UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

[FMMM1]

What is the purpose of such a statement? Are there usually materials like this published?

I'm not sure - I have no direct experience.

However, it may be:

• a way to generate useful views from constructive elements/participants re translating the guideline into practice;
• a useful way to moderate the behaviours of the destructors (weirdly the medical professional bodies) - let them have another opportunity to complain and thus calm everything down a bit.

 

[Midnattsol]

A new thread has been made for discussing the published draft implementation statement:
Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

 

[Andy]

The Norwegian ME Association is organising a webinar with prof. Brian Hughes on the NICE guidelines. Anyone can register on zoom for free and I assume most of this will be in English. It takes place 10th March 2022, 14.00 (local time). They've announced on Facebook that the webinar will be recorded and uploaded afterwards.

https://us02web.zoom.us/webinar/reg...EBEKxMo5u42qHuj91fbzOBYrj_souFFZPkv9F31w6jsUA

Video is now available

https://youtu.be/D8ayxBSsk_M

This webinar now has its own thread:
2022 Brian Hughes on the NICE Guideline and what it means for care of people with ME/CFS

 

[Hutan]

We've created a new thread for Brian Hughes webinar in Resources for Health Professionals so that it can be more easily found for advocacy. A number of posts about it have been moved to the new thread.
2022 Brian Hughes on the NICE Guideline and what it means for care of people with ME/CFS

 

[Ravn]

Does anyone know of a concise summary of the whole loooong NICE guideline saga?
A little history and context, plus the key changes.
Similar to Brian Hughes' excellent video posted above but in written form?

 

[Hutan]

I think @Michiel Tack's excellent blog is 'a concise summary of the NICE Guideline saga'. I have used it in advocacy.
https://mecfsskeptic.com/a-historic-change-for-the-me-cfs-community/

Perhaps you are after more detail though?

 

[Ravn]

I think @Michiel Tack's excellent blog is 'a concise summary of the NICE Guideline saga'. I have used it in advocacy.
https://mecfsskeptic.com/a-historic-change-for-the-me-cfs-community/

Perhaps you are after more detail though?

While this blog is excellent (as always @Michiel Tack ), my guess is it's a bit too basic for the purpose in question but I'll pass it on.
I'm asking on behalf of someone looking for material that can be used directly or that can be easily adapted without too much work to educate some psychologists.

 

[Hutan]

Discussion of responses to NICE's Implementation Statement have been moved to Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

 

[FMMM1]

The Norwegian ME Association is organising a webinar with prof. Brian Hughes on the NICE guidelines. Anyone can register on zoom for free and I assume most of this will be in English. It takes place 10th March 2022, 14.00 (local time). They've announced on Facebook that the webinar will be recorded and uploaded afterwards.

https://us02web.zoom.us/webinar/reg...EBEKxMo5u42qHuj91fbzOBYrj_souFFZPkv9F31w6jsUA

Awesome presentation, just listened to it - calm, coherent, informed --- thanks to the Norwegian ME Association & Brian Hughes

 

[Sean]

Is this going to put on Youtube or Vimeo?

 

[Andy]

Is this going to put on Youtube or Vimeo?

Already has been.

Video is now available

https://youtu.be/D8ayxBSsk_M

This webinar now has its own thread:
2022 Brian Hughes on the NICE Guideline and what it means for care of people with ME/CFS

 

[Sean]

Ah, yes. Seen it. Excellent presentation.

So many threads and videos to keep up with.

 

[rvallee]

Like it never happened. Actual pervasive refusal, oh the irony of how much psychological projection this ideology produces.

 

[MEMarge]

The Stockport Service actually gets very good feedback and support from the local ME group.

 

[Keela Too]

Sad that they choose to say CFS/ME. Perhaps it is a recycled ad, but even so.

 

[Keela Too]

The Stockport Service actually gets very good feedback and support from the local ME group.

That’s good to hear.

 

[Trish]

Some posts have been moved to a new thread:

Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White

 

[Jonathan Edwards]

One comes to understand how lucky PWME were to have Ilora Finlay involved:

See the account of her attempt to provide shelter for a Ukrainian family.

https://www.theguardian.com/world/l...more-arms-live#block-625293fc8f081f653cd8cbc2

 

[JemPD]

One comes to understand how lucky PWME were to have Ilora Finlay involved:

See the account of her attempt to provide shelter for a Ukrainian family.

https://www.theguardian.com/world/l...more-arms-live#block-625293fc8f081f653cd8cbc2

Many many stories on that page, i dont see the relevant one? I'm not good at sifting/finding key bit from a lot of info, i cant see it?

 

[Trish]

Many many stories on that page, i dont see the relevant one? I'm not good at sifting/finding key bit from a lot of info, i cant see it?

The link seems to have changed to more recent updates on Ukraine. The article Jonathan linked is no longer there at that link.