Understanding Chronic Fatigue Syndrome – Workshop with Dr Bruno Silva [North Staffordshire Combined Healthcare NHS Trust]

I know it's not Santhouse. The term "scrutineering group" is strange - most would say "NICE committee" if that's what they meant. Was there perhaps some kind of initial / scoping review with CG53 with a different group of people? Or maybe he means RCPsych's scrutineering group of the CG53 draft?

Tentative ID:

Spoiler

Dr Michael Jorsh, consultant liaison psychiatrist, North Staffordshire.

Published on ME/CFS: https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/pnp.109

https://www.bbc.co.uk/stoke/content/articles/2006/09/22/bipolar_disorder_dr_jorsh_feature.shtml
https://uk.linkedin.com/in/michael-jorsh-7521982b
Also this video (00:18:08)

 

Could well be.

I have looked at several parts of the video and it seems to show a reasonably intelligent group of professionals led by a speaker who says a lot of sensible things.

Maybe Dr Bruno Silva is someone we should keep an eye on as a potentially constructive ally.

 

At least partially undone by at least one unfortunate thing re: making sweeping declarations about infections like chronic Lyme, if @Utsikt's report is accurate.

I am always wary of ME/CFS allies who seem to fumble an understanding of similarly contested diseases. Of course, we need all the allies we can muster.

 

This just reminded. I read “something” on the internet about sleep apnoea. It said one of the signs can be “controlling” behaviour. It was clearly referring to men.

I thought that was interesting as it is traditionally a “male” problem (although it affects plenty of women)
If you are having un refreshing sleep because you’re hypoxic and you’re having difficulty keeping on top of everything in life and are a man, then it’s controlling.

If you are having un refreshing sleep because of ME, a traditionally female problem, you’re a perfectionist, trying to control things you can’t.

Maybe we’re all just tired and struggling and we want you to open the post, and put it away in the right place, so we don’t have to think about it.

 

He recommended pacing up at the end if the video. IMO, he got many things right, but missed the target on a few key points. Personality types, Lyme/EBV, period of stress before infection, and naming (only CFS and not ME/CFS).

Afaik, we don’t have conclusive evidence for personality types and stress at the onset. Besides, most people today are probably stressed before most infetctions, and most people don’t get ME/CFS.

That being said, he seems to respect the patients experiences. So he might be willing and able to understand the limits of the current evidence.

 

Yes, these prompted some eye-rolling. In particular, publicly allowing an association to personality type is so absurd and so flagrantly discriminatory that I hope he felt embarrassed afterwards.

But he's obviously thoughtful and respectful and he did get a lot right. In an exam I wouldn't pass him as quite ready yet for speaking about ME/CFS, but he's much closer than some of the self-appointed experts.


[Couple of small edit made for sense]

 

@Maat here you go

https://gofile.io/d/FkqqoN

 

https://twitter.com/user/status/1885401050233925714

 

Pretty amazing considering how ideologues have made similar false claims about the 2021 update. It's really literally all projection, uh? Enough to actually consider those stories about threats in a new light...

It sure would be great if some people could show some spine and publicly debunk those lies. In a direct way. I wonder what made this come out.

 

Oh brilliant, thanks @Adam pwme

 

He also talked about pacing up.

 

All these years and the NHS still can’t deliver a workshop that gives the name of the illness and the management strategy as set out by NICE.

And we’re pleased because it’s significantly better than expected.

 

I find this confusing too as Peter White wasn’t on any NICE 2007 committee that I am aware of. It would be interesting if he was on some less well-known or secret committee. I wondered could the person be mixing it up with the 2002 CMO committee that Peter White was on but the Canadian criteria only came out in 2003 (though possibly drafts might have been shared before that???).