https://x.com/sib313/status/1826614862979760393?s=46
Something to bear in mind. Also in general when you hear about ‘wonder drug’ and will ‘transform’ this or that disease then be a little sceptical when reading that in the media.
Does anyone else in here suffer from chronic anxiety? You don’t have to agree publicly, if you’d prefer to DM I’ll understand.
I’m off out tonight with the wife, to a friendly village pub that’s a short walk from here, there’s a band playing who are all friends of ours, the audience will contain friends of ours too, I’m on the guest-list (saved £20 there) and the band have already sorted a seat for me in case I can’t stand up for long. Last summer, I was even invited up to play percussion on their last few numbers. I’ve missed performing to people and it was one of the happiest nights of my life.
There is no jeopardy there tonight whatsoever. It’ll be a really lovely night out.
But COB I’m sitting here shaking about leaving the house, seeing friends and well, I don’t actually know what it is. But I’m going to go out nonetheless, if my legs go from under me because of the cold, I’ll get a cab home.
Imagine what I’m like before a holiday or the Arsenal podcast evening I’m going to on my own in London in a few weeks. I made a big thing of going to my first Arsenal matches in years in 2024 and I bet some of you thought, you’ve only got Fibromyalgia, why’s it a big deal?
All of my happiest memories will start like this. I’m getting psychiatric care and taking benzos at the moment as I’ve just been through a bad spike, but apparently it’s a chemical reaction caused by the neurological condition that triggered Fibromyalgia and like the pain I get, I’m going to have to get used to it.
If anyone ever wants an offline chat about stuff like this, I’m here. We can all help each other.
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Thought the few posts you made around that were brilliant tbh.
Hope you have a good night out tonight mate.
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I don’t but my old man has for over 30 years now (hasnt worked at all in this time).
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Fair play to you for getting that off your chest. Hope you have a great night out, I’m sure you will.
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I had a great night out thanks, apart from accidentally knocking my glass over. It’s surprising how far an inch of beer can go.
Went to a party after the show and ended up helping a woman who had a seizure. Afterwards a couple of people there said I’d make a good counselor which I’d never thought about before.
Anyway, no hangover either and I deserve one!
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Fantastic news
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Fuck me that’s fantastic news. Just being tested for it when I didn’t know what I had was frightening. Each time they’d say “We’re going to test you for ….Huntingtons, Parkinsons, MS, HIV, et al” I would read-up on it and spend days in a panic.
Medical science is a beautiful thing.
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Lovely news I await the full peer reviewed publications rather than the pharma press release however.
It’s a press release by Prof Tabrizi, director of the University College London Huntington’s Disease not some “big pharma” sales pitch.
As it’s published by a University, it will be peer reviewed, in fact you are free to peer review it yourself. I’ll look forward to your assessment.
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Results from the trial - which involved 29 patients - have been released in a statement by the company uniQure, but have not yet been published in full for review by other specialists.
But fair, it does look like a big step I continue to be astounded how the UK biomed research continues to do so much despite the lack of funding by stupid cunts in charge.
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Which is why all universities rely so heavily on private companies to support their research. And it’s possibly why the NHS pays more for medication than most of our neighbours.
That is fucking massive.
Isn’t Huntington’s a form of MND?
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Yeah, it causes degradation of motor neurons, and hence the parkinsonian symptoms associated with it.
Anything to dissipate these symptoms and lengthen one’s life span as a consequence is incredibly welcome news. (Particularly given how prevalent it can be in transmission from parent to child)
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