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It's like deciding to use the term "movement preference" instead of "reflex" to describe what your leg does when someone taps your knee in the right spot. And then getting offended when people tell you you're creating a false impression.

But Walitt says (copied from the EEfRT thread in the Research forum): (my bold) I keep trying to understand what message they think they're conveying with the "effort preference" term, and why they don't seem to be worried by this constant switching between "it's involuntary, they're not...

so much money spent, only for them to have missed the point so badly.

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It's like the joke about someone asking directions and getting the reply "Well I wouldn't start from here."

I was told last week by the Long Covid service in Gloucestershire that they expect their funding to end and the service to close in spring 2025. After that, people with general post-Covid illness will be seen by their usual local GP, but those with fatigue may also be referred to "Pete...

And because patients do by and large have basic common sense, when they get given these lists of complicated impossible exercises they say 'yes, doctor, of course I'll follow this' because they don't have the energy to argue or they don't want to be seen as 'difficult' or having the wrong...

That graphic is a perfect example of the kind of thing that is written to make healthcare professionals feel better, not patients.

https://www.medscape.co.uk/viewarticle/can-brain-training-ease-mental-fog-long-covid-2024a10006zx

Call for evidence for the 'fit note reforms' is here https://www.gov.uk/government/calls-for-evidence/fit-note-reform-call-for-evidence/fit-note-reform-call-for-evidence We welcome all views, particularly from: employers healthcare professionals patients, carers and those who access fit...

Hi Dania, I'm too old to participate, but just wanted to comment on this: Taking breaks during a call doesn't help, in my experience - it just means the whole process takes even longer and gets even more complicated so you end up even more exhausted! Maybe consider supplying participants with...

Cerebra reported a few years ago on how often the parents of disabled children get accused of FII after they seek the support they're legally entitled to: https://cerebra.org.uk/download/institutionalising-parent-carer-blame/

My Fitbit thought I'd been for a swim when I'd been sitting on the floor folding laundry! Definitely room for something more sensitive. I wonder if a device could pick up changes in voice too. Or typing patterns!

(Wasn't sure which section to post this in, mods feel free to move!)

Just saw this via a post on Mastodon. https://www.hhs.gov/blog/2024/03/26/calling-innovators-hhs-long-covid-healthathon-launches-25k-prizes.html "Rigorous science takes time, yet people with Long COVID need help today. To address that need, the U.S. Department of Health and Human Services...

Funny how the more schools punish children who can't attend for whatever reason, and harass and criminalise their parents, the more school attendance continues to fall. Almost as if that's a really ineffective and counterproductive way of approaching the problem.

Wellness Recovery Action Plan seems to be specifically a mental health management thing: "Wellness Recovery Action Plan (WRAP) was created by Mary Ellen Copeland, an author, educator and mental health recovery advocate in the USA. [...] WRAP has five key principles: 1. Hope: people who...

So, lots of evidence of a range of impairments, but because one of the patterns differs from what we see in another disease, we'll say it's a sign of 'inconsistency', that magic word that keeps it firmly under the FND blanket.

It's so detached from reality. Oh no, a 400% increase in the waiting list for autism assessment since 2019, what could be causing it?! Well, talk to anyone who knows the state of day-to-day operations in underfunded and understaffed public services, and it's very clear why waiting lists have...

Perhaps these chaps could benefit from some CBT to help them address their fearful responses to the world changing around them.