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

If there were an officially maintained S4ME, CureME, ME Association or whomever Zotero Group Library, that would be usable globally and accelerate the logistics of familiarisation and referencing in ME research.

Put otherwise, you suddenly have a 'turn key solution' for writing ME articles.

Every little helps to scale the limited scientific resource base and facilitate easier entry into our world, also.

It makes our community tangible for new scientists in a practical, ergonomic way.
 
InfiniteRubix said:
If there were an officially maintained S4ME, CureME, ME Association or whomever Zotero Group Library, that would be usable globally and accelerate the logistics of familiarisation and referencing in ME research.

Put otherwise, you suddenly have a 'turn key solution' for writing ME articles.

Every little helps to scale the limited scientific resource base and facilitate easier entry into our world, also.

It makes our community tangible for new scientists in a practical, ergonomic way.
Click to expand...
What would be great is a "study-based" database. So not based around bibliographic references, but around studies - eg. one record for the PACE trial, another record for a surveillance study, clinical audit, another record for a biomarker study, a diagnostic study etc. There would be links from each study record to publications of course, and maybe media coverage. It would need to start life as a bibliographic database, as that's how you can detect the existence of studies most easily. But it could be "studified" so the records in the database are studies not bibliographic references. The study records could be tagged with all sorts of codes - generated by the community. The difference is that the study is the core thing, and the bibliographic references are linked to it. Does that make sense? A good example of what I mean by a study-based register is this for dementia studies https://alois.medsci.ox.ac.uk/search although I think it only contains diagnostic accuracy studies and intervention trials - (ie. the type of studies which are normally included in a Cochrane review)
 
InfiniteRubix said:
It does indeed make sense. You can group articles by Collection (folder) or tag them with metadata keywords.

But... You also explicitly link related items to achieve what I believe that you are describing:

https://www.zotero.org/support/related
Click to expand...
I am suggesting something more than grouping and tagging articles. It's grouping characteristics of studies in one study record independent of articles. For example, the cochrane exercise review is a study, so it would have its own study record - with characteristics like advisors who are proponents of the treatment under investigation, reliance on subjective outcomes. The PACE Trial would have one study record - with characteristics like - unvalidated diagnositic criteria, relaxing recovering criteria, salami slicing the reports, conflicts of interest undeclared to study participants. What I am getting at is records that are completely independent of publications - so in theory you could have a study record without any publications at all. So it could include records of studies from ethics committee, study registers, maybe even funders
 
Caroline Struthers said:
The PACE Trial would have one study record - with characteristics like - unvalidated diagnositic criteria, relaxing recovering criteria, salami slicing the reports, conflicts of interest undeclared to study participants.
Click to expand...
the MEpedia entry comes close to that
https://me-pedia.org/wiki/PACE_trial

ME pedia would be an ideal 'vessel' but it has its own problems (see various mentions of these on other threads, too many to link to here).
 
Last edited:
Caroline Struthers said:
The only reason to allocate it to the work group is because they will look at objective outcomes relating to occupation - ability to do things - not just work - but education, social activities, voluntary work, caring etc. The sole purpose would be to show how useless trials such as PACE and SMILE are because they didn't either measure or report those outcomes. It will illustrate how bad the research is on the treatments that don't work - ie. it is manipulate to flatter treatments they believe are helpful. And they don't measure the harm that some treatments cause. That's the point I'm trying to get across with the suggestion to move the review to a group where it's not really about the condition itself. It's all about focusing on objective outcomes. Cochrane have a bad habit of focusing on outcomes that are reported in the literature (ie. the ones the researchers want to use, or are convenient, or flattering to a favored treatment) - not the outcomes that are important to patients. My point is that if a review specifies outcomes important to patients that are not reported in the literature, it should (in theory) send a signal to primary researchers to use these patient-important outcomes in future trials.
Click to expand...

Thanks, @Caroline Struthers .

Not entirely convinced yet but haven't been able to reply and now got distracted by other things – so I just leave these lines from my drafts folder here:

About the Cochrane Work Group's reviews

At a quick glance I found only one review that used sick leaves as one of the outcome measures for health conditions usually classified as 'subjective':

Conservative interventions for treating work‐related complaints of the arm, neck or shoulder in adults (2013)

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD008742.pub2/full

Other reviews on allegedly 'subjective' impairments that are listed on the Work Group's site under 'Our Systematic Reviews' → Cochrane reviews about occupational safety and health (mostly edited by other groups though) at a very quick glance either didn't apply any objective outcomes or didn't report them as important outcomes in the summaries:

(A proper search could bring some more encouraging results though-)

Cochrane Work Group

Workplace interventions for increasing standing or walking for decreasing musculoskeletal symptoms in sedentary workers (2019)

https://doi.org/10.1002/14651858.CD012487.pub2



Cochrane Back and Neck Group:

Exercises for mechanical neck disorders

Version published: 28 January 2015 see what's new

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004250.pub5/full



Cochrane Back and Neck Group

Behavioural treatment for chronic low‐back pain - Henschke, N - 2010 | Cochrane Library

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD002014.pub3/full

Comment

https://www.cochranelibrary.com/cds....pub3/detailed-comment/en?messageId=244235352


Cochrane Musculoskeletal Group

Multidisciplinary rehabilitation for fibromyalgia and musculoskeletal pain in working age adults (1999, amended 2008: Converted to new review format. )

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001984/information#authors

Edited to add: Meanwhile I doubt any editor at Cochrane is interested in understanding the criticism discussed on S4ME. I think the best thing would be if members of the advisory group had a say in choosing the authors (and if there were S4ME members among the authors).

Edit 2: From https://work.cochrane.org/our-scope
Since many of the topics within our scope are also included in the scope of other review groups, we will not pursue a topic without first consulting the Review Group(s) which we expect to have an equal interest in the topic.
Click to expand...
 
Last edited:
MSEsperanza said:
Thanks, @Caroline Struthers .

Not entirely convinced yet but haven't been able to reply and now got distracted by other things – so I just leave these lines from my drafts folder here:

About the Cochrane Work Group's reviews

At a quick glance I found only one review that used sick leaves as one of the outcome measures for health conditions usually classified as 'subjective':

Conservative interventions for treating work‐related complaints of the arm, neck or shoulder in adults (2013)

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD008742.pub2/full

Other reviews on allegedly 'subjective' impairments that are listed on the Work Group's site under 'Our Systematic Reviews' → Cochrane reviews about occupational safety and health (mostly edited by other groups though) at a very quick glance either didn't apply any objective outcomes or didn't report them as important outcomes in the summaries:

(A proper search could bring some more encouraging results though-)

Cochrane Work Group

Workplace interventions for increasing standing or walking for decreasing musculoskeletal symptoms in sedentary workers (2019)

https://doi.org/10.1002/14651858.CD012487.pub2



Cochrane Back and Neck Group:

Exercises for mechanical neck disorders

Version published: 28 January 2015 see what's new

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004250.pub5/full



Cochrane Back and Neck Group

Behavioural treatment for chronic low‐back pain - Henschke, N - 2010 | Cochrane Library

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD002014.pub3/full

Comment

https://www.cochranelibrary.com/cds....pub3/detailed-comment/en?messageId=244235352


Cochrane Musculoskeletal Group

Multidisciplinary rehabilitation for fibromyalgia and musculoskeletal pain in working age adults (1999, amended 2008: Converted to new review format. )

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001984/information#authors

Edited to add: Meanwhile I doubt any editor at Cochrane is interested in understanding the criticism discussed on S4ME. I think the best thing would be if members of the advisory group had a say in choosing the authors (and if there were S4ME members among the authors).

Edit 2: From https://work.cochrane.org/our-scope
Click to expand...
I know and like the Coordinating Editor of the Work Group. He thinks it's a good idea to widen the scope of the exercise review so it's more of an overview of a number of treatments to see if any of them have any good evidence behind them. However, he is also worried about getting involved (like everyone else it seems!). It doesn't matter about the scope or approach of other reviews handled by this group in the past. All reviews are developed independently of each other even if they are supported by the same editorial group. It would be perfectly possibly to choose your own review group and submit a title proposal form direct with your own authors, and even write the review as a S4ME collective, with no involvement of a centrally controlled Cochrane advisory group. Wouldn't necessarily have to be a Cochrane review either.
 
Just watched the presentation by Cochrane at the 2020 CMRC conference and I have to say that nothing in it convinces me that the Advisory Group will be anything other than, as its title suggests, advisory. Especially given that during the presentation it was confirmed that, paraphrasing, the point of the IAG is to improve the acceptability of the new report.

Personally I have no faith in Cochrane, so I'm not sure I would want to be involved in something that might (possibly/probably will?) end up confirming exactly the same as the current review, that they refuse to withdraw.
 
Andy said:
Just watched the presentation by Cochrane at the 2020 CMRC conference and I have to say that nothing in it convinces me that the Advisory Group will be anything other than, as its title suggests, advisory. Especially given that during the presentation it was confirmed that, paraphrasing, the point of the IAG is to improve the acceptability of the new report.

Personally I have no faith in Cochrane, so I'm not sure I would want to be involved in something that might (possibly/probably will?) end up confirming exactly the same as the current review, that they refuse to withdraw.
Click to expand...
I haven't steeled myself to watch it yet...am likely to get very cross if I do. Having asked Hilda if I can be involved....a. I don't think I will be one of the lucky ones, and b. I think I would not take part anyway unless the old review is withdrawn. And maybe not even then. The more I think about it, the more stupid it is to have a review of an intervention for a condition for which there is no diagnostic test/biomarker, or full understanding of the cause. Maybe an overview of all interventions would be useful - which would show how few trials (or other studies) include only people with ME, and how many studies rely on subjective outcomes. I think a meta-analysis is totally pointless.
 
Andy said:
Just watched the presentation by Cochrane at the 2020 CMRC conference and I have to say that nothing in it convinces me that the Advisory Group will be anything other than, as its title suggests, advisory. Especially given that during the presentation it was confirmed that, paraphrasing, the point of the IAG is to improve the acceptability of the new report.

Personally I have no faith in Cochrane, so I'm not sure I would want to be involved in something that might (possibly/probably will?) end up confirming exactly the same as the current review, that they refuse to withdraw.
Click to expand...
My counter would be that unless you're in the room (or at least the adjacent room), it's very hard to effect change.

At least if you're in the advisory group you can complain loudly, and to the right people, about how you should be more than advisory...
 
adambeyoncelowe said:
My counter would be that unless you're in the room (or at least the adjacent room), it's very hard to effect change.

At least if you're in the advisory group you can complain loudly, and to the right people, about how you should be more than advisory...
Click to expand...

My impression is that they will carefully choose who is on the advisory group so they get people who will agree. I also suspect Cochrane are a group that talk about patient involvement view this as patient support and don't realize that patients have the ability to reason and understand science.
 
adambeyoncelowe said:
My counter would be that unless you're in the room (or at least the adjacent room), it's very hard to effect change.

At least if you're in the advisory group you can complain loudly, and to the right people, about how you should be more than advisory...
Click to expand...
I know, I completely understand that argument. My problem is that I don't believe that any complaints would be listened to.

A separate line of concern for me is whether we would have anybody in a position to be able take part anyway. There are multiple things to be involved with at the moment, which is good, but we don't seem to have that many people who are both interested and well enough to be involved in them.
 
You must log in or register to reply here.
Back
Top Bottom