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deleted my comment - it didn't add to the discussion - not cognitively up to it today sorry @Wonko I saw you'd already 'liked' - unlike if you want :)

I hope you are right, but I'm cynical.

What records of death from this will be collected? My guess is none. A lot of people would have to die, or inconvenient people who are noticeable would have to die, before deaths would even begin to be a scandal. The UK establishment is quite skilled at ignoring deaths when it wants to, and...

Yes they are different. Some patients are not having comorbidities like EDS addressed. Where there is confusion it isn't originating from patients. Thanks for your reply re: Rodney Grahame it was illuminating.

It would benefit many people with, or suspected of having, ME/CFS to be examined by a knowledgeable specialist for hEDS. It should be in the new guideline to be considered for differential diagnosis or co-morbidity in my opinion. The impact on health of EDS goes beyond joint pain and...

@Joh thanks for your reply - sorry but I confused shortlist with nomination - I thought the nominations were already decided but will be announced on the 23rd. whether that's right or not I still think it's important to support the film as you have been doing

A possible objectively measured marker? The references to other research into sight issues was interesting to note as I wasn't aware of it before. I hope my optician knows this stuff. Snippets I thought were interesting: People with ME report a range of visual issues. Many more are...

Ah yes!! of course!

@arewenearlythereyet - what on earth is that in the photo you posted?

I thought the shortlist was agreed over a week ago? Can't remember where I read that tho'.

My mother's going to be relieved when I tell her it's not all her fault it's my husband's. edit - typo

As a cynic I think we have to be more visible (which we struggle with for obvious reasons) If we are seen, and seen to be lobbying, that makes it harder for politicians and the health organisations to ignore us. Norway does give me some hope. @Samuel I like your signature about those too sick...

@large donner - Stretching speculation a bit far imo. I prefer to stick with what can be evidenced. That's bad enough.

So what's it going to take? Someone in the family of a senior politician becoming ill with ME too? Seriously, how are we going to win this?

This would be helpful. Welcome to the S4ME

:hug:

Hope these are ok

Keith Geraghty's twitter posts today (c.4- 5 hours or so ago) are pertinent to this criticising some of the research supporting GET prior to PACE eg

Ignore the large patient-reported bump under the rug (coughPACEcough)

Stupid question : Does our position make a difference? (or - if I stand on my head will I recognise a calf when I see one?) apologies if that's seriously stupid, but I don't know eta -I'm thinking about the research (of which there's not much) which talks about blood flow and vascular...