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I agree, the first step needs to be finding out how photo editors search for and use pix. I think we can produce all the great photos we want but if photo editors won't encounter them via the way they normally search, or those photos aren't what they need, those photos will have no effect. I...

This GAM is exactly GET. When I was instructed in GET at an NHS ME/CFS centre, I was told to first establish such a baseline and then grade up.

Isn't apheresis a treatment that you have to have repeatedly?

I think that's all pretty reasonable, TBH, @JemPD! Thus far I've been hiding in other rooms for emergency visitors (plus with all the windows open, plus masks for everybody), or even leaving the flat entirely if someone has to be in all the rooms and there's nowhere for me to hide (as when the...

Thanks, JemPD - actually, having now looked at reviews and info, I've decided against this type of topper for exactly those reasons! Back to square one. I'd like a latex topper but I don't see how I can get one - and I'd like to try one first but am still shielding from the coronavirus. I feel...

Thanks, @Joel, that's really helpful. I think I might maybe get a goose/duck down topper, just because I think I can get it up the stairs. It might not last as long as a latex one but it's a question of what's possible!

Thanks, @Wonko - I use flat sheets, and with my existing topper, they're not quite big enough.

@Joel, would you say the latex topper is as soft as a memory foam one? I'm wondering whether to go for a 2" or 3" latex mattress for softness but the latter will obviously be more expensive. And heavier! I'm worried that a topper will be too heavy for me to get up the stairs.

Just want to thank everyone for their great contributions so far! I'm wondering if repeated waking due to this problem is contributing to my unrefreshing sleep so this is an important thread for me. :)

Thanks, @Andy - great recommendation! Sorry to hear about your struggles with body temp, @JemPD. I've had periods of my illness where my temperature control has gone out of whack, including in daytime, but it has stablised in recent years and I'm pretty sure this is a mattress-topper issue...

I have a foam mattress topper and keep waking up in the night too hot, throwing quilts off, and then waking up too cold later, and on and on. Does anyone have experience with non-foam ones? Recommendations?

I've seen Goadsby on TV talking about the awful sexism that has led to the neglect of migraines. Very impressive.

What certification should I be looking for, for a mask bought in the UK? I had a look on Amazon and some are 'CE' and others have some other kind of European certification.

Where should people look for these? Amazon, etc.?

I rarely go out and seem to have ended up with a bunch of useless masks. I'd like better ones. I gather that cotton ones, even with a tissue layer, aren't much good; I've bought some that are supposed to be better, but they don't fit, so presumably are 100% useless for self-protection. What are...

But @Andy quotes this: Restricting the survey to people still doing HRM seems to be against the intended aim of the survey.

But I think the question of why it doesn't suit everyone is really important, if this is an important intervention. There may be solvable problems.

Thanks, Daisy! @PhysiosforME - If you want people like me, who've stopped HRM, to fill in the questionnaire then I think you'll need to edit the front end to say so. I would have given up if not for Daisy's comment, because the questions are so clearly phrased to relate to current use and the...

@PhysiosforME - I'm confused! The intro says, 'The University of Leicester (UK) would like to survey the experiences of people with ME/CFS who are Pacing using a Heart Monitor.' So is this only for people who are currently using a monitor? I've used one many years ago but don't know if I should...

I would be hugely cautious about using a photo from a 'free' site. If someone has uploaded a photo of someone without consent, that person could sue you - especially if you've portrayed them as suffering from a stigmatised disease such as ME. And the same limitations about depiction of illness...