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3.3 billion per annum is for the UK alone?

I'd imagine a lot of people actually had a pretty good life. I did. Found school to be incredibly boring but even there in recess or when we cut class we had a lot of fun, going out on weekends, playing sports and going to the gym was great. Something threw a spanner in the works there. If...

They'd simply discuss it at seminars with likeminded assholes instead of an a forum and we'd never know about it. I personally prefer this as it shines a light on a part of the profession's thinking.

Sounds awfully familiar yeah. When my health went up over the past 2 years so did my tolerance to heat. I do experience symptom exacerbation with cold too though.

She's not wrong...

I think that just by saying mental health is so stigmatized they're in fact stigmatizing mental health.

I don't have Visa or Maestro, the Dutch system works differently. We get a card from our bank and we pay for stuff with that or with our phones mostly. Used to have to push them into pin-machines at supermarket's and then type in your code, now you can just swipe them or even use your phone with...

Donating to your project is probably one of the most cost-effective things patients of any description could do. Chipping away at the religious BPS-paradigm is having and is gonna have a profound impact on people's lives even those unaware of who you are and what you're doing. I do wish there...

Happy about this actually. I do feel they might be on to something and their researchers will at least do their due diligence.

Yeah, I think there is a strong possibility that for at least a subset of patients there's something like that going on. I've had EBV as regular bloodwork before getting my M.E. diagnosis showed low levels of it in the blood, whether active or inactive. Regular screening also revealed...

There's really a chance that it's just a big donation from someone that will triple every donation made in November or something like that. I'm a donator myself and will continue to be, because I support the work that they do. Their messaging on the other hand....

ME CVS Nederland I doubt is gonna sign either way. They sometimes pay lip-service to biomedical stuff but it's a BPS-outfit as far as I know. https://mecentraal.wordpress.com/2023/06/12/boekje-open/ More about that in the link. From reading mecentraal I also got the following organisations...

Gotta admit that as a man it's a very difficult issue for me to grasp. There was a Dutch comedian(Peter Pannekoek) that made a prison-analogy in one of his stand-ups, where in prison you constantly feel vulnerable because something might happen to you that you don't agree with whether it be...

I hope your ME Associations will get a say in all this. It's easy for bad researchers to distort this process if given an opportunity.

I've been watching the Polybio and Swedish symposium's for a bit and it does not only seem to have given us a boost but also diseases like SLE, Lyme, FM, GWS and a bunch more. I see IBS getting mentions too, I think they were more or less in the same boat as us with regards to attitudes and...

Could do nothing comes from, ik kan er niks mee. Meaning he simply doesn't have a method for treating. The bit about calling us nutters and ridiculing us behind closed doors is very very damning about the overall attitude though.

Might have finally reached a stage where they fucked to many of us over. I think that's also where Knoop went wrong. He went after LC-patients with harmful treatments, a group that is composed of a lot of physicians, nurses etc. who were impacted during the pandemic. He used to be up against a...

Hope something good comes of it, the terminology CFS/ME usually doesn't bode well.

Watching it was actually pretty doable after splitting it into 10/15 minutes bursts. The most interesting talk for me was that of Putrino. He wasn't talking about any findings, just that they've set up a facility to study post-infectious or infectious diseases with an aim to make treatments...

Perfection being the enemy of good is what they call that in NL and I think in English too. I think the WASGF3 finding illustrates that point to a degree, starts out with a woman writing to a researcher and that researcher doing an n=1 study. Might become something more. I've been trying to get...