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Liv - my post above is what I sent as a pm but it seems I didn't! But I clearly remember I did, I remember doing it :arghh:!! I have no idea it must be my stupid ME brain. Well perhaps my mistake will make everyone els feel better about themselves:laugh: Don't be sorry I shed a few tears :hug...

Just briefly, Liv. I hope your email makes a difference. I don't claim myself because of the reasons your email so eloquently presents. I'm sorry you've been affected badly already and I really hope both your applications are successful without further deterioration. It all stinks so much, it is...

Interesting thought. So this is one of the things I'm wondering now about my sister; it might make an alternative sense of her problems. I could do with asking her more questions. I'm a bit shocked! However, it took a third rheumatologist to look at my sisters x-rays to see she has hip...

I say I've done the guardian but my comment is now badly buried and not very noticeable. There are now more articles too. Still, just one person noticing and following the recommendation up is worth it.

How about a few comments under newspaper articles about the oscar nominations to increase awareness of Unrest? i.e. to say it didn't make the nominations but still a good film worth seeing, and where. I've done the guardian.

A person can have psychosomatic problems, or be a hypochondriac, but they can still have organic conditions in the same way as anyone else can. Being too wedded to thinking otherwise at worst causes deaths.

This turned out to be a long post off at a tangent - whoops! I'd say generally speaking people in the UK are very aware that shenanigans go on and the voice of authority isn't as well respected as in the past. However, when you have worried sick people who lack all the information and are...

Very helpful discussion. Thank you @Michelle and @Esther12 for your recent posts which particularly resonated. It's very interesting as I try to make sense of what's going on with my sister with hEDS dx (and other conditions which complicates things), and myself - what is similar and what is...

I am interested in EDS because of my family history and because I have features myself, possibly enough to be diagnosed with hEDS. I really can't get my head round it currently and it's not my principal concern; the NICE guidelines and their effect on patient care are. What I was clumsily...

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