Search results

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.

It's ironic that this trial is about "personalised" interventions but all the participants get the same advice, while a genuinely personalised offer of help would look at individual things that might make a serious difference to someone's health and QoL, like 'do you need care support or home...

yes, good point. Especially in a world where politicians answer questions about rising rates of long-term ill health with "clearly their benefits are too generous."

If they genuinely wanted to assess the effectiveness of things like this for people with multiple long-term conditions, they'd be looking at outcomes over years, not months. "But but but we can't do that because there are too many variables and we'd have to commit too many resources and we...

Maybe it's the brain fog, but I can't see anything at all in the article that justifies the headline.

exactly! - and even these sick people were capable of repeatedly doing enough tiring physical exercise to be included in the study, while other Long Covid patients can't even leave their beds. Yet these researchers think they've "comprehensively investigate[d] the physiologic mechanisms...

This sort of mess just emphasises how utterly pointless it is to go on treating everyone who comes under the umbrella of Long Covid as if they had the same needs and conditions. Ridiculous categorical pronouncements that mean absolutely nothing to individuals in practice.

But there are NHS neurologists right now trying to put a FND diagnosis on patients who present with brain fog and fatigue, without any of the signs you list (I've encountered one myself within the past six months and heard of others). So either they do think it's appropriate, or they're just...

Cambridge and Peterborough LC clinic: according to this, 53% of their patients present with "Functional illness", 9% with FND and 4% with ME. Using a "mind-body approach"...

Tiny sample size, no control group, Fukuda criteria, and what look like very outdated references on the background of CFS, efficacy or otherwise of CBT and so on.

If the authors' aim is for HCPs to be clearer about the diagnostic criteria for FND and thus more confident in communicating that diagnosis to patients, the logical outcome would be that they make that diagnosis less often, because they'll only be making it in cases that are unambiguous (where...

It really is. There is so much we could be finding out, right now, if the official attitude didn't boil down to "go away, calm down and wait for it to blow over".