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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...

Have I missed a link?

They must have found some protocol because when the 2021 paper which had Chalder on it came out it referenced and linked to the PACE manual via an rhul link. It was missing page when I clicked on it at around Sept 2021. a Google found MEpedia had a page on it to my relief (I think they were...

Deeply worrying , but not a coincidence. I noticed that certain things for CCG have ‘date of next update’ added to them etc, or one might assume if something many years old it is more vulnerable to being called out if date and one demanded. Reading through that PEM isn’t mentioned makes me...

might have missed this elsewhere in thread but for bigger things like this re history is it worth sending to MEpedia? That was where I found the original PACE manual - and given the tendency to suddenly claim ‘we never did fixed increments’ ‘it must have been renegade therapists as we never...

I think to them, despite the lip service 'research is going on into different causes/theories' line, they might mean 'their dysfunction theory' : https://www.bacme.info/sites/bacme.info/files/BACME%20An%20Introduction%20to%20Dysregulation%20in%20MECFS.pdf Although you can scroll down the BACME...

The BACME paper (still in 'proposed' form according to title and dated Oct 2020): https://www.bacme.info/sites/bacme.info/files/BACME%20Position%20Paper%20on%20the%20Management%20of%20ME-CFS%20October%202020.pdf includes that it doesn't believe in the deconditioning model (although it may be a...

Moved posts The BACME paper (still in 'proposed' form according to title and dated Oct 2020): https://www.bacme.info/sites/bacme.info/files/BACME Position Paper on the Management of ME-CFS October 2020.pdf includes that it doesn't believe in the deconditioning model (although it may be a...

I'm not sure he is: "Sussex ME Society is promoting new guidelines for healthcare professionals produced by the British Association for CFS/ME (BACME)." is very different to accepting the Nice 2021 guidelines. Maybe he is being politically polite in the 'great service' or maybe it is intended...

I'm not sure he is: "Sussex ME Society is promoting new guidelines for healthcare professionals produced by the British Association for CFS/ME (BACME)." is very different to accepting the Nice 2021 guidelines. Maybe he is being politically polite in the 'great service' or maybe it is intended...

There have been a lot of newspaper articles talking about dualism over the last few years - often from columnists who didn't do philosophy as their educational background getting inspired by BPS-related people mentioning dualism. I'm no philosophy expert, but through my career had to look at...