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Agreed - I'm not sure that is what was in place in Cornwall, or on what basis but my probable misreading of it inspired me a bit. And it is 'those hospitals' (ie all but some are particularly worrying) where I think putting responsibility for 'knowing' and 'logging that they know' if they have...

I remember reading a Job Description (might have been historical) for Cornwall (ironic given I'm not sure what that ME/CFS clinic is like currently). It had as part of the description of the clinic that one part of the role for those in the ME/CFS dept was 'outreach' within the hospital. I...

I think the splitting of the spectrum was the most important move BPS did. Mild they call invisible but really it’s ‘don’t acknowledge’ the symptoms from certain things as they ‘aren’t that bad to be obvious’ - people got away with that for years when I was moderate even tho I know that they...

Personally, I think we need to be lobbying for something that is 'in the system' - a safety officer (someone mentioned Ryan's law in Australia) who has different obligations and ergo isn't under the hierarchy pressure and has some weight, as the interim. I struggle to see how a vulnerable...

I know little about this, but that still sounds low as a minimum to me. At least it is 12 higher than the women I guess. How does that reference range 'operate' in reality? Is it 'as long as person feels fine and it is within this, we are OK' or is it 'even if the person feels awful if it is...

Indeed - I'm slightly aware there is some issue from experience, having had a ferritin result of less than 10 a number of years ago from a consultant who did a ferritin test. I'd spent the prior 2yrs going to GP with all sorts of symptoms, and maybe they did iron as part of FBC but I don't...

Can't access full article. From this unfortunate thoughts come to mind as this potentially being like the CFS 'put in the bucket' before investigations into other things, and then the guidelines saying don't investigate anything else. Given this could lead to missing something should such cost...

That's a pretty big range though, and often the accepted minimum for men is thought to be not a bad gauge for women - there being a theory that low iron is just 'accepted' in women because it is more common thereby impacting the norms/averages?

What levels do they suggest are needed for men?

ha! thank you, I'll blame cognitive fatigue - I just couldn't put the bits together for some reason

Indeed. What is strange is that someone with responsibility for ethics and patient safety - and with that the risks being 'worthwhile' is signing these things off. I find it impossible to see how this was sold to anyone from an ethics perspective as justifiable, and who on earth as a POTS...

Happy for it to change to 'only @PhysiosforME audited clinicians' - given they were the ones who spotted the harm and are actually investigating what works and how to measure it. That would mean something. I think these working groups need to consider setting that up - given others have made it...

Is it just me or has this been an experiment in taking 2 unrelated things and putting them in the same sentence, or on this occasion experiment, in the hope that some people will fall for the fallacy that means the two are connected? I just can't understand the ethics of how they got POTS...

Are there other conditions that have been in similar position who might have managed this sort of thing really well/produced significant change? Just be interesting to take a peek at the sort of thing they might have found works

Who are they going to claim did the previous treatments that caused harm or certain didn't help to 80% of people? Because the 2007 guidelines were clear then with the same line about specialist clinician, and I don't see any learning going on from the same people who feel the right to retain...

2 big things missing, even though I know this focuses on pacing are: - the different severities. One thing I found was that when I became severe people were 'prepared to allow me' consideration around the mild level of adjustments, which was useless. And I suspect down to the general world...

Hmm - all seems very caring, unless you are aware of the 'increase' issue ie the stuff around the 'bone' all sounds like they listen. Then there is the silly graphs that seem to be rather the wrong shape and are what will stick in the brain as 'the gist/crux'

Is that a link to click on - I think it might be an internal link from the computer rather than the external version if so?

What does ‘clinicians’ as a term technically include or exclude ?

I think that lack of responsibility for end outcome is important too. Currently no one has it in the way ME care is set up and would be if continued to be therapist run short courses. why would a CCG/ICS/Trust change that to take on responsibility for ‘doing best by’ if ‘being seen to offer...