Search results

I've 'bought' these, so will check them out.

Well it's good to know these are his recent thoughts on the matter.

There's an opposing opinion I've heard before. That's the belief that if we keep mentioning 'it's real' and 'it's physical', that reminds the reader/listener that some people think it's not real. Then they start to wonder if it's not real, and if we're overcompensating. Think of Tom Cruise. The...

The scope has been published and monitoring and review were topics mentioned there, so I'm allowed to say that we're definitely looking into these things. :)

Please bear in mind that the current NICE guidelines from 2007 already say that this illness is real, that patients should be believed and have their illness acknowledged, and that treatments should be individualised. That hasn't made a difference to many people. Doctors who are prejudiced...

The call for evidence is two-pronged. It's looking at the care and support needs, but also about patient responses/attitudes to treatment. Please don't let us forget this second part. This 'grey literature' would form part of the evidence base for 'evidence-based treatment'. If all we get is...

There are two separate issues here. I was replying to the Twitter post where someone was saying they can't send in questionnaires. I was saying they can via the call for evidence. The OB/AfME is a separate issue, albeit one connected in many people's minds. It's not going to include everyone's...

It's basically Schroedinger's cat stuff. Classic postmodern literature theory spiced with quantum theory: Everything is everything, and can be understood and can exist in multiple ways prior to human observation. In observing something, the multitudes of understanding and being collapse into a...

I've replied to hopefully clarify. What NICE doesn't want is anecdote (John Smith said...) but you can pool survey data (17/20 patients said...). You can even say, '17/20 patients said... Comments included...' So long as it's not n=1, basically.

You're possibly right. The wording is ambiguous: That reads to me that she wasn't conscious about her thinking, but that it was those unconscious thoughts, or fears, or signals from her brain which caused adrenaline which caused her symptoms. There's implicit linking in her description between...

Is it worth suggesting this (about recording answers at one's own pace)?

There are several committee members who've treated severe patients and who have recommended wheelchairs, etc, to their patients.

Sorry, I wasn't implying you were. I just wanted to make it clear that in pointing out how her experience is not mine, I'm not trying to say 'that's not real ME'.

Everything just feels so different in her description compared to what I experience, I think. Her explanation of adrenaline doesn't sound right either. I rarely get adrenaline surges, and when I do they mask my symptoms temporarily. It's not the adrenaline that makes me ill but how it distorts...

I know we shouldn't say this, but this sounds so different to my experiences. She's getting ill at the very thought of hiking--that's worry, in my mind. It's not the thought of doing things that makes me ill.

It's this one: https://www.rheumatoidarthritis.org/treatment/acr-score/

Thanks!

Maybe another organisation can consider it? @Russell Fleming @EspeMor

I will send it to the chair but it will probably still need to be submitted, in English when available, via NICE's template by a stakeholder. Could S4ME add it into its own submission?

Here it is: http://www.healthmeasures.net/search-view-measures?task=Search.search (scroll down to 'view measure').