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That came from activism and influencing researchers to do the right thing, not our scientific skills. And that's irrelevant now, because we've got lots of researchers that can represent us.

We have good scientists representing us that can lead the way. If possible, it's far more effective for them to lead the way, rather than trying to do it ourselves. You're very right that patients play an extremely important role in making things happen, but that comes from activism and...

The greatest concern is whether they allow other researchers like Carolyn Wilshire, Jonathan Edwards, Ron Davis, Jose Montoya, Ian Lipkin, etc. to access the data. Most of those researchers would be quite concerned about the data in this collaboration. That, though, is a different question to...

I personally think that's pretty fair. Almost every scientist would tell you that people without the necessary training and experience usually have very great overconfidence in their scientific skills and analytical ability, and when you have too many citizen scientists coming in with their own...

That's also my experience with CBT at CFS clinics. It was just about management, support, and any other issues I wanted to talk about. The psychologist that I saw told me that CFS was physical, and the CBT was about managing it.

I was more referring to solving the problem by earmarking more funding in general, which, if it was a significant amount, would attract a lot more grant applications* and mean that much more grants are given. This has been done with many other conditions by congress, and it's already been done...

Even if it's actually within their control to influence the outcome of grant applications by the way that they select grant reviewers, the best way to fix that is still through congress. Public servants don't actually care too much what the public think, because it isn't their job to care about...

The way that we won in Norway I guess. In Norway I think it was the Prime Minister that lead the change. But this is just like any other political issue. Lots of other conditions have secured great increases in funding because they kept lobbying politicians about it.

I might be wrong about this - but I don't think it's fully within their control whether the grants are awarded. I think the legislation dictates that they have to let each grant application be reviewed by some external scientists, and it isn't within their control what decision is made. That's...

No, that's actually how funding agencies work. They don't generally earmark funds, they just get grant applications, then those applications are reviewed by one or two committees, and then they are chosen. You can read about the NIH grants process here...

I don't know how much it's actually within the control of the NIH to earmark funds or change the grant awarding process without political support. So, maybe it is possible that the NIH cares*, it's just that politicians don't. Also didn't Koroshetz say just after that joke that he actually...

I think when he says "It's hard to see how [that criticism is fair] when you hear stories", despite the wording, he really means the criticism of the medical community is fair. Because the article goes on to say "however", and he explains how the blurry diagnosis means the medical system finds...

I think that was a very good talk. He seems like a competent scientist, and the comments he made towards the end about attitudes towards earmarking funding in institutions and governments were interesting.

In this case, especially given that they go on about a theory for why managing energy and not exacerbating works (the energy envelope), that strongly implies that they mean it. It doesn't make any sense otherwise. If their goal is to support hard GET, then they are working very hard against...

No, I'm very far from recovered. I said earlier that it was only a little helpful. The important thing though, is at least it wasn't harmful, and I'm grateful for the extra bit of exercise I've been able to do.

You can't explicitly tell patients not to exacerbate themselves, and then make them ignore that. That is a direct contradiction. In addition, as I said earlier, it isn't in their interests to write they told patients not to exacerbate themselves, if the goal of their study is "hard GET" as you...

The diagrams that you've shown show that APT patient's fatigue scores do actually improve over time, by about four points on that scale. But yes, using the PACE trial as evidence for pacing being effective is questionable. I've told you all about what I've experienced, and everyone has...

I'm pretty sure it's well established that insomnia, a delayed sleep cycle and sleep disturbances is pretty common in CFS. Sleep disturbance is even in the diagnostic criteria. And if you actually look at the data in the PACE trial, it does show people's fatigue scores in the pacing group...

Well, the people I saw actually seemed to think pacing was more important than GET. It also doesn't make any sense for the group behind that study to say one of their interventions was to explicitly instruct patients not to exacerbate themselves, if their interest is to push patients beyond...

Well, it seems to be what a lot of practitioners call GET. It still involves a gradual increase in exercise, so I'd say calling it GET is pretty justified. It's been portrayed to me as how GET is applied nowadays. The group behind that study seem to have done quite a few studies relating to GET...