This is a summary of key points to emerge from a meeting of The ME Association (MEA) Board of Trustees. The full day meeting took place in Buckingham on Monday 29 April 2013.
This is a summary of the meeting – 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, and/or an MEA website link, relating to the issue being discussed.
Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser
Nicki Strong (NS)
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Helen Darling (Administrative Assistant)
David Allen (DA) – Associate trustee
Martine Ainsworth-Wells (MAW)
Rick Osman (RO)
FINANCES and ADMINISTRATION
ED updated trustees on the current financial position. This was followed by a discussion on the monthly management accounts for the period up to the end of February 2013.
Despite considerable on-going difficulties faced by charities in the current economic climate it is very encouraging to once again report that our general income from all sources has continued to remain ahead of expenditure for the first two months of 2013.
Trustees considered further 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.
PREMISES and STAFF
Helen Darling, part-time administrative assistant, has now been in post for 6 months and is participating in on-going staff training in all aspects of our work. As a result, Helen is now dealing with an increasing amount of work connected to the ME Connect email service.
Trustees met with Elaine Newman, our newly appointed fundraising assistant. Elaine will start working for The MEA in May.
Trustees agreed to fund an update of part of the Head Office computer system at the last Board meeting. DA reported that this work has been costed and is due to start very shortly.
The Duke of Kent attended the launch of the ME Research Collaborative on Monday 22 April. Following the death of two of our well known Patrons in 2011 – actress Louie Ramsay, daughter of Dr Melvin Ramsay, and her partner the actor George Baker – we appointed consultant neurologist Professor Peter Behan to the role of Patron. Trustees continue to discuss other possible candidates for this role and always welcome suggestions from MEA members on this subject.
FUNDRAISING INITIATIVES and DONATIONS
As the MEA receives no government funding we have 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 costs of the charity and Head Office administration.
We are also facing a situation whereby people are reducing donations to charities in general. At the same time, demand on support and information services is steadily increasing, especially in relation to benefit and employment information now that major changes to the welfare/benefit system are taking place.
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.
The 2012 Big Give ‘Christmas Challenge’ and ME Awareness Month
The MEA took part of this event – which involved matched fundraising activities – for the first time in December 2011. Just over £5,500 was raised. The money was used to fund the 2012 training programme for our ME Connect volunteers.
Following the result in 2011 Tony Britton submitted a further successful application for 2012. This year we will be using the money as part of our contribution to ME Awareness Week.
The aim is to educate GPs on ME/CFS through distribution of a fully updated 2013 version of the MEA ‘purple booklet’ – ME/CFS/PVFS – An Exploration of the Key Clinical Issues – and asking members and other PWME to tell us which doctors’ surgeries they think would most benefit from receiving the booklet. We already have over 2000 surgeries/GPs on our list – an outstanding achievement! CS has now finished work on the new updated edition and we are now at the final proof reading stages.
We have raised over £9000 in confirmed pledges – which will pay for around 4000 copies of the purple booklet.
Cycling, running, swimming and walking events and the 2012 BUPA London 10k race
We have a growing number of supporters who are taking part in activity events all around the UK.
Past and future events include the Abingdon 10K, Bristol half marathon, Brighton marathon, Edinburgh marathon, Festival Hall Marathon 2013, Fred Whitton 112 mile cycle challenge round the Lake District, Great North Run, Great Scottish Run 2012, Greater Manchester 10K, Jane Tomlinson’s Run for All Leeds 10K, Leeds half marathon, New Forrest half marathon, London to Paris cycle ride, Reading half marathon, Robin Hood half marathon, Roseland August Trail, Sheffield half marathon, Stafford half marathon, Swindon (Nationwide) half marathon, Yorkshire Dales sponsored walk – a well as Pampered Chef nights, Parachute jumping, Worcester Zombie Walk, Zumba dancing, and the 5 Peaks Challenge.
We have 22 places (with 14 definite expressions of interest) for the BUPA 2013 London Marathon and 2 places in the 2013 Dublin marathon.
Other fundraising events – ideas always welcome!
While runs, bike rides, skydives 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. So we continue to welcome the views of members on how people with ME/CFS might play a more effective role in fundraising.
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 condition the car is in. Fill in the form here – www.giveacar.co.uk/donate-a-car-to-charity/the-me-association
Flatpack collection boxes for loose change are available from Head Office. These are advertised in the magazine and on the website and are be sent out free of charge
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 Argos, John Lewis, M&S, and Amazon via the MEA website is quick and easy. In addition, 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. Make a reminder note on or near your computer and spread the word to friends.
Mobile phone and ink cartridge returns and trolley coins
Envelopes for the return of ink cartridges and mobile phones can be ordered by using this link: www.therecyclingfactory.com/meassociation
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 ME Essential magazine, or by phoning MEA Head Office on 01280 818968 or 818964.
The MEA discontinued selling blue ribbons when current stocks ended. We decided to replace this item with a top quality pin badge. These are now in stock. Further details can be found HERE and in the May issue of ME Essential magazine.
PARLIAMENTARY MATTERS: APPG on ME
The first APPG meeting of 2013 took place on Tuesday 15 January. This involved a wide-ranging discussion on benefits and welfare reform. Unfortunately, presentations from DWP Minister (Mark Hoban) and a representative from Atos did not take place – because both were unable to attend. Minutes of this meeting can be found on the MEA website.
CS reported on the second meeting of the APPG on Wednesday 13 March where the subject for discussion was severe ME/CFS. This included presentations from Professor Derek Pheby (epidemiologist at the New University of Buckingham) and Dr Claire McDermott (University of Southampton). Minutes for this meeting, including summaries of the two presentations, can be found on the MEA website: www.meassociation.org.uk >> April news items.
The next APPG meeting will take place in June. This will include the AGM and election of officers.
Representatives from the following charities are invited to attend APPG meetings: AfME, BRAME, Invest in ME, MERUK, MEA, ReMEmber, Young ME Sufferers Trust and 25% Group.
The APPG parliamentarians have decided that meetings should remain closed – so attendance is restricted to MPs, members of the House of Lords, the APPG Secretariat (Charles Shepherd from MEA plus Sonya Chowdhury from AfME) and representatives from the main national ME/CFS charities. The decision to continue to hold closed meetings is in the hands of the parliamentarians – not the Secretariat. While we appreciate 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 APPG to gradually enlarge the public presence at their meetings.
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 at a constituency surgery – to join and attend the next meeting.
ED reported on recent meetings in Scotland and the preparations for the ME Awareness Week presentations at Holyrood in the evening of Wednesday 15 May. The board discussed the circumstances for effecting development of appropriate service provision in Scotland and opportunities for engendering further research.
Report of APPG Inquiry into NHS Services
A paper copy is included in the MEA literature list (as a free item) in ME Essential. The report can also be downloaded from the MEA website.
PARLIAMENTARY: Countess of Mar’s Forward ME Group
The first meeting of 2013 that took place on Tuesday 15 January when Professor Malcolm Harrington gave a very helpful presentation and answered questions. The Minutes for this meeting can be found in the February news archive on the MEA website.
The next meeting of the group will take place on Tuesday 14th May.
The Countess of Mar continues to ask regular parliamentary questions on all aspects of ME – these can be found in the MEA website news archive – and has taken a very active part in the Welfare Reform Bill as it passed through the House of Lords. She also initiated the House of Lords debate on the PACE trial on Wednesday 6 February – a Hansard transcript and video of the debate can be found in the February news archive on the MEA website.
The Forward ME Group website has information about the group and archives of minutes from past meetings.
Westminster Health Forum (WHF)
CS now attends meetings organised by the WHF – an organisation that brings together policymakers in Parliament, Whitehall and government agencies to engage in discussion on public policy relating to health and healthcare with key stakeholders. These include health professionals in the NHS and the private sector, representatives of the organisations they work in; businesses in the healthcare and pharmaceutical sectors and their advisors; patients’ and other interest groups; academics and commentators, along with members of the reporting press. www.westminsterforumprojects.co.uk/forums/index.php?fid=westminster_health_forum
Health Committee Inquiry into Management of Long Term Conditions
CS updated trustees on the MEA submission to this parliamentary inquiry.
DWP BENEFITS AND WELFARE REFORM: DLA, ESA and PIP
Trustees reviewed the current MEA strategy regarding various benefit reforms that are taking place, or are due to take place.
Changeover from ICB to ESA. This process continues to cause great difficulty for many people with ME/CFS who are currently claiming ICB when they are re-assessed for ESA.
DLA and the replacement with a Personal Independence Payment (PIP)
CS updated trustees on the changeover from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). This process will start to take place for all new claimants in two stages – depending on where you live in the UK. The first stage is in April; the second stage is in June. CS previously reported on a meeting held at the DWP on Tuesday 12 February to discuss the new criteria for claiming PIP – in particular the inclusion of the words reliably, repeatedly and safely in the assessment process. CS has prepared an MEA information sheet on PIP for the May issue of ME Essential. Updated information on the changeover will be provided on the MEA website and on MEA Facebook.
Professor Malcolm Harrington’s Independent Review of the Work Capability Assessment.
A copy of the MEA submission to this review is on the MEA website: www.meassociation.org.uk/?p=1639.
CS is a member of the group appointed by Professor Harrington that has reviewed the WCA descriptors that apply to people with fluctuating medical conditions. Their report on fluctuating conditions and the WCA, which contains some very useful information in relation to ESA applications and appeals, can also be downloaded on the MEA website: www.meassociation.org.uk/wp-content/uploads/2011/05/Fluctuating_conditions_report_FINAL-1.pdf
Fluctuating conditions report and ESA
As noted above, representatives from five charities – Forward ME Group, Arthritis Care, MS Society, National AIDS Trust, and Parkinson’s disease – have been working with Professor Malcolm Harrington on his independent review of the Work Capability Assessment descriptors. The group’s report on fluctuating medical conditions and the WCA descriptors was completed in April 2011 and was very well received by Professor Harrington. As a result, the charities spent the rest of 2011 with a Scrutiny Group appointed by the DWP in order to reach agreement on a final set of conclusions and recommendations, This work was completed in November 2011 and was then forwarded to Professor Harrington and the DWP so that it could be included in Professor Harrington’s report on year two of his review.
Testing the recommendations in the Fluctuating Conditions Report
Having received the FCG recommendations the DWP took their time in deciding how our revised WCA descriptors – which are also intended to assess severity and fluctuation in relation to all the tasks that are included in the WCA – could be objectively tested against the current WCA descriptors. We also proposed two new descriptors covering fatigue and pain.
At the end of June 2012 the group called to a meeting at the DWP where we were informed that an evidence based review (EBR) of our work will now take place. This involved an intense period of further work over a six week period during the summer of 2012 in order reach agreement with the DWP on how our proposals should be objectively tested against the current descriptors.
CS reported that we are now at the stage where testing is due to take place in Manchester and Newcastle to compare the existing and proposed WCA descriptors. A total sample of around 1000 ESA applicants who are due to undergo a WCA with Atos Healthcare will be asked if they will participate in an additional assessment on the same day as part of the EBR. This is a purely voluntary process but we hope that people with ME/CFS will take part if invited to do so. Two healthcare professionals will be involved in the initial (and current WCA) assessment. Following this a second assessment will take place that will involve asking additional questions and gathering additional information that is needed for the charities version of the assessment to be completed. The raw data will also being passed to an Expert Panel for their assessment of fitness for work and the DWP are in the process of recruiting people to form 30 to 40 Expert Panels. Members of the Expert Panels will have backgrounds in occupational health, general practice, occupational therapy, and physiotherapy. Expert Panel decisions on fitness to work will be quality assured by a small number of quality assurance panels with more work related or condition specific expertise. Analysis of the results will take place during the late summer/autumn of 2013 with the aim of producing an interim report for discussion in August. An independent scrutiny group, chaired by Professor Harrington, is overseeing this work.
Benefit review seminar meetings and seminars
Key points to emerge from charity representatives during the course of previous joint discussions include:
* Overall, there is still very little noticeable change taking place to the way in which people are being dealt with by the DWP and Atos
* There is very little evidence of medical reports from claimant’s health professionals being obtained or taken notice of – even when they have been obtained
* Claimants on low incomes cannot afford to pay for medical reports – which places them at a significant disadvantage
* Those living in areas with no access to specialist referral services are also being disadvantaged when it comes to obtaining supportive medical evidence
* People are still being rushed through Atos interviews without being listened to.
* Atos reports are still being reported as factually incorrect
* The Lima computer programme used by Atos during medical examinations is more concerned with functional assessment and describing a typical day at home and not fitness for work.
* People with fluctuating medical conditions do not have ‘typical days’
* Information provided to medical examiners by Atos is in some cases out of date and inaccurate
* The CAB representative pointed out that 60% of successful ESA appeals came from claims that had originally been awarded zero points – this indicates a major flaw in the ESA decision making process
* The DWP needs to define what it means by meaningful work
* Assessments for patient groups for whom the current WCA process is acknowledged to be flawed (eg ME/CFS) should be suspended until suitable descriptors have been put in place.
ESA feedback to The MEA
Feedback to The MEA indicates that people are often finding it very difficult to obtain ESA. However, a significant proportion are being successful if they go to appeal. If anyone is applying for ESA, or is involved in the transfer from ICB to ESA, please read our updated guidance leaflet on how to fill in the complex paperwork and the fully updated 10 ‘top tips’ on ESA. It is also worth obtaining the fluctuating conditions report – this can be downloaded free from the MEA website.
The decision to bring in changes to the WCA descriptors as from 28th March 2011.
Motions in the House of Lords to try to annul the Statutory Instrument that brought in the new WCA descriptors were tabled by both Lord Kirkwood of Kirkhope and the Countess of Mar. This led to a House of Lords debate on Wednesday 16th March 2011. A television recording, and Hansard transcript of the debate, can be found on the MEA website: https://meassociation.org.uk/ ?p=5180 During the debate, Lord Freud made a very important statement about ESA eligibility criteria in a response to an intervention from the Countess of Mar: “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 visited an Atos assessment centre in London on to see how the much criticised LiMA computerised medical assessment system works. A summary of his visit was sent to the DWP and Professor Harrington.
Professor Harrington’s review of WCA: Year 3 report
CS attended a meeting at DWP Headquarters on November 20th 2012 to discuss the findings and recommendations contained in Professor Harrington’s third report on the WCA. A summary of this meeting, and a link to the report, can be found in the November news archive on the MEA website. This is the final report from Professor Harrington, who is now retiring from his DWP work. Professor Harrington has been replaced by Dr Paul Litchfield, an occupational health physician who works for BT.
ESA 50 form and ESA paperwork
The ESA50 form has been revised, taking note of some (but not all) of the recommendations put forward by the fluctuating conditions group. A copy of the new form, along with background information, can be found in the news archive for January 2013 on the MEA website.
The MEA information leaflet which explains how to fill in the complicated ESA paperwork has ben fully revised and updated – as has our leaflet covering 10 key points relating to ESA applications and appeals..
Disabled Facilities Grant
CS reported that a new MEA information sheet covering the Disabled Facilities Grant has been prepared and will be available shortly.
Meeting with Mark Hoban MP, Minister of State at the DWP
CS reported that he has been invited to a meeting with DWP Minister of State Mark Hoban MP at DWP HQ on Tuesday 30th April to discuss benefit issues. This will include the evidence based review into changes that have been recommended by the fluctuating conditions group and mental health groups into the way in which the WCA assesses fitness for work.
ED reported on events and meetings he has attended and is due to attend, including an ME Awareness Week Event at Holyrood on the evening of Wednesday 15 May. Trustees again discussed the development of ME awareness and service provision in Scotland, including the new ME/CFS service in Lothian.
At the December 2012 meeting BS and NS led a discussion on how the subject of ME/CFS was covered (or not covered) in both ward-based education and lecture material at UK medical schools. It was agreed that NS would take this forward by initially taking to some medical schools about what (if anything) and how they teach medical students about ME/CFS. A more comprehensive survey of the situation may then follow – with the aim of producing a report that can be submitted to the APPG on ME.
NS updated trustees on progress. As part of an ongoing project with a local charity, Integrated Neurological Services, students from St George’s Medical School and the Richmond and Kingston ME Group, she and others from the group have been raising awareness with medical students about the experience of people with ME and their carers. Following the encouragement of some of the students she has approached St George’s directly about the possibility of facilitating ME awareness training as part of the curriculum. The next step is for a presentation outline to be prepared for their consideration.
MEA ANNUAL MEDICAL MEETING
The MEA annual medical meeting is an open and free meeting in an ‘ME Question Time’ format that we rotate around the country each year. Panel members normally include Jane Colby (Tymes Trust), Sue Luscombe (registered NHS dietitian) Dr Charles Shepherd (Hon Medical Adviser, MEA), 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.
The 2013 meeting is going to take place in Liskeard in Cornwall on Saturday 28 September and all the above speakers are confirmed. The meeting will be held in conjunction with local groups in Devon and Cornwall. Detail regarding venue etc will appear in the May issue of ME Essential magazine.
We are pleased to announce that following an approach from the local group in Oxford we have agreed to hold the 2014 Question Time meeting in Oxford – date and venue to be arranged.
OTHER MEETINGS: Current, Future and Previous
Invest in ME conference CS and NS will be representing the MEA at this meeting on 31 May
Burgess Hill Meeting on Saturday 11 May As part of ME Awareness Week CS will be speaking at a public meeting in Burgess Hill, Sussex that has been organised by ReMEmber. Dr Amolak Banal will also be giving a presentation. More information can be found in the Diary section on the MEA website.
Open Medicine Institute meeting on ME/CFS in New York CS attended the first meeting of this international collaboration of clinicians and researchers that took place in June 2012.
The meeting was organized by Dr Andreas Kogelnik from the Open Medicine Institute in California. Among well known names attending from both the USA and Europe were Dr Lucinda Bateman, Dr Oysten Fluge, Dr Nancy Klimas, Dr Charles Lapp, Dr Olaf Mella, Dr Dan Peterson, and Dr Ila Singh. A number of researchers who do not currently work in ME/CFS also attended.
From Tuesday evening till Friday morning a group of about 15 met formally and informally over breakfast, lunch and dinner at the Harvard Club in New York. Presentations and discussions covered a wide range of clinical and research topics with an emphasis on the role of infection and immunology in the causation of ME/CFS and how this knowledge should be applied to treatment that addresses the underlying disease process in ME/CFS – rather than just providing symptomatic relief.
Rural Medical Practitioners Association CS gave a presentation on chronic fatigue, ME and CFS at their annual conference on Wednesday 26th September in Wales. Over 100 GPs from all over the UK attended and everyone received a copy of the MEA purple booklet.
Northern Ireland meetings Dr Derek Enlander invited CS to take part in a medical conference in Newry, Northern Ireland, on November 11th 2012 Other speakers included Dr Judy Mikovits and Dr William Weir. CS powerpoint slides for this meeting can be found on the MEA website (November news archive)
Along with Dr Wiliam Weir and Dr Gregor Purdie, CS spoke at a meeting for doctors in Newry on Saturday 23 March 2013.
North East Research Meeting CS attended a research meeting in Middlesbrough on Wednesday 17 October 2012 that was organized by ME North East. Among the speakers were Professor Julia Newton on the subject of autonomic dysfunction.
MEA SURVEY ON CBT, GET and PACING
As part of MEA forward planning for our submission to the NICE guideline review, which is scheduled to take place in 2013, the MEA produced a very comprehensive website questionnaire that will provide much needed patient evidence on all aspects of these approaches to management.
The website questionnaire closed on September 1 2012 with over 3000 people taking part and 1400 complete responses. The results are now being analysed and a summary of basic data is being prepared – from which a comprehensive report is emerging.
A sub-group of trustees met with NR at his home in Dorking to further discuss the analysis of the preliminary results on Wednesday 6 February.
NICE GUIDELINE REVIEW
CS updated trustees on the current situation regarding the uncertainty surrounding the NICE guideline review following receipt of a letter from NICE which indicates that this could now be in the form of a rapid internal review. This correspondence with NICE is in the January news archive on the MEA website.
Trustees discussed the latest paper on the PACE trial results, which covers what is termed recovery.
The paper, along with the preliminary MEA response to Psychological Medicine, can be found in the February news archive on the MEA website: www.meassociation.org.uk/?p=14460
CS has sent in a shortened and amended reply to this paper. The MEA response has been accepted for publication but not yet published in the journal.
We are currently collecting information on life insurance providers – please let us know if you have information about insurance companies that are willing to provide life cover and those that are reluctant to do so, or want to include a significant excess.
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 https://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 will shortly be replaced with a fully updated 20113 edition.
ME Alert Card Trustees agreed to make some minor changes to this very popular credit size card at the next reprint. This will include a reference to problems with standing.
Dr Melvin Ramsay’s book on the history of ME Reprints of our 2005 re-publication of Dr Melvin Ramsay’s ground-breaking book on the ME epidemic at the Royal Free Hospital 50 years earlier are now available. This book, which also covers some of the other famous outbreaks around the world, can be obtained using the MEA literature order form. It cannot be purchased in shops.
Trustees previously agreed to investigate the possibility of making some of our books and literature available in an electronic format.
Trustees discussed on-going alterations and additions to the MEA website. If anyone has any comments or problems with either content or layout of our website please let us know.
RO previously led a discussion on the new on-line shopping and membership opening/renewal facility – which will include merchandise, literature, books and membership subscriptions. We hope to be able to launch this new website facility fairly soon.
The monthly on-line website survey feature remains very popular. Previous polls have asked about attitudes to flu vaccine, post-mortem research; how much people have spent on services/treatments outside the NHS; Rituximab vaccines as trigger factors and opinions on DWP medical assessments that are carried out by Atos. The April question is collecting information on whether people with ME had a happy childhood. This is because some researchers believe that significant childhood trauma can be a risk factor for the development of ME/CFS. The May question is asking whether ME/CFS charities should be joining the new UK Research Colaborative.
Results from all the previous on-line surveys can be found on the MEA website. If anyone has a suggestion for a future poll please let us know.
ME Connect training sessions will again take place this year. During 2012 training sessions covered common medical queries and employment and occupational health issues from a legal point of view. Further training sessions included emotional support and managing ME/symptomatic relief.
Total telephone calls for 2012: 2842 (3106 in 2011).
Email total 1084 (1666 in 2011).
The overall total for ME Connect in 2012 is: 3926 (4772 in 2011).
The drop in emails, and consequently the overall total, is partly due to various website changes and improvements that have been introduced. This resulted in administrative and other office emails no longer going via ME Connect.
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 very keen to hear from anyone who would like to join ME Connect as a volunteer. If interested,contact us via firstname.lastname@example.org
ME ESSENTIAL MAGAZINE
TB reported on the May 2013 issue. The aim is to publish this by mid May. Copy for the August issue should be with TB by the end of June.
Trustees reviewed feedback on the content and layout of the magazine that has been received following the request in the February issue.
Overall, members were very satisfied with the content and balance. However, there was a split of opinion in other areas. Some wanted more ‘recovery’ stories whereas others wanted less. Trying to achieve the right balance isn’t always easy – so we are intending to introduce some changes, including more research information, on a gradual basis.
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine as well as contributions.
We are also keen to receive good quality accounts of ‘patient journeys’ – the process from onset, through to diagnosis and lessons learnt about management. These accounts should not be ‘plugs’ for unproven treatments and supplements!
Contents for the May issue include items on:
Disabled Facilities Grant
Nausea and vomiting
CS reported that he had been asked to write a review of ME/CFS for Public Service: Europe magazine.
Trustees previously discussed the media coverage of the Lipkin XMRV study results – in particular the very unhelpful and unbalanced coverage in online blogs in the Daily Telegraph. The MEA then wrote to the Daily Telegraph to express our dismay at the way the story had been covered and requested a meeting to discuss future coverage of ME/CFS research. As a result CS was actively involved in the preparation of a major feature covering biomedical research into ME/CFS. This appeared on Monday 26th November. It can be read HERE.
Trustees discussed recent media coverage of ME/CFS, including a forthcoming article in The Sunday Times.
Radio programmes: CS has been interviewed on various radio programmes over the past few months – including Radio Marlow, Radio Europe and BBC Radio Coventry and Warwick (the previous Friday) .
ME AWARENESS WEEK
This is running from Sunday 12 May to Sunday 19 May. We are supporting the ‘All Fall Down’ demonstration at Westminster on Sunday 12 May organised by parents of children with ME from London ME Groups (More details can be found on the MEA website: www.meassociation.org.uk/?p=15068 and a special Facebook page: www.facebook.com/events/325645887538120/); also the publication and dissemination to GPs of the 2013 edition of the MEA purple booklet.
MEA HEAD OFFICE ARCHIVE
GB reported that the updating of the office archive and library was almost complete. As a result we now have a number of spare ME/CFS books that we are willing to donate to a local group. The only condition is that they are collected from Buckingham or the cost of postage is covered. Details of the book list can be found on the MEA website and MEA Facebook.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
CS updated trustees on MEA and other initiatives that have been taking place since publication of results from the clinical trial that took place in Norway.
The MEA has worked with UK representatives of the Norwegian research group in order to obtain media publicity for the trial results. Examples include coverage via the BBC, New Scientist and Daily Mail.
CS has briefed the APPG on ME at Westminster, and the Forward ME Group, on the results. The Chair of the APPG has written to the Medical Research Council to add encouragement to the need to set up a UK trial. This was discussed with Sir John Savill when he attended an APPG meeting in 2012.
CS has discussed the results, and a possible preliminary protocol for a UK clinical trial, with leading experts at University College London in the use of this drug and with the chair of the MRC Expert Group on ME/CFS research. Rituximab was also discussed in some detail at the research meeting that CS attended in New York in June 2012 – see meeting reports in the first part of this summary.
The MEA has made it clear that the Ramsay Research Fund is very happy to look at funding proposals for a UK clinical trial. Preliminary discussions have therefore taken place with UK researchers who may be willing to organize some form of further clinical trial – even if this was small in number given the enormous costs involved.
Unfortunately, this initiative has not progressed into a formal application for funding being received. Trustees have discussed a number of other options to try and stimulate interest here in the UK – including the possibility of raising guaranteed financial support, which would need to be well in excess of £200,000 – with a UK group of research-funding ME/CFS charities. We have also discussed the possibility of funding an overseas group that have indicated interest in carrying out a clinical trial and stated that we would be willing to consider a proposal if those involved want to submit one.
A note of caution: This was one small clinical trial. We need to see the results from further clinical trials before coming to any firm conclusions about the way in which Rituximab might work in ME/CFS and whether or not it is an effective form of treatment for what may be a sub-group of people with ME/CFS who have an autoimmune component. We do not want to see a repeat of the false hopes created by the XMRV research.
XMRV and MLV:
The results of the Lipkin study – the US government funded study whereby blood samples from 150 people with ME/CFS and 150 controls were tested blind in 3 different laboratories – have now been published. Results from this study confirm that there is no link whatsoever between XMRV and ME/CFS.
An MEA statement on the Lipkin study can be found in the September 2012 news archive on the MEA website, along with numerous items of press coverage.
Abstracts from research papers relating to XMRV and ME/CFS can be found in the news archive on the MEA website.
AMERICAN RESEARCH ON EXERCISE CAPACITY
NS led a discussion at the December 2012 meeting on the American research into exercise tolerance and it was agreed that there was a need to stimulate UK interest in this area. It was also agreed to approach research contacts both here in the UK and in the USA about the possibility of carrying out a replication study here in the UK.
SUMMARY of RESEARCH THAT HAS BEEN FUNDED, OR IS BEING FUNDED BY RRF
RRF and MRC: Professor Anne McArdle, University of Liverpool – assessment of mitochondrial dysfunction in ME/CFS
University of Liverpool press release:
Scientists at the University of Liverpool are the first to use a new laboratory technique that could reveal the causes of Chronic Fatigue Syndrome (CFS).
CFS is a severely debilitating illness, characterised by prolonged fatigue that can be triggered by minimal activity. Fatigue is accompanied by symptoms that may include painful muscles and joints, disordered sleep patterns, gastric problems and cognitive impairment.
The causes of the condition are unknown, but some studies have suggested that a defect in the energy producing components of muscle cells, called mitochondria, could be responsible. Other studies, however, have not been able to demonstrate this defect. It is thought that limitations in the methods used to determine mitochondrial function in human muscle fibres could be the reason why the causes of CFS have been difficult to explore.
Scientists at Liverpool are the first to implement a newly developed technique that is more sensitive to identifying mitochondrial function within the muscle’s fibres. Researchers anticipate that these new methods will demonstrate whether skeletal muscle mitochondria in patients with CFS are dysfunctional, which would result in muscle fatigue and further complications leading to chronic inflammation and pain.
Professor Anne McArdle, from the University’s Institute of Ageing and Chronic Disease, said: “The mechanisms that lead to debilitating muscle fatigue and pain in CFS patients are unknown. The time required for diagnosis further complicates the identification of the factors responsible for triggering the illness. Reversal of the severe fatigue that follows remains the most promising form of treatment.
“Scientists have hypothesised that mitochondria malfunction, significantly reducing the energy supply to the muscle cells that allow the body to carry out its daily activities. The pain and inflammation that follows can cause further mitochondrial abnormalities and so the vicious cycle of events continue.
“At Liverpool we have established newly developed techniques in the laboratory that can identify dysfunction as it occurs in the muscle cells. It is at this point we can look at interventions to reverse or halt further damage.”
RRF funding: £30,000
CS has arranged to visit the research centre to see work in progress. We have asked the research group to prepare a short summary for ME Essential. A summary of this research was presented to the UK ME/CFS Research Collaborative meeting on Monday 22nd April.
RRF: Professor Julia Newton et al, University of Newcastle
This RRF funded research involves muscle function in ME/CFS. 25 subjects were recruited via the Northern Regional ME/CFS Clinical Service. The assessment procedures included testing autonomic nervous system function, muscle performance, an exercise physiology protocol, and body composition (ie the amount of fat and muscle present). The second phase of the study involved the use of MRS (magnetic resonance spectroscopy) to assess the way in which skeletal muscle produces energy and lactic acid during exercise.
The results of this study were published in the European Journal of Clinical Investigation in January 2012, 42(2), 186-94
Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study.
Jones DE, Hollingsworth KG, Jakovljevic DG, Fattakhova G, Pairman J, Blamire AM, Trenell MI, Newton JL. Institute of Cellular Medicine Newcastle Magnetic Resonance Centre Institute for Ageing and Health The UK NIHR Biomedical Research Centre in Ageing and Age Related Diseases Newcastle Centre for Brain Ageing and Vitality, Newcastle University, Newcastle, UK.
BACKGROUND Chronic fatigue syndrome (CFS) patients frequently describe difficulties with repeat exercise. Here, we explore muscle bioenergetic function in response to three bouts of exercise.
METHODS A total of 18 CFS (CDC 1994) patients and 12 sedentary controls underwent assessment of maximal voluntary contraction (MVC), repeat exercise with magnetic resonance spectroscopy and cardio-respiratory fitness test to determine anaerobic threshold.
RESULTS Chronic fatigue syndrome patients undertaking MVC fell into two distinct groups: 8 (45%) showed normal PCr depletion in response to exercise at 35% of MVC (PCr depletion >33%; lower 95% CI for controls); 10 CFS patients had low PCr depletion (generating abnormally low MVC values). The CFS whole group exhibited significantly reduced anaerobic threshold, heart rate, VO(2), VO(2) peak and peak work compared to controls. Resting muscle pH was similar in controls and both CFS patient groups. However, the CFS group achieving normal PCr depletion values showed increased intramuscular acidosis compared to controls after similar work after each of the three exercise periods with no apparent reduction in acidosis with repeat exercise of the type reported in normal subjects. This CFS group also exhibited significant prolongation (almost 4-fold) of the time taken for pH to recover to baseline.
CONCLUSION When exercising to comparable levels to normal controls, CFS patients exhibit profound abnormality in bioenergetic function and response to it. Although exercise intervention is the logical treatment for patients showing acidosis, any trial must exclude subjects who do not initiate exercise as they will not benefit. This potentially explains previous mixed results in CFS exercise trials.
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 ever transpires that a retrovital infection is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available on the MEA website: www.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 involving people with severe ME, carried out by Professor Derek Pheby and Dr Lisa Saffron, 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.
Professor Pheby gave a presentation to the last meeting of the APPG on ME on the subject of severe ME – see parliamentary report in this summary.
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, can be found in the open access scientific journal, BMC Medical Genomics: www.meassociation.org.uk/?p=642
RRF funding = approximately £38,000.
RRF: ME Biobank, Disease Register/Patient Database and Post-mortem tissue bank CS updated trustees on both of these research initiatives.
Biobank: A group of three charities – AfME, MEA and MERUK – along with a very generous private donor raised approx £160,000 in funding in order to set up the first ME Biobank for research into this illness. Work commenced in August 2011 and funding covered the first phase of the project, which ended in November 2012.
This is a great achievement and once the facility has a collection of stored blood samples these will be made available to researchers who want to look at causation, sub-grouping and treatment.
As a result of continuing discussion between the four current funders since it was agreed that around £160,000 of new funding would be made available for phase 2 of this work. This has enabled the ME Biobank to continue with existing work and to also expand the number of blood samples being collected and stored. It also covers first year funding for the Disease Register.
Funding and contractual arrangements have now been agreed. This will enable phase/year two of the Biobank to proceed and the Patient Database will be set up at the New University of Buckingham.
CS reported on two very productive ME Biobank meetings that were held held on Tuesday 23 April 23.
First was a regular steering group meeting. This meeting concentrated on future plans and funding possibilities for the biobank when phase two finishes in March 2014.
Second was a workshop meeting to discuss the protocols and procedures that will need to be agreed for researchers who wish to make use of Biobank samples. There were presentations from a number of doctors who are involved in various aspects of Biobank work. As a result we are now in the process of starting to draft these protocols.
The ME Biobank now has a new website. This is work in progress and as soon as it is fully operational we will post a link on the MEA website.
RRF Funding: approximately £40,000 in both 2012 and 2013 (includes Biobank and Disease Register)
Post-mortem tissue bank The results from four post-mortems carried out in the UK have been presented and discussed at an international research conference in Australia. More information, including a paper can be found in a post-mortem and tissue bank update on the MEA website.
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. Abstract: 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
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 from volunteers outside our current clinical network at present.
However, we are intending to shortly set up a database – the Disease Register – of contact details of people who would be willing to donate blood samples when this can be arranged
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.
A comprehensive update on the Biobank and Post-Mortem Tissue Bank, including a link to the statement of intent, can be found in the news section (September 2012 archive) of the MEA website: www.meassociation.org.uk/?p=12558
RRF: RESEARCH PROPOSALS
The MEA is currently in a position to fund new research in addition to current commitments and the funding that has been set aside to 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.
Trustees discussed four new outline proposals for research funding that have been submitted to the RRF – one of which is for a clinical trial involving a drug intervention.
RRF: New collaborative (Glasgow and Brussels) research proposal involving exercise-induced fatigue and post-exertional malaise
At the April 2012 Board meeting trustees discussed a peer review report on a funding application for a biomedical research study that aims to increase our understanding of the pathological and physiological mechanisms that cause exercise induced fatigue and post-exertional malaise in ME/CFS. Following some changes to the application, as a result of the peer review process, trustees agreed to fund the study, which will be carried in two European centres.
The study should help to demonstrate whether there are any pathophysiological abnormalities present, which may even be treatable, in people who meet the Fukuda research definition for CFS and the Canadian definition for ME/CFS (definitions or links to these definitions can be found in the MEA purple booklet). The study will also include a group of people with multiple sclerosis who experience significant fatigue (to see if there are any similarities) and a group of healthy controls with sedentary lifestyles.
This research commenced in January 2013.
RR Funding: £32,000
Sleep studies Trustees discussed three preliminary research proposals relating to sleep disturbance in ME/CFS at their December meeting. One of the proposals, a feasibility study relating to the development of a sleep management programme for people with ME/CFS, was then sent for peer review.
Following further discussion between Board meetings it was agreed to fund the feasibility study, which will be looking at different types of sleep disturbance in ME/CFS and possible approaches to management. Sleep abnormalities (and specific types of sleep disturbance) will be thoroughly assessed in 40 patients. A tailored sleep management programme will then be devised based on this information and delivered in collaboration with each patient.
The study will be carried out by Professor Jason Ellis and colleagues at the Northumbria Centre for Sleep Research, University of Northumbria. Those involved have close links with Professor Julia Newton’s research group in Newcastle – from where patients will be recruited – and Professor Newton will be involved in the individual management programmes. The study will start in June 2013.
Dr Zoe Gotts, a member of the research team, gave a presentation on sleep disturbance in ME/CFs to the UK Research Collaborative meeting on Monday 22nd April.
RRF Funding: approximately £15,000
Ramsay Research Fund Grant Application Form A new electronic application form is now available.
Abstracts from two of the most recent MEO research papers to be published can be found here:
Conclusions from latter paper covering functional status: 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.
Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research
A further MRC highlight notice aimed at encouraging research applications, particularly involving neuropathology, has been made. More details can be found in the August 2012 issue of ME Essential magazine.
Background information on MRC funded research:
In December 2011, the MRC announced details of five awards they are making in relation to the £1.5 million of ring fenced funding for biomedical research that was secured as a result of the work carried out by the MRC Expert Group on ME/CFS research.
Details of the five awards can be found HERE.
The MRC have now updated the main MRC page on CFS/ME (www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm) to include greater detail of the projects funded under the ‘Understanding the Mechanisms of CFS/ME’ call (specifically the lay and technical summaries), along with Panel Membership details and the guidance documents that were produced for reviewers and Panel Members.
The link to the project summaries document can be found under the section ‘MRC-funded research projects’. This information is also on the MEA website in the April news archive.
The study involving mitochondrial dysfunction is being co-funded by the MRC and the MEA Ramsay Research Fund.
Recommendations for research priorities that were agreed by the Prioritisation Group can be found here:
Minutes to the priority group meeting can be found here: www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174
UK ME/CFS Research Collaborative
CS, NR and NS reported on the launch of the UK ME/CFS Research Collaborative
After six months of preparation the first ME/CFS Research Collaborative was launched at a meeting at the Wellcome Collection in London on Monday 22 April.
Over 100 researchers accepted the invite to attend – along with members of the All Party Parliamentary Group on ME/CFS, charity representatives and pharmaceutical company representation.
Among the invited guests adding support was the Duke of Kent – Patron of the ME Association.
The meeting was opened by Annette Brooke MP, Chair of the APPG on ME, who was followed by a number of speakers giving short presentations. Among topics covered was the work of the ME/CFS research funding charities (a joint presentation given by Sue Waddle from MERUK) and the work of government bodies – Medical Research Council and National Institute for Health Research – that fund research and research infrastructure.
A prolonged lunch break gave everyone a chance to look at poster presentations and visit stands organised by the charities.
In the afternoon there were a presentations covering a wide range of research topics including muscle abnormalities, immune system dysfunction, inflammation and cytokines, and sleep disturbance.
Roundup of various items relating to the launch of the UK ME/CFS Research Collaborative at the Wellcome Collection in London on Monday 22 April 2013
Statement from the ME Association: www.meassociation.org.uk/?p=15236
Press coverage in The Times – mostly about muscle abnormalities: www.meassociation.org.uk/?p=15215
Press coverage in the New Scientist:
There’s no place to hide for the elusive agent causing chronic fatigue syndrome. The world’s largest effort to unmask the cause of the disease was launched this week in the UK. The CFS/ME Research Collaborative will follow several lines of enquiry, including individual differences in cell metabolism.
Coverage in the BMJ: www.meassociation.org.uk/?p=15244
Parliamentary Early Day Motion tabled by Annette Brooke MP, Chairman of the All Party Parliamentary Group on ME: www.meassociation.org.uk/?p=15244
Newcastle University links: www.meassociation.org.uk/?p=15220
Duke of Kent attends the launch: www.meassociation.org.uk/?p=15184
Discussion on MEA Facebook: www.facebook.com/pages/ME-Association/171411469583186
The MEA is member of the steering group that has helped to set up the collaborative and prepare the launch meeting.
CS is collaborating on a new research study that also involves researchers in Norway.
DATE OF NEXT BOARD MEETING and AGM
Next Board meeting provisionally fixed for Monday and Tuesday, 15th and July 16th 2013 in Dorking
AGM will take place on Tuesday 26 November in Buckingham
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser | 7 May 2013