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This. To me, everything now has to focus on being forward looking, what's next? how do we make that happen? - Ok, I'll let them have 30 seconds on the outcome of Decode :) We've gone from a community where 'Decode is coming' to 'Decode is done', and there's nothing much else happening - my...

It's also annoying that the vaccines aren't available year round. As I found when my last booster had run out (based on a 6 month time that I assumed was what was required) I went to book and, sorry, they had ended as of that day, in June as I recall. So, despite Covid not going away, year...

SMC with their 'expert reaction', they were quick off the mark. https://www.sciencemediacentre.org/expert-reaction-to-unpublished-preprint-on-the-decodeme-genome-wide-association-study-of-me-cfs/

https://www.decodeme.org.uk/x-marks-the-spot/

https://www.bbc.co.uk/iplayer/live/bbcscotland

Apparently Chris Ponting is on BBC Scotland at 1900 to discuss the Decode results.

When I did the armband, it was a) a pain in the bum because the battery didn’t last more than a day and b) needed me to think a lot about the alert thresholds because my HR is too high just existing and was bouncing off the rev limiter just being sat on the sofa, let alone walking my sorry...

Funny, I was thinking about it earlier today and decided to stop for the same reasons. I’ve just routinely been doing the free app thing but honestly, the patterns are things I am already aware of, have other data being gathered from my Apple Watch and I’m not currently changing anything in my...

This. I did over 20,000 words (over the course of a couple of months) for my PIP submission, explaining in minute detail the impact, what I can't do etc. plus a wodge of evidence. I set out to give them no way to suggest anything other than what I experience.

Thankfully I missed all this on Twitter (blocked him long ago, but never engaged with him so didn't get blocked by him) and catching up here. It's telling that he gets so few likes for these posts, which suggests most of his actual, irl, (co)believers aren't there. So, why keep going out of his...

Sounds very Trumpian

I keep getting ads from within the Patient Access app/service that my GP surgery uses, linked to the UK NHS records, for Hilo (previously called Aktiia - that they describe as a 'trusted partner') which is a wearable BP monitor. It's not cheap at £210, but links to an app etc. Have been tempted...

Interestingly, the pattern you note about a spike before the crash is something a Dr mentioned to me as something she had started to observe in the pre-PEM/PEM phases of people with ME and LC. Not sure what the answer is, but, I see it too to an extent - trouble for me is I just seem to be in...

We could probably count them on 2 or 3 fingers

Suggest Paul Garner should read this, apologise to pwME & LC.

It speaks volumes that they've not taken the opportunity to ask why many of us are no longer members, or never were. The questionnaire just stops if you say you aren't a member - it could have had a different set of questions, but, no, we're the MEA, we don't want to hear from those who don't...

So, we head into May with some orgs/individuals doing an awareness day, some a week and others a month. It’s a mess as usual. I just wish things could be consistent, even just in the UK with a day (ofc the MEA are outside the tent on this as usual, I think). People with ME can’t keep up some...

I keep toying with additional wearables to supplement the stuff I get from my Apple Watch and morning finger reading on Visible (the arm band thing was too annoying needing charging daily - I know they have a new one now). I like the idea of an unobtrusive thing like a ring rather than arm band...

This is another excellent post from them. They seem to have a knack of getting really impactful writers and subjects. This one really hits home for me, so often I'm put on the spot and can't do justice to how god awful this illness is and then I'll be lying awake at 2am rehashing what I would...

For me, it's when I'm utterly exhausted but my body and mind are buzzing, tingling, restless, can't settle. It's not necessarily just about when am trying to sleep, just any time I need to rest and my body has other ideas. I've heard some describe it like being in a car with your foot on the...