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They now resort to citing small studies to back the PACE trial, which doesn't seem to be able to stand alone by itself.

(Very poor) Response: Don't reject evidence from CFS therapies Michael Sharpe, Trudie Chalder & Jon Stone https://www.nature.com/articles/d41586-018-01285-x Edit: this response now has its own thread: https://www.s4me.info/threads/nature-publishes-response-from-sharpe-et-al.2253/

Great letter addressed to Archives of Disease in Childhood, signed by 21 signatories! (amongst them @Jonathan Edwards and @Carolyn Wilshire Thanks!)

http://sci-hub.tw/http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1280114?journalCode=rftg20

With the problem of objective outcomes showing no improvment, I would also talk about the long term follow up PACE study that shows a null result. Despite the fact that they tried to spin that in the abstract, the findings, according to the PACE trial leaders themselves, is that "There was...

"For most of us", what a belittlement of what we are going through. This really portrais us as sissies that can't cope with common benign problems... I'd like Kasia to make sense of "Body Talk".

Great work! Thanks to @Graham @Carolyn Wilshire and everyone involved. I am really pleased to see that S4ME is starting to be a real platform for advocacy!

Dr Neigel Speight commented under @Spoonseeker 's blog:

Although talking of Nassar's victims, a lot is relevant to our situation, IMO. That is something that is at the core of the BPS theory I think, we must have done something wrong that caused us to be sick, because if we hadn't we wouldn't be sick. We must have broken some unwritten rule. So...

Also available in France:

Without patients' scientific skills the criticism of the BPS view would have been impossible.

That's pretty ironic to defend academics in a disease where academics have failed us constantly. Of course, there are patients who think of themselves as scientific genius while talking BS. (I could also say that about a lot of the so-called experts that have been in charge of ME CFS these last...

Are you aware that the release of the PACE data which led to the reanalysis of the trial was achieved thanks to Allem Matthees, a patient? If we had had to wait for Sharpe and co to gently release the data to other scientists with different views, we'd be still waiting.

https://www.hhs.gov/about/budget/fy-2018-hhs-contingency-staffing-plan/index.html#summary-of-activities Also this: and

This post has been copled and following discussion moved to a new thread: Open data and the role of citizen scientists in ME/CFS research p19:

This post has been copied and following discussion moved from: COFFI - The international collaborative on fatigue following infection p19:

http://sci-hub.tw/http://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1426086?journalCode=rftg20

What a fine selection of researchers! Pity Per Fink and Michael Sharpe aren't there. A few Dutchmen would have been great too. :bag: Edit: For those who thought Esther Crawley was serious when she said ME is biological, her association with these people leaves no doubt...