MAY BE REPOSTED
This is a summary of key points to emerge from two routine meetings of The ME Association (MEA) Board of Trustees. The meetings took place in Buckingham on Monday 3rd and Tuesday 4th December 2012.
The Annual General Meeting of the MEA and results of the trustee elections was held on Tuesday afternoon.
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 background information, and/or an MEA website link, relating to the issue being discussed.
Ewan Dale (ED) – Honorary Treasurer
Rick Osman (RO)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Helen Darling – Administrative Assistant
Maya Thomas (MT) – Fundraising Assistant (Monday afternoon)
David Allen (DA) – Associate trustee
Nicki Strong (NS) – Associate trustee
Martine Ainsworth-Wells (MAW) – Associate trustee
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 October 2012.
Annual returns for both companies (MEA and ME and You – our trading company) have been filed with Companies House. Annual accounts for both companies have been sent to Companies House.
Trustees concluded the arrangements for winding up ‘ME and You’ Ltd – the separate company that currently deals with MEA merchandise and literature sales. This trading activity will now come under the MEA and all payments for literature and merchandise should now be made to The MEA. A resolution to allow ME and You to cease trading, and become a dormant company on December 31st 2012, was unanimously agreed.
Despite considerable on-going difficulties faced by charities in the current economic climate, it is very encouraging to note that our general income from all sources has continued to remain ahead of expenditure for the first ten months of 2012.
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.
Trustees reviewed on-going changes to banking arrangements that are aimed at maximising the interest received on deposit accounts.
The MEA received a very generous donation at the start of the year from one of our members, who wishes to remain anonymous. This covers the entire administrative cost of running the ME Connect telephone and email information and support service during 2012.
PREMISES and STAFF
Helen Darling, our new part-time administrative assistant. started work in October and has settled in well.
Trustees held a brief meeting on Tuesday morning with Vicky Smith, who is now looking after our management accounts following the retirement of Peter Crisp.
Trustees discussed staff training and agreed some minor adjustments to working hours and staff salaries for 2013.
Trustees said a warm ‘goodbye’ to Ba Stafford. Ba is standing down as a trustee but will continue to work with the MEA on specific projects – in particular the conversion of data from CBT, GET and pacing survey into a report that will be submitted to the NICE guideline review next year – as well as being able to spend more time with her family, her garden and just enjoying life!
Trustees unanimously agreed to appoint Nicki Strong and Martine Ainsworth Wells, who are currently associate trustees, to become full co-opted trustees.
FIVE YEAR PLAN
BS led a wide ranging discussion on how the MEA should continue to develop its campaigning, information providing and research strategy over the next five years. It was decided to hold a separate meeting in early 2013 to take this forward.
The Office will be closed from noon on Monday December 24th through till 9am on Tuesday January 2nd. ME Connect will remain open throughout the Christmas period – as will MEA Facebook at www.facebook.com/pages/ME-Association/171411469583186
Following the death of two of our well=known Patrons in 2011 – Louie Ramsay, daughter of Dr Melvin Ramsay, and her partner the actor George Baker – we have appointed consultant neurologist Professor Peter Behan to the role of Patron. Trustees continue to discuss other possible candidates for this role and would welcome feedback 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. This includes all of the administration costs of the MEA Ramsay Research Fund.
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.
Trustees reviewed the regular report from fundraising assistant Maya Thomas that covers current and future fundraising initiatives.
The 2011 Big Give ‘Christmas Challenge’
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. This money is being used to fund the 2012 training programme for our ME Connect volunteers.
Following the success of this event in 2011, Tony Britton submitted an application to do so again in 2012 and this was successful. This time we will be using the money 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 400 surgeries/GPs on our list! CS will be preparing this new booklet, with a revised format, at the start of 2013.
Information on how to pledge donations appears in the November issue of ME Essential. There will also be regular updates on The MEA website, MEA Facebook, MEA email feed (on Nov 29th, December 5th and 8th) and our Twitter feed during December.
So far, we have over raised over £2,100 in confirmed pledges – which is not far short of our target.
Cycling, running, swimming and walking events and the 2012 BUPA London 10k race
We have a steadily 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 Forest half marathon, London to Paris cycle ride, Reading half marathon, Robin Hood half marathon, Roseland August Trail, Sheffield half marathon, Stafford half marathon, Swindon 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 5 expressions of interest) for the BUPA 2013 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 state 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 being advertised in the magazine and on the website and can 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 at www.easyfundraising.org.uk/causes/mea/?u=6XOGCS. Make a reminder note on or near your computer and spread the word to friends.
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 and envelopes for the return of ink cartridges and mobile phones can be ordered using the pdf ORDER FORM on the MEA website or the literature order form insert in ME Essential magazine, or by phoning MEA Head Office on 01280 818968 or 818964.
2012 Christmas Cards
These are still available from The MEA. Designs can be viewed in the November issue of ME Essential magazine or on our website Order Form.
The MEA discontinued selling blue ribbons when current stocks ended. We are now considering the production of a high quality blue ribbon lapel badge.
We are continuing to build up an email database of people who would like to receive email alerts from the MEA. We have over 1600 people on the list so far.
As ever, our deep gratitude to all those who undertake fundraising events on our behalf and who donate to The MEA occasionally or regularly through standing orders.
PARLIAMENTARY MATTERS: APPG on ME
The first meeting this year took place on January 24th. As reported previously, the speaker was Sir John Savill, Chief Executive of the Medical Research Council (MRC). Sir John gave a presentation on the MRC funding announcement and then answered questions. Minutes for this meeting can be found in the news archive on the MEA website.
The main part of the meeting planned for Wednesday July 4th – which was due to discuss severe ME/CFS and hear presentations from Professor Derek Pheby and Dr Claire McDermott – had to be postponed because very few MPs would be able to attend due to other important business taking place in the House that day. The meeting was therefore restricted to a short AGM at which Annette Brooke was re-elected as Chair; Ian Swales and the Countess of Mar as Vice Chairs; Russell Brown as Secretary. Martin Vickers stood down as Treasurer due to pressure of other parliamentary work. Minutes of the AGM can be found in the news section archive on the MEA website.
CS reported on a business meeting involving parliamentary officials and the Secretariat that took place on Thursday October 18th. Plans for APPG meetings during the coming parliamentary year were discussed. These will include the postponed meeting on severe ME; a meeting on benefits; and the launch of the UK ME/CFS Research Collaborative (see MRC item in research section). As soon as dates for these meetings are fixed they will appear on the MEA website.
Representatives from the following charities are invited to attend APPG meetings: Action for ME, BRAME, Invest in ME, ME Research UK, MEA, The Young ME Sufferers Trust, 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 and Tristana Rodriguez 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.
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
Two meetings took place during March at the House of Lords.
The first invited speaker, on Tuesday 6th March, was Dr Derek Enlander from New York. Dr Enlander gave a presentation on the current situation regarding research and management of ME/CFS in America. Minutes of this meeting, along with Dr Enlander’s slides, are on the Forward ME Group website at www.forward-me.org.uk/6th%20March%202012.htm
The second speaker, on Tuesday 13th March, was Professor Malcolm Harrington, who updated the group on his review of the Working Capability Assessment component of ESA and the report that was prepared by the Fluctuating Conditions Group – where Dr Charles Shepherd represents the ME/CFS charities. www.forward-me.org.uk/13th%20March%202012.htm
A previous meeting of the Forward ME Group of charities was held on Wednesday 26th October 2011. The first part of the meeting was taken up with a presentation by Lord David Freud on Welfare Reform. Each charity representative was then given the opportunity to question Lord Freud. Dr James Bolton (DWP medical adviser) also attended this meeting. Minutes for this meeting, including the question and answer session with Lord Freud, can also be found at www.forward-me.org.uk/26th%20October%202011.htm
CS reported on a meeting that took place on Tuesday 9th October when two representatives from Atos gave a presentation and answered questions. A detailed summary of the Q and A session with Atos can be found here: www.forward-me.org.uk/9th%20October%202012.htm
CS also reported on the last meeting of the group, which took place on 13th November. There was no speaker at this meeting and group discussed a range of topical issues: benefits, research, services etc. Minutes for this meeting are being prepared.
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 took part in the House of Lords debate on neurological services – a transcript can be found in the November news archive on the MEA website.
The Forward ME Group website has information about the group and archives of minutes from past meetings.
PARLIAMENTARY: Westminster Health Forum (WHF)
CS now attends meetings organised by the WHF – an organization 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, and representatives of the organisations they work in; businesses in the healthcare and pharmaceutical sectors and their advisors; patients’ and other interest groups, and the voluntary sector; academics and commentators, along with members of the reporting press. Westminster Health Forum website: www.westminsterforumprojects.co.uk/forums/index.php?fid=westminster_health_forum
DWP BENEFITS AND WELFARE REFORM:
ESA, WCA, DLA changeover to PIP and Incapacity Benefit/ICB changeover to ESA
Trustees reviewed the current MEA strategy regarding various benefit reforms that are taking place, or are due to take place.
The changeover from ICB to ESA. This is continuing to cause great difficulty for many people with ME/CFS who are currently claiming ICB when they are re-assessed for ESA.
The government consultation regarding changes to DLA and replacement with a Personal Independence Payment (PIP) in 2013
ED prepared the MEA response to the government consultation on DLA, see www.meassociation.org.uk/?p=4612.
In 2011, the Forward ME Group of Charities was 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 – this was referred to during the meeting with Lord Freud. The MEA agreed to be involved in this procedure – see www.meassociation.org.uk/?p=6632
CS reported to the Board on a previous occasion on a meeting in March that he had attended at DWP headquarters with Dr James Bolton, Deputy Chief Medical Adviser, to discuss the proposals for assessing PIP claims as they currently stand, and the likely timetable for implementing this changeover in 2013. Updated information on the DLA changeover to PIP can be found in the news archives on the MEA website.
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 a 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 here: 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 – are working with Professor Michael 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 working 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, we were 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 in order reach agreement with the DWP on how our proposals should be objectively tested against the current descriptors.
This work is now complete and the testing phase is planned to commence shortly. Analysis and reporting of the results will take place during early 2013. An independent scrutiny group, chaired by Professor Harrington, will oversee this work.
Benefit review seminar
CS attended a meeting in September at the TUC where where Professor Harrington provided feedback to the charities on work related to his on-going review of the WCA – in particular the implementation by the DWP of his recommendations so far and what work is required to be carried out in future reviews.
Key points to emerge from the charity representatives during the course of previous joint discussions include:
• Overall, there is 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
All the indications are that people are still 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 guidance leaflet on how to fill in the complex paperwork and the 10 ‘top tips’ on ESA that were in the June 2011 issue of the magazine. 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: www.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. As noted in the parliamentary report, representatives from Atos attended the Forward ME Group meeting in October.
Professor Harrington’s review of WCA: Year 3 report
CS attended a meeting at DWP Headquarters on November 20th 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. At this point we do not know who will be replacing him.
ED reported on a recent GP awareness event in Dumfries he attended, that was organised by Dumfries & Galloway ME Network and involved a showing of Voices from the Shadows followed by a Q&A with Drs Nigel Speight & Gregor Purdie. He also reported on planned events and meetings he is due to attend, to plan potential future ME campaigning and to represent the MEA in the Neurological Alliance of Scotland. Wider consideration of developing ME awareness and service provision in Scotland were discussed by the board.
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 talking 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.
MEA ANNUAL MEDICAL MEETING
ED, CS, BS and TB reported on this year’s very successful ME Question Time meeting that was held in Shrewsbury on Saturday 6th October and hosted by the Shropshire ME Group. Reports can be found in the November issue of ME Essential magazine and at www.meassociation.org.uk/?p=13541
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.
We want to hold the 2013 meeting somewhere in the South of England and one very promising offer was discussed.
REPORTS ON OTHER MEETINGS
Invest in ME conference CS and NS attended this meeting on 1st June – a report from CS appears in the August 2012 ME Essential magazine.
Open Medicine Institute meeting on ME/CFS in New York CS attended this meeting of clinicians and researchers that took place in June.
The meeting was organised 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.
As this was a closed meeting covered by a strict confidentiality agreement (as unpublished data was being discussed), CS is not able to report on the content of these discussions. A group statement that summarises the recommendations and actions is being prepared. This will appear in the news section on the MEA website as soon as it becomes available.
Pain conference in Edinburgh CS attended and spoke at the North British Pain Association conference for health professionals in Edinburgh on Friday 18 May. The title of his talk was ‘ME/CFS – Fact, Fiction, Controversy and Uncertainty’.
Dorset ME Group Annual Lecture CS delivered the annual medical lecture on Saturday 5th May at Wimborne. Tribute was paid to Dr William Tudor Thomas, who died unexpectedly at the beginning of August. Dr Tudor Thomas played a major role in developing services for people with ME/CFS in Dorset.
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 meeting Dr Derek Enlander invited CS to take part in a medical conference in Newry, Northern Ireland, on November 11th. Other speakers included Dr Judy Mikovits and Dr William Weir. CS powerpoint slides for this meeting can be found at www.meassociation.org.uk/?p=13686
North East Research Meeting CS attended a research meeting in Middlesborough on Wednesday 17th October that was organized by ME North East. Among the speakers awere 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, BS has co-ordinated the preparation a very comprehensive website questionnaire that will provide much needed patient evidence on all aspects of these treatments.
The website questionnaire closed on September 1st with over 1400 people taking part – although some questionnaires that were not fully completed. The results are now being analysed. BS reported that a summary of basic data is being prepared – from which a comprehensive report will emerge – and outlined some of the key preliminary findings relating to CBT, GET and Pacing programmes.
A sub-group of trustees have agreed to meet with NR at his home in Dorking to further discuss the analysis of the preliminary results in January.
The November ME Essential contains a new ‘To Whom It May Concern’ letter that sets out the evidence for disability and prognosis in ME/CFS in relation to requests for disability aids, wheelchairs, home adaptions etc.
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 at 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 a fully=updated sixth edition.
MEA literature can be obtained using the our 8-page ORDER FORM, which can be downloaded at
www.meassociation.org.uk/wp-content/uploads/2012/11/MEA-Order-Form.-19-Nov-2012.pdf or by phoning Head Office on 01280 818064/818968.
ME Awareness leaflet We have a new MEA leaflet prepared by BS and NS. The content concentrates on putting across to the general public what ME is and the devastating consequences it can have on an individual – illustrated by the case of Nicki’s son Jamie. To pilot its effect, BS and NS have distributed a copy to every house in the village near Buckingham where the MEA is based.
ME Alert Card Trustees agreed 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.
Kay Gilderdale book Copies are available on our literature order form. A review of the book appears in the June 2011 issue of ME Essential.
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; 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 February question asked about volunteering to take part in a UK clinical trial of rituximab. The March question asked about where people fit onto our disability rating scale. The April question asked people to rate their experiences at NHS hospital-based referral clinics/centres. The current (December) question is collecting information on who uses the MEA website.
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.
Regular ME Connect training sessions are taking place this year – funding coming from the 2011 Christmas Challenge event. The first session was on medical queries. The second, carried out by an employment lawyer, covered 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 2011: 3106 (2932 in 2010).
Email total 1666 (1926 in 2010).
The overall total for ME Connect in 2011 is: 4772 (4858 in 2010).
The drop in emails, and consequently the overall total, is mainly due to website changes that were introduced during 2011. 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, please contact us via firstname.lastname@example.org
ME ESSENTIAL MAGAZINE
TB reported on plans for the February 2013 issue. The aim is to publish this on February 1st, which means that all copy for this issue must be with Tony Britton by January 15th.
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine as well as contributions
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. A link to the on-line version can be found at www.meassociation.org.uk/?p=13809
Trustees also held a prolonged discussion on recent media coverage, including the items in The Independent on Sunday and the two items about ME/CFS in the 2011 report from the Science Media Centre. All of these items can be found in the November and December news archives on the MEA website.
Our complaint to the Press Complaints Council relating to an item that was published earlier in the year in the Daily Telegraph was rejected. More information: www.meassociation.org.uk/?p=9393
The MEA also sent in a formal complaint to the Press Complaints Commission regarding the inflammatory item by Rod Liddle about benefit reform and the illness ME in his weekly column for The Sun. The paper published the letter from The MEA on Wednesday 1 February. A copy of this, plus two other letters, can be found in the November 2012 archives at thr MEA website.
As a result of our formal complaint to the PCC, The Sun produced a sympathetic and informative feature on ME/CFS which included several true life stories. One of those involved was the son of associate trustee, Nicki Strong, who personally went up to London to visit the paper and deliver a copy of the film Voices from the Shadows. This feature from the Sun can be found in the March news archive on the MEA website.
Radio programmes: CS has been interviewed on various radio programmes over the past few months – including Radio Marlow and Radio Europe.
Social Media Trustees held a further brief discussion on the way in which we currently make use of social media – MEA website, MEA Facebook, twitter – and the way in which this needs to expand to reach people who now obtain much or all of their information through social media. Suggestions on how we could improve our use of social media are always welcome.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
CS updated trustees on MEA initiatives that have been taking place since publication of results from the clinical trial that took place in Norway. We understand that an announcement relating to further possible funding from the Norwegian government is due to be made shortly.
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.
BBC coverage: www.bbc.co.uk/news/health-15401746
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 earlier in the year.
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 – 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 from a group of research funding ME/CFS charities. At this meeting we also discussed the possibility of funding an overseas group have indicated interest in carrying out a clinical trial.
A note of caution:
This is 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.
A revised version of a Question and Answer item on the rituximab trial can be found on the MEA website: www.meassociation.org.uk/?p=8459
This information will be updated as further developments occur.
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 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 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 about the possibility of carrying out a replication study here in the UK.
Summary of research that has recently been funded, or is being funded, by the 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
Contractual arrangements involving the MRC and MEA have been agreed and CS updated trustees on recent correspondence with Professor McArdle. CS will be visiting the research centre to see work in progress in 2013. We have asked the research group to prepare a short summary for ME Essential.
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 at 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 at: 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 at: 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 will be giving a presentation to the APPG on ME on the subject of severe ME.
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, Patient Database and Post-mortem tissue bank
CS updated trustees on both of these research initiatives.
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. More information on the ME Biobank, including a question and answer item, appears in the November 2011 ME Essential.
A Steering Group meeting took place on 31 July. Key points to emerge from this meeting included:
• All targets are being met – the only exception being a minor weakness in the rate of recruiting participants and healthy controls
• Interest in the ME Biobank and co-operation with other research organisations is occurring
• Professor Derek Pheby reported on progress in setting up the Patient Database at the New University of Buckingham – where it is planned to set up a database of people with ME/CFS who want to donate blood samples
• A discussion took place on procedures for providing samples to research projects – it was agreed to continue this with a half day meeting
• Plans, options and funding for the continuation of the Biobank once the current funding concludes in November were discussed. MEA trustees agreed to guarantee at least £40,000 in funding to continue this work for a further year.
As a result of continuing discussion between the four current funders since July it has been agreed that around £160,000 of new funding will be made available in November. This will enable 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.
CS reported that two Biobank teleconferences had taken place in November. As a result, 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.
- 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 the conference presentation abstract, is at:
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: 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 until the ME Biobank facility is fully established.
However, we are intending to set up a database 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, our November 2010 ME Essential 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 at: 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.
RRF: New collaborative (Glasgow and Brussels) research proposal involving exercise-induced fatigue and post-exertional malaise
At the April 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 induce fatigue and post-exertional malaise in ME/CFS. Following some changes to the application, as a result of the peer review process, trustees at theirt August meeting 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.
Trustees finalised the contractual and funding arrangements for this research – which is due to start in January 2013.
Sleep studies Trustees discussed three preliminary research proposals relating to sleep disturbance in ME/CFS and agreed to follow up one of them.
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
CS updated trustees on two further MRC initiatives relating to ME/CFS research.
Firstly, a new MRC highlight notice aimed at encouraging research applications, particularly involving neuropathology, has been made. More details can be found in the August ME Essential.
Secondly, a meeting took place at the Royal Society of Medicine on Thursday September 27th to take forward the idea of setting up an ME/CFS research collaborative that would bring together a wide range of people – including scientists, research funding charities, the pharmaceutical industry – who are interested in ME/CFS research.
CS reported that this initiative is moving forward with the full support from the APPG on ME.
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 at: www.meassociation.org.uk/?p=9760 and in the January 2012 ME Essential.
The MRC have now updated their 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
A meeting took place in April with researchers at York University with the aim of collaborating on a new research study that also involves researchers in Norway.
DATE OF NEXT BOARD MEETING
Provisionally fixed for Monday and Tuesday, 11th and 12th February 2013 in Dorking
MEA AGM and TRUSTEE ELECTIONS: Tuesday December 4th
The MEA AGM took place on Tuesday afternoon. A summary, along with the Chairman’s and Financial report will be placed on the MEA website and in the next ME Essential.
Appointments made for 2012 – 2013:
Chairman: Neil Riley
Vice Chairman: Rick Osman (following retirement of Ba Stafford)
Treasurer: Ewan Dale
Company Secretary: Gill Briody
Larking-Gowan re-appointed as Auditors
Results of trustee elections:
Total valid votes received: 369
Votes in favour: 347
Votes against: 11
Votes in favour: 363
Votes against: 2
Both trustees are therefore re-elected.
Summaries compiled by Dr Charles Shepherd, Trustee and Hon Medical Adviser
8th December 2012.