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[Principal Skinner meme] "Could our evidence be so low-quality? No, it's the patients who are wrong."

and "ask your GP" is such a pointless thing to be told by an app when anyone using the app will already have seen their GP. And so patients go round and round in the system on the promise that someone somewhere will have "specialist support" for them (while HCPs complain about patients seeking...

If they're going to start promoting brain retraining, are they going to do the same for all the other unevidenced treatments backed by enthusiastic anecdotes? Why would you lower your standards for one but not others?

Four of the authors are also authors of this study, which found CBT had no effect on whether people developed chronic pain, but the authors claimed efficacy and success anyway...

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.