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What role should the public play in science? - Science Weekly podcast
@iansample interviews @profmsharpe about the #PACEtrial https://www.theguardian.com/science/audio/2018/nov/02/what-role-should-the-public-play-in-science-science-weekly-podcast
@iansample interviews @profmsharpe about the #PACEtrial https://www.theguardian.com/science/audio/2018/nov/02/what-role-should-the-public-play-in-science-science-weekly-podcast
In the podcast, @iansample says "it is not clear what the Cochrane complaint was about". Errr.... Ian.... maybe do some background reading? https://twitter.com/TomKindlon/status/1052661096966963202
What I find most annoying is the frequent assertion that those campaigning on this issue are just like anti-vaxxers or climate change deniers. This is a total misrepresentation of what is going on here, and everyone concerned should be ashamed of themselves.
I couldn't imagine a more pro-science group of people than those #pwme who campaign on this issue. It is quite extraordinary!
Another gem. (I can't link direct, because, oddly, I'm blocked...)
Those who have made many of the complaints and FOI requests to journals, funders and universities ARE patients or #pwME.
That this effort has cost some their lives or rendered them severely incapacitated is lost on @profmsharpe.
That this effort has cost some their lives or rendered them severely incapacitated is lost on @profmsharpe.
I've now written to The Guardian about this podcast. The essence of my letter is on my blog: https://lucibee.wordpress.com/2018/11/07/the-guardians-science-weekly-podcast-on-2-november-2018/
Updating about the update: https://twitter.com/_Lucibee/status/1120802363554574337
Still waiting for a decision on the Cochrane review... (don't hold your breath, it was supposed to come at the end of May 2019).
An update has just appeared on the Science Weekly podcast page: https://www.theguardian.com/science/audio/2018/nov/02/what-role-should-the-public-play-in-science-science-weekly-podcast
It says: "Since publishing, we received complaints. We value this feedback and we would like to highlight:
(cont...)
(cont...)
"1. The intention was to look at the relationship between science and the public. Chronic Fatigue Syndrome (aka. myalgic encephalomyelitis) was intended as an example of the broader theme."
"2. The response from Cochrane’s Editor we quoted from a Reuters piece was a part inclusion of this statement [link to Kate Kelland's Reuter's article]." https://uk.reuters.com/article/us-health-chronicfatigue-dispute/exclusive-science-journal-to-withdraw-chronic-fatigue-review-amid-patient-activist-complaints-idUKKCN1MR2PI
"3. The episode included two authors of the #PACEtrial. The trial is considered controversial and has received criticisms. It has not been retracted."
"4. Since publishing, the complainant has been named by Cochrane. And the details of the complaints have been made publicly available. Read them here.
Updated: 07/08/19." http://www.virology.ws/wp-content/uploads/2019/03/Cochrane-Report-on-Courtney-Complaint-1.pdf
Updated: 07/08/19." http://www.virology.ws/wp-content/uploads/2019/03/Cochrane-Report-on-Courtney-Complaint-1.pdf
Changes to interpretation in Cochrane review:
However, Cochrane have yet to make *any* of these changes to the review. (Unless, of course, TG have jumped the gun and these are about to be published... @Healthy_Control ?)
And Cochrane revealed this information in April 2019. Why has it taken @guardianscience so long to respond?
Here is @davidtuller1 's blog about Bob's complaint. This is from March 2019. http://www.virology.ws/2019/03/12/trial-by-error-cochranes-report-on-courtneys-complaint/
It seems that the only new addition to @guardianscience 's statement is point 4, which was already known about in April 2019. To add that now just seems weird.
I thought they were a news organisation
https://twitter.com/_Lucibee/status/1120802363554574337
I thought they were a news organisation
https://twitter.com/_Lucibee/status/1120802363554574337
And not only do they seem to have failed to act like a news organisation, they seem to be oblivious as to where or what the real story actually is. To do this on or around #SevereMEday , when so many severely affected patients have GIVEN THEIR LIVES to get to the truth...
... is quite simply negligent and appals the hell out of me. 
This blog from "ME/CFS skeptic" explains a bit more: https://mecfsskeptic.wordpress.com/2019/08/08/the-guardians-science-weekly-podcast-and-the-cochrane-review/
The bottom line is that the complainants still have not been given right of reply on this issue. And until they are heard - publicly - the @guardian and @guardianscience are neglecting their journalistic duties.
If something doesn't happen very soon, I think quite a few of us will be considering making a formal complaint to @IpsoNews
However, I'd rather not go down that route. I'd rather that @iansample and @kkelland take a good (objective) look at why were are where we are. Who told them about the Cochrane email? Why did Sharpe go on a Twitter fishing exercise in the run up to the Reuters news piece?
Did Sample know that Kelland was already working on a Special Report for Reuters on this issue? I'd like to know who commissioned that report.
It's not a good look when scientists use the media to try and overturn a decision against them, particularly if that decision was made in the patients' best interest.
And that's where the real story lies.
And that's where the real story lies.
