Cochrane ME/CFS GET review temporarily withdrawn

Clare Gerada: "As long as you take full accountability when things go wrong."

Just like the PACE crew have, obviously.

 

Can someone who tweets reply to Clare Gerada’s tweet at 9.14 this morning.

ETA: you got there first @Sasha .

 

'Problem at present is that pick &
Mix. Which is confusing - creates anxiety amongst carers and risks to all.'

Oh Dear, Dr Gerada, now we can see that you are just a religious believer in authority after all, not a critical scientist. People deserve to be treated with more respect - especially people from Yorkshire.

 

No I didn't, I'm not on Twitter.

Just on Witter.

 

Clare Gerada tweeted:

"As long as you take full accountability when things go wrong. You can’t have authority without accountability."

So true, hopefully the day will come when all who have for decades made their careers on the back of seriously ill ME patients, will be held accountable.

 

That tweet by Clare Gerada is priceless.

 

https://twitter.com/user/status/1052846120517419009

https://twitter.com/user/status/1052848153102311425

 

https://twitter.com/user/status/1052850748919304192

 

Or are they a "PITA" couple? I will leave you all to guess the acronym!

 

Would being married to SW constitute a COI?

 

I'm losing the plot here. Why does Clare Gerada need to treat her husband with more respect? What do you know that we don't? Better not answer that

 

I think the unexpressed statement behind patients having a COI is that patients are receiving disability benefits and do not want to be cured.

 

What does she think of e.g. the breast cancer lobby groups? Or does it depend on which lobby group you are? Why call them unrepresentative, when the NICE guidelines committee 2007 was unrepresentative?

 

It may be that, in part, but it possibly also goes back to the David, Wessely and Pelosi paper in (edit 1988) when this view was also expressed, blaming, if I remember, the close personal involvement with the outcome.

It was interesting that Mowbray also expressed the opinion that sufferers should not be involved in research but for the completely different, and understandable, reason that research is long, hard and painstaking and may tax their capacities.

 

I massively agree - the point here is not around whether ME/CFS is a physical or mental condition (and if, as I think most likely, it turns out to be neuroimmune, which of those categories would you use?). It's that even if ME/CFS were shown to be a mental illness, GET still wouldn't be an effective intervention. Getting into an all-in-the-head vs all-in-the-blood debate detracts from that key fact.

 

I want to come back to the Reuters news article. On twitter Adam Lowe gave some interesting insight into the reporter Kate Kelland. Apparently she has a track record of industry-biased reporting (https://usrtk.org/our-investigations/acc_loves_katekelland/) In an article about her reporting on glyphosate, Fair.org (https://fair.org/home/reuters-vs-un-cancer-agency-are-corporate-ties-influencing-science-coverage/) noted: “

“Raising further questions about her objectivity as a science reporter are Kelland’s ties to the Science Media Centre (SMC), a controversial nonprofit PR agency in the UK that connects scientists with reporters, and gets its largest block of funding from industry groups and companies, including chemical industry interests.

SMC, which has been called “science’s PR agency,” launched in 2002 partly as an effort to tamp down news stories driven by groups like Greenpeace and Friends of the Earth, according to its founding report. SMC has been accused of playing down the environmental and human health risks of some controversial products and technologies, according to multiple researchers who have studied the group.

Kelland’s bias in favor of the group is evident, as she appears in the SMC promotional video and the SMC promotional report, regularly attends SMC briefings, speaks at SMC workshops and attended meetings in India to discuss setting up an SMC office there.”​

So I guess that it was no coincidence that she got hold of the internal emails and the scoop. I suspect that the proponents of the Larun review wanted to break the news story, so they could control its (initial) framing.

 

Great comment by Jörgen Jelstad on Facebook (in Norwegian)

 

I'm sure they did. And I'm sure that Gerada, Sharpe et al are tweeting about it this morning to try and create a sense of 'outrage' amongst the scientific community so they can discredit this decision by Cochrane. It'll be interesting to see how much traction their version of the narrative gets, and who else (apart from the decreasing number of usual suspects) is willing to stand alongside them.