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Final in a series of posts moved from a thread about a specific patient But this is exactly what I mean. There’s nobody working at the hospital who is an ME expert or practitioner, there’s no “leader” on the ground saying “of course she needs a blackout screen, why would you think we should...

I honestly think it’s prejudice. There will be staff involved who are prejudiced and either don't think ME is real, or don’t care. They have a “difficult” patient so goodwill erodes and suspicion increases. Staff who weren’t particularly prejudiced start to agree that something isn’t right with...

Appropriate support Or ME- specific support I think are useful because even though it can seem nit picky, like “treatments” the average bystander could list all kinds that are available , and none of which are any use to us. It’s not just the case of stopping the BPS crowd criticising (they’ll...

I just threw this together, obviously it’s terrible from a design point of view, but I think you get the impact if you saw it on insta etc.

My only thing is be careful of using “help us find them” or”support us” when you haven’t previously stated that its answers/effective treatments/ pwME, it doesn’t always make sense on its own. I think that where these slogans are being used by Science For ME then that helps with the...

I think the issue as per usual is that the staff treating her seem to think she doesn’t have ME she’s just addicted to cyclazine/attention seeking/being difficult. This is a problem we all face but it’s a million times worse when you’re so severe.

I think no known effective treatments Is powerful, because the likes of BACME seem to think they’re able to do cures, and everything about ME/CFS services at this point in 2026 really needs to remember that what it ‘can’ help with is ‘management’. Obviously the likes of magical brain...

I don’t even like myself for writing this but… There are no effective treatments Before the usual suspects appear, to blather on about brain training and neuroplasticity and manifesting magical elves or whatever it is today, and the conversation gets diverted to whatever BACME and the ME A are...

We could call it institutional systemic abuse, but that would really lead to extensive discussions of our word choice. The main point being to DARVO and reframe it as us being baddies, ensuring the conversation we’re trying to have is never had.

A number of posts have been moved from a thread about a named person who has been hospitalised. This posts refers to emails to decision makers about the care of the person. I doubt anyone even reads these emails, but on mine I included some questions - if the photophobia is thought to be...

Exactly.

The wording used won’t affect the outcome. And patients have a right to describe the abuse in any words they wish. And patients already do a lot of bending and twisting themselves, their words, their presentation, so as not to upset the Dr and maybe be treated. If you don’t like the term...

Gaslighting is clear in the general vernacular, it’s a cultural touchstone, a meme. We don’t need to say something is “67” but we do.

Gaslighting is specific in that it denies what the patient says and further it convinces them the situation is different. Telling a patient to find their baseline is gaslighting as there’s no such thing as a baseline Telling a patient they will improve when they do x,y,z is gaslighting because...

How likely is it that Sir Simon Wessley has tried a pumpkin spice latte?

Not a problem, will just make sure I clutter the internet with name checks. I bet Simon Wessley eats coco pops.

But Simon Wessley is

I wouldn’t risk defaming him by suggesting it meets SLAPP unless you’re legally advised. People on the internet throw about accusations of things like defamation in the casual conversational meaning all the time, it’s very frustrating. Instead of confusing the matters using legal terms with...

Point is it’s not enforceable. The first test is would you win defamation? I already write about that. Second test is would invoking SLAPP in the UK result in any action? No, there aren’t any laws or legislation relating to SLAPP in the UK. Parliament has never drafted any and there’s a lack of...

Just a concept. There is no law. The law is defamation. In any case I’m not discussing it further because it’s a pointless exercise for a non-lawyer. Anyone wishing to take such a case can seek proper legal advice.