What we do

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.

Provide support and 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.

Invest over £2 million in research

We regard research investment as vitally important. We fund medical research through the Ramsay Research Fund. We are proud supporters of the UK ME/CFS Biobank.

Lobby 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

We estimate that at least 404,000 people in the UK have ME/CFS. In addition, 950,000 people unable to recover from a Covid infection could meet the diagnostic criteria for ME/CFS. This could mean that 1,350,000 adults and children in the UK are affected by ME/CFS. It represents a very real health crisis, and we are determined to improve the healthcare that people receive.

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

  • Our frontline support service, ME Connect, provides information, signposting and support. You can contact ME Connect via its freephone Support Line on 0808 801 0484 (open Monday to Saturday) or by email at meconnect@meassociation.org.uk
  • We have the most extensive range of free literature written by Dr Charles Shepherd and other topic experts – available to read and download.
  • The ‘Medical Matters’ Q&A section of the website has a substantial index of expert responses to a whole range of topical and relevant questions.
  • We keep track of all the latest developments and provide commentaries in the News section of our website and through our e-newsletter.
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Campaigning

  • We run an annual campaigning programme focused on our key objectives: to provide support, fund research and educate and influence the broad eco-system of parties interested in ME/CFS.
  • 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.
  • We pioneer campaigns that recognise those who provide support to members of the charity, such as Carers Week.
  • We support fundraisers across the UK in their efforts to raise awareness and pledges and have a dedicated PR resource to publicise their activity and encourage more interest in supporting our dedicated teams.

Visit our social media pages for the most up to date campaign news:

Ramsay Research Fund logo and banner

Research

  • We make grants available for suitable ME/CFS and Long Covid medical research studies. We want a better understanding of what might be causing and perpetuating ME/CFS.
  • The Ramsay 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 treatment, as well as healthcare research.
  • We have supported the UK ME/CFS Biobank at the LSHTM since it began in 2011.
  • 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.

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.
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