Likewise - and in my case that’s most of what I’ve ever published… What parasites.

Absolutely agree. D’you have any names at ME Action Scotland - people that you’ve been in touch with that I might contact? Can you DM me them (this is my first foray into bsky so don’t know how private messaging works here).

…experience as you with the consultant. Thanks for the suggestions about charities - will try to get in touch.

Thanks , Michiel - that’s helpful. I did see that link but it seemed to be only a preliminary response, so I was very disappointed to see the latest analysis. Will def keep you updated if I go ahead; it will all just depend on energy reserves. But I do know one friend who’s had exactly the same …1/

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey - updated analysis Findings from a survey of 14 NHS Boards on service provision for ME/CFS, and barriers and opportunities for implementing the NICE guideline for ME/CFS locally. This is an update on survey responses th...

The latest analysis (published Nov 2024) of responses to the new NICE guidelines bizarrely shows NHS GGC highlighting LP as their key offering - there’s no acknowledgement in the attached document that it flouts new guidelines. www.gov.scot/publications...

This is so shocking. I’d like to make a complaint too (I’ve had MECFS for 5 years and have avoided getting a referral to CIC specifically bc I’d heard they pushed LP). Do you know if the NICE guidelines have now been ratified? If so, would my best bet be to speak to the MEAS about pursuing this?