Search results

It’s amazing seeing that FINE trial stuff and considering it alongside PACE. The MRC and DHSC fund that junk but won’t fund SequenceME.

Thanks @JellyBabyKid

Some more thoughts, apologies again for repetition of previous points made. The MEA funded the study, their employee and head of project development co-authored the paper, all recruitment was done through the MEA’s website and social media channels so biases participation and frames any...

Do we know what the response is from elsewhere in the community? I”m not on Facebook so can’t see if the MEA have posted about it there but I know there’s often discussion in the comments tomitems there. It looks like a revised version of the pre-print has been posted which responds to one of...

Yes, in this post

It’s an interesting way of looking at it, so I am deconditioned, because I’m severe, but I cannot recondition, because I’m severe. Then there are people, who are less severe and are not deconditioned, so don’t need to recondition. Maybe they think there’s some magical person that is half severe...

Yes, the BACME style clinics are obsessed with sleep management. Completely put of proportion or evidence. No amount of ‘sleep hygiene’ or ‘sleep management’ fixes the sleep problems caused by PEM or a crash (which they conflate but many of us distinguish). The more I look at their way of...

It was disappointing to see so much hard work wasted in those discussions and to have good faith feedback rejected in the way it was. I’m just surprised they haven’t even mentioned one of the more modern and well known and regarded questionnaires in the field. It seems a striking omission.

Catching up with posts I think mine is the same! So apologies everyone. It seems like a real missed opportunity and it’s been disappointing to see how feedback on these various projects was handled. The results do not look promising and yet are being presented as if they are something new...

Agree, it seems ironic when they’ve highlighted the “use of medical jargon and American English that was difficult to understand” as one of the problems with existing questionnaires. They don’t seem to have considered that producing another questionnaire with lots of jargon to support it would...

This is now on AfME’s webpage too https://www.actionforme.org.uk/sequence-me-long-covid-launches/

Makes sense! Probably me misreading it or just misunderstanding this morning. I hope they do something for those who can’t or choose not too so the report isn’t biased to app users and advocates.

Great news people have found a way to go ahead but it sounds like there’s a long way to go and this could’ve been a lot quicker if the UK Government had funded it. Hopefully it’s not too late for them to get involved.

Thanks @Trish Although you need to sign in with a google account the survey says your email and google account info are not part of your response and not shared. There is a separate section to enter an email but this is optional. A shame all this info isn’t available before signing in but...

While I don’t see apps as what we primarily need I actually prefer screens and apps if they’re structured right because I can do things as and when I am able. I struggle more with realtime communication. But others vary. And I fear this survey won’t capture that variation. You also seem to have...

Absolutely.

I’d like to think we can make that argument about it being not effective and not cost effective to those in charge of commissioning. One problem is, when there are so many calling for support, there is pressure to deliver support, so if they can spend a relatively small amount of money to tick...

To be fair, that’s very common in medicine and I expect because it is largely right. Most doctors do know more about their patients bodies than a patient’s ‘lived experience’. That is why we go to doctors, why we go to experts of any sort. Which works fine nor slly but obviously not when things...

I”ve just realised why a feedback loop between innate and adaptive immune systems involving macrophages sounded familiar…

Thanks for the context @hibiscuswahine it’s a useful perspective. I wish it were going to be such a session with useful reflection, but from everything we’ve seen that seems unlikely. The organisation has sadly never shown willing to engage despite many genuine attempts from people. At an...