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M.E. Awareness Month: sharing stories with millions

May 29, 2020

To everyone who took the time and energy to share their story with us this M.E. Awareness Month, allowing us to bring it to a wider audience on our social media channels, in newspapers, on websites and on the radio; to those shared intimate details of their lives in interviews with journalists and presenters – we say a huge and grateful thank you.

“The only time I’m able to leave the house is for hospital appointments, and my mum has to push me in my reclining wheelchair. Although I empathise that it’s a difficult time for everyone right now, I don’t think people realise that in the coming weeks and months when everything goes back to normal, people go back to work, meet friends and family and go on holiday, that this will not happen for me and thousands of others with severe M.E.”

As one of the scores of stories shared with us this M.E. Awareness Month, the reality of life for Olivia, 24, reached more than 5,000 people via the Wigan Evening Post and About Manchester along with nearly 12,000 people on Facebook. Olivia told us:

“It makes what I go through somewhat worthwhile to know my story is getting out.”

This May, our social media tweets and posts reached 10% more people than last year, and 2.7 million people had the chance to read or hear our media case study stories, letters and interviews about life under lockdown with M.E., published and/or broadcast more than 60 times. Paying for the equivalent advertising space would have cost £100,000. As we face a significant drop in our income, and hard decisions about where we spend our funds, securing no-cost editorial coverage to make M.E. more visible is more important than ever.

We also took the opportunity to highlight the possibility, being raised by our medical advisors, researchers we work with and international experts, of a spike in post-Covid illnesses – including M.E. Our Chief Executive Sonya Chowdhury’s letter to UK editors stresses the importance of taking time proper time to recover from any virus.

"We know that it is sensible for anyone with a virus to take proper time to recover. They should not push themselves, but instead listen to their body and rest as much as needed, to give themselves the best chance of making a full recovery. Action must now be taken to investigate the long-term post-viral effects of COVID-19, and put appropriate support in place for those whose health is affected beyond initial viral infection."

Here's a selection of the stories we've been getting out there.

  • More than 1,600 people so far have seen our new short film of Daisy, Simon and Naomi sharing their insight, resilience and experience.
  • Wendy, who has M.E., and our Head of Communications, Clare Ogden, highlight the impact of M.E., and how our Crisis, Support and Advocacy Service can help, on BBC Radio Tees (2h 26m 15s).
  • "As someone who turned to Action for M.E. when my relapse hit, it’s so lovely to be able to say a big thank you to them for being at the end of the phone and being so understanding," says Hayley, who welcomed Clare onto the Spoonie Village podcast, where they talked about using social media to advocate for people with M.E.
  • "I wish for people to realise the battle we have, we don't want to be this way," says Sarah in a Falmouth Packet article. Charmaine, also sharing her story, says: "The biggest change is not working. I work part-time and that is also my social time as I don’t have the energy after work to go out. Being at home is very much normal for me."
  • Speaking to the North Edinburgh News blog, Rhona, our of our Mentor M.E. volunteer mentors, says: "For all of those individuals that have never had to restrict their lives to their own homes, I’d like them to know that what they are experiencing during Covid-19 is the normal for those with chronic illnesses."

We can still support you to share your story, whether you have M.E. or you are a carer, whatever your age and wherever you live. Raising awareness of M.E. and its impact isn’t something we just do during May, but all year round