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Thank you

DARVOin action, now we’re gaslighting people? By having symptoms which we actually have? Troll.

I’m really not sure and couldn’t find the info

Is it 10am tomorrow? Apparently you can use the same teams link to attend, if you attended the inquest

You’re very kind, I call it “Daily Mail Headline based-knowledge”

Perhaps @dave30th @Naomi10 could add his experiences to any pieces they write?

Because it’s often “young women” it doesn’t seem unreasonable that they’re suspected of an eating disorder, but Bob’s experience, as a man over 50, really underlines how badly pwME are treated despite your sex or age. However I wouldn’t share it - nor should anybody- unless anyone knows that’s...

I don’t know what Bob’s wishes were, but I know advocates are citing others stories similar to Maeve. Did Bob want his story to be shared?

I propose Foyal Rree disease. Just swap the first letters of Royal Free, so no specific link to Royal or a UK place. Doesn’t sound like anything in particular. Doesn’t describe the illness. I’ve got “FR” easy to search on the internet.

I see from x Twitter -Janet Dafoe, that Whitney Dafoe has written a letter to the Coroner [presumably about how he has been kept alive by enteral and parental feeding) but he doesn’t know if it can be used as evidence as he’s not part of the case or in the UK. Good of him to try.

Fair enough.

I know there’s a separate thread discussing “names” but Ramsey’s Disease - game changer. Lots of diseases are named for the Doctor who discovered it, rather than “describing” what the disease is/does/affects. And he was an amazing advocate. An easy solution IMO.

Helen Baxter’s paper published April 21 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/

Wow. Crying.

Imagine a patient group who are mainly limited physically by low energy, many are housebound. They’re not scared of us sending “death threats” they’re scared we’re intelligent and we can see the emperor is not wearing a stitch.

Screenshot of Dr Max in the Mail from web archive (thanks to nightsong) The BPS appear to be using the classic abuser tactic of DARVO (defend, attack, reverse the victim/offender) they’re just helpful reasonable guys trying to help! Nobody said it was a “made up” illness! Also ME activists...

I’m dreading this “ME isn’t the same as CFS which aren’t the same as …” disingenuous nonsense, to move the goalposts and put us back in BSPland and far from CareVille. I do wonder whether Prof Beaman read the same Times newspaper which clearly stated “ ME, also known as Chronic Fatigue...

I think it was DrShelton’s letter, not Dr Strain

Dr Roy said he’d never seen someone get it unless they were sectioned. Therefore the way he’s seen it is the right way and anything else is pooh-poohed. Presumably, someone gets sectioned and forced to have NG - even if it involves them being forced? Which would involve a high nursing burden...

The timeline and unusual points have started to percolate? In my brain and produce idea coffee. Dr Roy stated that TPN in the community was happening, that was a key part of what his team oversees. But the patients either have otherwise good health and ability to manage themselves, or there’s a...