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The committee has added a new update on the petition. In summary, we say there's no news from Cochrane since the December update from Hilda, and no news on S4ME's committee complaints since we heard some of them are being considered. Petition update...

I'm not clear on what grounds you suggest many similarities between ME and Parkinsons disease. They seem quite different to me in main symptoms and course of the disease.

I agree, if we can't even get clear definitions of cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, post-exertional malaise and fatigue, how can we decide which should be included in diagnostic criteria. Perhaps that's the direction that should be explored more fully. When...

That's harder to do if based entirely on quoting SW's own words, and quoting relevant professionals like Steve Lubet.

I would hope anyone here who decides to write to the organisation would do so factually and politely.

I think it is well meant and the need is urgent for doctors to take notice of the NICE guidelines. The ongoing cases of awful mistreatment are heartbreaking. But I haven't signed the letter. The bit that stopped me was the same one Jonathan has highlighted.

Contact details for the Institute of Medical Ethics on this page: https://ime-uk.org/contact/ There's an email address and a contact form.

Given that pacing is a management strategy not a treatment, I'm not sure how effectiveness would be measured. It might be interesting to do a crossover trial of several months comparing different versions of pacing Versions could include heart rate monitoring with as rigid as possible staying...

I note the original tweet posted here is from the student council of the institute of medical ethics. Does the Institute itself have a contact address that could be written to to complain about Wessely being a speaker to their student event? I'll see what I can find.

Well done Robert and others. One of the rare moments I slightly regret not still being on Twitter. Are there any replies defending Wessely?

That's really sickening that they use other people's tragedy to advertise quackery. I hope they get lots of complaints.

Thanks for explaining. Good to hear it has good audience reach.

Very good, thank you. What readership can be expected on the website where it's published?

So the Long Covid version of BACME?

Perhaps someone could suggest to her that in recompense for the harm she has done she donate all the profit from the first week's sales after the program went out to biomedical ME research. Or alternatively that she close the company down and return everyone's money.

I assume it's part of the NIH intramural study. To answer my own question, yes it is.

So what they have demonstrated is that questionnaires are not a reliable basis of assessing treatment effectiveness.

I got the impression that it was as much to do with him being an early career researcher who needed to move on to a post with more prospects of long term funding, tenure etc. It wouldn't be reasonable to hold back his career on the basis of a few thousand pounds funding for a single OMF funded...

In case the researchers are reading this thread, and want to use the forum as part of future studies, I thought I'd let you know that we have a policy of not allowing the forum to be used as a data source for research. We do however, encourage researchers to join the forum and discuss their...

I agree. I hope the authors at least alerted the members of the FB groups whose data was used that they were doing so, and asked permission from any individuals whose words they quoted. In case any non members are reading this thread, you might like to know that this forum now has a policy...