Neil Riley, Chairman, ME Association
The ME Association is a small medical charity and yet I feel very proud of our achievements.
Management and strategic direction is provided by a dedicated team of trustees, including several, like Dr Charles Shepherd, who work on a daily basis, volunteering their time for free.
In 2019, we announced the full details of our decision to invest an additional £200,000 in ME/CFS research. The grants were awarded to:
- The ME Biobank to continue with their vital work until such time as the resource becomes self-sustaining,
- Dr Karl Morten and his team at Oxford University who will be investigating the recently reported blood plasma anomalies,
- Dr Keith Geraghty at Manchester who will obtain and report on patient evidence in that crucial period before and just after diagnosis.
You can read the full press statement on our website with comment from Dr Shepherd and the three grant recipients. We regard research investment as vitally important and have made grants totalling well in excess of £1million in recent years.
In 2020, we made a grant to Professor Nicola Clague-Baker and her team for a feasibility study that will measure physiological changes in daily activity in people with M.E. in their own homes.
This is the first time such an important study has been funded in the UK and we hope that the results will lead to a much larger grant application to the Medical Research Council or National Institute for Health Research.
Our team of experienced staff are committed to supporting the needs of this community. We have a full-time member and more part-time staff who work from home often on a flexible basis.
We also have a terrific team of volunteers up and down the country who help ensure your telephone helpline is available 365 days a year.
Everyone who works for the charity has an understanding or personal experience of ME/CFS, is currently living with the condition, or has a loved one or close friend that has been affected.
This knowledge and experience is what helps us to be who we are – delivering a quality service when and where it’s needed.
We provide much-needed support, reliable information, a voice when it’s needed, and we believe good quality research investment to be a key priority.
We couldn’t do any of this without your help and we are incredibly grateful for your trust.
Neil Riley, Chairman of Trustees
What we do and why we do it
M.E. (myalgic encephalopathy or encephalomyelitis) is a complex multisystem disease with a wide range of disabling symptoms.
The ME Association is here to support people through all stages of their illness because we desperately want to see everyone get the help they need and, through research, help to develop an effective treatment and one day even a cure.
We don’t employ an expensive CEO. Instead we have a terrific team of trustees who provide strategy and management on a voluntary basis, including Chairman, Neil Riley, Medical Adviser, Dr Charles Shepherd, and Treasurer, Ewan Dale, who all contribute daily.
Trustees are supported by 12 members of staff some of whom work at head office in Gawcott and others who work from home.
We also have a large number of dedicated volunteers who help ensure ME Connect – the telephone helpline – is available 365 days a year for people needing to talk or seek help. We recently recruited two social media experts – to help us deal more effectively with the rapid growth in activity on Facebook, Twitter, and Instagram.
All of the people working for the ME Association have personal experience of M.E., have loved ones affected by the disease or have been working for the charity for a long time and have a deep understanding of the condition and the issues that continue to surround it.
Our main priorities are to provide support, reliable information, a voice and representation, and funding for vital medical research.
Lobbying for positive change
Trustees attend and report on the important external conferences and meetings that take place.
Dr Shepherd has been working incredibly hard recently with the NICE guideline committee in the hope that the new and highly influential clinical guideline on ME/CFS will be more reflective of the patient experience when it is finally published in April 2021.
- We are active members of ForwardME which is an influential advocacy group comprising charity and political representatives and is led by the Countess of Mar and Carol Monaghan, MP.
- We are members of the CFS/ME Research Collaborative (CMRC) which is made up of scientists, clinicians and advocates and where Dr Shepherd represents us on the CMRC Executive.
- We work closely with Dr Nina Muirhead who is Chair of the CMRC Medical Education Group (see below).
- We are the secretariat for the All Party Parliamentary Group on M.E. which is chaired by Carol Monaghan, MP.
- We are members of the international Long Covid Alliance which is an American initiative aimed at bringing the patient communities closer together to lobby for positive change and increased research funding.
- We were part of the original MEGA proposal for a large genetics study into M.E. and provided key support and input into the revised DecodeME which received a £3.2 million grant from the MRC and NIHR in 2020. We continue to provide support for the project which hopes to begin recruitment in September 2021 (see below).
The DecodeME study
A £3.2 million application from members of the CMRC, for the largest ever genetics study into M.E., was approved by the Medical Research Council and National Institute for Health Research in June 2020.
The DecodeME study will require 20,000 DNA samples from people with the condition, and will use a ‘spit and post' system of sample collection. It could provide vital new information about disease causation.
You can register your interest now by visiting the DecodeME website. Recruitment will begin in September 2021.
“If it wasn’t for the ME Association I don’t think I would have been able to move from being very severely ill to where I am today.”
“The ME Association makes me feel less isolated. I believe that ME is real and physical, and I like that the ME Association is wholeheartedly behind research to prove this.”
Medical Education and Politics
We work alongside Dr Nina Muirhead on medical education initiatives as part of the CMRC Medical Education Group.
These have included talks with professionals around the country, attendance and presentations at the Royal College of GP's national conferences, and the new online CPD training module about M.E.
We continue to work closely with Carol Monaghan MP who has led several successful debates about M.E. in parliament and who is deputy chair of ForwardME.
Ms. Monaghan has re-established an All-Party Parliamentary Group (APPG) on M.E. which began meetings in January 2020. The ME Association will provide secretariat services to the APPG and we are represented by Dr Charles Shepherd.
Health Professional's Mailing
We have compiled a central mailing to health professionals up and down the country, who all now receive copies of ME Essential – the MEA members magazine – and details of any new developments that might be relevant.
This mailing not only helps us to reach more professionals, it also helps us to reach more people with M.E. who might be in GP surgeries etc. and we hope it will benefit the care and support they receive.
In July 2020, we sent an additional mailing to all those on our central list of the new ME Association Clinical and Research Guide. We are presently reaching nearly 1,000 health professionals directly, but more are reading what we send and feedback has been excellent.
The Ramsay Research Fund
We named our research programme in honour of Dr Melvin Ramsay who helped bring awareness of M.E. to the medical establishment.
He also helped establish the ME Association and was its president for a number of years. Dr Ramsay remained closely involved with the charity until his death in 1990.
You can read more about Dr Ramsay's work and how he viewed the disease in his book, which is available to order from the website shop.
We spend a lot of time working with scientists on new research grants because funding good quality biomedical research is a key priority for this charity. Recent grants totalling £200,000 were made from the ME Association Ramsay Research Fund.
The M.E. Biobank, which the ME Association has nurtured from its very beginnings, has become a first port of call for researchers from round the world. We have provided funding to cover all running costs of the ME Biobank since 2008. This has amounted to c.£380,000 and we have just agreed to provide an additional £100,000 until 2022 when it is hoped that this vital project will become self-sustaining.
Support when it's needed…
We put a lot of resource into giving as much support to people affected by this disease as we can. We do this by answering cries for help and providing extensive information, through phone calls at head office, emails or messages via social media or ME Connect – the telephone helpline – available 365 days a year.
We also convey information and generate discussion and debate of key issues. We gather information in the form of surveys and petitions that can then be used to try and improve things e.g. with NICE, or with debates in parliament, or medical education initiatives.
We publish over 90 leaflets, mostly written by Dr Shepherd, MEA Trustee and Honorary Medical Adviser, which are a cornerstone of what we produce and available at small cost (or free) from the website shop and through ME Essential – our exclusive and top-quality magazine for members.
The very popular ‘Purple Book’ (The ME/CFS/PVFS Clinical and Research Guide) is available in hard-copy and on Kindle and is updated annually. We also send this authoritative publication to hundreds of medical professionals each and every year for free.
We have around 5,000 paid-up members who receive ME Essential. We receive funds and support from members and an increasing number of non-members. Support for the ME Association continues to grow, most often by non-traditional methods e.g. social media.
- The ME Association: What we do and Why we do it.
- M.E. Factsheet: What you need to know about M.E.
- M.E. Research Summary: Understanding the pathology of M.E.
- The Ramsay Research Fund: Investing over £1million in biomedical research.
|“I like and trust that many people working for the ME Association have first-hand knowledge and experience of M.E.”|
“The ME Association has been there since I first became ill and given support when all else has failed. Its continuing presence is very important to me.”
Visit our Membership page to read more comments and join the ME Association today!
Website and Social Media
We are followed by around 21,000 people on Facebook, 15,000 on Twitter and nearly 5,000 on our recently launched Instagram page.
The number of people viewing or engaging with our posts increases dramatically during specific events e.g. Severe ME Week and ME Awareness Week, or when important news breaks.
We reach upwards of 20,000 people every week on Facebook alone, and recently reached 252,000 people with a single post!
We are eternally grateful to all our supporters who enable us to help make the UK a better place for everyone affected by M.E.
ForwardME was established by the Countess of Mar and recently marked its' ten-year anniversary. We have worked with Lady Mar on a wide range of issues ranging from child protection and medical education through to NHS services and the ever-present need for biomedical research.
Forward ME played a vital role in lobbying for a full review of the NICE clinical guideline. Dr Shepherd is currently working very hard as an expert witness for NICE to help ensure that the new guideline when it is published in April 2021 will be better reflect the actual patient experience.
Regular meetings of ForwardME see Lady Mar invite a range of professionals from the health, social care and research fields, as well as ministers, politicians and civil servants from the various government departments that have an effect on M.E. policy, to the House of Lords.
This collaborative provides important opportunities for us to raise the profile of M.E. and put forward our case for improved medical education, better NHS services and more biomedical research.
In April 2020, the Countess of Mar announced her retirement from the House of Lords after a long and distinguished career. We are delighted to confirm that she will continue with Forward ME for the foreseeable future.
- Stalwart champion of the ME community retires after distinguished parliamentary career | 01 May 2020
The UK ME Biobank
The M.E. Biobank, which the ME Association has nurtured from its very beginnings, has become a first port of call for researchers from round the world.
We have provided funding to cover all running costs of the ME Biobank since 2008.
This has amounted to c.£380,000 and we have just agreed to provide an additional £100,000 over the next two years until such time as this vital project becomes self-sustaining.
We are the only organisation that has supported this essential resource throughout this period, and Dr Shepherd now chairs the Biobank Steering Committee.
The Biobank – run by the Cure-ME team at the London School of Hygiene and Tropical Medicine (LSHTM) – has now shipped out blood product samples to university research groups in 10 countries overseas, and inquiries from researchers keep coming in.
This busy programme means that highly qualified people can turbocharge research into the causes and biological basis of this horrid illness without having to wait months, even years, to recruit severely sick patients into their study programmes.
In the Biobank, the team continue to match M.E. blood samples with blood taken from patients with multiple sclerosis and with healthy controls.
And the work at LSHTM is enabling this small team of dedicated scientists to publish their own high-quality studies in top-notch scientific journals.
Dr Luis Nacul and Dr Eliana Lacerda are in charge of the ME Biobank and lead the research that has resulted from it.
They are supported by Caroline Kingdon and a dedicated team who, among other things, visit patients at home to collect blood and clinical data.
Dr Nacul splits his time between London and his new role as medical director of the chronic complex diseases programme at the British Columbia Women’s Hospital in Vancouver.
- Read more about the M.E. Biobank by visiting the Research section.
- You can also visit the M.E. Biobank‘s own website.
- Biobank photographs by Yasmin Crawford.
M.E. (myalgic encephalopathy or encephalomyelitis) is a complex multisystem disease with a wide range of disabling symptoms. The ME Association is here to support people through all stages of their illness.
– M.E. is hard to accept. We help people understand and come to terms with M.E.
– M.E. can be difficult to diagnose. We help people get the diagnosis and medical help they need by providing accurate information and working to improve medical understanding and education.
– M.E. wrecks lives. We help people struggling to cope practically, emotionally and financially. We also work to shield them from remedies that offer false hope.
– M.E. is often invisible. We help people explain their illness to disbelieving relatives, colleagues, friends and health professionals.
– M.E. is misunderstood. We regard research investment as a key priority and work hard to put as much investment into good quality biomedical research as we can in the hope that we will ultimately come to know what causes M.E. and how it can best be treated.
– M.E. silences. We campaign and speak out for those who can’t defend themselves.
The ultimate goal of the ME Association is to find a cure for people with M.E. If we continue to work together we will discover biomarkers for the disease that lead to effective treatments and a cure!
|The Real M.E.|
M.E. can affect anyone at any time of life. It is more common and more functionally debilitating than better-known diseases like Multiple Sclerosis.
The Real M.E. Campaign put real faces to M.E. and helped challenge misconceptions.
If you would like us to include your images and story on our website, social media and work with you to publish an article in the news-media then do please get in touch: Feedback@meassociation.org.uk
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279
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