This list will be added to on a regular basis, and hopefully will give you a good choice of organisations that may be able to help you in some way. Only Websites are shown at present. There are many groups that sit on Facebook only, and it isn’t proposed to list those at present as they can be easily searched for within that medium.
Open Medicine Foundation
Open Medicine Foundation (OMF) envisions improved health care for patients suffering from chronic complex diseases with collaboration between the patients, clinicians, and researchers.
Link to The Open Medicine Foundation Website
Invest in ME Research
An independent UK charity
Finding, funding and facilitating biomedical research into Myalgic Encephalomyelitis (ME)
Link to the Invest in ME Research Website
The ME Trust
We offer individually tailored whole person care. That means we seek to support you in whatever way is right for you as an individual physically, or emotionally, or spiritually. As well as listening and caring for the needs of the whole person, we offer encouragement and support to families and immediate community of carers.
ME Association
We provide information, support and practical advice for people, families and carers affected by M.E. (Myalgic Encephalopathy), Chronic Fatigue Syndrome (CFS) and Post Viral Fatigue Syndrome (PVFS). We also fund and support research, and offer education and training.
Link to the ME Association Website
Action for ME
We’re working to ensure adults, children, young people and families living with the illness are supported during this unprecedented time, and beyond. Get connected to Action for M.E. services, support and resources by phone, email and online, including peer-support and services local to you.
Link to the Action For ME Website
Tymes Trust
Tymes Trust is the only national ME charity dedicated to children and young people with ME and their families. Our entire team work pro bono and in 2010 we received the Queen’s Golden Jubilee Award for Voluntary Service, for pursuing the educational rights and advancing the care of children with ME. We played a major role in producing the children’s section of the Dept of Health Report on CFS/ME (2002).
Link to the Tymes Trust Website
ME Research UK
The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). This is a debilitating illness which affects between 120,000 and 240,000 people in the UK, but is neither well understood nor, in many cases, properly recognised.
Link to ME Research UK Website
The Grace Charity For M.E.
The Grace Charity for M.E. [Myalgic Encephalomyelitis] is based in Kent, England. We were approved for charity status in November 2006, and are based on Christian prayer. However, we want to help M.E. sufferers of any faith, or of no faith at all.
It is still a necessity to promote M.E. awareness, perhaps more so than ever, because sufferers and their carers still receive little recognition of this illness. In addition, a current lack of governmental support into biomedical research is not helping to find a medical cure.
Link to The Grace Charity For M.E. Website
#MEAction UK
How to get involved
To get more involved in advocacy, education, and outreach in the UK, contact uk@meaction.net. You can also join a local Facebook group. Or, make an appointment to talk to a community organiser if you have questions about how best to get involved.
25% M.E. Group
The 25% M.E. Group is a nationwide charity. We campaign to raise awareness of M.E and provide services to people affected by severe M.E. (Myalgic Encephalomyelitis). Your support is vital to our success. Join us to become a member, donate or get involved in our campaigning.
Link to 25% M.E. Group Website
Forward ME
Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.
Forward-ME has no formal constitution. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS.
Link to the Forward ME Website
The Hummingbirds’ Foundation For M.E.
Link to The Hummingbirds’ Foundation For M.E. Website
M.E. Support
M.E. Support is one of the leading websites on Myalgic Encephalomyelitis providing information, advice and support. M.E. is little-known and often misunderstood but it is an extensive and debilitating neurological disease.
Solve MECFS Initiative
The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), since being founded in 1987. SMCI envisions a world free of ME/CFS and works steadfastly to make this disease understood, diagnosable, and treatable. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding toward a cure.
Link to the Solve MECFS Initiative Website
M.E. Advocacy
Recognition, Definition, & Research For Myalgic Encephalomyelitis (ICC)
Link to the M.E. Advocacy Website
M.E. International
Link to the M.E. International Website
Irish M.E. Trust
The Irish ME Trust was established in 1989 to provide information and a counselling service to those affected with ME as well as targeting individual problems on behalf of sufferers. We aim to create awareness in the general public and the medical profession as to the plight of ME sufferers in Ireland and contribute to quality biomedical research studies.
Link to the Irish M.E. Trust Website
ReMEmber
The Chronic Fatigue Society
We help people with ME (Myalgic Encephalomyelitis), also known as CFS (Chronic Fatigue Syndrome), to get the best possible treatment and advice to enable them to lead happy and healthy lives.
Salus Fatigue Foundation is a not for profit organisation that provides support, education and help in the long term to inspire people living with fatigue related conditions to improve their health and wellbeing.
We have supported 15,000 people through both our awareness work and helping people make change in their lives. We have over 10 years of experience, knowledge and understanding of what works for people and within our communities.
Time For Unrest: Why Patients With ME Are Demanding Justice.
