ME Association Post AGM Statement

Thank you to all our members who joined the ME Association’s AGM on Monday 9th December 2024 at 2pm, we value your contribution.

It was an opportunity to reflect on our key activities and achievements, discuss challenges and introduce future plans.

We are committed to working together with MEA members and the ME/CFS community, and remain focused on improving the quality of life for those affected by ME/CFS. We do this by providing support and information; funding research to find biomedical markers and treatments and educating and informing the broad eco-system that includes media, politicians, educators, health and social care providers and the commercial sector. This has always been and continues to be our focus, and we welcome constructive feedback in order to continue delivering our strategic objectives.

(Please note: The written minutes will record the formal Agenda items.)

With respect to the questions raised in the AOB section of the meeting, and relating to a proposed Motion, the MEA confirms:

1. Investment into research, information, and support programmes:

• The MEA’s Ramsay Research Fund (RRF) is where donations are ring fenced for biomedical research into the cause and treatment of ME/CFS.
• This means that all money raised goes to research. There are no administrative costs to pay as all the assessment and monitoring is carried out by Dr Charles Shepherd and contractual arrangements are overseen by two of our trustees, Mike Mitchell and Neil Riley.
• The MEA’s RRF is currently funding, or considering funding just about every research group here in the UK that is carrying out biomedical research into cause or management of ME – a total of 12 different centres or individuals.
• In terms of funding the total cost of all the research, we are currently funding in 2024, or are considering funding in 2025, amounts to well over £500,000.
• In relation to the 12 items of research we are currently funding, or considering to start funding from the RRF or general funds:

I) Research into causation

a) All the basic running costs of the ME Biobank, which is part of the UCL Biobank at the Royal Free Hospital in London. The ME Biobank supplies blood samples and anonymised clinical data from people with ME/CFS to research groups in the UK and abroad.

b) Post mortem research in collaboration with the Manchester Brain Bank.

c) On going research into mitochondrial dysfunction and metabolomics at the University of Oxford, including a new PhD position in 2025.

d) Funding to Physios for ME, including a pilot study on lactate levels in people with ME/CFS – University of Liverpool.

e) Under consideration – research into the underlying physiological cause of post exertion malaise.

II) Research into diagnostic biomarkers – two separate studies

a) University of Surrey.

b) University of Oxford.

III) Research into management and treatment

a) Management of dysautonomia – orthostatic intolerance and PoTS at University of Leeds.

b) ME/CFS in pregnancy – University of Newcastle.

c) Clinical trial of a drug treatment – protocol agreed and contractual arrangements in progress

IV) Forthcoming Research Initiatives

• We are also discussing the possibility of contributing funding to a major new research study that will involve both Long Covid and ME/CFS and an epidemiological study – the total cost of which would be in excess of £1 million.
• Before making any further major funding decision, we want to see whether there are any major developments in cause and management of Long Covid that could be applied to ME/CFS. Sadly, despite significant investment into Long Covid there haven't been any breakthroughs relating to either cause or treatment so far.
• We also want to see whether there are any significant findings from the DecodeME study that provide new ideas for research into biomarker development or causation
• Further information on the research we are funding can be found on the MEA website news section and the Ramsay Research Fund section. The ME Biobank has a separate website run by the CUREME team at the LSHTM.

V) Health and Social Care

• We are running a £100,000 one year pilot project in health and social care. Its primary aim is to engage with healthcare clinicians and decision-makers to implement the NICE Guideline in their services.
• The pilot is focused on engaging with the ICB of Buckinghamshire, Oxfordshire, and West Berkshire. This ICB is now working on a review of existing ME/CFS and LC specialist services with a view to providing integrated services in each of the 3 counties. We are also engaging with 5 other ICBs in England and the 7 Health Boards in Wales that are developing similar services.
• At the end of October 2025, we will assess the performance of the pilot and consider how it could be extended into other areas of the country, by expanding the healthcare team, and providing a bridge between patients and healthcare services. This would essentially embed healthcare into the ME Association and will require significant additional funding for at least a further 5 years.

VI) ME Connect Re-launch

• Katharine Leat was appointed to manage ME Connect in January of this year.
• Phone, emails, and social media messaging all fall under the same management.
• It was identified there was scope for development.
• In the summer of 2024, The MEA Board approved a 12 month pilot scheme =
  • Increased opening hours.
  • Employed staff working alongside existing and new volunteers.
  • Freephone number.
  • Reduced response time for email responses.
  • Change of phone line service provider to improve efficiency and reduce running costs.
• Four part-time staff have been appointed.
• Eight new volunteers have joined the well-established team.
• September 2024 the pilot scheme was launched.
• October 2024 (first full month of pilot) recorded 300 calls answered, the highest number in a month to date. An increase of nearly 50% from the previous record.
• A new training programme is being delivered for new staff and volunteers.
• New phone line service provider ‘Call Handling’ will begin in February 2025
  • Specialist provider to many charities.
  • Improved reliability and reduced costs to The MEA.
  • Additional safeguarding measures.
  • Calls received through a VCC removing the long-standing requirement for landline phones.
• Research has been undertaken into the most appropriate platform for an online community forum.
• New group of volunteers to begin training January 2025.
• Ongoing skills development training programme throughout 2025.
• An online community forum will be launched in 2025.

2. Improving operations, introducing new and updated approaches, Governance Review, Transparency, Consultation and Development over the next 18 months:

• Created a new Special Projects Manager position to create new strategically focused projects.
• Expansion of the Communications team with the appointment of two new members of staff to manage our digital platforms (with over 70k social media followers reaching over 3.5m people and a million website users, we intend to expand our activity across other platforms; use more video content; become even more accessible; and make more platform specific content to reach more people).
• Our special projects team is reviewing a selection of projects which require substantial funding. A feasibility study relating to the benefit and cost effectiveness of these projects is being undertaken.
• Recruiting New Trustees: we advertise beyond our Membership for Trustees and will continue to do so and are open to applications to supplement the tremendous capability and experience we have across legal, information technology, marketing and communications, medical, scientific and business.
• We intend to become more transparent about what we are spending our funds on in 2025 and are developing a year round communications programme informing you, our members, about what we are doing.
• Governance – We will undertake a review of the Governance of the MEA. This to include consultation with our members, especially of those with Severe ME (facilitated), but also to seek advice from and to consult with all relevant organisations and bodies within the charity sector. The aim to ensure that the MEA continues to follow best practice in all its activities. We will report to Members by the next AGM.