Neil Riley, Chairman, ME Association
Recently, we announced the full details of our decision to invest nearly £200,000 in ME 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 comments from Dr Charles 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.
We are a small medical charity and I feel very proud of all our achievements. Management and strategic direction is provided by a dedicated team of trustees, including several, like Dr Shepherd, who work on a daily basis, volunteering their time for free.
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.
Almost everyone who works for the ME Association has personal experience of M.E., is currently living with the condition or has a loved one who has been affected. This knowledge and understanding 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.
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 also 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 December 2020.
We are active members of Forward ME which is an influential advocacy group comprising charity and political representatives led by the Countess of Mar who sits in the House of Lords, and the CFS/ME Research Collaborative (CMRC) which is made up of scientists, clinicians and advocates.
We work alongside Dr Nina Muirhead on medical education initiatives as part of the CMRC Medical Education Group, and we work closely with Carol Monaghan MP who has recently led several successful debates about M.E. in parliament and who hopes to establish an All-Party Parliamentary Group (APPG) in 2020.
Trustees are supported by a full-time member and part-time members of staff at head office and other part-time staff who work flexible hours on a contractual basis 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.
“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.”
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.
We named our research programme in honour of Dr Melvin Ramsay who helped bring M.E. into the awareness of the medical establishment and who also helped establish the charity and was its president for a number of years. He remained closely involved with us until his death in 1990.
We put a lot of resource into providing support. 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 which is 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 clinical and research guide) is available in hard-copy and also 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.
- M.E. Factsheet: What you need to know about M.E.
- M.E. Research Summary: Explains the research developments
- The Ramsay Research Fund: Details the investments we have made into vital biomedical research
Our website attracts around 1.1 million unique page views each year and we believe it is one of the most popular resources in the world. The What is ME? section and the MEA Blog are hugely popular. We will be launching a new and easier to navigate website in the New Year so stay tuned!
We are followed by around 21,000 people on Facebook, 15,000 on Twitter and 2,300 on our newly 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.
|“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.”
The UK ME Biobank
The M.E. Biobank, which the MEA 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 (MEA) is here to support people through all stages of their illness.
– M.E. is hard to accept. And those who do not accept their illness rarely recover. 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.
|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.|
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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