event – which involves matched fundraising activities. More information can be found in the June issue of ME Essential.
Annual Draw Tickets: Books of tickets for our Annual Draw will be in the June issue of ME Essential. First prize is £250.
As reported in the March 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: firstname.lastname@example.org or by phoning 01908 310052 between 9.30am and 5pm Monday to Friday.
APPG on ME:
CS reported on the last meeting of the APPG on ME. This took place at Westminster on Tuesday 10 May 2011 and was followed by a meeting with Paul Burstow MP, Minister for Care Services, at the Department of Health. The main topic during the discussion with Paul Burstow was NHS services for people with ME/CFS – in particular the threat of closure or change to a number of existing ME/CFS referral services, including the in-patient service at Queen’s Hospital, Romford. Other subjects discussed included child protection issues, research, and welfare reform.
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 Tristana Rodriguez 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 reformed APPG to allow some form of public presence at future APPG meetings.
It has now been agreed that three other ME/CFS charities – AYME, Tymes Trust and Invest in ME – can send a representative to APPG meetings. Notes from this meeting are available on the MEA website: www.meassociation.org.uk/?p=6360
Details of the next meeting of the APPG on ME on Wednesday June 22nd, which is the AGM combined with a session on issues affecting children and adolescents, will be appearing on the website. CS has prepared a briefing paper on current research activity for the meeting.
We would like to increase both the membership of the APPG and attendance of MPs at meetings – so please ask 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.
House of Commons Early Day Motion (EDM) on ME Research:
More information on this EDM, which has now been signed by 118 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
Countess of Mar’s Forward ME Group:
The last meeting took place on Wednesday 11 May and included a presentation from Arlene Wilkie, Chief Executive at the Neurological Alliance. The minutes for this meeting will shortly be posted on the Forward ME Group and MEA websites. The next meeting will take place on Wednesday 29 June.
The Countess of Mar has asked a considerable number of parliamentary questions in recent weeks – these can be found in the MEA website news archive – and took an active role in the House of Lords 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 a 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. This is now gathering pace quite rapidly and it is almost certainly going to cause great difficulty for some people with ME/CFS who are claiming ICB when they are re-assessed for ESA.
- The government consultation regarding changes to DLA and its replacement with a Personal Independence Payment in 2013 ED prepared the MEA response to the government consultation on DLA. This can be found on the MEA website: www.meassociation.org.uk/?p=4612. The Forward ME Group of Charities has been approached to help find people with ME/CFS who are claiming DLA and would be willing to take part in a consultation process to assess the possible impact of the changes taking place. The MEA has agreed to be involved in this procedure – more information on how to take part can be found on the MEA website: www.meassociation.org.uk/?p=6632 and in the June issue of ME Essential.
- 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 a group appointed by Professor Harrington that was asked to review the WCA descriptors that apply to people with fluctuating medical conditions. The report on fluctuating conditions and the WCA, which contains some very useful information in relation to ESA applications, can also be downloaded on the MEA website: www.meassociation.org.uk/wp-content/uploads/2011/05/Fluctuating_conditions_report_FINAL-1.pdf
- 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 about eligibility criteria in a response to an intervention from 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.”
- Atos medical assessments As part of Professor Harrington’s on-going review of DWP benefits, CS has been invited to visit Atos in London on June 21st to see how the much criticised LiMA computerised medical assessment process works. He will be reporting back on his visit to the Forward ME Group meeting on 29 June.
PACE TRIAL RESULTS:
As well as having one of our letters published in The Lancet ,we have written (along with a group of other ME/CFS charities) to the PACE trial organisers to query a number of aspects of the trial. A copy of this letter can be found on the MEA website: www.meassociation.org.uk/?p=6171. We have not yet received a reply to this letter.
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 communication 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. Information on all the latest XMRV developments can be found in the news section of the MEA website. CS reported on discussions that he continues to have with UK virologists on this subject. CS will be updating the MEA summary to take account of these developments. The current XMRV summary can be found in the November issue of ME Essential and on the MEA website: http://wwww.meassociation.org.uk/?p=2240″>.
RRF: Professor Julia Newton et al, University of Newcastle:
This RRF funded research involving muscle function in ME/CFS proceeded according to plan during 2010 with assessments being 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 skeletal muscle is producing energy and lactic acid during exercise. The results of this RRF funded research are 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:
This research meeting included 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 would 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: https://meassociation.org.uk/?p=975 An abstract from a 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 Professor 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:www.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: www.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 was 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 in the research section of the MEA website. www.meassociation.org.uk/?p=3765
Another article summarising progress so far, and how we have dealt with the practicalities of setting up both a biobank and tissue bank, can be found in the February 2011 issue of ME Essential magazine. CS visited the opening of the new biobank facility at University College London in February. This is situated 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 research charity – is to set up the ME/CFS biobank during the summer of 2011.
We are now confident that we are going to be able to raise up to around £180,000 – the sum that is required to set up the facility and maintain it for a period of 18 months. 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. On-going discussions and meetings have taken place during May and June with all those involved and our current aim is to open the ME/CFS biobank in July.
More information on this very important research initiative will appear in the news section of the MEA website as it comes in. 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 in 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
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 we are able to move forward with the establishment of a biobank that will then collect and hold blood samples for research purposes. Trustees have already 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 – when we hope the biobank will be opening. RRF Funding for extension till July 2011 = approximately £2,000.
Trustees agreed at a 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 the biobank facility has been set up and is fully established. As far as tissue and post-mortem samples is concerned, the November 2010 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 complete and several research papers have been submitted for publication. Abstracts from two of the most recent MEO research papers to be published can be found here: (1) www.biomedcentral.com/content/pdf/1471-2296-11-89.pdf (2) www.biomedcentral.com/1471-2458/11/402
Conclusions from latter paper: ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments. At the moment this is the most accessed on-line BMC paper this month.
Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research:
Recommendations for research priorities that were made by the Prioritisation Group 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
The resulting call for new research submissions, along with £1.5 million of ring-fenced funding, relating to the priority list closed on 7 June. CS reported that he had no news at present on the number of applications that had been received as a result.
Sleep Disorders Conference: Following on from his attendance at this conference CS wrote a new MEA information sheet on Restless Legs Syndrome for the February issue of ME Essential. CS has updated all his information on sleep management for a new Management File that appears in the June issue of ME Essential.
Invest in ME Conference: CS attended this meeting in May – a four page report will appear in the June issue of ME Essential.
Netherlands Medical Conference:
CS spoke at a medical and research conference in Amsterdam on 12th May. There was a very encouraging turnout from doctors who are involved in assessments for benefit, employment and insurance purposes in Holland. All those present received a copy of ME/CFS/PVFS – An Exploration of the Key Clinical Issues, which has now been translated for use in Holland.
RRF: NEW RESEARCH PROPOSALS:
Trustees discussed research proposals that have been submitted to the RRF for funding this year – 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.
Research into transcription factors and ME/CFS:
Trustees agreed at their March meeting to approve full funding for a research proposal from 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
MRC application: Trustees have endorsed and indicated a willingness to help co-fund a major biomedical research study that has now been submitted to the Medical Research Council to link in with their call for ME/CFS studies and the £1.5 million of ring-fenced funding.
ED reported on the situation in Scotland following the MSP elections in May. The final meeting in the previous parliament was inquorate and Andy Kerr MSP brought it to a close after a very short period of time. Previous committee members will be meeting Alex Fergusson (former CPG convenor) on Wednesday 15 June in order to liaise with MSPs with the aim of re-establishing the group in the new parliament. A report on this meeting, which agreed to re-establish the cross party group, is on the MEA website: www.meassociation.org.uk/?p=6630
MEA ANNUAL MEDICAL MEETING
Following on from another very successful ‘Question Time’ meeting that was held in conjunction with WAMES in Cardiff last year, trustees had previously discussed several offers from local groups regarding places and venues where the 2011 meeting might be held. It was eventually decided to hold this year’s meeting in conjunction with the local ME group (Kirklees Independent ME Support Group) in Huddersfield, West Yorkshire on Saturday 8 October. Admission is free and non-members are welcome to attend..
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. More details on the Huddersfield meeting can be found in the June issue of ME Essential magazine.
A fully-updated Management File on the subject of Sleep Disturbance appears in the June issue of ME Essential. We are still 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 www.meassociation.org.uk/?page_id=1345 Extra paper copies can be obtained from the MEA at a cost of £2. This research was funded by the Ramsay Research Fund.
The 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. At the March meeting trustees agreed to remove from circulation the 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. But we are now pleased to note that a fully revised MEA booklet, which takes account of these changes, is now available.
MEA literature can be obtained using the website pdf ORDER FORM: www.meassociation.org.uk/wp-content/uploads/2011/05/MEA-Order-Form-May-2011.pdf or the 8 page order form insert in the June issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
Kay Gilderdale book:
This was published by Random House on 14th April and was serialised in a national newspaper. Copies are available on our literature order form following publication. A review of the book appears in the June issue of ME Essential.
Trustees discussed some further alterations and additions to the MEA website, including on-line shopping, literature orders and membership renewals. Public reaction to the changes 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 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 June question is assessing public opinion on the latest developments relating to XMRV research. 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 is running very smoothly at the moment. 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 email@example.com
ME ESSENTIAL MAGAZINE”
TB reported on the June issue of ME Essential and plans for the next issue, which will appear in September. Among the contents for June are a report on the Invest in ME conference and medical items on curcumin, fatigue scales, Marshall Protocol, prognosis/outcome of ME/CFS, thyroid function tests, vitamin B12, and weight loss. The Editorial Board is always happy to receive constructive comments about any aspect of the magazine as well as contributions.
MEDIA: We are currently working with BBC Alba television is Scotland on a proposed programme covering various aspects of ME/CFS. More information on this initiative can be found on the MEA website and our Facebook pages.
DSM 5 CONSULTATION PROCESS: Trustees discussed and approved a submission from the MEA to go to the American Psychiatric Association. This can be found on the MEA website www.meassociation.org.uk/?p=6619
DATE OF NEXT BOARD MEETING: Monday and Tuesday, 5 and 6 September.
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
20 June 2011