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Thanks @Valentijn.

I had no idea this could be the case; I assumed Cochrane actively commissioned people. So does this mean a group could set themselves up to perform a a review from a biomedical position and offer themselves and be accepted by Cochrane? What would prevent that? Apologies if it's a stupid...

Physios assessing medical conditions.. Physios issuing sick notes.. Which are cheaper to employ; physios or PE teachers? I'm sure PE teachers could do an excellent job with their ability to recognise a malingering shirker when they see one. edit - It all just makes me angry.

Angry with Unum? With Wessely? Of course. True. Unum have advised successive governments (including Blair's) on 'welfare reform' disability, as you probably know. It's a pity everyone doesn't know about this. It's a pity everyone doesn't know about their track record in the US. Somehow...

That's a coincidence - I'm watching this right now!

What have they been doing to those poor children?

I can relate to this. I'd say what I'm currently experiencing post shingles is a lowering of my tolerance for activity (greater fatigability), hence more frequent PEM which is triggered at a lower energy expenditure than before, alongside general feeling more bleurgh. That doesn't help, does it

Well I'm thankful I was born in July too and can also lay claim to the notion of decency and respect :laugh:. @Joh - this thread is an eyeopener for me regarding what you are up against in Germany - thank you. I hope there's some way those of us not in Germany can support pwme there. Tragic.

I'm a bit sceptical about this when, in the UK, hospital departments are being closed - A&E and maternity services for example - and when in some cases hospitals and ambulance stations closed/merged to save money. I suspect it's more that something has to be seen to be done about us without...

@Squeezy i hope you find something that helps soon :hug::hug::hug::hug::hug:

Something about this just doesn't make sense. always.

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...