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The UK edition has this by D Strain. https://www.medscape.co.uk/viewarticle/key-learning-points-revised-nice-guidance-me-cfs-2022a1001jdq Maybe someone based in USA could draw their attention to the issues on medscape.com content

Seems likely to be sloppy web management leaving orphan content nothing links to that should have been removed when the link was removed.

Yes no difference between this and Lightning Process in terms of the money making multi level marketing approach of selling “practitioner training”. Should be specifically excluded in the NICE guidelines on the same basis as LP as NOT a treatment for ME.

Probably needs ME Association or the ME charities group [??] to take this up with NHS organisations.

Well it is nearly 10 years old. Bit shoddy website management to not have had it reviewed and updated.

Well done to those who made the complaint :thumbup:

D&G?

So if Reddit posts are considered useful do they include any time element in their assessment of how useful. Are subsequent reports by the same person used to validate or downgrade an initial report? Do they follow up with people who give positive reports and then no further posts to try to...

I reckon this has been happening for some time. In 2016 when I went to the CFS/ME clinic I was told they don’t do GET, it is a course on “managing ME”, the reality was PACE lite with a lot of group time and short 1-1 sessions to set some priorities and then see how you’re progressing against...

So it’s as effective as CBT :whistle:

Thanks for sharing @Gradzy and welcome :thumbup:

I think there’s a spectrum of intolerance. I can drink without immediate negative effects. It is still enjoyable although because I drink so infrequently I do get tiddly on one glass. I get worse/longer PEM if I drink, even though I limit to 2 glasses. When I don’t drink at a social event I...

Sorry @Suffolkres i don’t understand your post eg reference to points 2 and 5 in the attachment I’m not sure what notes relate to what. It’s hard for me to understand points in note form rather than sentences.

Even if someone has shared on social media before their followers won’t all see the post especially on Facebook so always worth people asking people with high numbers of followers whenever there is a new DecodeME post to share.

Presumably there will be some kind of manual or training material for the people making assessments? If not in the public domain maybe need freedom of information request them.

I’ve only skimmed. Im assuming it is intended as a reference document along the lines of the ME Association purple book.

We’ve got a Members discussion including the Shingrix vaccine here https://www.s4me.info/threads/pneumococcal-and-shingles-vaccine-experiences-and-opinions.24606/#post-406525

As I understand it Civil Servants who were working from home are expected to be in the office minimum 3 days each week now. And they were only working from home if the work could be done from home which depending on technology didn’t include people who work on call centres for example. Stuff...

Pretty big if it is correct

Still not heard back from local Healthwatch about a response from national Healthwatch comms, so I’ve sent another reminder……..