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It’s ok that’s exactly what Visible does. And I’ve opted in to share my data with a Mount Sinai study led by David Putrino. Tech, eh?

This ties in with something I’ve been trying to put my finger on. I feel like Maeve’s inquest has generated a lot of decent reporting about ME, but there is a disconnect when Sarah Boothby or Sean O’Neill or others are speaking to the press. They will assert that pwME face disbelief, that it’s...

That far back? I think it needs to be no more than 2019/ last 5 years

So the data we need exists? For England?

But we need to know by ICB area for the strategy I outlined, to work.

This is the sort of campaign I’d like to see #thereforME lead

But it could be a starting point to argue that ICB’s need to commission services? Essentially we need some sort of headcount of pwME in the ICB area rather than in all of UK or England (14 Health board in Scotland and 7 in Wales, not sure NI)

It could be done again, or this information used as a starting point. If there are over 100 NHS trusts they could be mapped. Those trusts sit under an ICB? Then you tell the ICB how many people are recorded as having ME in their area. Maybe add to it pwME who wouldn’t necessarily be in those...

So we could find out “how many people have ME” of sorts. The NHS has a number of “fatigue clinics” which “diagnose ME” all someone needs to do is a Freedom of Information request as to how many patients were diagnosed since 2019 in each clinic. No, it’s not going to give a true picture as...

We won’t get that either

I use the Visible band so it was easy to see that when I was sitting or standing, my HR was higher than lying down. It’s not necessarily “high”.

My heart rate increases with sitting or standing, so I’ve set my Fitbit to record the amount of time spent above “x” heart rate. It’s not perfect but it is useful to see the variation over days doing stuff/doinglittle.

Well humour is subjective. Like a lot of research these days…

Ah, I think citizen science, free online education and the like has overtaken.

I don’t understand?

Of course this will get a lukewarm reception here, this is primarily a science forum and it is one personal anecdote. It’s nice that it helped one person but it’s not scientific. It’s interesting, it’s worthy of some debate which, is always rigorous here.

I use glycerine a lot.

her full twitter statement is more helpful Ithink

If there’s one thing I’ve learned since joining here, it’s to beware of any black/white statements on what ME is or what causes it. Possible rhetorical question, why are there so many qualified Drs who are confident to say “it’s this” when the research is kind of sketchy? I’m not a scientist...

The defence to that was that she needed to start with the NG tube and go through a sort of process of elimination, because that’s the guidelines if you can eat. When she finally got the NG tube it didn’t work plus made her ME crash. Then she was too ill to try anything else and the “risk” was...