Real People Real ME

What We Do and Why We Do It

Experienced Team

We have been providing expert help since 1980. We
understand the challenges faced by people with PVFS, ME/CFS, and Long Covid, and believe that nobody should struggle alone. We have a team of experienced Trustees, staff, and volunteers who are committed to supporting the needs of all affected adults.

Over £1 Million

We regard research investment as vitally important and have made grants of over £1 Million in recent years. We fund biomedical research through the Ramsay Research
Fund. We are proud supporters of the UK ME/CFS Biobank.

Community

We provide a safe and welcoming community for people affected by these conditions who come together and benefit from expert knowledge and by sharing their experiences. We provide a popular membership option and access to engaging social media channels.

Lobbying for positive change

We represent patient interests in discussions with the Government, NHS and social care services to improve understanding, training, knowledge and research investment, and to ensure compliance with the NICE Clinical Guidelines.

HEALTH CRISIS

More than 1.25 Million people in the UK live with ME/CFS and Long Covid which represents a real health crisis. These can be life-changing and indiscriminate medical conditions that prevent adults and children from functioning normally. They prevent or restrict the ability to work or go to school, and inevitably lead to a lower quality of life.  ME/CFS and Long Covid share many symptoms in common but also some differences.
Up to 50 per cent of people with Long Covid are now believed to meet the diagnostic criteria for ME/CFS. There are no effective drug treatments at this time, but convalescence and appropriate self-management can help stabilise and improve functional ability. While complete recovery from ME/CFS is rare, we don’t yet know enough about the prognosis for people with Long Covid.

SUPPORT

  • We provide support and information via ‘ME Connect' which offers a telephone helpline (365 days a year), email, and social media messaging.
  • We have the most extensive range of medical literature written by Dr Charles Shepherd and other topic experts – available to download from the website shop.
  • The ‘Medical Matters' section of the website has a substantial index of expert responses to a whole range of topical and relevant questions.
  • Many people find they need to rely on Government benefits and we have specialists who provide advice on the latest changes to the rules and how to navigate this complex area.
  • We keep track of all the latest developments and provide commentaries in the website blog and e-newsletter.

CAMPAIGNING

About the ME Association campaigning illustration
  • We continue to lobby Westminster and Holyrood – for greater acceptance, understanding, and research – and are part of the joint secretariat to the All-Party Parliamentary Group on ME.
  • We are proactively campaigning with local groups and working with the NHS to improve health and social care across the UK.
  • We were actively involved in getting the NICE Clinical Guideline improved for people with ME/CFS and completely endorse the new recommendations.
  • In December 2022, we pioneered a campaign to recognise those who had provided support to members of the charity. Carers, partners, and children were all recognised and received a wonderful seasonal hamper.
  • We launched #CountMEIn in May 2023 to reach as many people as we could with a promotional campaign on social media and in podcasts. We aim to welcome them into the community, get an accurate diagnosis, and obtain appropriate management support.

RESEARCH

  • We make grants available for suitable ME/CFS (and Long Covid) research studies. We want a better understanding of what might be causing and pepetuating ME/CFS.
  • The Ramsey Research Fund provides the ring-fenced funding of appropriate grants and we make no administration charge. Its focus is on biomedical research to find diagnostic markers, causes, and treatments.
  • We have supported the UK ME/CFS Biobank at the LSHTM since it began in 2011 and are investigating the establishment of a UK Post-Mortem Tissue Bank in 2023.
  • The patient community is very engaged and eager to learn more about research developments. We provide lay summary reviews of key studies and topics and research conference reports.
  • A weekly digest of the most recent research is published on the website blog, and we maintain a popular Index to all ME/CFS and Long Covid research studies – available as a free download.

COMMUNITY

ME Assocaition membership and community
  • We are very lucky to have terrific support from members. Everything we do is based on an assessment of their needs.
  • Members receive a quarterly magazine covering personal stories, medical advice, useful information and much more.
  • We have a comprehensive directory of local groups that allow people to meet up and share information.

READ MORE

We have produced a booklet that explains more about the ME Association, what we do, and why we do it. You can downloaded it for free from the link below:

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What we do and why we do it PDF
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