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I wonder if there would be any chance of getting a sympathetic MP to ask a question challenging the use of the unevidenced BACME model in clinics. I'm sure it would only be met with the usual waffle, but it would at least make the point that BACME neither serves patients nor represents us. Which...

It would be slightly better if MPs asked specific questions based on facts instead of these open-ended questions about "what is the government doing to support...", which invite and enable the ministers to give meaningless waffle answers. For example, the meaningless waffle of "The...

Wow.

"Improvements in app usability" is a secondary outcome? That makes even less sense than all the rest of it.

whereas this study found increased GFAP https://www.s4me.info/threads/blood%E2%80%93brain-barrier-disruption-and-sustained-systemic-inflammation-in-individuals-with-long-covid-associated-cognitive-impairment-2024-greene-et-al.31731/

Talk of 'feelings' where there should be facts is always such a big red flag.

He doesn't understand predictive processing theory, but that won't stop him using it to try and sound impressive and hawk his therapy business.

And if it fixed Long Covid ME/CFS, we'd know about it by now too, because when you get referred to a LC clinic it's the first thing they instruct you to do. Those clinics were set up on the early assumption that most of the "lingering" issues from Covid-19 would be respiratory.

IIRC this is the theoretical basis of the Perrin Technique? (which only seems to work in trials conducted by R. Perrin)

Betteridge's Law usually covers this sort of claim. https://en.wikipedia.org/wiki/Betteridge%27s_law_of_headlines

Same.

So what they've actually found is that individualized, multidisciplinary outpatient rehabilitation including strength/endurance training, physiotherapy, psychological support, and nutritional counseling is not effective in improving fatigue or health-related quality of life in post-Covid...

Same author and same number of participants as this paper, which likewise makes several extremely unlikely claims. Frankly none of it passes the sniff test...

I'm particularly disappointed to see Altmann on there as I'd previously got the impression he had an understanding of the seriousness of the problem. And now his name's on this piffle about tai chi and clove buds.

Delusional.

Yes, they need a cohort of people who don't know whether or not they are ill (possibly because they're in a coma). [edit: I don't know whether it's obvious that this is not a serious suggestion!]

Absolutely infuriating that they can get away with this.

Hope that goes well for you all - it just should not have to be this way.

It really is. Me too! (It really shows what nonsense it is that there's this supposed epidemic of people supposedly being "written off" and showered with disability benefits the second they get a diagnosis of something neurodivergent.) [edited to clarify, because I expressed that very badly...

Earlier this year I requested 'mandatory reconsideration' of a PIP decision which claimed I had no difficulty communicating or mixing with other people, when in fact those are some of the things I find most difficult due to cognitive impairments; I rely on my husband to do a huge amount of...