Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024

It makes them look paranoid

 

Can’t wait to see the video when it’s released in a few days

 

That's interesting that the Octopus trial is at 14.25

Its something that cropped up on my social media a while ago, is for MS, and is basically from what I can see a way of speeding up testing of multiple treatments. The following page summarises it best: Octopus | MS Society

It seems to be funded by MS Society.

There is also a page about it on the MS trust: Octopus trial for progressive MS | MS Trust

And what looks like the 'official' page (combined logos including MRC funding council, UCL and MS Society): Home | Octopus Trial (ucl.ac.uk)

 

Good bit of priming there from Sarah Tyson....

but confusing given I thought she was the one who became abusive / name-calling as a bit of a distraction from the questions she I guess didn't want to have noticed or asked about her research ?

Is that not classic DARVO (also a form of abuse?) to be the person who 'did it', then decided not to apologise, and then tries to prime every person who doesn't know what she did/happened to think maybe the opposite happened?

I hope the full event is being filmed from start to end for the official record, just in case claims are made that are incorrect.

 

As long as it works both ways hey.

Can someone get word to Monica that abuse / abusive particularly does, and always have for any laypersons included suggesting to those who might be that way inclined that 'hysterical woman' accusations and words specifically including and 'in the spirit of': catastrophising, hysterical, hysterical projection, projection, conspiracy theory/theories . And are particularly and deliberately hurtful to those with ME who have had a tyranny of that harming their health, it turns out, based on others false beliefs that weren't justified.

Oh and when the name-caller has no background whatsoever in any form of psych to make any assessment to use those terms other than as laypersons insults. I doubt a trained psychologist worth their salt would use them. They aren't really technical terms in that form.

And that should specifically include inaccurately suggesting someone's perfectly fair questions might be 'mere' hysterical projection, catastrophising, conspiracy theories, overt hostility and insults


So if that is what it is about then it would be a fair point.

But they've ironically put Sarah as chair, so ...

 

It'd be hilarious if someone asked whether "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults" counted as abusive language.

 

Tempting, but probably not productive...

 

Trojan might be the word.

 

I thought she’d said here PROMS was NOT to be used for clinical trials

I guess if she found FUNCAP difficult to fill in, she’s speaking on badly of the ME community now?

 

I have huge respect for Caroline. She just talks sense and never oversteps her evidence base.

I couldn't muster the energy to listen to the rest.

 

I actually thought there was a recent paper showing that wearables worked fine in showing that people with ME/CFS do much less.

 

Yip, brief look online years ago indicated that the (much poorer/early) wearable were better at assessing activity versus subjective "user reported" - how can we be having this debate (Sarah Tyson)?

 

It’s just an excuse. They’re doing the thing they want to do. They want to do PROMS with paper questionnaires they way they want to, that’s all.