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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...

The list looks good but I think longitudinal needs to be thought out - on basis it is likely to operate like ME/CFS of ups and downs in severity and support changes really being needed at those points. What is the model (if you take out the 'there isn't a cure' - which the more I say it the...

Is NIHR affected by this?

Does anyone have info on what the sources of funding are for the ME/CFS of the type we'd want to see more of? I know there are EU funding schemes, what I haven't looked into is the 'behind the scenes' where certain funding sources are going to be affected that don't have the...

It is when you focus on these bits that it starts to remind of something that was a nasty, we've tried to forget to the depths of history, treatment of some condition in the old days - perhaps autism, but maybe something else. I don't think ME is 'unique' over history and I think that this arm...

It is the specifics of it all in treatment that is 'intimate' and I think that is the right word given you are controlling what someone is allowed to enjoy,do, when they can sleep to minutiae is there another - particularly when it is diaries and intricate planning to this extent. To put the...

'Moments of truth' listing what was missing or warped by bad paradigm and need to be high on agenda for current talks and those who won't get those opportunities back I struggled to get the title right on this. I might have missed other posts doing this well and really want an 'area' started...

Pathetic stuff. It is entering full manifesto-level realms with this. Terrifying what you would have to believe you have to write some of these things, given the Nice guidelines, regarding being emboldened to continue as you wish. "were recovered (absence of severe fatigue)" We really need a...

I was thrown and wondered for a moment whether I'd somehow found the wrong person of 2 with identical names. I'd theoretically get the power of thinking 'well this is an issue for everyone and there is power from 2 political sides being on the methodology', but I'm unsure whether they are both...

Interesting. I was just looking up who the authors were, given they threw out the potential red flag of "and the critics often lack field-specific skills and technical expertise". I have got distracted by finding the following quotes (in the following paper (Vink and Vink-Niese, 2022...

Yes, sorry didn't make it clear I wasn't questioning that so to speak - my question was more about it feels a big jump that they have made to infer that ongoing that is accustomisation that is good and follows any set pattern without continuing to monitor. And certainly agree that getting people...