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That's interesting as I've had the pain clinic and the long covid clinic both tell me that I need self-compassion therapy. Treatment, I need treatment... Yes, I probably also need to learn to be kind to myself but possibly not my biggest problem to start with....?!

Which makes me wonder what the correlation is between undiagnosed/late diagnosed neurodivergence and misdiagnosis of ME/CFS and people "recovering from ME/CFS" via brain training and other "lifestyle management" approaches. Especially given the high prevalence of ME/CFS in women...

This is exactly my worry; MEA seem hellbent on working against us, propping up BACME, especially with the "clinical toolkit" nobody asked for, the NICE Guidelines were all but ignored, where they weren't used as an excuse for more of the same with a different name, and the absolute explosion of...

Naïve question I am sure, but how do they have this much power? See also my questions about a certain person continuing to fail upwards despite so much debunking of everything he has ever touched

We need this now. It will not stop until it is dragged out into the disinfectant of daylight and made fully public exactly what's been happening, for how long and for absolutely no reasons, beyond misogyny, a bunch of people's careers and wildly inappropriate ways to save a few quid, which has...

This is the part that needs making as visible as possible; we knew, but decided we knew better - the absolute opposite of evidence based medicine, and paternalism continuing.

Because until you have been chewed up and spat out by the CBT sausage machine, and have that first hand experience most people see it as; someone is doing something to help, and these are doctors, so they must know what they are doing; deferral to authority.

Curious, as I have been reading a lot about low vasopressin and frequency of need to urinate, as well as passing high volumes of urine. As some who has recently started adding in daily electrolytes and notice feeling less "washed out" this makes a lot of sense.. I will have a deeper read, as...

Same. Made me wonder about other choices of interviewees.

Yes..I think that might be a significant issue; lack of communal memory, and the rapid news cycle. Ironically, it hides a multitude of sins.

Good point! I find it incomprehensible, as when I was a lower level worker bee hard work was expected but never rewarded, and the opposite seems to be true at upper levels; poor performance is consistently rewarded. The problem is, it's not just an abstract thing; lives are impacted. Much...

This is a deeply naïve question, but; why is there never any backlash or accountability when repeated hypotheses are debunked? Is it really that it suits the prevailing authorities narrative? Surely there should be some sort of demand for accountability, when so many people have been affected...

Has anyone applied to attend a Timms' Review shaping recommendations workshop and been selected? Do we know if AfME or MEA are attending?

:rofl:

@Andy Can I confirm an exact figure/ask for when I am contacting my MP? Is that helpful currently? Thanks.

Ah..ok. good to know, but no idea how we get there. I am speaking to my MP as much as possible.

That is very sobering indeed. And infuriating. Much gratitude to Alem

Which would have more than covered the funding of SequenceME, I presume?

I just had a very quick skim, but this looks a very thorough and well-referenced article. This could genuinely be a helpful resource for therapists trying to support people with ME/CFS who do need therapy, and need their therapist to understand the wider context that that exists within...

Thank you It was good to see you there, I appreciate the support.