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I hope someone can publicly ask an MEA representative why they are assisting a 'solution' for ME/CFS and Long Covid that categorises these conditions alongside 'Mental Health'* requiring a 'therapy-led'** approach. * as described by the app developers ** according to the MEA's Facebook post...

This one supposedly lets clinicians see your data so they can be prepared for appointments etc. And the data will also be used to rate the clinics on their outcomes. Which will be a good incentive for the clinicians only to recommend the app to patients who are mild/improving and keep...

This isn't NICE-compliant at all, is it? NICE guidelines say rest as required, no fixed incremental increases, only try increasing activity if and when you want to after a period of stability which could be weeks, months or more.

Hopefully people who try out this app can give feedback not only to the MEA but also leave reviews on the app store/Google play store.

Just seen via Mastodon that the Dysautonomia Project has an online conference tomorrow, called Dyscourse https://dyscourse.dysproject.org/series/dyscourse-tools-for-managing/landing_page?bmid=2cf6ad6720dc&bmid_type=member&bmid=2cf6ad6720dc (no idea if it will be any good but might be of...

Just had an exhausting but encouraging phone call with the GP leading the Long Covid service at GDoc (Gloucestershire's GP provider org). Encouraging because he talked knowledgeably about different areas of biomedical research, he sounded quite passionate about trying to find out more about the...

because they've been trained to think that that's how patients think?

The controls had also had Covid, though?

https://innovationlibrarynenc.org.uk/result/elaros-tracking-long-covid-app/ Under 'Plans for the Future / spread and adoption':

So the treatment group got not only exercise training but lots of personal contact with HCPs (and "behavioural support"); did the control group get anything to match that?

= no authorisation for school absence, and if your parents keep you off school when you're exhausted they get reported to social services.

from the conclusion: absolutely clueless

Successful de-escalations often involve giving one party a way to withdraw from their position without losing face. Maybe, as and when new evidence arrives, the BPS advocates will feel readier to cede some influence if they can say "oh yes, your 'neural hypervigilance' is what we were driving at...

More so looking at the numbers in the referenced paper (in which 'Long Covid' is defined as 'still experiencing respiratory symptoms and/or increased fatigue at least 28 days post diagnosis'): https://pmc.ncbi.nlm.nih.gov/articles/PMC8906430/ Edited to add: 40% of the participants had been...

Gamma Interferon Regulated Disorder of Excitatory Receptors Syndrome. To be treated by drinking Irn-Bru.

Binita Kane seems to sign up to an awful lot of unsubstantiated ideas, which is a problem since she's also a go-to quote source for various journalists. Contributes to the impression in some quarters that Long Covid is basically imaginary.

The insinuation is that both pwME and trans people are mentally deranged, and that those who recover/detransition and return to healthy normality then face being "silenced" by activists who supposedly want to prevent other sufferers from realising that recovery is possible.

This marketing line has been used a couple of times now by govt spokespeople, it's obviously the party line. I'm trying to compose an email to the Long Covid APPG group pointing out the correction in the BMJ about the results only being applicable to hospitalised patients. Hoping maybe some MP...

It's ridiculous. This paragraph in particular: How anyone can think these three sentences make sense together in any context, let alone in relation to the findings of this 'study'...

I don't think it even tells us that. I think it just tells us that using questionnaire scores as a primary outcome measure is a waste of everyone's time. Their only vaguely objective measure is the EEG, and that only showed significant changes in the sham group. LOL.