Pack of interest in ME/ facebook - Myalgic Encephalo...

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Pack of interest in ME/ facebook


Dear all

Posted yesterday about adrenaline surges and 2 people kindly replied which was helpful.

Trying to accept and understand our condition. I’m not especially into Facebook but put an interesting post up to share about how it feels to have ME.. don’t think I know how to get it on here! Anyway my husband is very into Facebook , posts stuff a lot, especially political. He always gets lots of replies. I was surprised and disappointed that only 2 people took the trouble to comment or share. If either of us had posted something happy, my husband especially would be inundated with likes, comments !!

Message of course demonstrates the danger of Facebook and I personally don’t like it. Only stay in it for any photos my daughters may put on, particularly if grandchildren.

But... feel it shows that people don’t want to know about something like ME. Either as it’s not pleasant or more concerning that it’s dismissed as an indulgent self obsessed , maybe even imagined condition!

Like the plumber who saw me laid out and said ... ME isn’t that’ guppy flu and laughed!!!!! 😖

3 Replies

Oops.... typo.. lack!! of interest !

Hi winter2013,

Please try not to be too disheartened that not many people commented. It’s easy to forget that many sufferers of ME might not have been well enough to respond and I’m sure that those well enough to read and digest your post will have been grateful and appreciative of your efforts.

I was particularly happy to read your post about adrenaline surges as it was a reminder to myself of what’s happening at those times when I’m feeling less unwell and times when I crash, and to not be too hard on myself.

I don’t know if you were able to see the recent debate in Parliament regarding the treatment of ME. Many MP’s spoke passionately on our behalf and even though I imagine it will be a slow process, I am glad that a movement towards the right to biomedical treatment now seems to be underway.

Wishing you all the best

in reply to Pamanda

Thank you Pamanda for your reply.

I didn’t see the debate in Parliament but heard about it. I gather the reviewed NICE guidelines aren’t available until 2020.

Re Facebook post. I didn’t expect sufferers of it to reply, it was for so called friends to try and understand how it feels. Not a heavy post but right fir Facebook. Was disappointed by hardly any response.

Am reading a book and in a case history , someone seems to have reconciled herself with the fact that if people don’t understand when you have told them, it’s as they are choosing not to listen.

I have several difficult chronic conditions including non cf Bronchiectasis and IBS but ME is the hardest to manage !!


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