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

Do they even understand how relevant this is to Long Covid. Does Hilda? Doesn't seem so. The excuse of the pandemic delaying things doesn't work given that it increases the urgency far more than any delay would have been acceptable.

Again it wouldn't be so bad if the flawed reviews were unpublished, the GET and the even worse CBT one. But they're not. Instead they continue to ruin lives and impede progress.

It's like this is all being played out in a different reality, all the way high up the ivory towers that are just begging to be cut down at the base.
 
There are some great comments on that twitter thread.

If you are the Cochrane project manager (not Hilda, but the person in Cochrane responsible for this) of a project that you think matters, and for whatever reason (including valid ones like personal tragedies) the team that was organised to deliver the project does not meet milestones, you make arrangements to get things back on track. If you don't think it matters, or it's easier for everyone at your organisation including you that it drifts along to become someone else's problem, then you ignore things and accept whatever excuses comes readily to hand.

If you suffer a personal tragedy that makes it impossible to deliver on a significant project, ideally you recognise that, identify someone else able of doing the job, and pass it over to them. I think many of us here have experienced work-limiting personal tragedies that change priorities and capabilities. I personally know it's not always easy to accept that you can't deliver on something that you were once both very willing and able to to do, and pass responsibility on to someone else.

But, in this case, getting that flawed review retired is so important to protect people. I have no doubt that that review makes a significant contribution to an environment where some people feel so misunderstood and so hopeless that they take their own lives and many more feel deep despair. I have no doubt that that study makes a significant contribution to an environment where funders of research don't think ME/CFS biomedical research is worth funding. We've seen it used often to prop up the BPS view of the nature of CFS and appropriate treatments.

ME/CFS affects so many people, and, with Covid-19, it is affecting many more. That Cochrane study harms all of them, and their families, and the societies that they could be more actively contributing to. Replacing that flawed study with a sensible one is surely, objectively, one of a short list of the most important things that @Hilda Bastian has ever been tasked to do. If that seems impossible, then that current study must surely be removed. The conclusions it comes to are widely disagreed with by people and organisations that have looked closely at the evidence (NICE, for example, as well as virtually all patient support charities). How can that review be allowed to stand?

Of course, I don't know what is going on. Perhaps the Cochrane project manager and Hilda do understand how important this new review is to the lives of so many people and, supported by the review team (@Medfeb) and the IAG (@Penelope McMillan and others), have been valiantly battling Cochrane management all this time to make progress?
 
Are people paid to produce Cochrane reviews? If so, someone should be sacked. If not, then I'm grateful to any of the volunteers who are trying to get this job completed and hope any whose circumstances prevent them playing their part will step aside so others can get it done.

I have a vague memory of a promise early in the process to publish a draft protocol for the review for public consultation. Did I imagine that?
 
Hutan said:
Of course, I don't know what is going on. Perhaps the Cochrane project manager and Hilda do understand how important this new review is to the lives of so many people and, supported by the review team (@Medfeb) and the IAG (@Penelope McMillan and others), have been valiantly battling Cochrane management all this time to make progress?
Click to expand...
Yes, we do need to be careful here. There will be a lot more going on behind the scenes than we will ever know.

Cochrane is the last big medical institution left nominally supporting the psycho-behavioural claim about CBT/GET, so fans of that approach will be fighting particularly hard there as it is their last major stand. If they lose, then their ideas on ME are largely discredited (though not yet completely removed from circulation).

Which is why they are also putting so much energy into marketing the whole FND circus. It is their fallback if it goes tits up for them at Cochrane.

So, like NICE, and others (IOM, AHQR, etc), Cochrane must make sure they get it right.
 
Last edited:
Hutan said:
There are some great comments on that twitter thread.

If you are the Cochrane project manager (not Hilda, but the person in Cochrane responsible for this) of a project that you think matters, and for whatever reason (including valid ones like personal tragedies) the team that was organised to deliver the project does not meet milestones, you make arrangements to get things back on track. If you don't think it matters, or it's easier for everyone at your organisation including you that it drifts along to become someone else's problem, then you ignore things and accept whatever excuses comes readily to hand.

If you suffer a personal tragedy that makes it impossible to deliver on a significant project, ideally you recognise that, identify someone else able of doing the job, and pass it over to them. I think many of us here have experienced work-limiting personal tragedies that change priorities and capabilities. I personally know it's not always easy to accept that you can't deliver on something that you were once both very willing and able to to do, and pass responsibility on to someone else.

But, in this case, getting that flawed review retired is so important to protect people. I have no doubt that that review makes a significant contribution to an environment where some people feel so misunderstood and so hopeless that they take their own lives and many more feel deep despair. I have no doubt that that study makes a significant contribution to an environment where funders of research don't think ME/CFS biomedical research is worth funding. We've seen it used often to prop up the BPS view of the nature of CFS and appropriate treatments.

ME/CFS affects so many people, and, with Covid-19, it is affecting many more. That Cochrane study harms all of them, and their families, and the societies that they could be more actively contributing to. Replacing that flawed study with a sensible one is surely, objectively, one of a short list of the most important things that @Hilda Bastian has ever been tasked to do. If that seems impossible, then that current study must surely be removed. The conclusions it comes to are widely disagreed with by people and organisations that have looked closely at the evidence (NICE, for example, as well as virtually all patient support charities). How can that review be allowed to stand?

Of course, I don't know what is going on. Perhaps the Cochrane project manager and Hilda do understand how important this new review is to the lives of so many people and, supported by the review team (@Medfeb) and the IAG (@Penelope McMillan and others), have been valiantly battling Cochrane management all this time to make progress?
Click to expand...
If you haven't already, please address this, or a version of this, to Hilda to ensure she reads it. I am not 100% sure she checks in with S4ME posts any more.
 
The only benefit of this, I can see, is that if they look at the evidence and agree it's crap, that's the final nail in the coffin of "exercise" as a treatment. But the risk is that the process is being influenced and distorted by vested interests, and that more time simply means more concessions are made on this basis.

It would be really good if they could just give the updates they've promised. Even just brief minutes for meetings, like NICE did, so we can see what progress is being made.
 
adambeyoncelowe said:
The only benefit of this, I can see, is that if they look at the evidence and agree it's crap, that's the final nail in the coffin of "exercise" as a treatment. But the risk is that the process is being influenced and distorted by vested interests, and that more time simply means more concessions are made on this basis.

It would be really good if they could just give the updates they've promised. Even just brief minutes for meetings, like NICE did, so we can see what progress is being made.
Click to expand...
The obfuscation is bizarre for an organisation which partly sells itself on transparency and commitment to patient involvement. In this case the patient involvement and all other aspects of the review process have been unreported on for over a year.
 
Caroline Struthers said:
I guess there may already be some trials out there
Click to expand...

Thanks Caroline another excellent message - pity about the nil responses!

Re priority 2* - I share your doubts i.e. "I guess there may already be some trials out there" --- the quality of the trials and Cochrane review of same --- well if past experience is anything to go by, there may be some concerns/challenges!


*priority 2
"Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?"
 
I’m certain based on the Nice consultation that there’s significant stonewalling going on (not by Hilda) by people with some influence within Cochrane. This seems to be a classic example of the tactic to avoid change of an issue being kicked into the long grass. And now nothing has happened for such a long time its so far off the scale it really doesn’t matter if it drags on for another couple of years or five. Whatever.

If there was any will whatsoever to address this someone could have been found to do the work needed , perhaps with very limited checking/steer by Hilda.

and it’s succeeding is there anyone else other than Caroline and people on this thread who even have this on their radar. And we’re also losing sight of it too.
 
The Cochrane page "Stakeholder engagement in high-profile reviews pilot" has not been updated with a single sentence for over a year. I check it regularly (because the review is also influential in Germany and continues to harm people) and find it upsetting that no one at Cochrane cares enough to at least edit the outdated info.

It still says: "There will be a combined August/September (2021) progress report with the launch of the first IAG consultation"
And: "The complete updating process for the review is expected to be complete early in 2022. We will be reporting on progress monthly."

https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot
 
Joh said:
The Cochrane page "Stakeholder engagement in high-profile reviews pilot" has not been updated with a single sentence for over a year. I check it regularly (because the review is also influential in Germany and continues to harm people) and find it upsetting that no one at Cochrane cares enough to at least edit the outdated info.

It still says: "There will be a combined August/September (2021) progress report with the launch of the first IAG consultation"
And: "The complete updating process for the review is expected to be complete early in 2022. We will be reporting on progress monthly."

https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot
Click to expand...
I think I will write to the new CEO to complain. My email to the IAG address has not had a response, and another email to an editor at Cochrane got a response, but said they can't update me with any information at the moment.
 
I have just found the answer to my question about the protocol for the review:
In Hilda Bastian's report dated 31st May 2021,

For this updated review, there will be a new protocol. After peer review, it will be released for a very short consultation period – we hope to reach that point in the third quarter of the year. There will be opportunity for stakeholders to raise their concerns in virtual meetings, as well as in writing, before the protocol is finalised and published.
Click to expand...
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1

So we were promised a consultation on the protocol for the new review a year ago.
 
Last edited:
Trish said:
I have just found the answer to my question about the protocol for the review:
In Hilda Bastian's report dated 31st May 2021,


https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1

So we were promised a consultation on the protocol for the new review a year ago.
Click to expand...

My assumption is that they haven't completed a protocol so have not started to do any review.
But then the protocol is the important thing in terms of the outcomes of the review if the protocol allows them to use biased data then it will result in bad output.
 
There seems to be a post-hoc problem here.
If you already have detailed information on what studies have shown then you can cherry pick a protocol to produce a review that gives you the result you want.

I am reminded of the Mikado, in which the first task of the Lord High Executioner is to behead himself. Hence nothing gets done.
 
Trish said:
I have just found the answer to my question about the protocol for the review:
In Hilda Bastian's report dated 31st May 2021,


https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1

So we were promised a consultation on the protocol for the new review a year ago.
Click to expand...
I know it's a bit of a moot point. But why "a very short consultation period"? Why can Cochrane take its own sweet time with everything and expect everyone to jump to it if and when they ever produce anything for its own stakeholders to comment on?
 
You must log in or register to reply here.
Back
Top Bottom