Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Looks like the 3rd anniversary is Hilda's appointment to lead the PAG. But, as you say, 4 years since Tovey said the current review should be withdrawn.

The sense of urgency would disgrace a snail.

It's both shocking and unsurprising given the powerful forces behind the scenes. They have so many damaged lives on their hands. Even more since the advent of Long Covid.
 
Hutan said:
:) Well, that prompted a google search that contributes to my search history surely defying any categorisation. I still have no idea what extra bit of material Jonathan means. Regardless, I don't think it is a perfect analogy, because Cochrane does continue to be visible, and in fact highly influential, not least with respect to propping up the idea of exercise as a therapy for ME/CFS.
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Selvage:
1
a
: the edge on either side of a woven or flat-knitted fabric so finished as to prevent raveling
specifically : a narrow border often of different or heavier threads than the fabric and sometimes in a different weave
b
: an edge (as of fabric or paper) meant to be cut off and discarded
2
: an outer or peripheral part : border, edge

Etymology

Middle English selfegge, selvage, from self self + egge edge (after Middle Dutch selfegghe)
 
But, can't your hand actually reach to the bottom of the pocket? The diagonal line across is attaching the pocket to outside facing denim. Unlike Cochrane, I don't think there is anything that isn't serving a useful purpose there. (The little pocket on the outside is arguable.)

(@CRG In this case Selvedge is the name of a sort of a cotton, as here with the pink and white stripe that is a selvedge - Japanese selvedge denim being top quality. In my googling I learned that the pocket is traditionally where the details of the brand and the model are printed. )
 
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I think, at the very least, that a lot of the people involved thought it was a genuine process. I am sure that Hilda believed that it was genuine and I think she thought that she was in control of it. What I can't understand is why she and others involved who care about people with ME/CFS have allowed this to drag on with nothing achieved. Do they still believe that something good is going to come out of it that will negate all the harm produced by the old review continuing to stand for all these years?
 
Hutan said:
But, can't your hand actually reach to the bottom of the pocket?
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You can get to the bottom of the pocket but there is still some fabric beyond the stitching. I admit that this is a feeble modern example of only about 5mm beyond the pocket. I well remember trousers where the spare was a centimetre or more and got increasingly frayed in the washing machine.

This is n't really a selvage as I understand it, unless it is stitched - as it typically is on the turn-ups.
image.jpeg
But there the spare material is turned back. For pockets and for Cochrane the material seems to continue and yet cease to do any visible job. I agree that Cochrane may still be influential but I strongly suspect that ongoing work is increasingly of this sort of 'virtual' form - and in years to come will be seen as part of the meaningless handle-turning of a culture that has lost its bearings. Unless of course the culture gets further further dissociated from any bearings.

I just get the strong feeling that Cochrane is now run by people who are there because they belong to the woodwork and won't say anything uncomfortable. Once that happens an organisation is dead wood.
 
I had no idea that your expertise extended to jeans, Jo. Will you be my phone a friend if I get on Who Wants to be a Millionaire?

I’m thinking that Cochrane is more like a dummy pocket – it looks like a pocket but it’s only there for aesthetic purposes.

Meanwhile, I’ve emailed Hilda to ask if she can tell us any more about what’s happening.
 
Robert 1973 said:
I’m thinking that Cochrane is more like a dummy pocket – it looks like a pocket but it’s only there for aesthetic purposes.
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In a way yes. I was looking for a metaphor for something that seemed to be useful but at some point imperceptibly became an invisible appendage.

I have made jeans in my time, but not for maybe fifty years.
 
I wrote this a day ago but didn't post it because of its uncertainty.

I believe that a day or two ago I scanned (intending to return to it because it was long) a lengthy blog/ article written by @Hilda Bastian in which she discusses the Pace story and moves on to Cochrane. Or it must be possible I dreamt it. I remember /or dreamt a mention of @Tom Kindlon and Robert Saunders, and also @Caroline Struthers .

The problem is that I can't remember where I scanned it and extensive google searches in the last couple of hours have not produced it which has made me doubt if it really exists. Does it exist?

Apologies if I've started an invalid hare running. I thought someone else might have better luck or know where Hilda places her writing. It wasn't twitter. Or maybe I imagined it.
 
Binkie4 said:
I wrote this a day ago but didn't post it because of its uncertainty.

I believe that a day or two ago I scanned (intending to return to it because it was long) a lengthy blog/ article written by @Hilda Bastian in which she discusses the Pace story and moves on to Cochrane. Or it must be possible I dreamt it. I remember /or dreamt a mention of @Tom Kindlon and Robert Saunders, and also @Caroline Struthers .

The problem is that I can't remember where I scanned it and extensive google searches in the last couple of hours have not produced it which has made me doubt if it really exists. Does it exist?

Apologies if I've started an invalid hare running. I thought someone else might have better luck or know where Hilda places her writing. It wasn't twitter. Or maybe I imagined it.
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Was it this, on her blog?

https://absolutelymaybe.plos.org/20...-the-me-cfs-exercise-dispute-matters-so-much/
 
Binkie4 said:
Thank you @inox. I think it was. It has @Tom Kindlon and Robert Saunders. There is a reference to Carolyn Wiltshire. Apologies to @Caroline Struthers for that misremembering.
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It wasn’t me that Hilda referred to in her blog, it was the late great Robert Courtney (aka Bob) who wrote to Tovey and, along with Tom, was instrumental in highlighting the problems with the Cochrane reviews.

I never really knew Bob but I have great respect for him, and I am exceedingly grateful for all his brilliant work. I know that – like his friend Graham – he is dearly missed but all those who knew him on here.

[edit: NB the blog was written in Feb 2019]
 
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Are the different M.E. organizations invested in this? I don't know from memory, I've seen a couple of people in this thread applying pressure but can't remember if there's a more concerted effort going on to get this scrapped. If not, would that be helpful? This seems to be one of the major things still holding us back. Not meant to diminish the enormous amounts of work people have put into it already btw.
 
pure speculation but, I wonder if Paul Garner is pulling any strings?

his bio on LSTM:
Paul was previously Co-ordinator of the Centre for Evidence Synthesis in Global Health, Co-ordinating Editor of the Cochrane Infectious Diseases Group(link is external)(opens in a new tab), and Director of the Research, Evidence & Development Initiative(link is external)(opens in a new tab) (READ-It).

He stepped back from full-time employment in July 2022 and continues as emeritus in areas that he selects. This includes: continuing support to academic staff carrying out systematic reviews on infectious diseases, developing further research interests in the post-viral syndrome, and continuing involvement in development of guideline methods.

During COVID-19 pandemic, Paul developed the post-COVID-19 syndrome. He first became an advocate for it to be recognised, and subsequently that people can recover, through changing their beliefs in what the symptoms mean and intensive behavioural approaches. His mass media outputs are listed here(link is external)(opens in a new tab), and he continues to work in post-viral fatigue syndromes with a variety of specialists in global networks intent on helping people recover.

Advisory boards

  • Chair of the Consumer Advisory Group, The Collaborative on Fatigue Following Infection 2020- (COFFI)
  • Member of the Strategic Advisory Group for the COVID-19 Longitudinal Health and Wellbeing National Core Study and the National Convalescence Core Study 2020-
  • Member of the READ-It Advisory Group (August 2022-)
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https://www.lstmed.ac.uk/about/people/professor-paul-garner
 
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