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Unfortunately gynaecology services have their own issues in any case. And when you’re a woman with ME their service is one that’s difficult to avoid. I just think there are a lot of Drs who display less emotional intelligence than a call centre customer services rep.

Ok men definitely have it worse

We don’t get sympathy we get called hysterical and referred to counselling (if we’re lucky) usually just get laughed at or told to lose weight or the classic “have a baby”

I think Invisible Women goes a long way to explaining it. Everything is default male. If you don’t fit the default, you’re an exception. Systems are built on this, for years it was accepted. It’s just like the myth that having a coil doesn’t hurt and doesn’t require pain relief or any sort of...

I take cbd capsules sometimes. They help period pain. I also drink the Trip cans at functions where people are drinking alcohol (usually at a wake, sometimes Xmas) they’re nice. But they’re only like a healthier version of alcohol. They’re taking the edge off and helping you forget your...

This is the point. It’s exhausting. ME/CFS causes reverse sleeping and sleep problems, basic fact which few medical professional knows or accepts as a status quo. I know Maeve faced this in hospital, I read it somewhere “maybe if you weren’t up all night then asleep all day…” like it’s a choice...

It’s not when the Dr decides there’s an Urgent Medical Issue they need to explore. See also “well this appointment has overrun so I’ll have to go” ok thanks, so you’ve wasted my time because I’ve had to bring you up to speed on something which isn’t currently an issue, and now it’s somehow my...

And another level again when there is a side issue (with me it’s often my voice or my reverse sleeping) which has to be explored and explained, and feeds into the “suspicion” that you’re “just lazy/depressed” and then your session is spent discussing that, when in fact you’ve got a broken...

This part bothered me. All I ever hear about from the NHS is that they can’t cope, are on their knees and don’t have what they need to help me. I’m a fan of the NHS, I have close friends and family working in it and absolutely understand that it’s been underfunded and ruined over recent decades...

It’s amazing how many things people have seen success with, which doesn’t translate to scientifically trialled success. Fantastical, even.

Yes, as do any excess vitamins. Pricey pee. People just want to seem like they’re having a Serious Health Treatment instead of just having a big glass of berrocca.

You see them all over the place in big cities. Also “aestheticians” aka beautician with a certificate in injecting fillers and Botox are offering these IV things. You may not be surprised to know that NHS casualty departments are picking up the pieces from some of these “white-coat specialist”...

lol expensive wee Take a multivitamin if you must

Thank you for this update, sounds very positive.

I love that this article feels really dated and old.

I’m sorry you had to go through that. And glad you remembered the power you had to put the phone down and end the call.

I’m sure she has, just not on camera.

Dear god at the end of the Sky interview Sarah looked like she might cry, I hope she’s doing ok with all this media work.

I don’t have anything to add other than what has been said. My view as said elsewhere is that there is “room for everyone” I think #thereforMe does something different than the MEA and AfME and they are also different. It’s no bad thing to have a few different but collegiate organisations. And...

I just find the science fascinating. Wouldn’t you think actual scientists and medics would love to research something so elusive?