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I was able to skim a little bit the part in this thread about directness/indirectness in PACE. I have often struggled to grasp why the fact that PEM wasnt req'd isnt a key issue, so have been really grateful to @Jonathan Edwards & @Utsikt & others for discussing it here. The RA/pain killers...

I'm sorry I'm not able to keep up and am now woefully out of step with this thread & the situation as a whole, to be honest I am so fuzzy i just cant process most of it my brain is unable to take it in. But a couple things i wanted to pick up on I think this is exactly right except for the line...

Just to clarify, i was meaning asking about activity in regard to a question for the German researcher to ask, rather than in studies in general. I wasnt thinking about incorporating it into a study design.

I'm not up to coralling my thoughts right now, & struggling to take in a lot of the suggestions, my brain is too blurry. but I like @Ravn's mention of activity. This question brings to mind your recent poll @forestglip where I seem to remmebr others having same experience as me where worst...

1000 times THIS. If they dont know what PEM is then couldnt they ask & be answered with info, or tick 'not sure'?

I dont know how to vote, sometimes its sleep much much later wired & awake till 8am or so when i eventally drop off, sometimes its drop off at (eg) 4 but only for a couple of hours. The more i over exert the worse it is - so if i done a little over i will sleep later, if alot i wont sleep at...

I'd love to know what the heck causes that, comes without fail for me. yes this is exactly my experience too.

Yes goodness i hope you avoid that one! It could, & likely would, be highly misleading. In the UK certainly, you run serious risk of it being interpreted to mean you are someone who has become unravelled as a person, by ME/CFS. like 'ME/CFS has unravelled me' - ie you've 'gone to pieces' due...

Oh my goodness, I'm late to this news, but what a blow. Thanks to anyone trying to do something about it. Feels like a proper kick in the teeth, & a sneaky one at that.

Did anyone ever find this paper without the paywall?

[erfect analogy

thanks Obeat lol i have dozens of pairs, as i lose them in my own bed & have to wear every night! Wash them a couple dozen at a time!

Only able to read the first page of this thread This is imho why the amounts raised are low. I think not wanting to hand over your DNA was a big part of the 'relatively' low numbers, i saw loads of suspiscion & fear about that (privacy etc) on social media, in fact i had to repeatedly counter...

Just bumping this up, wondering if anyone had any more experience with it?

I may need surgery in the semi-near future, would you mind if i copied your post to a word doc to use as a template for myself? Sorry you had such a crap time & well done for sorting this out for yourself it seems really good

oh for sure! yeah i just eat everything out of the original packaging (except apples/bananas) so i just wipe the bag. A large loaf i wipe the bag, remove half & freeze it, eat directly out of the other half. All my food is ready prepared as i cant do anything for myself. Ready meals, ready...

I'm bummed that I cant be part of this, i'd like to be. But I have 3 big hospital appointments & some major work that needs doing on my house which will should take me out of circulation until around May (shouldnt be here at all really just couldnt stay away) so I'm unable to commit. However I...

yes b6 also seems an oft combined add on to a lot of things but you only see it when you check the small print ingredients eg 5HTP often has it added, also magnesium.

I agree, it's crappy, but i care more about getting the best outcome possible. yes good

yes its interesting, research found the covid coronavirus living after 28days on a surface in a household fridge! 48hrs on absorbant cardboard. But who knows what the real world situation is. People think i'm nutty getting items wiped, but i been doing it since looong before the pandemic...