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About PG and CG on breakfast television - I know little about Naga Munchetty, but she strikes me as a serious journalist, or at least I know she has worked on serious news programmes. It's likely that she doesn't have much idea about Post viral fatigue syndromes, Long Covid or ME or the...

At least one of the people in your post has been asked for an email contact now, but I haven't looked at others.

Thank you so much to everyone who contributed and to those who put so much into drawing up the submission.

4% of funds raised, 43 days left. They’re looking to raise $50,000.

^^^ The Physios for ME section begins at around 27.40 minutes into the video

I'm worried about GETset Julie, how will she manage? We're very very selfish indeed putting our needs before hers, and we should all have a long hard think about what we've done. To be serious now, I was very happy, but now I'm feeling more deflated. A post 'is GET gone' (PIGG) reaction. It...

Good news - thank you @Dx Revision Watch.

Because he’s moved his retirement goalposts.

Thank you Jonathan, that’s just as I thought, that there isn’t any evidence of a process of deterioration in connective tissues due to MCAS or hEDS, which could cause spinal issues to develop (or other structural problems). I’ve seen posts on social media from time to time which appear to...

Moved post I’m hesitant to ask this question it seems so basic. What if any changes in relevant connective tissues have been directly and objectively observed eg using biopsy, and documented in people with an hEDS or MCAS diagnosis?

The space between @Jonathan Edwards position, and @Binkie4 and @saltcaramel’s position needs filling with good research. Current research into hEDS is inadequate. Something causing suffering and disability is happening in the bodies of a group of people which includes my sister. I don’t know if...

Don't wear your smartypants over your tights?

Interesting diagram. I know a little bit about how people might read visual shapes and composition (art training). It's interesting that 'Thoughts' and 'Feelings' occupy larger 'weightier' boxes at the bottom of the diagram, and 'Fatigue' is at the apex, and how the eye might be led around the...

This so much. I've been reflecting a lot on this recently in relation to ME. The structural spinal issues (and this is not a thread for discussing those) just highlight for me yet again where accountability lies for the hole ME patients are in. I don't blame the mainstream press particularly...

He's trying to save his employers a lot of money: (my bold)

Health insurance, business insurance, life insurance - there's a lot of insurance products in all this, especially in the US. It's not an area I know much about, but I expect to see insurance companies increasingly acting to deny claims and lobby politicians.

found this: https://www.amazon.co.uk/Mask-Filters/b?node=1939583031

That makes sense to me, Kitty. Potentially that could describe a family member who has an hEDS diagnosis. She experiences subluxations in multiple joints including hips with pain and disability. Bilateral hip dysplasia was identified in her mid forties and surgery followed - periacetabular...

On the subject of returning to work and government advice; I have 2 siblings that work for the UK government - one for the Ministry of Justice in the U.K. and the other for the Foreign Office in the Far East. Neither of them ( or their colleagues) are being told to return to working in the...

Obviously there’s a context where views vary in the ME community around the area of study in this paper I’d prefer if posts in this thread were about the science :)