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I haven't been able to see full text but please tell me that the 'trial' of insomnia at least used... sleep trackers and not asking people 'whether they feel more positive about their insomnia' [after they've had x sessions persuading them 'why are you worried about not sleeping, given you are...

Even creepier: Starting to see that they are trying to use distortion of the old criteria to use 'Recovery Norway/LP' mislead by not giving people correct stats on their own condition - as should be their right - in order to mislead them in behaviour that harms most. It's like a diabetes unit...

Let’s remember the extreme words such individuals use to describe patients or their actions for what turned out to be eg putting in a FOI request or wanting to provide critique or feedback to an article or research as per other illness patients would be perceived as entitled and following normal...

Just same deluded stuff - how can the same people be able to involved in anything that takes pwme as patients when two years down the line they (the staff) still can’t think straight as exampled by utterly cannot get their head round how opposite snd false beliefs their thinking is - they werent...

OK I've now looked at the other Oxford service 'Oxford Health' which is for those moderate and severe: https://www.oxfordhealth.nhs.uk/me-and-cfs/your-care/ Here is their treatments section: This is a reversal of what is supposed to be happening. Where is the bit about someone's health...

hmm just to follow-on I've look at the PEM document for BACME ( https://bacme.info/wp-content/uploads/2022/05/BACME-Post-Exertional-Malaise.pdf ) and even that includes the same old tired not accurately nuanced bits: Things like the following just show a lack of seriousness or really getting it...

Just having a look at the Oxford services in relation to this advert. At OUH (there is another one) it is run by clinical psychologist anyway, with 2+ psych and a physio. https://www.ouh.nhs.uk/chronic-fatigue/treatment/ It says that their approach is in line with 'the Nice guideline' (and...

Just been reading the following news story: https://www.thetimes.co.uk/article/fears-of-bias-in-low-traffic-neighbourhoods-research-6x3j95mjm And all I could think of is this malarkey for FND with the same rotating what trio, quad and their trainees and contacts just churning out manifestos...

It's somethign akin to/like requiring those coming to a 'how to manage your diabetes better' session to eat a sugary meal that they supply, having made them attend 10-3pm with no other options, whilst they tell them to behave better on their sugar-eating. It seems a very strange choice of...

I'm glad to see 'optimising the environment and adopting ergonomic behaviours' being listed rathe than too much on dodgy motivating or psych terms like 'satisfying' (something that gives me the chills even though I acknowledge that people do need to be acknowledged that it's absolutely correct...

Agreed. And yipeee!! another 'trial' that is using an implicit filter for both recruitment and then drop-out of having sessions that people have to be well enough to travel to and find it doesn't make them so ill in length there is no point them going. When is medicine going to realise the...

They've basically described what the null hypothesis should be for their experiment haven't they? ie 'if there is nothing that is impacting the reaction to exercise in those with covid 19 or long covid then x should be what we see..........but if we see anything different then .... that is a...

I'm confused and struggling to articulate it. Which says a lot about how confused what it is in the first place I think. what I think I can put down: 1. is this really about saying we need a 'specialism' in medicine that covers the gap - a bit like when the Nice guideline people probably had...

The dimwit approach - and we've all been there when most pwme say there were at least 'more active than most' (many athletes) prior to getting it, becomes ignored and rewritten to the assumption of 'well Chalder or whoever wrote its caused by deconditioning so that reality mustn't be true -...

Is exerkines a term they've made up? Anyway, the irony of if these were real, identified things wondering whether the vice-versa is that these if better understood could then provide a useful part of methodology for studying what they create short-medium-long term in said systems vs...

It's an issues with many other job areas too: - if workplaces can't find ways to ensure that all types of people are represented then it is a vicious circle of the environment more and more favouring the ablist. I don't know the details of this particular one, but in todays day and age there...

:wtf::nailbiting::banghead:

Agreed. Given the horrific paternalism that we've had historically then I think that any allies should be keen to make sure they are 'leading the way' on attitude of who might be given power over us, their behaviour and in making sure there are limitations and safeguards - mainly in order that...

Thanks I wish you luck and would be interested in any updates that you have

Hadn't heard of this and only had a quick scan through so far. After thinking of other things from reading comments here in reverse-chronological I then 'wondered': is this just about the situation that neither the name of CFS (or anything fatigue bla) nor ME (because medics use/see the 'there...