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We really should compile an anthology of these somewhere because I think there is power in ‘if someone read these all through together’ then it looks quite different as to who’s a bit whatchamacallit I’ve certainly also read through some papers in the past and to fresh eyes they don’t just...

Yes he does well at handling certain characters and tactics your mentioning it has almost inspired me to to do list watching some of these back through to learn a few lessons on the ‘how to handle / approach x’

From coverage of a totally unrelated case over in France at the moment there was a powerful point where the lady said “it’s not for us to feel shame it’s for them” I don’t want to steal or misappropriate but it has made me think on how some types just won’t or can’t do the shame or facing up...

Gotta love how they hedge round ever suggesting anything that would reduce or provide actual support to allow someone the window to reduce allostatic load it’s like don’t mention the elephant in the room : the loads bigger fir them and they do worse so it must be somehow to do with them , they...

I watched the channel 4 programme on undercover:exposing the far right They were looking into an organisation that had two arms: research and marketing the research was race-based and that company was basically getting sponsors funding it to do research that backed up derogatory...

That’s what makes me pause when people talk of an enquiry It sort of needs to be at a point where things are understood that the huge amount of money spent on this ‘third way’ system have just been a massive drain only advantaging those creating their own kingdoms of happy to take up cushy but...

This is a fascinating point to ponder on when you think where does the power lie within this and who is pulling who’s strings in the pattern. You wonder whether cochrane exempting the cfs/me part was somewhat just naive and normal with intentions (the usual pragmatic politics etc not...

I don't know what I can write on here but worth looking through past stuff regarding the history, of questions that were asked and answers given or not.

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: