This is a summary of key points from a meeting of The ME Association (MEA) Board of Trustees. The meeting took place in Buckingham on Monday 16th September 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) – Co-opted Trustee
Tony Britton – Publicity Manager
Elaine Newman – Fundraising Assistant
David Allen (DA) – Associate trustee
Martine Ainsworth-Wells (MAW)
Gill Briody (GB) – Company Secretary
Rick Osman (RO)
FINANCES and ADMINISTRATION
ED updated trustees on the current financial position. This was followed by discussion on the monthly management accounts for the period up to the end of June 2013.
Despite considerable on-going difficulties faced by charities in the current economic climate it is encouraging to once again report that our general income from all sources has continued to remain slightly ahead of expenditure for the first six 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
Trustees agreed to fund an update of part of the Head Office computer system at the February meeting. DA reported that this work has now been completed.
MEA MAAA (Memorandum and Articles of Association)
Trustees have been discussing a number of changes that we propose to make to the charity’s MAAA. These are now finalised and will be put to members for approval at an EGM (Extraordinary General Meeting) on November 26. A more detailed announcement appears in the August issue of ME Essential magazine.
MEA ANNUAL GENERAL MEETING (AGM) and TRUSTEE ELECTIONS
This year’s AGM will take place on Tuesday 26 November in Buckingham, along with results of the vote on Trustee elections. Further details on the AGM and trustee elections (including a voting paper) can be found in the current edition of ME Essential.
The Duke of Kent attended the launch of the ME Research Collaborative in April. Following the death of two 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 increasing, especially in relation to benefit and employment information now that major changes to the welfare/benefit system are taking place.
So trustees and staff 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 discussed the latest fundraising report from Elaine Newman, Fundraising Assistant. Elaine is aiming to make fundraising for The MEA easy and enjoyable, and more effective by raising awareness. Friends and family often want to do something to help but don’t know how to go about it. This is where Elaine can help with fundraising items and ideas that could be used – you can contact her by email on firstname.lastname@example.org, or leave a message for her on one of the office numbers: 01280 818964 or 818968
The Big Give ‘Christmas Challenge’ and ME Awareness Week
The MEA took part in 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.
A further successful application was made in 2012. We have been using this money as part of our contribution to ME Awareness Week. The aim is to educate GPs on ME/CFS through distribution of the fully updated 2013 version of the MEA ‘purple booklet’ – ME/CFS/PVFS: An Exploration of the Key Clinical Issues – and we asked members and non-members to tell us which doctors’ surgeries they think would most benefit from receiving the booklet. We now have over 3000 surgeries/GPs on our list – an outstanding achievement!
Over £9000 was received in confirmed pledges – which paid for 5000 copies of the purple booklet.The distribution to GP surgeries and medical libraries is now well underway – over 3,000 copies have been sent out so far – and we are receiving some very positive feedback on the new edition. More information on the MEA website: www.meassociation.org.uk/?p=4038
TB reported that a further application for this year’s Big Give Christmas 2013 which will continue and expand this initiative has been submitted.
Cycling, running, swimming and walking events and the 2013 BUPA London 10k race
We have a growing number of supporters taking part in activity events around the UK.
Events that have taken place during May, June, July and August
London to Brighton bike ride; BUPA 10k – 10 ran this year and 13 further places have been carried forward for next year; Pyjama day for CFS/ME/FM; Sheffield half marathon; 5kx50; Edinburgh marathon; Penkridge fun run; Ben Nevis team climb (raised (£2203); Wallingford whole school walk (money not yet in); Aon Benfield’s 200 employee cycle from London to Paris; Manchester colour 5K run; walking length of Hadrian’s Wall; Mont Blanc attempt; Leicester to Cambridge cycle; Bungee jump; Braydeston 5K, Diamond Triathlon.
Current sponsored events:
Bishop’s Park (Fulham) 10K; Great North run; Middlesborough 10K; Hair-a-thon; giving up smoking; Sydney half marathon; Glasgow half marathon; Great West run; Beachy Head marathon; Great South run.
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:
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
Returns of ink jet cartridges continue to be a successful source of income – so please keep sending them in.
Unfortunately, we are no longer able to accept mobile phones due to a change in policy by Royal Mail regarding the sending of lithium batteries through the post.
Trolley coins can be ordered using the pdf ORDER FORM on the MEA website: www.meassociation.org.uk, or 8-page Order Forn in ME Essential, or by phoning our Office on 01280 818968 or 818964. Envelopes for the return of ink cartridges can be ordered using the Order Form or by contacting Head Office.
We have replaced our blue ribbons with a top quality blue ribbon pin badge. These dark blue badges are proving to be very popular. Further details on the MEA website and the current issue of ME Essential magazine.
We are continuing to build up an email database of people who would like to receive email alerts from the MEA. There are 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.
A considerable amount of time on Monday was spent on discussions regarding two papers covering various aspects of forward planning in relation to development of information provision, campaigning, and services currently being provided, or not being provided, by the charity.
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. Presentations from DWP Minister (Mark Hoban) and a representative from Atos did not take place – as both were unable to attend.
The second meeting took place on Wednesday 13 March where the subject for discussion was severe ME/CFS. There were presentations from Professor Derek Pheby (epidemiologist at the New University of Buckingham) and Dr Claire McDermott (University of Southampton).
The third meeting which took place on 12 June. This meeting included the AGM and election of officers (Annette Brooke was unanimously re-elected as Chairman) followed by a wide ranging discussion on benefits, research and services, along with drawing up a preliminary timetable for topics and presentations when parliament resumes after the summer break.
CS reported that we do not, at present, have a date for the first meeting of the new session. He will be attending a meeting of Officers of the group on October 23 to discuss the timetable for 2013-2014.
Minutes for APPG meetings, including summaries of the presentations, can be found on the MEA website.
Representatives from the following charities are invited to APPG meetings: AfME, AYME, BRAME, Invest in ME, MERUK, MEA, ReMEmber, Young ME Sufferers Trust and 25% Group.
The APPG parliamentarians have agreed that these meetings should remain closed – so attendance is restricted to MPs, members of the House of Lords, the APPG Secretariat (Charles Shepherd/MEA plus Sonya Chowdhury/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
The first meeting of 2013 took place on January 15 when Professor Malcolm Harrington gave a very helpful presentation and answered questions.
The second meeting of the group took place on May 14.
The third meeting took place on July 3. Professor Stephen Holgate, Chairman of the UK ME/CFS Research Collaborative, gave a very helpful and supportive presentation on the challenges facing ME/CFS research.
Forward ME Group Minutes: www.forward-me.org.uk
CS reported that we do not, at present, have a date or topic for the next meeting.
The Countess of Mar continues to ask regular parliamentary questions on all aspects of ME 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 2013 – a Hansard transcript and video of the debate can be found in the February news archive on the MEA website.
Westminster Health Forum (WHF): CS 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 with key stakeholders. www.westminsterforumprojects.co.uk/forums/index.php?fid=westminster_health_forum
Health Committee Inquiry into Management of Long Term Conditions
The 2500 word MEA submission to this parliamentary inquiry has now been placed on the MEA website >> www.meassociation.org.uk/?p=15731.
We have not yet had a response relating to our willingness to provide oral evidence as well.
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, and feedback indicates that there a significant proportion are not being accepted for ESA.
DLA and the replacement with a Personal Independence Payment (PIP):
The changeover from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) has now taken place for all new claimants. CS previously reported on a meeting held at the DWP 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 also prepared a new MEA information sheet on PIP. This is included in the Summer 2013 issue of ME Essential and is also available on the literature order form. Trustees previously agreed to prepare a guide to filling in the PIP application forms. TB reported that this work was nearing completion.
Updated information on the changeover, including the call for comment on the mobility question, is being provided on the MEA website and on MEA Facebook. CS reported that he has been invited by the DWP to a PIP stakeholders meeting in October.
Professor Malcolm Harrington’s Independent Reviews of the Work Capability Assessment.
A copy of the MEA submission to the first 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. The FCG report on fluctuating conditions and the WCA, which contains some very useful information in relation to ESA applications and appeals, can 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 – a multidimensional approach that is 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 and prepared two new descriptors covering fatigue and pain.
At the end of June 2012 the group was 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 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 testing is now taking 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 are being 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 be passed to an Expert Panel for their assessment of fitness for work and the DWP have recruited people to form 30 to 40 Expert Panels. Members of the Expert Panels 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 has been taking place during the late summer/autumn of 2013 in order to produce an interim report for discussion in mid August. An independent scrutiny group, chaired by Professor Harrington, is overseeing this work.
CS reported on a meeting held at the Work Foundation on August 21 at which Professor Harrington and members of the DWP team who are involved with the statistical analysis presented the preliminary findings. We were then given an opportunity to provide written input.
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 still finding it very difficult to obtain ESA. However, it appears that an increasing proportion are being placed in the ESA Support Group and a very 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.
Motions in the House of Lords to try to annul the Statutory Instrument that brought in the current 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.’
strong>Atos medical assessments:
As part of Professor Harrington’s on-going review of DWP benefits, CS visited an Atos assessment centre in London to see how the much criticised LiMA computerised medical assessment system works. A summary of his visit was sent to the DWP.
CS has been asked to comment on the Atos guidance for ME/CFS.
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:
A new MEA information sheet covering the Disabled Facilities Grant has been prepared and added to the MEA literature list.
Meeting with Mark Hoban MP, Minister of State at the DWP
CS attended a meeting with DWP Minister of State Mark Hoban MP at DWP HQ on April 30 to discuss a wide range of benefit issues and concerns.
Meeting with Dr James Bolton at DWP
CS previously reported on a very useful meeting with Dr James Bolton, Deputy Chief Medical Adviser at the DWP, on July 12. Various benefit matters were discussed including the ESA Amendment Regulations (and the continuing uncertainty as to the way in which people with physical conditions can also score in the mental health descriptors section), the ESA Evidence Based Review and the recent announcement regarding a pilot scheme to offer mandatory health advice to people in the ESA WRAG Group (where we have offered to take part in the consultation process for this pilot study).
Meeting with Dr Paul Litchfield at DWP
CS reported on a meeting with Dr Paul Litchfield on August 6. Dr Litchfield has been appointed by the DWP to produce the 4th and 5th annual reviews, following the retirement of Professor Harrington at the end of 2012. A summary of this meeting can be found at: www.meassociation.org.uk/2013/08/esa-work-capability-assessment-meetiing-with-dr-paul-litchfield-tuesday-august-6/
Draft Deregulation Bill
CS reported that he had been asked to provide a submission for a House of Commons committee on the Draft Deregulation Bill. This contains a proposal to remove the duty on the Senior President of Tribunals to produce an annual report on the standards of DWP decision making. We have made it clear that we are very opposed to this proposal. A copy of our 10 page submission will appear on the MEA website as soon as we are able to place this in the public domain.
ED reported on developments and meetings in Scotland, including preliminary information on an event that is being planned for the Scottish Parliament in May 2014.
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 talking to some medical schools about what (if anything) 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 at the April meeting. 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.
NS agreed to follow up a decision to send copies of the new MEA purple booklet to Clinical Deans at all UK Medical Schools. NS reported that she now had contact details for clinical leads in all but 2 UK medical schools. Two copies of the MEA purple booklet will now be sent to all UK medical schools, plus a covering letter, along with an offer to supply further copies.
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) and Dr Nigel Speight (Hon Paediatric Adviser, MEA).
The MEA pays for the full cost of the venue and any expenses incurred by panel members. All we normally ask from the local group is some practical help with publicity and local administration.
The 2013 meeting will take place in Liskeard in Cornwall on Saturday 28 September with all the above speakers confirmed. The meeting is being held in conjunction with local groups in Devon and Cornwall. Read about it at www.meassociation.org.uk/2013/05/make-a-note-of-it-now-our-annual-me-time-will-be-held-in-cornwall-on-september-28/
Following an approach from the local group in Oxford we have agreed to hold the 2014 MEA QT meeting in Oxford – date (probably October) and venue to be arranged.
OTHER MEETINGS: Previous, Current and Future
Invest in ME conference: CS and NS represented the MEA at this meeting on May 31. A four page report on the meeting appeared in ME Essential.
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 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.
Rural Medical Practitioners Association: CS gave a presentation on chronic fatigue, ME and CFS at their annual conference in Wales in September last year. 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, last November. 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.
2014 IACFS meeting: Trustees previously agreed that CS should attend the main international clinical and research meeting in 2014 being organised by the International Association for CFS/ME. This will be taking place in San Francisco in March. It was also agreed that we would apply to have a stand at the conference which would cover the work of the MEA and research studies currently being funded by the Ramsay Research Fund. IACFS website: www.iacfsme.org
Peterborough: CS will be speaking at meeting organised by Peterborough ME Support Group on Saturday 5 October.
MEA SURVEY ON CBT, GET and PACING
As part of MEA forward planning for our submission to the NICE guideline review, which was scheduled to take place in 2013, the MEA produced a very comprehensive website questionnaire that produced 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 have now been analysed and report covering all the key data is in the final stages of preparation. Trustees discussed the content of the current draft which will shortly be circulated for external appraisal.
NICE GUIDELINE REVIEW
At the April meeting CS updated trustees on the current situation regarding 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.
Following some information posted on the internet stating that the August review will now take place CS wrote to NICE for further clarification. We are still awaiting a reply.
Trustees discussed the latest paper on the PACE trial results, which covers what is termed recovery, at their meeting in April. 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 revised reply which was accepted for publication. This letter, along with a reply from the PACE trial organisers, can be found at:
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
Extra paper copies can be obtained from the MEA. This research was funded by the Ramsay Research Fund.
The 2013 edition of ME/CFS/PVFS: An Exploration of the Key Clinical Issues is now available. Discounts can be arranged for bulk orders. Please contact Gill Briody at the MEA office for details.
MEA literature can be obtained using our 8-page Order Form. This can be downloaded from
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.
ME Alert Card: Trustees previously 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: This is a reprint 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. 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 book shops.
The new MEA website was launched at the beginning of September and we would appreciate feedback from users on any aspect of content or layout.
A new on-line shopping and membership opening/renewal facility will include merchandise, literature, books and membership subscriptions. This is being gradually introduced and we would again appreciate feedback on how easy it is to use.
The monthly on-line website survey feature remains very popular. Previous polls have asked about reactions 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 May question asked whether ME/CFS charities should be joining the new UK Research Collaborative. The September question is asking about how many blood relatives also have ME/CFS.
Results from all 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 are again taking place this year. During 2012, training sessions covered common medical queries, employment and occupational health issues from a legal point of view, emotional support and managing ME/symptomatic relief.
Total telephone calls for 2012: 2842 (3106 in 2011).
Email total 1084 (1666 in 2011).
Overall total for ME Connect in 2012: 3926 (4772 in 2011).
The drop in emails during 2012, 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 you are interested, please see the announcement in the current issue of ME Essential magazine or contact us at email@example.com
ME ESSENTIAL MAGAZINE
TB reported on the current (August) 2013 issue. Copy for the November issue should be with TB by mid October at the very latest.
Trustees previously reviewed feedback on the content and layout of the magazine that has been received following the request in the February issue. Most people found the magazine ‘easy to read’ with the right balance of comment. However, trustees felt it was time to carefully ‘refresh’ the layout and some initial changes were therefore be made in the August issue. Please let us know what you think of them!
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 in the current issue include items on:
Disability Rating Scales
Supportive evidence from GPs for benefit claims
Driving a car if you have ME/CFS
Immune dysfunction – tests and treatments
More info on the current issue can be found at www.meassociation.org.uk/about-the-mea/me-essential/
NHS CHOICES ‘Online Clinic’”
Dr Charles Shepherd and Sue Luscombe (dietitian) took part in an NHS Choices ‘Online Clinic’ during August. CS reported that he answered over 200 questions and follow points on adult medical issues. Although the clinic is now closed, all the questions and answers will remain available to read on the website.
Series of short films:
CS reported that he spent a day with Dr Nigel Speight (MEA paediatric Adviser) recording a series of short film clips on all aspects of ME/CFS. The films are being professionally recorded and edited – thanks to financial support from the government in Holland. Once editing has been completed they will be freely available on the internet.
What about ME?:
CS continues to be involved with the production of this documentary programme and has recorded an extended interview. The production team are currently updating the material in relation to the Lipkin study, Rituximab and the UK ME Biobank.
Public Service magazine:
The review of ME/CFS that CS was asked to write for Public Service magazine has now been published. Find it at: www.meassociation.org.uk/?p=15646
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 26 November last year. A link to the online version can be found at: www.meassociation.org.uk/?p=13809#comment-2933
Other recent media coverage of ME/CFS, includes the feature article in The Sunday Times and a feature on Emily Collingridge in the Daily Telegraph: http://www.meassociation.org.uk/?p=15777
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 and Channel Islands radio.
Documentary on ME/CFS: What About ME?
CS has been asked to record a further interview for a documentary on ME/CFS that is being made here in the UK by an independent production company.
ME AWARENESS WEEK: 2012 and 2013
This ran from Sunday 12 May to Sunday 19 May. We supported:
* 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/)
* Publication and dissemination to GPs of the 2013 edition of the MEA purple booklet. Details here: www.meassociation.org.uk/2013/08/our-telling-gps-the-truth-about-me-campaign-pushed-all-the-right-buttons-20-august-2013/
ME Awareness week in 2014 will run from Sunday 11 May to Saturday 18 May.
MEA HEAD OFFICE LITERATURE ARCHIVE
Updating of the office archive and library is 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 will be posted on the MEA website and MEA Facebook.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
The July MEA statement on Rituximab includes details of our latest initiatives to try and help fund a UK clinical trial by committing the RRF to £50,000 of funding + a substantial donation from one of our members + donations from people who want to make a specific donation to this item of research. The full MEA statement can be found here:
Further clarification from MEA Facebook on the MEA position regarding Rituximab and the proposal to carry out a small clinical trial at University College London (UCL):
There is now approximately £60,000 of ring-fenced funding in the RRF to help fund a UK clinical trial. This could be used to help fund a trial at UCL provided the trial protocol is:
1 ethically approved by UCL
2 approved by the UCL Clinical Trials Unit (CTU)
3 passed by our own peer review procedures and then accepted by MEA trustees
There is still some confusing information in circulation surrounding this proposed trial and some people believe it is almost about to start. However, it should be noted that:
1 Prof Edwards is still looking at the feasibility of conducting a trial
2 If Professor Edwards believes a trial is workable and fundable (around £400,000 is a lot of money to raise) a protocol has to be prepared and agreed with the CTU at UCL
3 Professor Edwards and his team at UCL now have some funding from Invest in ME (£50K) for some preliminary work. This will help in developing a protocol and patient selection
4 A clinical trial cannot start until all (or nearly all) of the money has been raised
Other events and initiatives that have been taking place since publication of results from the clinical trial that took place in Norway include:
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. 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 the APPG.
CS has discussed the results, and a possible preliminary protocol for a UK clinical trial, with Professor Edwards – a leading expert 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.
A note of caution: The trial that may take place at UCL is likely to be small in numbers. The regulatory and licensing authorities here in the UK will need results from several more independent 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.
A Question and Answer item on the rituximab trial can be found on the MEA website: www.meassociation.org.uk/?p=8459
XMRV AND OTHER INFECTIONS
Results of the Lipkin XMRV 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 – 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.
Trustees also discussed preliminary results from Professor Lipkin’s current study on infections and immune system dysregulation that were released the previous week. More information at: www.meassociation.org.uk/2013/09/lipkin-finds-biomarkers-not-bug-phoenix-rising-website-12-september-2013/
AMERICAN RESEARCH ON EXERCISE CAPACITY
NS led a discussion at the December 2012 meeting on the American research into exercise tolerance. 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 is intending to arrange a visit to Liverpool 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: http://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: 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 gave a presentation to 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
A group of three charities – Action for ME, MEA and MERUK – along with a very generous private donor who is a member of The MEA 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.
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 in 2012 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.
CS reported at the last meeting on two very productive ME Biobank meetings that were held held on Tuesday 23 April 2013.
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 drafting these protocols.
The most recent steering group meeting took place at the Royal Free Hospital on Tuesday 18 June. This was followed by a guided tour of the ME Biobank facilities.
Trustees met with Dr Luis Nacul from the London School of Hygiene and Tropical Medicine – where the Biobank is administered – at their meeting in July. Dr Nacul gave a very helpful powerpoint presentation on current work and the future work that will be funded by the National Institutes of Health grant of over £1 million over the next three years. As the MEA has already pointed out in our website statement, this is a major vote of international confidence in the UK ME Biobank. The MEA website statement, along with other material, relating to the award of the NIH grant to the UK ME Biobank can be found here: www.meassociation.org.uk/?p=15822
CS reported that he will be attending a further meeting of the Steer