Search results

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...

I suppose they’re being relentlessly harassed and threatened now….

Here is a screenshot of a cartoon in the replies. It includes the F word

Aha, yes the “in the chat” comments were referred to towards the end of Tyson’s talk- after she has extensively derided them. The people in the chat seemed to be wholeheartedly in agreement. Luckily there didn’t appear to be any abuse in the comments either. Good job they warned everyone ahead...

The issues with wearables seems to be that because they’re all different in how they measure, and she doesn’t know the “under the hood” calculations they use etc, they’re not reliable and -this is key- therefore those results wouldn’t be fit to use as clinical trial data. Generating a data set...

a lot of comments in the chat about wearables being incredibly unreliable and not recording

I’ve accessed and downloaded the closed caps document. Here are photos of Tysons talk I only skimmed it the PROMS data can be used for clinical research Attendees were commenting how unreliable they find wearables

We need an anti-coach to train us not to do so much “Come on, keep going, keep lying down! Don’t look at the state of the place, do not think you can “just tidy round a bit” only losers tidy up!!!!”

That may be lost in translation!

I know what I was trying to think of, but couldn’t. Emotional Labour? Mental load? Mental load is usually described as the unseen/behind the scenes work a family member does (usually female) to run the family, but it’s similar to us managing our health on our own - anticipating needs -...

I am 100% there mouthing “where’s me danger pointer” and doing a trigger finger

Yes it would! I would hope the producers are aware of the guidance, but then again I can think of some ME clinics/physios who would happily “oversee” such “heroic” efforts. Assuming a pwME did hypothetically train and want to also enter the Paralympics, which category would they come under...