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They were remarkably patient. If my brothers kids whine for that long they get to sit on the stairs for a couple of minutes until they can behave.

Agree with that. I don't have the energy for any such undertaking, but I think it might be time that chronic patients stand up together to the bad science underpinning the CBT/GET trials for all diseases impacted. It's seeping into so much stuff that a huge coalition should be possible. Would be...

I just have this thread on notice, I reckon as soon as it's published the news will pop up.

Yeah I heard before that googling before sleep might work, but it didn't do anything for me.

It is one of many things that I tried. I took a whack at it myself though, without any outside coercion and reading it from a book. The advice was that if you couldn't fall to sleep at the designated times you'd go do something. It were a horrible couple of weeks and wouldn't recommend it to...

Oh fuck off already, my mother hasn't regained her energy for 2 years now. She needs actual research, not this dog and pony show again.

I know nothing off the drug itself, that stuff is beyond me. But testing it on 3 people and making statements on the back of that doesn't inspire confidence. Only statement that you could imo feasibly make is that it would need more studying if there was a positive result in those people.

Does this really mean they only tried it on 3 patients or am I misunderstanding?

Don't wear yourself out on our account, much appreciated the parts you shared.

Sorry Registration for this event ended on October 23rd, 2021 12:00 PM Registration is closed for this event This is an on-line webinar brought to you by the Massachusetts ME/CFS and FM Association in Partnership With the National Institutes of Health. This event is a part of the...

I doubt I'd last long(that's what she said), but is there a way to watch this? I can't find a way on the site in the opening-post.

That's quite the line-up.

Sounds awfully familiar :D .

She read your post as to say "I am actually quite enraged by this statement", which was a brain fart from her end and one I made at first too. Had to do 2 takes, but that's more to do with our ME-brains than with your post.

That does make more sense. @Sean said it all in his response.

Even if it's "just" about chronic fatigue it is still incredibly ill-informed. It's what we've come to expect and have had to fight against even if we've had been given a clear cut diagnosis of M.E. and I agree cfs has muddied the waters significantly. I still don't think people with chronic...

I can read it just fine. Am also curious about the comment that was removed, if someone would be able to pm it to me I'd be grateful. Or just the general gist of the comment. There's still a comment below it that I can't make heads or tails of.

I'm not sending them shit! Sorry, couldn't resist. Hope they get enough samples.

The Dutch model isn't all that. We have much shorter wait lists for a host of treatments, but similarly to the UK we suffer from underfunding and a lot of useful treatments are taken off the table because of a cost/benefit analysis. A lot of Dutch people don't even visit the doctor when sick...

https://signformecfs.com/?page_id=126 Everything is explained there already :D . I'm going to lie down after yelling a few expletives first.