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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……..

As with all jobs there are people who are effective and others who are less effective. I’m lucky to have found a counsellor who is good at her job.

They did 10 group workshop days in 15 working days and homework on the non working days. Wow that is demanding, pretty much a normal working week. 33 in Groups of 3-4 so they ran about 10 courses over the period of the study.

Ironically Ebrahimi seems to be involved with a team that’s part of Oxford University Psychiatry Department, yet it would appear nobody there has mentioned Sharpe’s “masterpiece” to him.

Ah ok that helps partially as there are areas with no service.

Yes of course I hadn’t registered it was only regional, should definitely have been down to ICB level I don’t think that would have been too hard.

I think even with a short, basic questionnaire, the value will be in showing what people in different parts of the country report. It can then hopefully be capable of being used as an advocacy tool with MPs and with ICBs particularly in those areas that have made zero effort to address the new...

Excellent summary thank you @tmrw