Living with the serious neurological condition, Myalgic Encephalomyelitis (M.E.), brings daily challenges. It’s not just about managing painful symptoms – it’s also about dealing with people who don’t understand M.E., or sometimes even accept it. That’s where Action for M.E. comes in. It is the only UK charity to support people of all ages with M.E. (sometimes diagnosed as chronic fatigue syndrome, CFS or M.E./CFS), like Niamh, 21, who says:
“I was 12 when I got ill. It took around half a year to get the full diagnosis of M.E. and I was very fortunate to have a supportive GP. For lots of people suffering with chronic illnesses, lockdown does not have a start and end date. M.E feels like a dull roar, constantly electrifying my joints with a chronic pain that doesn’t shift even in the hottest of baths and a lethargy that drags your body into the ground. That’s the best way I can describe it. That, or being asked to run a marathon with the flu.”
How Action for M.E. Help
Action for M.E.’s new Crisis, Support and Advocacy Service was set up in April as a direct response to the Coronavirus pandemic. Its experienced, friendly team offers a range of support, including linking with practical assistance to get food delivered, sharing essential information about managing M.E., and working one-on-one with young people with M.E. and their families to make sure they can access school and healthcare in a way that works for them. Niamh says:
“Action for M.E. are doing fantastic work and providing much needed support and awareness for a very deserving cause. Everyone I have talked to on the team is extremely kind.”
Action for M.E. also offers a range of peer-support services, including friendly online forums, that help reduce the isolation that so often comes with M.E. It works closely with professionals and policy-makers to improve access to appropriate care and support services. The charity also collaborates with people with M.E., doctors and scientists to co-lead biomedical research, like DecodeME, the world’s largest DNA M.E./CFS study.
What is M.E.?
M.E. is a chronic condition affecting many systems in the body – including the nervous and immune systems. It affects at least 250,000 men, women and children in the UK, and thousands more family members and friends.
Children, young people and adults with M.E. experience post-exertional malaise, the body and brain’s ability to recover after expending even small amounts of energy, leading to a flare-up in debilitating symptoms. For those more severely affected by M.E. – one in four people with the condition – this can mean something as simple as sitting up in bed, or having a very short conversation with a family member.
Many COVID-19 patients are already talking about lingering symptoms which closely resemble those of M.E. Action for M.E.’s Chief Executive, Sonya Chowdhury, says: “Evidence from studying the longer-term impact of other viral outbreaks, such as SARS-CoV-2 and H1N1 (swine flu), suggests we may well see an increase in post-viral M.E. as a result of Covid-19.”
One way you can help is by voting for Action for M.E. in our August charity poll, giving them the chance to win 20% of this month’s profits! Cast your vote for Action for M.E. this August and help bring hope to adults, children and young people with M.E. and their families, now and in the future. Thank you.
Find out more about Action for M.E. and how you can support the charity further by visiting www.actionforme.org.uk.