Summaries of our AGM, EGM and Board of Trustees meetings + Ramsay Research Fund update | November 2013

November 25, 2013


This is a summary of key points from two meetings of The ME Association (MEA) Board of Trustees.They took place in Buckingham on Monday 18th November and Tuesday 19th November 2013. This is a summary of the 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.

The Tuesday meeting was followed by an EGM and AGM – which included results of trustee elections. A summary of the EGM, AGM and trustee election results follows.


Martine Ainsworth-Wells (MAW)
Ewan Dale (ED) – Honorary Treasurer
Rick Osman (RO) – Tuesday only
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Nicki Strong (NS)

MEA Officials:
Gill Briody – Company Secretary
Helen Darling – Administrative assistant
Tony Britton – Publicity Manager
Elaine Newman – Fundraising Assistant

David Allen (DA) – Associate trustee


ED updated trustees on the current financial position. This was followed by a discussion on the monthly management accounts up to the end of September 2013.

Despite considerable on-going difficulties faced by charities in the current economic climate, it is encouraging to once again report that general income from all sources has continued to remain slightly ahead of expenditure for the first nine 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 and as a charity.


Christmas and New Year arrangements: The office in Buckingham will be closed from noon on Friday 20th December through to 9am on Thursday 2nd January 2014.

ME Connect information and support telephone service will be open every day over the holiday period.

Salary arrangements for staff and contractors in 2014 were discussed and agreed.


The Duke of Kent attended the launch of the ME Research Collaborative in April. Following the death of two of our 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.

Trustees discussed other possible candidates for this role and always welcome suggestions from MEA members on this subject.


The MEA receives no government funding. So we have to raise a substantial amount of funds on top of membership subscriptions – which currently only provide around half the general income that is required to cover basic running costs and Head Office administration.

We also face 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. 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.

Fundraising report

Trustees discussed the latest fundraising report from Elaine Newman, Fundraising Assistant. Elaine is making fundraising for The MEA easy, 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. Contact her by email:, or leave a telephone message at the office on: 01280 818964 or 818968.

Events since the last meeting include:

Glasgow Half Marathon; Sydney half marathon; Marlow half marathon; Two sisters ran the Great West Run; Great South Run; Bishops Park 10K; Beachy Head Marathon; a concert for RRF; jewellery selling; pumpkin carving; craft sales; several school projects/ college /sixth formers held events/talks to raise awareness and fundraise – one had ME awareness bands made up.

Wallingford School, Oxfordshire:

The whole school walk raised a grand total of £8,400. MAW will visit the school to present a certificate and collect a big cheque in the end of term assembly on 20th December.

Promoted events for 2014:

BUPA London 10k, 25th May 2014. We have 13 places and ask people to raise as much as possible.

Ben Nevis Walk (organised by Ptarmigan Events), 18th July 2014. This is an open event and individuals can enter directly and are invited to raise as much as possible. We are listed as one of seven charities on their site. Elaine will be taking part in this and getting a group together.

We are also listed with Action Challenge and have one entry so far in the London to Brighton cycle on 24-25th May.

The Big Give ‘Christmas Challenge':

The MEA took part in this event – which involves 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 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. We asked members and non members to tell us which doctors’ surgeries would most benefit from receiving the booklet. As a result we now have almost 4000 surgeries/GPs on our list – an outstanding achievement!

Over £9000 was donated, which is paying for around 4000 copies of the purple booklet. The distribution to GP surgeries and medical libraries is well underway and we are receiving some very positive feedback.

A further application for 2013, which will continue this initiative and expand it to include medical schools etc, has been accepted. More information on how to get involved in December can be found in the November issue of ME Essential and on the MEA website:

Christmas cards:

We have two new designs this year plus some older stock from last year. We have reduced the prices on the older stock. Cards can be viewed on the pdf order form found on the right of the item and in the November magazine.

Other fundraising events – ideas always welcome!

While runs, bike rides and other sporting events are very effective ways for carers, relatives and friends to raise money for The MEA, they are clearly not appropriate for people who are ill. So we continue to welcome the views of members on how people with ME/CFS could 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 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.

Collection boxes:

Flatpack collection boxes for loose change are available from Head Office. These are advertised in the magazine and on the website and are 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 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 (apart from Epsom) continue to be a successful source of income – please keep sending them in.

We are no longer able to accept mobile phones due to a change in policy by Royal Mail regarding sending of lithium batteries through the post.

Our Order Form:

Fundraising items can be ordered downloading the Order Form to the right of this item, using the Order Form in the middle in ME Essential, or by phoning our Head Office on 01280 818968 or 818964. Envelopes for the return of inkjet cartridges can be ordered using the Order Form form or by contacting Head Office.

Please note we are temporarily out of stock of trolley coins and will be obtaining a new supply shortly.

Blue Ribbon Badges:

We have replaced our blue ribbons with a top quality dark blue ribbon badge – which are proving to be very popular. Further details are on the Order Form.

Email database:

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 order.


Trustees continued discussion on 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.


The first APPG meeting of 2013 took place on Tuesday 15 January. This involved a wide-ranging discussion on benefits and welfare reform.

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 took place on 12 June. This 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.

CS reported on a meeting of Officers of the group on 23rd October to further discuss the timetable for 2013 – 2014. The APPG is intending to devote the next few meetings to issues relating to benefits and to children and adolescents.

Minutes for APPG meetings, including summaries of the presentations, can be found in the MEA website news archive.

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 their 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. 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 on the MEA Order Form (as a free item).

PARLIAMENTARY: Countess of Mar's Forward ME Group

Following meetings in January (with Professor Malcolm Harrington), May and July (with Profesor Stephen Holgate) a fourth meeting took place on Tuesday 15 October where the group discussed and prepared a joint charity response that opposes the proposal by NICE to place the ME/CFS guideline on the static list. The joint response can be read here:

There was also some brief discussion on a number of other topics of current interest/concern including the Lightning Process and implementation of Personal Independence Payments.

Forward ME Group Minutes:

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. She also took a very active part in the Welfare Reform Bill as it passed through the House of Lords. The Countess 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.

Health Committee Inquiry into Management of Long Term Conditions:

The 2500 word MEA submission to this parliamentary inquiry has been placed on the MEA website at


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. Our feedback indicates that 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.

We also have a new MEA information sheet on PIP. This was included in the Summer 2013 issue of ME Essential and is also available on the order form. Trustees previously agreed to prepare a guide to filling in the PIP application forms. TB reported that this work is progressing but not yet complete.

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.

Professor Harrington's Independent Reviews of the Work Capability Assessment:

CS is a member of the group appointed by Professor Harrington that reviewed the WCA descriptors that apply to people with fluctuating medical conditions. The group's report on fluctuating conditions and the WCA, which contains some very useful information in relation to ESA applications and appeals, can be downloaded HERE.

Fluctuating conditions report and ESA:

As noted above, representatives from five organisations – 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. 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. It 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 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 at the last meeting that testing has been 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 were asked if they would participate in an additional assessment on the same day as part of the EBR.
• Two healthcare professionals were involved in the initial (and current WCA) assessment. Following this a second assessment took place that involved asking additional questions and gathering additional information that is needed for the charities version of the assessment to be completed.
• The raw data was passed to an Expert Panel for their assessment of fitness for work and the DWP 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 are 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 previously reported on a meeting held at the Work Foundation on 21st August 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.

CS reported that the whole group are due to meet again in mid/late November to discuss the final results of the EBR and preparation of a report that will go to DWP ministers.

Benefit review seminar meetings and seminars:

Key points to emerge during the course of joint discussions on the way ESA claims are being handled include:

• 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 being rushed through Atos interviews without being listened to.
• Atos reports are 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

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 – which can be downloaded free from the MEA website.

DWP statistics on ESA outcomes:

The most recent statistics produced by the DWP on outcomes of ESA applications contain some interesting information on the way in which decisions have been steadily moving in favour of accepting more claims for ESA and placing more people in the Support Group:

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. A television recording, and Hansard transcript of the debate, can be found HERE. 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 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 MEA website news archive for January 2013.

The MEA information leaflet which explains how to fill in the complicated ESA paperwork has been 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 Order Form.

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 30th April 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 12th July. 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 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).

Meeting with Dr Paul Litchfield at DWP:

CS previously reported on a meeting with Dr Paul Litchfield on 6th August. 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 HERE.

Draft Deregulation Bill:

CS reported at the last meeting 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 standards of DWP decision-making. We have made it clear that the MEA is very opposed to this proposal. A copy of our 10 page submission will appear on the MEA website.


ED updated the board on developments and meetings in Scotland, including information on an ME Awareness Week event being planned for the Scottish Parliament at Holyrood in May 2014, and plans for holding other public events.

Progress with, and potential for development of strategies to develop medical training and service provision for ME were discussed, including responses to Scottish Government and other agency consultations. ED also attended a recent workshop held by Work4ME in Glasgow. Other items previously discussed on-line, were considered as required. The MEA continues to participate in the Neurological Alliance of Scotland, and promote the interests of ME sufferers in its initiatives.


At the December 2012 meeting, 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. Two copies of the MEA purple booklet have now been sent to all UK medical schools, plus a covering letter, along with an offer to supply further copies.


The MEA annual medical meeting is an open and free meeting in a ‘Question Time' format that we take around the country. Panel members normally include Jane Colby (Tymes Trust), Sue Luscombe (registered NHS dietician), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA).

The MEA pays 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 local administration.

The 2013 meeting took place in Liskeard, Cornwall on Saturday 28 September where there was an excellent attendance. The meeting was held in conjunction with local groups in Devon and Cornwall. A report appears in the November ME Essential.

Following an approach from the local group in Oxford we have agreed to hold the 2014 MEA QT meeting in Oxford – probably in late September. CS updated trustees on options for the venue – possibly an Oxford College with good disabled access and parking facilities.

OTHER MEETINGS: Previous, Current and Future

Invest in ME conference:

CS and NS represented the MEA at this meeting on 31st May. A four-page report on the meeting appeared in the Summer 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 in June 2012.

The meeting was organized by Dr Andreas Kogelnik from the Open Medicine Institute in California. Among well-known names attending from both the USA and Europe were Dr Lucinda Bateman, Dr Øysten 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.

2014 IACFS meeting:

Trustees previously agreed that CS should attend the main international clinical and research meeting in 2014 that is being organised by the International Association for CFS/ME. This will be taking place in San Francisco in March 2014.


CS spoke at meeting called by the Peterborough ME Support Group in Whittlesey on Saturday 5 October.

Social and care workers in Wales:

CS has been invited to give a training session to social workers, care workers and other health professionals at Bangor in North Wales in January 2014 – more information in the November ME Essential.

Burrswood Hospital:

CS has been invited to visit this (non-NHS) Christian hospital and place of healing in Kent that has in patient facilities for the assessment and management of ME/CFS.


As part of MEA forward planning for our submission to a NICE guideline review, which was scheduled for 2013, the MEA produced a comprehensive website questionnaire that produced much-needed patient evidence on all aspects of these approaches to management.

The website questionnaire closed in September 2012 with over 3000 people taking part and 1400 completed responses. The results have now been analysed and a 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.


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.

We were informed in September that NICE intends to place the ME/CFS guideline into a new static list – where no further revision will take place unless significant developments in the diagnosis or management of ME/CFS are reported in the medical literature. The MEA is strongly opposed to this proposal and we have sent in a detailed submission explaining our reasons why. Our submission can be found HERE:


Trustees previously discussed the latest paper on the PACE trial results, which covers what is termed recovery, at their meeting in April. The paper in Psychological Medicine, can be found HERE

The MEA response, along with a reply from the PACE trial organisers, can be found HERE.


The MEA now has almost 70 leaflets and booklets covering all aspects of research, diagnosis and management.

Our 2010 Illness Management Report contains the 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 HHERE. 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 MEA Head Office for details.

MEA literature can be obtained using the website Order Form on the right of this item or the 8 page order form in the current issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818064/818968.

ME Awareness leaflet:

Our new leaflet 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 Strong'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 in 1955. The book, which also covers many of the other famous outbreaks around the world, can be obtained using the MEA literature order form. It cannot be purchased in bookshops.


RO updated trustees on the new MEA website, including key visitor statistics, which was launched at the beginning of September. We would appreciate feedback from users on any aspect of content or layout.

A new on-line shopping and membership opening/renewal facility is being developed and will open for business shortly. This new website facility is being gradually introduced and, when it is launched, 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; Rituximab; vaccines as trigger factors and opinions on DWP medical assessments that are carried out by Atos. The October question is covering how parliamentary representatives deal with issues relating to 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 have again taking place this year and the service continues to deal with a large number of calls and emails.

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; 2-4pm and 7- 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 let us know by emailing


TB reported on the current (November) 2013 issue. Copy for the February 2014 issue should be with TB by mid January 2014 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 last two issues. 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 November issue, which has now been mailed out, include items on autism and ME, cognitive dysfunction, joint hypermobility, Rituximab, shingles vaccine, thyroid function tests and a new Management File covering Blood Tests.


NHS Choices ‘Online Clinic’:

Dr Charles Shepherd and Sue Luscombe (dietitian) took part in an NHS Choices ‘Online Clinic’ during August. CS answered over 200 questions and follow up points on adult medical issues. Although the clinic is now closed, questions and answers remain available.

Series of short films:

CS recently 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 professionally recorded and edited – with financial support from the government in Holland. Once editing is completed the films will be available at weekly intervals starting early in 2014.

What about ME?:

CS continues to be involved with the production of this documentary film 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 Europe magazine has now been published. The full article can be found HERE.

Daily Telegraph:

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. A link to the on-line version can be found HERE

Other recent media coverage of ME/CFS, includes the feature articles in Choice magazine , The Sunday Times and the Daily Telegraph (Emily Collingridge).

Radio programmes:

CS has been interviewed on various radio programmes – including Radio Marlow, Radio Europe, BBC Radio Coventry and Warwick and Channel Islands radio.


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 and a special a special Facebook page page.
• Publication and dissemination to GPs of the 2013 edition of the MEA purple booklet.

ME Awareness week in 2014 will run from Sunday 11 May to Saturday 18 May.


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.



MEA MAAA (Memorandum and Articles of Association)

Trustees had proposed changes to the charity’s Articles of Association. These were put to members for approval in a postal vote and for voting at an EGM (Extraordinary General Meeting) on Tuesday 19th November 2013. The members approved the changes by a clear majority:

Votes received: 304
Votes in favour of both changes: 271
Votes in favour of changes to clause 24 only: 12
Votes in favour of changes to clause 29 only: 4
Votes against making any changes: 1
Abstentions: 8
Spoilt papers: 2

The proposal to make both changes was therefore carried


Trustee Election Results:

Martine Ainsworth-Wells In favour 285 Against 5 (elected)
Neil Riley: In favour 294 Against 2 (re-elected)
Nicki Strong: In favour 285 Against 4 (elected)

Examining accountants: Larking-Gowan re-appointed

The Chairman’s annual report can will be published in the February ME Essential.

A summary of the financial report for year the year ending December 2012 can be found in the November ME Essential.

Members can request copies of either document from MEA head office.

Immediately after the AGM, the Board of Trustees confirmed the following appointments for the coming year:

Chairman: Neil Riley
Vice Chairman: Rick Osman
Honorary Treasurer: Ewan Dale
Company Secretary: Gill Briody



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 on the MEA position:

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 University College London (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 the clinical trial and some people believe it is almost about to start. However, it should be noted that:

1 Prof Edwards is looking at the feasibility of conducting a trial
2 If Professor Edwards believes a trial is workable and fundable (which would cost around £400,000) 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 worked with UK representatives of the Norwegian research group in order to obtain media publicity for the trial results. Examples include coverage via the BBC, New Scientist and Daily Mail.

CS has briefed the APPG on ME at Westminster and the Forward ME Group. 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 large 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 HERE.

XMRV and other infections

Results from the Lipkin XMRV study:

This is the US government funded study whereby blood samples from 150 people with ME/CFS and 150 controls were tested blind in three different laboratories. This study confirmed 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.

More information on the MEA website:


NS previously led a discussion 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.


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. A summary of this research was presented to the UK ME/CFS Research Collaborative meeting in 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 retroviral infection is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available HERE.

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.

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 HERE.

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

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, the ME Association and ME Research UK – 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. ork 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 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 previously reported 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 finalising the drafting of these protocols.

The steering group meeting that took place at the Royal Free Hospital on Tuesday 18 June 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.

CS reported on a meeting of the ME Biobank Steering Group that took place during the Board meeting on Monday November 18th:

• Collection of blood samples from a cohort of people with ME/CFS (Fukuda and/or Canadian criteria) and healthy controls is almost complete.
• The protocols for research groups applying for blood samples are almost complete.
• Recruitment of a cohort with severe ME/CFS for the NIH funded study is being organised in London.

The group are currently discussing ways of funding work in phase 3 – when blood samples will be made available to the researchers who wish to make use of them. The application for phase 3 funding is being sent for peer review.

ME Biobank:

RRF Funding: approximately £40,000 in both 2012 and 2013 (includes Biobank and Disease Register)

Post-mortem tissue bank:

Results from four post-mortems carried out in the UK have been presented and discussed at an international research conference in Australia. More information, including a paper, can be found in a post-mortem and tissue bank update on the MEA website.

A paper describing the way in which we are hoping to set up a tissue bank has been published in the Journal of Clinical Pathology.

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 provide some further funding to assist Dr Dominic O'Donovan (neuropathologist at Addenbrooke's Hospital, Cambridge) with the virological examination of existing post-mortem material.

RRF funding = £500

Donating blood and tissue samples to ME/CFS research:

We are aware that people with ME/CFS are very keen to donate blood samples for research studies, and in some cases tissue samples after death. Unfortunately, we cannot accept any blood samples from volunteers outside our current clinical network at present.

However, a database – the Disease Register – of contact details of people who would be willing to donate blood samples is now being set up at the New University of Buckingham. This project is being overseen by Professor Derek Pheby. CS reported that, along with the other funders, he will be visiting the Disease Register site on December 18th.

As far as tissue and post-mortem samples is concerned, the November 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.

More information on the Biobank and Post-Mortem Tissue Bank, including a link to the statement of intent (for people who want to donate tissue samples), can be found HERE.


The MEA is currently in a position to fund new research in addition to current commitments and funding that has been set aside for the 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: Dr Amolak Bansal et al, St Helier Hospital, Surrey:

This is a newly funded study that will have a degree of overlap with research we are already funding in Belgium and Glasgow. The research will aim to provide objective evidence of post-exertional malaise by looking at the effects of exercise on immune system function and cognitive function. The research protocol will also involve measurement of respiratory function during exercise – an aspect of research that the MEA is keen to pursue. CS reported that patients who meet Fukuda and Canadian criteria are now being recruited.

The research team consists of Dr Amolak Bansal (immunology), Dr Megan Arroll (cognitive function tests), Dr Dilip Shah (cardiology) and Mr Brian Ford (laboratory immunology) at St Helier Hospital in Surrey.

RRF Funding: £31,000

RRF: Collaborative (Glasgow and Brussels) research proposal involving exercise-induced fatigue and post-exertional malaise:

At the April 2012 Board meeting, trustees discussed a peer review report on a funding application for a biomedical research study that aims to increase our understanding of the pathological and physiological mechanisms that cause exercise induced fatigue and post-exertional malaise in ME/CFS. Following some changes to the application, as a result of the peer review process, trustees agreed to fund the study, which will be carried in two European centres.

The study should help to demonstrate whether there are any pathophysiological abnormalities present, which may even be treatable, in people who meet the Fukuda research definition for CFS and the Canadian definition for ME/CFS. The study will also include a group of people with multiple sclerosis who experience significant fatigue (to see if there are any similarities) and a group of healthy controls with sedentary lifestyles.

This research commenced in January 2013 and trustees discussed the first progress report at their last meeting in September. All is proceeding according to the timetable and there have not been any significant problems.

RR Funding: £32,000

Sleep studies:

Trustees discussed three preliminary research proposals relating to sleep disturbance in ME/CFS at their December 2012 meeting. One of the proposals, a feasibility study relating to the development of a sleep management programme for people with ME/CFS, was then sent for peer review.

Following further discussion between Board meetings it was agreed to fund the feasibility study, which will be looking at different types of sleep disturbance in ME/CFS and possible approaches to management. Sleep abnormalities (and specific types of sleep disturbance) will be thoroughly assessed in 40 patients. A tailored sleep management programme will then be devised based on this information and delivered in collaboration with each patient.

The study, which is due to commence in early 2014, will be carried out by Professor Jason Ellis and colleagues at the Northumbria Centre for Sleep Research, University of Northumbria. Those involved have close links with Professor Julia Newton’s research group in Newcastle, from where patients will be recruited, and Professor Newton will be involved in the individual management programmes.

Dr Zoe Gotts, a member of the research team, gave a presentation on sleep disturbance in ME/CFS to the UK Research Collaborative meeting on Monday 22nd April.

RRF Funding: approximately £15,000

Ramsay Research Fund Grant Application Form:

A new electronic application form is now available.

Other research:

ME Observatory

Abstracts from two of the most recent MEO research papers to be published can be found here:

Conclusions from latter paper covering functional status:

ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.

Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research:

A further MRC highlight notice aimed at encouraging research applications, particularly involving neuropathology, has been issued.

Background information on MRC funded research:

In December 2011, the MRC announced details of five awards they are making in relation to the £1.5 million of ring-fenced funding for biomedical research that was secured as a result of the work carried out by the MRC Expert Group on ME/CFS research.

Details of the five awards can be found HERE.

The MRC has a website section on CFS/ME research that can be found HERE. This includes more details on the projects funded under the ‘Understanding the Mechanisms of CFS/ME’ call (specifically the lay and technical summaries), along with Panel Membership details.

The link to the project summaries document can be found under the section ‘MRC-funded research projects’.

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.

UK CFS/ME Research Collaborative:

After six months of preparation, the first ME/CFS Research Collaborative was launched at a meeting at the Wellcome Collection in London on Monday 22 April.

Over 100 researchers accepted the invite to attend – along with members of the All Party Parliamentary Group on ME/CFS, charity representatives and drug company representation. Among the invited guests adding support was HRH The Duke of Kent, Patron of the MEA.

The meeting was opened by Annette Brooke MP, Chair of the APPG on ME, who was followed by a number of speakers giving short presentations. Among topics covered was the work of the ME/CFS research funding charities (a joint presentation given by Sue Waddle from MERUK) and the work of those government bodies, the Medical Research Council and the National Institute for Health Research, that fund research and research infrastructure.

A prolonged lunch break gave everyone a chance to look at poster presentations and visit stands organised by the charities.

In the afternoon, there were a presentations covering a wide range of research topics including muscle abnormalities, immune system dysfunction, inflammation and cytokines, and sleep disturbance.

Media and website items relating to the launch include:

Statement from the ME Association

The Times – mostly about muscle abnormalities

The British Medical Journal

Parliamentary Early Day Motion tabled by Annette Brooke MP

Newcastle University links

Duke of Kent attends the launch

An Executive Board has been set up to develop the work of the UKRC, of which CS is a member. A summary of the last meeting can be found HERE.

CS reported on various recent developments involving the UKRC – including plans to hold a two-day research meeting in Bristol in September 2014, which will also include patient involvement.

Research News on the MEA Website:

The MEA website now has a regular Friday feature that summarises key findings from all the research papers that we have received that week.


Next Board meeting fixed for Monday and Tuesday 27th and 28th January 2014

Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser

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