The ME Association - The ME Association (original) (raw)
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The ME Association has been providing expert help since 1980. We understand the challenges faced by people with ME/CFS and Long Covid and believe that nobody should struggle alone.
- We provide a safe and welcoming community for people to come together and benefit from sharing their experiences.
- We offer reliable and timely information using expert knowledge and have the largest range of free literature covering all aspects of life with ME/CFS and Long Covid.
- Support is available from ME Connect and the telephone helpline, email and social media messaging service.
- We offer membership, a magazine, newsletter, free information on the website including Medical Matters, and we respond effectively to the many requests for help that we receive daily.
- We fund biomedical research including the UK ME/CFS Biobank, so that we can better understand what causes and perpetuates these diseases, and in the hope that effective treatments can be found.
Health Crisis
We estimate that at least 250,000 people in the UK have ME/CFS_._ In addition, a significant but unknown number of people diagnosed with some form of Long Covid also meet diagnostic criteria for ME/CFS. It represents a very real health crisis.
Based on past epidemiological research evidence we estimated that at least 250,000 people had ME/CFS in the UK. This figure is likely to be a significant under-estimate as a result of some people having remained undiagnosed or misdiagnosed, and more recently with people developing ME/CFS after catching Covid-19.
Research evidence also indicates that around 50% of people with some form of Long Covid (currently around 2 million in the UK) meet diagnostic criteria for ME/CFS. We are currently reviewing all the research evidence with a view to producing a new estimate that is still evidence-based and would be accepted by organisations such as NHS England.
More information
- These can be life-changing and indiscriminate medical conditions that prevent adults and children from functioning normally.
- They stop or restrict the ability to work or go to school, and inevitably lead to a lower quality of life.
- There are no effective drug treatments at this time. The focus is on stabilising symptoms and improving functional ability with personalised interventions and appropriate self-management.
- While complete and sustained recovery from ME/CFS is believed to be rare, we don’t yet know enough about the prognosis for people with Long Covid.
- We are working with the Department of Health and Social Care and the NHS to implement the NICE Guideline on ME/CFS because good healthcare is essential to improving life quality.
PVFS = Post-Viral Fatigue Syndrome.
ME = Myalgic Encephalomyelitis/Encephalopathy.
CFS = Chronic Fatigue Syndrome.
Long Covid = Post-Covid Syndrome.
Changing attitudes and improving lives…
The Real M.E. Campaign
People with M.E. and Long Covid are demonstrating they possess the confidence to be seen and are raising more awareness than ever before.
We began the campaign in 2018 and featuring images of ‘real' people has had a very positive impact!