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Oh the amounts of lives we could save if more people were willing to stand on a circle and yell NO! to their disease.

He does have form, but I don't think it'll be good for him if people actually started looking into what he's done for us so far. I'm also not even sure that we have to be polite. We've self-censored enough over the past decades and we still get dismissed by these people.

The years of research-trope always feels like a kick in the nards when it comes from influential people/organizations. Whilst technically true I doubt 3 guys and their lab robot processing blood results for 20 years would constitute years of research for any other line of inquiry. And yes I...

I think this is one of those things where criticism gets ignored until it reaches critical mass. It's relatively easy for people to ignore 50 critical tweets. It becomes less easy the bigger in number the criticisms become. It is still a pretty small group that's on to his wrongdoings. I don't...

A compounding pharmacy made 25/50/75 and 100 mg enteric coated pills. I think they even make 150 mg pills.

I meant 25 mg, sorry. Another reason why this stuff is better to be taken under supervision than on the basis of some wackadoodle(me) giving their treatment plan.

Started on 0,25mg every 3 days, titrated up very very very gradually to 3x100 a day. Weighed about 100/110 kgs at the time, I'm 80 kg nowadays I think the "maximum" dosage is dependent on weight. Also I had enteric coated pills, I think the way in which it is administered matters. Once again, I...

I've had a massive improvement on this, but I was a bit lucky. I got prescribed small doses at first then slowly worked my way up to a full dose. It was under supervision, and I think there's no way someone should start using it on their own. But to give the complete picture: -I was homebound...

If there was something out there that'd fix me up but made me sterile I'd bite their hand of. Can always adopt a couple of those little turds. Or at the age I'm at(40) any woman that I manage to attract will likely already have a few. That said, Cyclophosphamide does seem a bit like a horror-drug.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/#:~:text=Myalgic encephalomyelitis, also called chronic,can affect anyone, including children. I'm googling from the Netherlands, though my google is set to English. I get wording based on the NHS website too. The wording itself isn't...

Never knew unveiling was a synonym for destroying. Learn something new every day....

Don't know if there's a collective "we" and if the Bateman Horne center would fall under that. Imo there is good practice and bad practice. Prescribing things without good evidence would fall into the latter, whether it be by psychologists or clinicians. It's possible or probable even that the...

I see that more as an attempt to let the discussion fade into obscurity, then publish the rebuttal in the hopes no one reads it. Which they might still achieve. I expect NICE to come in strong though, hope it gets a wide audience.

The vote will be on the 15th of February.

I wish them the best of luck going up against the NHS. If the government and insurers were to do right by the people they've made sick or the people they denied adequate care they'd be out of billions. It's a small fine to pay for destroying peoples lives.

I wouldn't promote those guys @Dolphin @Tom Kindlon , they're the wrongn's that have helped set up the ME Lines project of Judith Rosmalen and stuffed other charities in the process.

A JAK-inhibitor. I think filgotinib and possibly upadicitinib were or are being tested in ME?

I was unfair to the psychologist in this episode. At least with regards to what she said here, I don't know her work. She was talking in the "us"-sense. Meaning that telling people to move was what the profession was doing, she says very plainly that they were wrong. There are a lot of good...

Thanks, I'll watch it on the telly later today. What the psychologist says about getting people to move again when they've been on the couch just doesn't make sense to me in any form. Surely if someone who was previously active remains on the couch, that should then be an indication that...

I've added the direct youtube link @Grigor as the tweet somehow doesn't appear in the topic. Was this from BNN Kassa(Dutch show) on Saturday?