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@Lou Corsius represented us well here. The reporter didn't really go that much in-depth. He made a couple interesting points and some wishy-washy stuff imo. Maybe I'm asking too much here, but the issue really is quite black and white. Wouldn't be hard to see by looking even at recent evidence...

I was mild and destroyed myself too, and I have come to terms with that. I followed the wrong treatment plan(CBT/GET) and even if I hadn't, patients with ME/CFS can deteriorate. If you were like me, you went in with the best intentions and got your arse handed to you. I don't think...

I'm Dutch. ZonMw(Dutch NICE) allocated 28.5 million in funds. A lot of good can be done with that money. The BPS-group is currently preventing that. Without a BPS-group that money would all be going to proper biomedical science. They are actively working against us and so we have to fight them...

Progress nonetheless it seems. I hope the pressure keeps mounting on these idiots(Fink and others).

I know which advocacy group you mean, but I think it's just one guy. We do have different support groups where one is actively working against us/for BPS researchers.

This has me confused. Is this a separate guideline to the one used/produced by ZonMw? Are CFS and ME/CFS now different qualifications in the Netherlands?

It's better for it to me. It questions if psychology comes up with anything useful at all. It also questions the worth of psychologic studies whose foundation is built on other fraudulent studies. We know from experience how one twisted narrative can get turned into a money-making machine where...

As long as psychosomatic paradigms aren't sufficiently challenged they'll remain mainstream no matter how many diseases we understand and cure. It's implications not just medical but societal as well. Pull yourself up by your bootstraps works just as well for poor people as it does for us ME...

I don't know, but it sounds like the typical attitude of we don't know(for sure) yet, so it doesn't exist and we shouldn't pour resources into it. I think there is some funding behind lyme and co-infections research btw. Some wealthy donors putting in money. It seems to be the only way you get...

Have had ME diagnosed in 2003 and bartonella in 2010. Which is a co-infection or whatever of lyme. The clinician that diagnosed with me drew blood and took up a list of symptoms, the blood test came back positive and confirmed the clinical picture. After that I started googling bartonella. Those...

Already did, I amended my previous response. Also agree with this post btw. I think one of the most effective tools to deny support is pitting patient groups against each other. "Well, we could fund this research but we'd have to cut into that research". After that you just watch people fight...

I'm gonna read the entire post at a later date as I've got a bit of PEM going on atm. The last sentence of your TLDR captures what I meant, but I agree on the rest of the bolded section too. *edit* Read it now and I think I get the gist of it. I'd like to add that comparisons with other...

Most of it disseminated already too.

It isn't easy. I don't like signing letters that I haven't read and reading still costs me a lot of effort so I can't always contribute. Many struggle with that I suppose. I consider telling people about your illness advocacy though, an invisible disease made visible.

It also reminds me of when I was still able to coach football/soccer. One of the mothers had a kid with ME/CFS who regularly asked me for information which I in turn got from forums. I think mainly PR at that time. So there was this cascading effect of knowledge being shared. I mentioned Yong...

Yeah. I don't know how to do a massive effort, but I do think the individual effort is sometimes underestimated. A number of years back I asked people to sign the petition to ZonMw to change the definition of ME/CVS, I was on several tight-knit football(soccer) forums, my parents also asked...

The way I plan on go about doing this is letting the people I sometimes have contact with know that I have ME/CVS. I'm gonna use some of Yong's wording in describing PEM and the annihilation of possibility combined with saying I have no life or a future at the moment. After that I hope I can...

The Ed Yong piece has been going round my head for a while now as it gave me a new perspective on my disease too. I think it's safe to say that at this point I have no life and I have no future. That may sound dramatic but to me it isn't. It's stating the obvious. It doesn't make me depressed...

Oeeh, may I answer this one?!?

Will ask some family members to make a donation and send in some myself. Even though we lowly euro trash aren't being mentioned, just the pound and dollar people in their big mansions across the pond.