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Just discovered that topics only trend if there is a huge spike, not a gradual increase of its use. People including me, not realising this, have been retweeting useful posts outside the hour which include the hashtag so must have added to increased use. Been trying to think how best to...

Thanks @Kitty good advice. I have passed it on.

Somone severely affected for many years was asking if worth going to Broadgreen cfs clinic. Has anyone up to date info of what it is like as obviously trip likely to cause a crash for someone severe?

I think ortostatic intolerance can muddy the waters here as standing, reaching up is far worse than moving about.

I was able to go to my only accessible friends' coffee morning today - she keeps a sunlounger there for me and about 20 paces to walk from car otherwise too hilly or too far to walk. I went armed with comic strips and awareness leaflets just in case, and there were four people there I only...

Do you get PEM from social interaction, cognitive or emotional activity too or just physical?

Whenever I speak to a different Gp (never about ME) if poss I ask what they know about ME and tell them about the probs with GET and NICE being revised now and if they visit I give them at least one Lauras comic strip and ME awareness leaflet and asked last one if he could take more and he did...

Mine (uk) do home visits if need to examine me eg recently for suspicious mole (not for ME) but do phone consultations otherwise.

I found an old youtube link I had saved to the beautiful completed version of A song for ME, Blowing in the wind, as thought it would be worth circulating again but couldn't find a link to it anywhere. would be good to have a link here with all the other songs - or maybe a thread with just...

I support your letter too, @Trish - well done.

So do I but I am able to get on it when on bottom step not floor and same at top. Wd have to think again if became unable to do it.

The stairlift chap advised me that if I was planning to get a new carpet, to do so before the stairlift. Then I realised that best to paint the walls before the new carpet. Then realised new storage heaters are smaller than old ones so best get that before the walls done! Aaaargh Had planned...

Anyone know who awarded the prize? Just wondering if he was a trustee of the group who set it up, remembering the Maddox prize ...

I got a stairlift 8 years after I was mainly bedbound and needed one, as had asked one company how long to go up my stairs as can only sit upright about a minute or less and he said (wrongly) it wd take a minute and a half. I also envisaged sitting bolt upright with feet down. However thankfully...

I am severe as cant sit upright or stand still but still able to nip to the loo, to microwave to heat drink, (then come back to bed, rest, then retrieve drink) and to armchair with feet up by PC though cant stay there for long as less comfy than bed. Before I got mini iPad I moved the few steps...

I felt guilty, my first 2-3 years ill, donating to ME research and asking friends and family to do the same as it seemed selfish, like asking for myself, then as I learned more about it, I thought of all the youngsters with it facing decades of suffering and now point this out when I ask for...

Thanks Tom :-) I will wait till then and check before forwarding it to non pwme

@Tom Kindlon I can only see the two short nominator comments - no profile by you anywhere. Tried all of them. Is it just me?

When first ill and not yet severe I couldn't understand why some days I felt fine next day after hour at local shops, others crashed. Much later realised that the triggers were when I met a friend and stood still chatting. It was standing too long, then finally sitting upright too long at...

Can anyone translate it into other languages on twitter to spread the word?