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isn't vitality 360 based in Brighton too? as well as other outposts..

otherwise known as 'transdiagnostic'? Agree that this is good advice noting the 'Sussex' part and imagining the Sussex group will think they are owning 'the voice of the patient' otherwise?

yep thinking of the PO inquiry there were a lot of 'I don't recall' claims to emails It's a bit harder to claim that when they’ve written or signed a public letter in response to a newspaper article, so at least we know those individuals can't claim not to know about Maeve's case as written in...

and there is the noise from MRIs vs pwme - I've no idea how long these scans would have been for, or if they looked at the method in detail enough to know whether eg the tasks are genuinely specific/clean enough to only the hypothalamus bits that potential increased load on the executive...

Does the latest reponse by White etc in the Guardian: A dualistic view of illness doesn’t help those with ME/CFS | ME / Chronic fatigue syndrome | The Guardian TW: this is particularly cynical, dishonest to the point of it being a new level of twisted callousness I didn't even expect from them...

The continued attitude from Tyson to not just dismissing that feedback on long surveys and the accessibility/exclusion/harm individually to severe but also that it’s limiting validity is beyond inappropriate this is teaching those who will use it that severe people are just whingers attitude-...

I get that these might be heterogenous, particularly circadian rhythm, from talking to other pwme - but don't know whether that is different in adolescents? SO what do they mean by 'the population' and who suggested that and when, because we all know about all the past stuff by certain types -...

Oh and PS I think this is why calling it an 'illness of exclusion' rather than moving towards (certainly with better research) it being an illness focused on the concept of PEM and deterioration if consistently over threshold for exertion/stimuli etc is really important It is one thing...

Ugggh definitely intrigued by the surname!

Indeed I saw this and thought of the phrase ‘playing the system’ and of course it’s these HCPs who are wanting to profit by knowing where the sales pitches are (not the patients getting immorally screwed over by this) it never saves money always makes patients worse and leads to numbers...

Yep I think when I’ve looked at the long covid services they generally seem to be an ‘anything but [the actual condition me/cfs] service’ I get there isn’t a cure yet but until clinics are made to think it’s not an ok ‘innovation’ to have a service that doesn’t do regular follow-ups medically...

Are there any billboards outside their offices? :rofl:

Yeah well, the fact she hasn't mentioned external validity, just the tools themselves is concerning. Psychometric doesn't mean much, we want to know what the weightings actually are. Basically if she is claiming that isn't necessary because she think she is doing something clever like using that...

from what I've heard of them then an adult version of TRACCS sounds like the opposite of what pwme need , particularly the very severe. But maybe I've read between the lines wrongly?

I'm with you @Trish - it is a real surprise from these charities and not something I think that they have been given mandate for by those they represent. Although I think the reaction so far to the situations makes those situations very different indeed. It would seem we are looking at BACME...

I can relate. :hug: I used to when I was moderate and still working have office days and work from home and could sit in my bed or on the sofa sideways and that was so much better for thinking. And just generally feeling better. However, I basically eventually slowly dismantled what the sofa...

To throw in fatiguability, there is a specific 'judder/three tugs' that eg my legs sometimes do when they are 'done' - it was particularly obvious when I once went to the gym and a personal trainer was stretching them out further into the session, and it freaked her out but I just calmly said...

have we gotten to the bottom of why this no PEG thing came in, and I mean really - was there some funding thing or was it sold on a waste of money in these types. Which could be about 'commissioning' (primarily commissioned for IF, not x, y, z which take more time or whatnot?) stuff I guess that...

The way things have been twisted to be set up removes all the faith in that person and voice over themselves no matter how many times they allowed themselves to be damaged by the lie of a compromise of ‘we’ll just try my way first and if you don’t improve we’ll support you in yours’ the support...

It’s bad enough. What do those facing all this but have no support and find those around them sort of have these it can’t be that bad try this for a year attitude not prepared for the responsibility of how huge a set back and deterioration that causes it’s terrifying having everyone around you...