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True, also thought of that overnight after already having posted my suggestion. Hmmm.

Perhaps this comment should belong in a different thread under advocacy, but it was inspired by reading through this thread. Regarding the earlier comments on 'specialist' services for ME/CFS and it being a poor excuse for the cheap psychobehavioural BACME NHS clinics: I have never understood...

Unfortunately this, in my case, is one of the worst parts. Because every single service I need defers to or consults with the NHS ME/CFS Clinic about my care etc, and completely bow down to their misinformation. So I cannot get any services that will treat me with appropriate understanding or a...

:emoji_joy::emoji_joy::rofl::rofl::rofl:Thanks for that chuckle! I wish I'd had that quip back at the time. Though it wouldn't have done me any good to say it. But that was certainly a good laugh reading it now. Apparently it's called the BACME Guide to Therapy 2025. /S

@Trish , @PhysiosforME and @Jonathan Edwards Thank you for all your efforts on this.

Yes. One of the authors of the Guide to Therapy is attached to my local (NHS) clinic. I kid you not that in the introductory workshop this was the following analogy for why test results often come back 'normal' in ME/CFS: "It's like driving a car with your foot on both the accelerator and brake...

One can hope! Without wanting to divulge too much publically, this is what the entire service is based on. Thank you so much for this link @Hutan, and for making the observation that this book was listed! Reading through the thread was very insightful indeed. I think perhaps a members only...

Call me paranoid but the next time I looked at the gov.im link for the service after I posted here, the website had been updated to include a variety of different resources, with less overt focus on mostly referencing BACME information. Now it may just be coincidence, but.... :nailbiting: ...

The service is medically led by a GP with a Special Interest in ME/CFS. In terms of hours, I can't say for sure but I think she's only in the service one day a week. The other professionals involved work more days but again not sure as to total hours. The new service at this time does not...

Thanks for your reply! The service being set up was definitely a big thing for us, and as I think others have commented previously in the thread, was a very long time in the making. And took a long and difficult campaign. Completely agree with you regarding what we need from services in terms...

I'm new here and live on the Isle of Man! I've been seen by the ME/CFS and Long COVID Service.... I haven't been able to make up my mind regarding my opinions of the service. Wondering if there's anyone else from the Isle of Man here who has also had experience of them? I have doubts... But...