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May 22, 2019

M.E. is a largely misunderstood and unrecognised illness, not only nationally but also globally. As a result, it is easy to see how isolation and ignorance become common themes experienced by those living with the condition. Recently, there has been an increased attention on M.E. in the media, and with this, there has been a large focus on the narrative that M.E. is an illness that women get.

But what happens to the 20% of people with M.E. who are men? M.E. doesn’t discriminate and has devastating effects on the lives of everyone affected. For Simon, developing M.E. has “been hard, I have lost many friends. I can’t go out like I use to, and everything I do now has to be planned with care. Life has stopped for me in some respects. I do get down as I am not the partner and father that I used to be, it’s all very hard now but I do try and do what I can.”

Preliminary results from our Big Survey of life with M.E. in the UK show that 86% of men who have responded so far have felt socially isolated because of their condition, with a further 88% telling us that they had to stop or reduce social contact and 84% stopping or reducing sports and hobbies.

Martin has had M.E. for 10 years and tell us that “although not a symptom, the isolation and misunderstanding/lack of awareness is probably the worst thing. Because you feel alone, we are not a large group of people to the rest of the world. If I had any other illness I would be treated differently and more understood.”

Today we will be creating a space to talk about the impact that M.E. has on men and boys: everyone is welcome to contribute. On our social media and website you will find articles and case studies from men living with M.E. all asking the same question: #AreYouMissingMen?