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Turtle liked SNT Gatchaman's post in the thread Preprint Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al.

Turtle liked Eddie's post in the thread Preprint Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al.

Abstract Hypermobile Ehlers-Danlos syndrome (hEDS) is a common heritable connective tissue disorder that lacks a known genetic...

forestglip replied to the thread : TV casting call for people living with ME/CFS.

Should you maybe respect her wish to not publicize the presenter? If you're trying to keep an open dialogue with her, it won't help if...

Kitty replied to the thread Powered wheelchair that tilts for indoors and garden path UK.

How exciting, @Evergreen! I'd advise that you try and arrange for at least one of the chairs to be lent to you for at least 24 hours,...

forestglip liked Arisoned's post in the thread : TV casting call for people living with ME/CFS.

I don’t think it’s out the realms of possibility that people think pwme exercise when a video made and shared by the “World ME Alliance”...

forestglip liked Eleanor's post in the thread : TV casting call for people living with ME/CFS.

This. All the well-meaning friends and relatives saying "But that person on that TV show said it made them feel so much better! Are you...

forestglip liked Tia's post in the thread : TV casting call for people living with ME/CFS.

My worry is that they will find someone who says they have ME and can still go for a short run and that will be incredibly dangerous as...

forestglip liked Trish's post in the thread : TV casting call for people living with ME/CFS.

This sort of ignorance is one reason why I don't like ME/CFS being described as a disability. Better, I think, to describe it as a...

forestglip liked bobbler's post in the thread : TV casting call for people living with ME/CFS.

Is it worth getting in touch with the presenter Richsrd Whitehead too just offering more info and being gently enlightening. He’s a...

forestglip liked bobbler's post in the thread : TV casting call for people living with ME/CFS.

Yes. I read it as maybe they had a template and someone got tasked with listing non/non-visible disabilities and because of the olde...

Yann04 liked Arisoned's post in the thread : TV casting call for people living with ME/CFS.

I don’t think it’s out the realms of possibility that people think pwme exercise when a video made and shared by the “World ME Alliance”...

forestglip liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

There is no excuse for such ridicule. But I can see why doctors would get fed up with patients claiming to have MTHFR mutations and...

forestglip liked Andy's post in the thread Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+.

Abstract The COgnitive behavioural therapy versus standardised medical care for adults with Dissociative non-Epileptic Seizures...

forestglip liked Andy's post in the thread Closed UK: DecodeME updates, was recruitment thread..

Job description Summary: Job Title: Communications and Engagement Officer Reports to: Research Manager Salary: Up to £30,000 FTE...