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

Increasing sympathy for the pwME who were drawn into the fiasco of an IAG and review group that appears to have got nowhere. I think if I were one of them I would decide it's high time to turn whistle-blower and reveal just what has or hasn't been going on.
 
bobbler said:
option 1 (the obvious-seeming right now):
But it does feel like initially: now you have your reply that can/could now be sent to the Charity Commission with a pretty straightforward question: is that how any organisation should deal with complaints about anything, particularly a where she herself [in prior email] noted "we recognise the need to look at it impartially" in the previous email, which is quite a different thing to 'have been noted' without any such process? [being the question]
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So I have done that now. Will be interesting to hear what the Charity Commission come up with
 
Sid said:
Cochrane sucks these days
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[DELETED TEXT - Apologies Sid --- I really like your posts --- did Cochrane have a period when they seemed + ve?]

EDIT - I haven't followed Cochrane as closely as many of you, but yes, the early promise hasn't been delivered --- despite constructive attempts here & elsewhere.
 
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FMMM1 said:
Apologies Sid --- I really like your posts --- did Cochrane have a period when they seemed + ve?
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I think most people (people outside academia, clinicians, patients) still think Cochrane is +ve. However, I would say at best it is passive/neutral (most reviews say, more better quality research is needed). At best reviews are good at exposing poor past research, and could also be used to celebrate and emulate good past research which is, as we know, less common. I honestly don't understand why they don't do this systematically across all trials. It has a unique (but poorly curated) database CENTRAL. CENTRAL is the Trials tab in the Cochrane search window which now has nearly two million records (https://www.cochranelibrary.com/central). The records are of journal articles reporting trials, rather than trials. Many trials have several papers reporting them. It would therefore be much more useful to have a register of the trials themselves. Cochrane have this, but they don't publish it (https://community.cochrane.org/help/tools-and-software/crs-cochrane-register-studies/about-crs). Cochrane still insist on reporting a table of "trial characteristics" within reviews, so a trial will be looked at separately each time it's included in a review - the same trial maybe included in several reviews - eg. PACE would be included in the Exercise for CFS review and the CBT for CFS review. Such a waste of time and resources to do it this way. But Cochrane gonna Cochrane...
 
Caroline Struthers said:
At best reviews are good at exposing poor past research, and could also be used to celebrate and emulate good past research which is, as we know, less common.
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You detail it much more precisely.

I find it frustrating that they don't do the obvious ---e.g. simply highlight flawed research -- (one example) use of subjective outcome criteria in unblinded studies. It seems their internal structures don't allow them freedom to e.g. review the exercise review --- downgrade the evidence and move on. Seems defense is their chief strategy.

I've added my post above.
 
The @RACGP have told ME/CFS Australia that they will not remove that #PACE-based HANDI guide until @cochranecollab
(Cochrane) produce a new systematic review of exercise in CFS. Meanwhile, Cochrane have retracted their previous review. But apparently that's not enough.
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I can't even think of a way this is actually legitimate. All they're doing is basically throwing the ball elsewhere so that no one has to account for anything. This is incredibly cowardice and dereliction of duty.

It's really hard to put into calm words how much anger is deserved at Cochrane over this. How they can do this to millions of people is simply revolting, a morally bankrupt institution.
 
Andy said:
I have just sent the following to pressoffice@cochrane.org, copied to Cochrane.IAG@gmail.com.

"Hello,

As it has been a month since your previous response, please can you advise me of any progress that you have made in that time.

Thanks in anticipation."


Additional note, I am still to receive a response to my original email from Cochrane.IAG@gmail.com; I received the same automatic message as last time to today's email.
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Sent this morning to Cochrane Press Office and IAG email addresses,

"Hello,

As it has now been two months since your previous response, and 39 months since the update was first announced, please can you advise me of any progress that you have made in that time.

Thanks in anticipation.

Andy"

Received the standard automated response from IAG email address.
 
Any journalists prepared to expose this actual medical scandal?

Our lives are slipping away while Cochrane continues it's brazen power game. Abuse of power. Some of us won't live long enough to see a time when we are safe using medical services, let alone live long enough to see actual treatments that don't harm us used in national medical services. Suggesting it all 'takes time' is just a twisted joke, we've been hearing that apologist trash for decades.
 
Sent today to the complaints address complaints@cochrane.org about the exercise review update. They say they reply within 5 days.


From: Caroline Struthers
Sent: 17 May 2023 14:48
To: Complaints
Cc: Catherine Spencer; cochrane.iag@gmail.com; support@cochrane.org
Subject: Complaint: Poor management of Cochrane’s “Stakeholder engagement in high-profile
reviews pilot”

Dear Complaints Department (cc Catherine Spencer, Hilda Bastian, Governing Board)

I am writing in a personal capacity and not as a representative of my employer.

It is now nearly two months since I made a formal complaint about the poor management of Cochrane’s
“Stakeholder engagement in high-profile reviews pilot. My latest message to the lead of the
independent advisory group from 24 February this year was not answered.

It seems Cochrane, an international charity in receipt of public funding, doesn’t follow its own
complaints procedure, and also doesn’t have a mechanism to investigate complaints
independently. Please could you confirm this is the case and I can refer it to the Charity Commission.

Please could you confirm you have forwarded this message to the Governing Board?

With best wishes

Caroline

Caroline Struthers
Senior EQUATOR Research Fellow
 
Caroline Struthers said:
Sent today to the complaints address complaints@cochrane.org about the exercise review update. They say they reply within 5 days.


From: Caroline Struthers
Sent: 17 May 2023 14:48
To: Complaints
Cc: Catherine Spencer; cochrane.iag@gmail.com; support@cochrane.org
Subject: Complaint: Poor management of Cochrane’s “Stakeholder engagement in high-profile
reviews pilot”

Dear Complaints Department (cc Catherine Spencer, Hilda Bastian, Governing Board)

I am writing in a personal capacity and not as a representative of my employer.

It is now nearly two months since I made a formal complaint about the poor management of Cochrane’s
“Stakeholder engagement in high-profile reviews pilot. My latest message to the lead of the
independent advisory group from 24 February this year was not answered.

It seems Cochrane, an international charity in receipt of public funding, doesn’t follow its own
complaints procedure, and also doesn’t have a mechanism to investigate complaints
independently. Please could you confirm this is the case and I can refer it to the Charity Commission.

Please could you confirm you have forwarded this message to the Governing Board?

With best wishes

Caroline

Caroline Struthers
Senior EQUATOR Research Fellow
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Cochrane have a new ticketing system!!!!! How exciting!!!

New reply for your query (ticket #CSO00129045)

Dear Caroline,

Thank you for your message, and I'm sorry to hear you haven't had a response to this complaint. Please be assured that I am following this up internally now, and will get back to you as soon as I have an update.

With best wishes,

Rachel Klabunde
Cochrane Support Manager
 
Andy said:
Sent this morning to Cochrane Press Office and IAG email addresses,

"Hello,

As it has now been two months since your previous response, and 39 months since the update was first announced, please can you advise me of any progress that you have made in that time.

Thanks in anticipation.

Andy"

Received the standard automated response from IAG email address.
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Received this response earlier today,

"Hi Andy,

Unfortunately we are not in a position to give an update at this time, but I will let you know as soon as there is one.

All the best,
Harry

Harry Dayantis
Head of Communications

Cochrane Central Executive Team"

I replied,

"Hi Harry,

Thank you for responding.

Given the ridiculously long time it has taken Cochrane not to get anywhere with this I’m afraid I have no faith in Cochrane updating either me or, more importantly, the ME/CFS community, who continue to be endangered by the existing review.

Until next month,
Andy"
 
Caroline Struthers said:
Cochrane have a new ticketing system!!!!! How exciting!!!

New reply for your query (ticket #CSO00129045)

Dear Caroline,

Thank you for your message, and I'm sorry to hear you haven't had a response to this complaint. Please be assured that I am following this up internally now, and will get back to you as soon as I have an update.

With best wishes,

Rachel Klabunde
Cochrane Support Manager
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I received this today from Catherine Spencer

Dear Caroline

Thank you for your complaint 'Poor management of Cochrane Stakeholder engagement in high-profile reviews pilot.'

We have reviewed and noted your complaint.

Kind regards

Catherine Spencer

I will submit it to the Charity Commission, more in hope than expectation. I guess "noting" complaints is one way of dealing with them...and practiced the world over.
 
Caroline Struthers said:
I received this today from Catherine Spencer

Dear Caroline

Thank you for your complaint 'Poor management of Cochrane Stakeholder engagement in high-profile reviews pilot.'

We have reviewed and noted your complaint.

Kind regards

Catherine Spencer

I will submit it to the Charity Commission, more in hope than expectation. I guess "noting" complaints is one way of dealing with them...and practiced the world over.
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If that is their process then it should be written down as such. So that such policies can be viewed and judged, as well as followed by them consistently across all complaints as relevant (noting there need to be e.g. ones that deal with relevant conflicts of interest where those who normally deal with them are the matter of the complaint for example). It seems pretty strange to get so little basic information other than 'noting' and 'reviewed' and to not even state 'as per policy xyz'.

Yes, making it into attrition to get anywhere by doing the 'deaf ears' strategy is a commonly used technique the world over including by laypersons, it doesn't make it right though. I'd be intrigued what their responses have commonly been to complaints over the past few years in order to compare 'all other areas' vs ME/CFS-related ones. ie is this their 'standard policy' or is it indeed an 'adapted one'. Is it even standard vs if it were ME/CFS-related and from different individuals?

This is kind of why proper protocols and policies are supposed to be there and followed in order to provide answers to these Qs
 
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bobbler said:
If that is their process then it should be written down as such. So that such policies can be viewed and judged, as well as followed by them consistently across all complaints as relevant (noting there need to be e.g. ones that deal with relevant conflicts of interest where those who normally deal with them are the matter of the complaint for example). It seems pretty strange to get so little basic information other than 'noting' and 'reviewed' and to not even state 'as per policy xyz'.

Yes, making it into attrition to get anywhere by doing the 'deaf ears' strategy is a commonly used technique the world over including by laypersons, it doesn't make it right though. I'd be intrigued what their responses have commonly been to complaints over the past few years in order to compare 'all other areas' vs ME/CFS-related ones. ie is this their 'standard policy' or is it indeed an 'adapted one'. Is it even standard vs if it were ME/CFS-related and from different individuals?

This is kind of why proper protocols and policies are supposed to be there and followed in order to provide answers to these Qs
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It's so fucked up that they can afford this waiting game, hoping for us to literally tire. We have our lives on the line and have to fight this bs without the prerequisite energy. Thanks Andy and Caroline for keeping to push on this.
 
At this point, and given that we are obviously being played with here, would it be possible to fund a Cochrane review? Just do it ourselves? It can't be that expensive, and frankly shouldn't really take long, months at most. I don't mean ourselves here on the forum, but funding someone with the credentials, there are plenty by now who could do it and by way of LC have learned enough. I mean the ME community in general, through some of the LC funds, or maybe one of the charities.

There is still barely any funding going on, but surely it should be possible to do it. Since this review is clearly getting nowhere, and it's not even accepted by any working group anyway, it's not like there'd be much difference here. Do they have to be commissioned from the top and they can simply decline and keep this lie going? Or is there some level of freedom where if someone meets the requirements, as long as it passes review it should be accepted? What happens if someone submits a review that passes all their standards but they just don't want to?

Hilda, frankly I don't know what happened here, but at least have the decency to close this farce so we can move on. It's seriously revolting how millions of lives are being played with. In the end this is worse than if nothing happened, since Cochrane keeps using this as cover having acknowledged that the current review is awful, while nothing at all is happening. This is playing out like the history of ME: time passes while people ignore us and we just lose our lives.
 
rvallee said:
At this point, and given that we are obviously being played with here, would it be possible to fund a Cochrane review? Just do it ourselves? It can't be that expensive, and frankly shouldn't really take long, months at most. I don't mean ourselves here on the forum, but funding someone with the credentials, there are plenty by now who could do it and by way of LC have learned enough. I mean the ME community in general, through some of the LC funds, or maybe one of the charities.
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I mentioned the idea of doing a review ourselves upthread. I've been giving some serious thought to that lately. I attended a three-day Cochrane course on doing reviews, and it's not difficult, it just takes considerable time and effort. I think, realistically, with a small focussed team, even with the people having some ME/CFS energy constraints, it would probably take 6 months to develop a good protocol and maybe a year to do the review. It could be done for the exercise review and/or the CBT review.

The issue is that Cochrane gets to review and approve (or not) the protocol. They can stop a Cochrane review if they want, and they certainly could do all sorts of things to stall it for a long time. They could criticise the composition of the team, disagree with the planned approaches. Or even just take a really long time to get around to assessing it. I imagine there are people like Paul Garner in the organisation who would die in a ditch in order to prevent a patient-supported review get over the line. So, the time between developing the protocol and getting sign off to actually do the review could be very long, maybe infinite...

So, it becomes a question of, is this the best way to use one's time? At this point, it's quite likely that we could produce a great protocol for the CBT review, or the exercise review, but it ends up being a waste of time. Working on a protocol for the CBT review is actually on my to do list, but I've been having a bit of a late-life crisis, trying to work out what's most important, and, in the process, not progressing anything much at all.

The idea of us together funding someone else to do it is a possibility. And perhaps not having people with ME/CFS leading or even being on a review team would help neutral people in Cochrane get a protocol approved.

My impression is that things may come to a head at the big Cochrane event that is coming up in September July. That's not far away now. So, I was mostly planning to wait, to see if anything came out of that.
 
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