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I’m not a scientist but I’m learning. Not sure where the blame lies here, but the headline on this story made me feel something was off, hence I posted here. So, dysautonomia is usually an umbrella term for some kind of issue with the autonomic nervous system (Google tells me) occurs in a...

https://meassociation.org.uk/2024/06/me-association-professor-manoj-sivan-to-develop-new-protocol-for-dysautonomia-in-me-cfs-and-long- sorry Dont know how to copy the text

Side issue, but someone doing “something” about all the things you can’t control would be good. And I probably mean a journalist, maybe some research? On this false standard that we can rest and pace as if we live in a sealed box. My cat can do this, because I’m his owner and I supply all his...

There was a negative incident fairly recently with Sarah Tyson ! She’s undertaking research funded by the ME Association and has ME herself. She called us all catastrophising hystericals and said no wonder nobody wants to work with ME (paraphrasing).

Visible doesn’t include sleep data, it asks you whether your sleep was ok/fair/poor/awful. They don’t estimate capacity, they give a rating each morning based on how stable your HRV etc is. I actually don’t care what my morning score on Visible is, I find that I can be overcome with fatigue out...

They are more reliable than a 90 question survey asking you to recall activity in the past month

In Ean’s MEpedia page there’s a good, sourced overview of S Wessely. Including M Williams. I agree the researcher doesn’t need to be “told” of his involvement, they can read more about it if that’s what they’re interested in doing.

Seriously, well done and I hope it’s a useful conversation.

Ok please remember not to threaten their lives, you know how pwME are terrifying and abusive/s

WOW excellent update! Hooray!

He still lives on the Isle of Man and works in IT, and photography. I don’t recall where I saw this, sorry. He fully recovered and I think he gets a fair amount of requests which he doesn’t take up. He’s easy to find on LinkedIn etc https://me-pedia.org/wiki/Ean_Proctor

I would firstly reply to the researcher and ask her what is she looking for specifically? As there are several angles -abuse of children and young people (there are current active cases) and the risk of parents being accused of Facetious Disorder, the risk of children being removed from their...

I can see it being apple or discovery+ maybe. Sky is kind of a streamer now too.

I wonder which channel commissioned this/they’re trying to sell to? BBC already got burned with the ear seeds backlash C4 surely has enough disability awareness given their output C5, ITV or Sky on the other hand…

Imagine the intersection of being fatigued by a very visible illness, and being marginalised because you’re black. Studies have shown institutional racism towards black women in maternity services - dismissing pain, less likely to be given timely pain relief or medical intervention. Higher rate...

Excellent email @PhysiosforME thank you

He was seen running and exercising a lot three months after his Covid, so I guess he felt great sometimes.

Just realised, I thought I saw him the other week when I was out. I wasn’t sure as it looked like him but much older. It was in fact him (it’s a small place, the only surprising thing was that I was out) Paul, if you read this, no need to worry, I’m mainly housebound and wouldn’t bother with you...

must have been the next result on the Google search after dyspraxia

It’s much better to have a dissociative seizure alone at home, than in a workplace where others can summon medical attention. Obviously. And given that you can delay seizures using techniques (including CBT to help you reframe them as “not that bad”) basically anyone having one at work is a lazy...