Neil Riley, Chairman, ME Association.
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 Charles Shepherd, who work on a daily basis, volunteering their time for free.
In December 2019, we announced the full details of our decision to invest an additional £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 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.
On ME Awareness Day last week we announced a pilot study that will use an adapted form of cardio-pulmonary exercise testing to help record physiological changes during daily activity in people with M.E.
This study will be carried out by researchers from Leicestershire and Oxford Universities and will be led by Dr Nicola Clague-Baker who is also a member of Physios 4 M.E.
It will monitor people in their own homes using a variety of measures and is the first study of its kind certainly in the UK.
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.
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 trustee Ewan Dale, who all contribute daily.
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.
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.
We 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 early 2021.
We are active members of Forward ME (see leaflet for more information) 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 also on the board of the CFS/ME Research Collaborative (CMRC) which is made up of scientists, clinicians, and advocates.
A major application for potentially the largest ever genetics study, was submitted to the Medical Research Council and National Institute of Health in January 2020.
It has involved extensive consultation with these funding bodies, and it will require 20,000 DNA samples from people with ME/CFS. It could provide vital new information about disease causation. For more information and to register your interest, please visit the ME/CFS Biomedical Partnership website.
We work alongside Dr Nina Muirhead on medical education initiatives as part of the CMRC Medical Education Group, and we continue to work closely with Carol Monaghan MP who has led several successful debates about M.E. in parliament.
Ms. Monaghan has re-established an All-Party Parliamentary Group (APPG) on M.E. which began meetings in January 2020. The MEA provides secretariat support to the APPG and we are represented by Dr Charles Shepherd.
ME Awareness Month – May 2020
The Lost Years
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