Our experiences sound very similar Mithriel I dont call those 'immune symptoms' a flare, because they are not present at baseline when i well...
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...
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...
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,...
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'....
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...
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...
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...
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...
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...
Thats an absolutely spot on description of my experience but i couldnt have described it so succinctly. thanks you :) Exactly. Its being ill,...
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...
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...
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...
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...
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...
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