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How is this compliant with NICE 2021

I think there is definitely a need for something to be done urgently to educate professionals about severe and very severe ME and learn lessons from what has gone wrong especially around feeding. I had a quick skim through the draft DHSC “implementation plan” I couldn’t see any mention in...

https://www.mefoggydog.org/. I think people are entitled to make different choices about advocacy activity. Working in larger groups or organisations isn’t for everyone.

It’s got 490 shares so far :thumbup:

Good article :thumbup:

only those wearing FND expert hats have the special insight needed to truly understand.

Poor start even BACME have started using ME/CFS now you’d think newcomers would educate themselves better. :whistle:

I thought the idea of another disease comparator was to test the results applying to ME rather than chronic illness generally

Thanks to Millions Missing France for their latest share of the petition complete with a short video message https://www.facebook.com/share/p/bpvSEVLq2Gofwq9p/? Merci :hug:

Cognitive deconditioning I don’t have Fibromyalgia but presumably this lot would/will make similar claims for ME I don’t have any cognitive difficulties resulting from engaging less with people than before I was ill. Word finding, losing threads are the type of cognitive difficulties I have...

I wasn’t asking you specifically @Andy maybe others will have picked up

I hadn’t heard of stress induced exhaustion disorder according to Wiki it is only used in Sweden https://en.wikipedia.org/wiki/Exhaustion_disorder

Have any of them confirmed on their own twitx that they are definitely involved?

Is this only being communicated through twitx still? Do they not understand people’s concerns with that platform

@Suffolkres will likely have background on Norfolk Suffolk

https://www.niaid.nih.gov/diseases-conditions/common-variable-immunodeficiency-cvid#:~:text=Common%20variable%20immunodeficiency%20(CVID)%20is,also%20can%20occur%20in%20children. Information about CVID from NIH

Chalder fatigue scale :whistle:

One of the tables shows lower diagnosis in areas of deprivation ie as well as lower diagnosis for minority groups it is also based on class as well. Which I can certainly say does not surprise me having moved from an area that had a service commissioned for ME/CFS to one where there is no...

Well summarised my experience also. Sedation is not sleep

Yep. Transparency and accountability