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Given how much I’ve been able to overdo it in the past and the damage it has done I think it’s something to do with the recovery from exertions ‘process’ rather than signals of what to do or not to do being the main component of this It’s a bit of getting in the weeds of the ‘but your legs...

Indeed I think we need to be aware there is potential for a lot of harm from the psychiatric - we just are even less likely to hear it due to such labels meaning if they die the waters are apparently muddied by the psychiatric label - this is the bit that made Maeves situation unusual in being...

Foreseeability of the impact in real life of providing just enough to allow the terrible treatment‘because everyone claimed to be confused by the debate’ when there is no debate once you’ve got that update on all those papers being built on sand foundations of a paper that was properly debunked...

Agree. most people are not interested in statistics and switch off when you start having to talk about these things like ‘technically broke a rule’ as even those who sort of can grasp some sort of maths or science really have to get this area to talk on those methods terms and get the impact...

Looking at the Hansard notes from 2002/3 I’ve seen they bite the cost of me/cfs to be huge but the cost due to consultations for proper diagnosis and care by GPs /medical to have been £900 per head. CBT MUS nonsense I think I’ve seen quotes upwards of £1700 including in old Nice type cost...

Just posted on Facebook www.facebook.com/story.php?story_fbid=953500123487285&id=100064819177796 about asking people to ask NIH to support their me/cfs research map to advance research

https://www.pulsetoday.co.uk/news/politics/labour-to-bring-back-former-health-secretary-alan-milburn-in-nhs-reform-role/ Starting to doubt he’d be offering anything other than a repeat performance?

https://www.thecanary.co/uk/analysis/2024/10/06/dwp-nhs-co-working-job-advisors-hospitals/ Another mention when you get half way down to the ‘Work Well’ job programme (pretty sure that was deliberately named in order to create confusion and stop us mentioning and being heard on the WorkWell...

Yep I think this one needs looking into carefully https://en.wikipedia.org/wiki/Improving_Access_to_Psychological_Therapies I also have a memory of a tv programme that looked back on new labour where he is an architect of strong views on certain things

Still just reading through this and not opened the reports and plans and research it refers to. It’s from 2002/3 https://hansard.parliament.uk/Commons/2002-01-22/debates/a75516dc-531d-4229-8959-33b20f9081ae/CfsMe So no idea yet if this is where it went from a good medical officers report to a...

Maybe having done that for long enough the magnitude of what you’d have to realise you’d done makes for such huge cognitive dissonance that person absolutely must be kept labelled because you aren’t prepared to go through the (nowhere near as much effort or pain as that relative will experience...

Am I remembering wrongly in thinking millburn was very pro CBT and iapt etc back in the day? Of course I’m very open to someone having read the results and changed their mind on things over such a time period and if so that insight being more useful than a naive kind to persuade with the same...

Aw gawd both seem personable outside our arena but historically regarding me/cfs these seem two very different beasts not that I know for sure what Jacquu thinks on all the tendrils that massively affect us? but then I don’t know much about Meddings or whether it’s normal for that role to have...

I agree in the sense of a weird angle that might be just anecdote based on assumption. Those who I know who have said they have PVFS have been very sure about it. Far more sure than anyone (except maybe the ones who had the suddenly extraordinarily ill and bedbound for years from the start...

Yep it’s called being honest and getting consent without wearing them down with unnecessary questions then hiding the relevance with ambiguity

Am I right in thinking this got to the ‘of course we must’ stage then quietly dropped for whatever dumb reasons - unless there are any not dumb ones I’ve missed I can’t believe it finally got thru and I missed it because it would have been in the news? so demoralising that this stuff happens...

Sounds like the sort of thing we should all (all those with various diagnoses or misdiagnoses) be joining together to say ‘no more’ on, particularly no more on the silencing is then putting words in our mouths that the misinformation or worse than useless pseudo treatments are good for us or...

The stupidity of not realising (in this example) that those who are able to get and keep a job is a test/filter to find the most well/least ill, rather than a treatment and yes let’s see the long term. This bigotry again First they have to ‘accept the diagnosis stuck on them’ to get off the...

I would say it can’t be taught by rote or examined by plain written question without being played But I think it can be taught just not all can develop it. However truth is that that type can be identified quite easily during an admissions process and during all the windows in the medical...

Plus not only did he have the power of running some of the trials and picking the therapists but he ran the royal colleges for these professions and had his hand in being able to make decisions on ‘untrained’ being pushed through the system. I’m not sure his definition of untrained is the same...