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I voted never. When I wake up I don’t feel ok ish I feel rough. I have trouble with getting to sleep so everything is shifted to morning sleeping. If I wake up early it is equivalent to someone with a normal sleeping pattern waking up in the middle of the night. Currently due to post...

Just ugh

The glass nail files are better than emery boards I reckon

Yes if I am somewhere with no option to sit down eg on the side of a bath a very quick shower moving would be what I do. But that is far more exhausting than seated shower. I don’t have to lie down after a seated shower.

I’m moderate - my experience of showering is variable. When I’m at good for me sitting down showering is ok. I was able to get the shower set up to my needs when i refurbed my house so I have everything at the right height and enough space to manoeuvre. It is definitely the standing in one...

I read/skimmed - i really appreciate the thought behind this and I like his writing style Added: I noticed he mentioned how rewatching old films/tv is much easier cognitively & that’s something I definitely relate to. Reading something like this for newly diagnosed people would be far more...

I’ve had Pfizer every time including a few weeks ago Each time I’ve had the painful arm for 36 hours In fact this time it started feeling like I’d been thumped in the arm in the car park. Luckily the pharmacy was only a couple of miles from home and my car is automatic so i didn’t have gear...

And probably a good idea to check for threads on papers to see discussions eg the Wirth one you referenced @Dude

Frankincense - that’s a new one for the yoga and kale list of patronising have you tried suggestions

Yep same as Kitty

Yep seconded. When I didn’t know I had ME I pushed through at work for years using strong coffee and sugary snacks eventually I had to give up both due to the resulting insomnia

Hi @unicorn7 just to be clear i wasn’t implying you should be producing data. Responsibility and accountability lies with the promoters of any approach claiming to “treat” people to collect data showing how many people improve, deteriorate, drop out and use some objective measurement, using...

Cognitive remediation - another brick in the wall

Given this has been promoted for several years there has been plenty of time elapsed to gather data to provide evidence to show whether it works or not.

Also gradual onset and I’ve had/currently have a combination of physical and cognitive symptoms throughout even when I didn’t know I had ME. So from the three experiences of gradual onset I’d say we can’t draw any conclusions about gradual onset tending towards cognitive or physical symptoms.

Yes. Like me the vast majority in uk will have CFS or CFS/ME as the name used by the person who first officially gave a diagnosis. I agree ME/CFS is the least worst option for the reasons you’ve set out @Andy

Blatant red flag Chalder “fatigue scale”:rolleyes:

Confirming they have spent charity money doing the job of the NHS on monitoring what the clinics do and not moving the needle on the type of support available to people using these clinics. (Posted at same time as Mr Magoo)

I think that’s the register entry for the group as an official APPG

Very ironic about wearables :rolleyes: