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Our experiences sound very similar Mithriel I dont call those 'immune symptoms' a flare, because they are not present at baseline when i well rested, they come post exertion. I have other symptoms that i get that sometimes flare up even when i well rested those i call a flare, although tbh i...

Its while since i read this thread, wasnt well enough to comment at the time & not up to reading it all again now but i wanted to say that for many yrs i been wishing researchers would look into what happens in the bodies of PwME when the sympathetic nervous system is activated, because for me...

It seems quite worrying to me. I worry that very few people with PEM as part of their ME, (except those at the very mildest end who are very easy to misdiagnose) will be able to sign up for this. I mean ok they might want to be sure to trigger PEM, but those who cant do the 25mins wont sign up...

Hi Mike & welcome :) I cant offer any kind of insight, but FWIW i also am often confused and disappointed about research that sounds good to me, but which when you get a more knowledgeable critique isnt nearly as exciting as it sounds! Its a bummer that the quality of the research is often so...

yes, i mean what are they doing anyway?

I do like the highlighting of social care/adaptations in the document. Although i wish it said 'Access to social care support & aids/adaptations'. Rather than simply social care, as in 20 yrs i only ever met one HCP who thought anyone with ME needed them!

Oh goodness yes, it worries me that DwME would be recommended i mean some of them are marvellous & the CPD module from Nina Muirhead is great i think, but yikes some of it, the bits Jonathan referred to, & especially the communications stuff banging on & on with their favourite term...

I like the examples of good practice in the document, but like @Nightsong i worry about who these 'experts' might be. It'l be likely disastrous if those who argued so vociferously against the GL changes were the ones given the task of implementing them!

completely agree

Just a thought... perhaps young people are more used to video culture, but while i would be happy to speak and give an audio recording, i would never want to release a video of me sharing personal things... not enough control as to what happens to it afterwards. I mean of course you know you...

Wouldnt it be marvellous if PEM was feeling 'ill at ease'!!!!!!!!!!!!!!!!

my bolding. Eww. Lets hope that's a tranlation issue, but 'directed at' in english is quite aggressive. Which seems in keeping with the point preceding it :(:emoji_angry:

I wonder if there is a link to something other than an unreadable photograph? That looks very useful. Also, whats with the cucumber hanging over that woman's head? :D

Thats an absolutely spot on description of my experience but i couldnt have described it so succinctly. thanks you :) Exactly. Its being ill, and the sensation is unmistakable, it's not interchangeable with fatigue/lack of sleep, its specific and it worries me greatly when i read Jason's...

wow, i never heard the like. ISTM that is breathtakingly rare. think i might cry if a gp said that to me. (with relief)

Just to clarify in case it got missed - i can only get about an inch underneath without lifting the mattress - so fine for a fitted sheet, but not for a flat one. In terms of my divan, it was bought a lot of yrs ago. Divans are usually the cheapest option when buying new, but you do have to...

good point. @Leila this may be the difference - i have never had a bed that wasnt a divan - so the mattress sits on top of it, so the corners of with the mattress & about an inch underneath are completely accessible.

what are they made pf Wits End? i not experienced this but then i only wash at 30/40deg. I have a couple of cotton ones & one 'cool comfort' which is cotton + tencel.

Its such a hard question @strategist for us all. I totally empathise with the dilemma. I gave up a long time ago but it was more because the NHS has me so utterly entrenched in a somatisation/functional pigeonhole that its pointless trying to pursue it. But i still quite often fantasise that...

Do you have to lift your mattress to get them on? I just slide it over & shove it under with my hands from either side - so standing with the corner facing me i just hold it by the bottom elasticated corner & pull it under then shove in under at the sides slightly. Just sort of help it where it...