UK charity Action for M.E. are this week hosting a social media campaign and its aim is to raise awareness of M.E. as a hidden illness among as wide an audience as possible, and to help people understand what having M.E. feels like. The all important message being, ‘there is a hidden face of M.E. I want you to see it.’
You can read all about the campaign HERE and if you do share the video (above) or indeed any of the associated blogs, then please don’t forget to use the hashtag #HiddenfacesofME on Facebook and Twitter. Indeed, in you use Twitter you can visit that hashtag and check out all the posts and comments this campaign is attracting.
Here are some of the blogs and films from those who have decided to participate. Please check them out and perhaps engage with the authors before sharing their stories on social media if you are able.
- Lorna Burford, on her Raindrops of Sapphire blog, who posted on Monday
- Olivia Cole, posting a film on her CFS Selfies YouTube channel, who also posted on Monday
- Emily Beardall, posting on her A Prescription for M.E., who posted on Tuesday
- Sam Livy, posting on her Facebook page every day when she is able
- Lizzie Guntrip, who was interviewed on BBC Radio Suffolk (@ 17mins 50secs) and will is also Tweeting all week
- Rosie Fletcher, who is posting on her Oh So Pleasant blog today
I hadn’t planned to actually participate in the campaign with a personal story, although I had said I would be more than happy to help promote it. But having read the other blogs, listened to the interview from Lizzie and watched the films, I changed my mind and have now had published something about my own personal struggles with M.E. You have been warned! 🙂
Can we do more?
An initiative like this one can of course continue beyond a week and indeed should. Many often do. Our stories can be powerful. But I was pondering yesterday just how much the blogs people write and the efforts we make to raise awareness actually reach let alone impact the world outside of this community. I think a concerted campaign like this one – shared widely enough on social media – does have the potential to reach the people that need to hear our stories and learn from our experience. People like those responsible for health, welfare, and research spending in Government, the medical establishment, existing ME/CFS specialist clinics, health commissioners, doctors and specialists, as well as ME/CFS experts; and of course our own families and friends.
Other recent efforts…
I was very impressed and inspired by an e-presentation from Sally Burch delivered to a conference at Queens University in Belfast last Saturday. This very expressive piece of work has been widely applauded on social media and rightly so. I think it demonstrates another way in which we might perhaps seek to influence decision-makers and those others in positions of power with our stories and wisdom. And while I don’t think I could measure up to that particular performance I certainly know people who’d be willing to lend a hand – and that’s what has been good about the internet; meeting other people with skills and abilities to share – and is especially great about ME Action Network.
Another and similar initiative to provide a platform for patients to tell their stories and reveal this often ‘Hidden face of M.E.’ has been wonderfully put together by The Solve ME/CFS Initiative in America with their Humans of ME/CFS website. The ultimate aim is to share our stories and help make the widespread devastation of M.E. very apparent and real to those who are in charge of research funding, in the hope that they will be less likely to overlook this community when it comes to that all important allocation of resources. I think it’s a great resource even if you do have your own blog and brings everyone’s stories together in one place which lends the effort even more power!
Of course writing and speaking about our own struggles with this disease or explaining what we want changed and improved doesn’t always have to be for some greater purpose. Writing and speaking bring their own benefits to the author in a personal way and it can be cathartic. It can also be a way to reach out to others in a similar situation and make contact – to share burdens and perhaps make friends. For such a very isolating illness it can be good to write, to talk, and to share.
Thank you to everyone for taking part in this particular campaign and for all that appears now online, and to those who do share the efforts of others, and in particular to those I mentioned above for their own particular initiatives. Also to ME Action Network for providing such a great platform where we can connect.
Russell Fleming (Twitter: @Firestormmer)