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That's the very first thing said in the CFS guidelines under Management: But it gets ignored, just like the recommendation to use heart rate monitors with GET gets ignored. When NICE creates a guideline which makes a disease sound psychosomatic, they are sending very mixed messages with those...

I think it's too late to register as a stakeholder. This forum was doing so pretty close to a deadline for it, and that was months ago from what I recall.

The problem is that it's relatively easy for quacks to deliberately create and exploit methadological flaws in their own research to "prove" that there is no difference between patients and controls. You use fewer patients, and add more control groups - this paper is doing both. You can also add...

That's not acceptable - they have no excuse to exclude patients due to being regional, while allowing regional psychobabblers to attend.

Also was going to be part of MEGA. Here's what he said about PACE: Edited to add: He also co-authored a PACE paper claiming CBT and GET are safe: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4065570/

But why's it being run by someone whose interest is in mood disorders? And with the lower patient numbers and extra control group, it looks like an attempt to generate a false negative result.

But the universities are generally not paying attention to the quality of studies produced by their employees. If the universities are responsible for publishing those papers, suddenly it's going to be a much bigger problem if there's a controversy about one of their papers.

The primary goal of a journal is to make a profit. Some universities also are profit-driven, but that varies between countries and institutions, and they are always driven to improve their reputation. A journal isn't going to be too bothered if it's reputation takes a hit so long as it's still...

No one is proposing anarchy, and I think it's extremely likely that processes and standards would remain even if peer review ceases to be the main safeguard. If there's an institutional publishing scheme at all of the Universities, for example, some would certainly be of poor quality. But there...

No, it's not what is happening now. The peer review process is still being treated as largely infallible, and post-publication commentary is being delegitimized on that basis. The primary pro-PACE argument is still appeal to authority - that the objections are from crazy/ignorant patients, and...

I think the difference now is that patients are ready to riot if NICE keeps playing games with our lives. There's also been a lot more evidence disproving the efficacy of CBT and GET, and some (additional?) large patient surveys of their harms. A lot of work has been published regarding the...

Regarding stakeholder input into the scope: They don't explicitly say that unrelated groups have less of a say, but that might end up being the case typically. They do reserve the right to pick and choose who attends if necessary.

There's nearly 200 stakeholders listed, but only 37 showed up to the first stakeholder meeting. So I'd be willing to bet most of them won't be involved at all.

There's a list of the steps taking in a review at https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/how-we-develop-nice-guidelines So it sounds like we're done with Step 1 (Topic Chosen) and this is what it says regarding Scope: More details of establishing...

She blatantly omits PEM while calling it NICE. Should we omit CCC studies too, if she claims to use those criteria while not actually doing so?

They now have a list of stakeholders updated as of February 6 2018: https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list S4ME is on there :)

Another big problem is that they're assessing the evidence before defining the disease. Someone kept bringing that problem up, and apparently kept getting ignored. So Oxford studies are happily being applied, even though the NICE criteria ended up being vastly different from Oxford criteria...

This bit from the 250705 file is interesting: So it would suggest that patient representatives cannot look at the studies, and are entirely reliant upon the interpretations by those with institutional or other access. I think this is a very big problem, as it effectively excludes all patient...

COPE exists to protect its members from public claims of acting inappropriately. It's pretending to be something which it is not, and there's really no point in complaining about what its members are doing.

I thought it actually made for a decent contrast, especially since they specified that she didn't have ME. They were showing severe ME patients before and after that, and it was a stark difference. And considering the official line on ME in the Netherlands is purely psychosomatic, I thought it...