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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

May be well intentioned but anyone dipping into the pockets of sick people and their families should set out who they are and aims clearly and in sufficient detail to be transparent than two lines on twitx and a PayPal account

Wot Sid said

Just tried The uk wording is based on the NHS website …

SSRIs tricyclics gabapentin/pregabalin. Throw it at the wall see if it sticks medicine n my opinion.

After earlier concerns about the coroner it is reassuring to hear Sarah Boothby sounding more positive about the process. And good that a date has finally been set.

Oh no hope you can find someone sensible. Meanwhile if you have to see her again maybe the physiosforME one page helpsheet would register with her.

And they also shared on Facebook

They should have programmes that do long term follow up