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Yes. This. Very well put @Peter Trewhitt I had been trying to figure out exactly what the problem is, and it is this: propping up the status quo for fear of conflict, when confrontation is exactly what is needed. The current paradigm and power balance have been in place for over 30 years and...

Reading this thread is giving me a lot more very serious concerns. MEA have: social media staff, but Dr Shepherd is on SM 7 days a week and some comments appear to have been hidden set up a clinics project, which has not started by asking the local group In that area what they are are already...

And yet AfME had a public AGM online, recorded it & it is now on YouTube So it's not impossible?

Thanks @Woolie Getting officially diagnosed with PTSD is almost impossible, ironically, but my symptoms have been recognised by multiple medical and mental health professionals on my notes. The DSM 5 criteria are very thorough. Can confirm, it really is that bad, so I do appreciate the point...

Is it just me, but it seems a little odd to be so particular about insisting the motion meets all procedural requiremets, but not the AGM.

Appropriately for this thread: traumatic invalidation Traumatic invalidation occurs when an individual's environment repeatedly or intensely communicates that the individual's experiences, characteristics, or emotional reactions are unreasonable and/or unacceptable. Often experienced by the...

I have medically induced PTSD thanks to being medically gaslit and nearly dying after being dismissed as "overweight" when I had pneumonia and double pleurisy that I have never entirely recovered from, and led to needing major lung surgery after two lung collapses, and led to my diagnosis of ME...

I actually have an Open University Psychology degree. Getting ME stopped me doing my PhD. PG would hate it. Absolutely loads on experimental methodology, stats and ethical approval of research studies.

Bit of a cheeky question; does anyone have a copy of this they could share?

I read some where, probably on here, that someone said "Sir's career is more important than my life" and my God, I felt that. So many of my choices have been taken away because medicine refuses to listen to, believe and prioritise our reality. A small group of people with so much power and...

Interesting..I have seen this mentioned on another thread. As my ME got worse, and especially since getting covid, I get every cold or virus going..but then I also have two very young children that live downstairs from me and who don't seem to understand the purpose of doors or covering their...

51mins @Adam pwme 's recording of The Radio 5 live discussion on Long Covid from this morning & mentions ME. Starts with Paul Garner, but is a very good discussion Worth a listen

He appears to be friends with Wessley and Gerada. The latter is the BBC's go to GP so it could be a connection to her or the Science Media Centre put him forward as their in house expert for all things covid?

He clarified that cognitive approaches "can help" This is a really good discussion. All sides getting an airing with lots of personal stories.

Paul Garner on Radio 5 live just after 10am this morning (29th October) introduced as a "covid expert" claiming it is a a "stress response" and the "nocebo effect" Dr Amy Small was also interviewed and very politely disagreed and said it has multiple elements, including vascular.. commenting...

Tagging in @Karen Hargrave of #ThereForMe and @Aaron of the Billboards project DM me if I can help? See @Chris Ponting 's list of needed research projects in the post this is a reply to

Yes! I have had to have an afternoon nap since I had lung surgery (one of the contributors to me ME) 14 years ago and it is not an option - my body will insist at some point and if I try not to, or have over done it I wake up at 1am for at least an hour - and this totally disrupts how I feel the...

Apparently so https://www.theguardian.com/books/2020/sep/12/susanna-clarke-i-was-cut-off-from-the-world-bound-in-one-place-by-illness

The question remains; how do we change the system so that disbelief isn't the default response to anyone ?

or my personal favourite; Would you like something for your anxiety (I have medically induced ptsd after almost dying 3 times)