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

strategist said:
That doesn't inspire confidence in the next review of exercise therapy for ME/CFS
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I think one of the first stumbling blocks will be identifying what exactly 'exercise therapy' is.
GET has morphed into so many different variations on a theme from the original 'graded exercise therapy' to 'graded activity' to 'pacing up', 'activity management', 'balancing activity' to name a few.

Unless of course Cochrane realise that the problem pwME have is with exertion, thus making the review on exercise therapy completely redundant.
 
Absence of standardization also means more freedom which means more opportunities to make choices that make some treatment look better than it is.

The bias may already be showing with the decision to make a review of exercise therapy. A narrow scope of only looking at exercise therapy and nothing else could allow reviewers to not discuss for example what the exercise physiology studies actually say, even if that is crucial in any intelligent discussion. These studies don't tell us that exercise is going to be harmful but they do tell us that it is probably unwise to rely on the usual assumptions about exercise being safe and good.

Exercise therapy in this context also makes the assumption that there is no disease holding patients back, that is patients are able to do more and more as long as they're carefuly to not increase their activity levels too quickly. Published research with objective measurement of activity levels shows a different picture. I don't clearly remember but I think there may have been only one study of GET that used activity trackers and they found that patients were able to first increase their activity but then declined. There were some Dutch studies too of CBT which showed no increase in activity levels.
 
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This study here

Time course of exercise induced alterations in daily activity in chronic fatigue syndrome
In a previous study we demonstrated that while people with CFS had lower daily activity levels than control subjects, they were able to increase daily activity via a daily walking program. We reanalyzed our data to determine the time course of activity changes during the walking program. Daily activity assessed via an accelometer worn at the hip was divided into sleep, active, and walking periods. Over the first 4–10 days of walking the subjects with CFS were able to reach the prescribed activity goals each day. After this time, walking and total activity counts decreased. Sedentary controls subjects were able to maintain their daily walking and total activity goals throughout the 4 weeks. Unlike our previous interpretation of the data, we feel this new analysis suggests that CFS patients may develop exercise intolerance as demonstrated by reduced total activity after 4–10 days. The inability to sustain target activity levels, associated with pronounced worsening of symptomology, suggests the subjects with CFS had reached their activity limit
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928/
 
strategist said:
Absence of standardization also means more freedom which means more opportunities to make choices that make some treatment look better than it is.

The bias may already be showing with the decision to make a review of exercise therapy. A narrow scope of only looking at exercise therapy and nothing else could allow reviewers to not discuss for example what the exercise physiology studies actually say, even if that is crucial in any intelligent discussion. These studies don't tell us that exercise is going to be harmful but they do tell us that it is probably unwise to rely on the usual assumptions about exercise being safe and good.

Exercise therapy in this context also makes the assumption that there is no disease holding patients back, that is patients are able to do more and more as long as they're carefuly to not increase their activity levels too quickly. Published research with objective measurement of activity levels shows a different picture. I don't clearly remember but I think there may have been only one study of GET that used activity trackers and they found that patients were able to first increase their activity but then declined. There were some Dutch studies too of CBT which showed no increase in activity levels.
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I suggested to Hilda Bastian that the review should look at all treatments for ME/CFS and focus on objective outcomes related to activity - work, study, social, voluntary, carer roles etc. And therefore move it to the Cochrane Work Group. She initially said that "that would be a different project". Yes, it would. But at least it would be useful (I imagine mainly in illuminating how crap most trials are, and how few there are). The separate Exercise, CBT, Chinese medicine etc etc. reviews are clearly not useful for the reasons you outline.
 
Caroline Struthers said:
I suggested to Hilda Bastian that the review should look at all treatments for ME/CFS and focus on objective outcomes related to activity - work, study, social, voluntary, carer roles etc. And therefore move it to the Cochrane Work Group. She initially said that "that would be a different project". Yes, it would. But at least it would be useful (I imagine mainly in illuminating how crap most trials are, and how few there are). The separate Exercise, CBT, Chinese medicine etc etc. reviews are clearly not useful for the reasons you outline.
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Interesting response. It struck me that your approach might be a good thing for Cochrane because they could say ‘a different project’ was needed and it would be less direct in overturning the current review. If they stick with the focus on exercise the only properly science based outcome is for a new review to contradict the current one. Perhaps they are genuinely not looking to save face in the outcome of the new review but that would be somewhat surprising based on events so far.

of course there is the thought maybe they think GETSET will be sufficient to muddy the waters
 
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NelliePledge said:
Interesting response. It struck me that your approach might be a good thing for Cochrane because they could say ‘a different project’ was needed and it would be less direct in overturning the current review. If they stick with the focus on exercise the only property science based outcome is for a new review to contradict the current one. Perhaps they are genuinely not looking to save face in the outcome of the new review but that would be somewhat surprising based on events so far.

of course there is the thought maybe they think GETSET will be sufficient to muddy the waters
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If it means Cochrane will save face, they will go for it. But I don't know if they could bring themselves to admit that it was a good idea, unless they somehow made it seem like it was theirs in the first place...(and definitely nothing to do with me!) This is all a distraction from the fact they have not withdrawn the Exercise review, or the CBT review which is also "a different project" and one which I will keep pushing for.
 
Trish said:
Are they treatment trials, or diagnostic testing trials?
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why should that make any difference to them being on the database?
I just did a search on Multiple sclerosis and diagnostic and it comes up with loads.

There are some (diagnostic trials) under ME and CFS but none of the CPET ones.

eta:
another example, this paper is also not on their database
Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.14138

eta2:
it looks like only 2 papers have been added this year.


this is worse than a dogs dinner; it's a dogs dinner without the biscuits
 
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Way back when this forum was started I found a website set up by Ronny Schuurbiers which had a really good ME/CFS research library. Unfortunately it is no longer available and it stopped being updated in 2018.
Maybe someone from the S4ME committee could contact him and ask if he would let us take it over?

this is the wayback link to the database:
https://web.archive.org/web/20181119005138/http://www.ronnieschuurbiers.nl/scienceforme/

he is on twitter
https://twitter.com/r_schuurbiers

eta:
email addr
Ronnie Science for ME <magnetronnie@gmail.com>
 
Sly Saint said:
it looks like only 2 papers have been added this year.
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Sly Saint said:
this is worse than a dogs dinner; it's a dog's dinner without the biscuits
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This feels important. We've had discussions about having a database of trials on S4ME at various times. Perhaps S4ME could collaborate with Cochrane on this? It would be relatively easy to add a marker to thread titles in the biomedical research forum indicating whether a paper is in the Cochrane database or not. And then we could have a team of people sending details through to Cochrane.
 
Sly Saint said:
Way back when this forum was started I found a website set up by Ronny Schuurbiers which had a really good ME/CFS research library. Unfortunately it is no longer available and it stopped being updated in 2018.
Maybe someone from the S4ME committee could contact him and ask if he would let us take it over?

this is the wayback link to the database:
https://web.archive.org/web/20181119005138/http://www.ronnieschuurbiers.nl/scienceforme/

he is on twitter
https://twitter.com/r_schuurbiers

eta:
email addr
Ronnie Science for ME <magnetronnie@gmail.com>
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This database looks awesome.
 
Caroline Struthers said:
Yes, it is a dogs dinner. I used to work for the Cochrane dementia group on a public engagement project which involved recruiting and training volunteers (we initially targetted carers and former carers of people with dementia) to populate the ALOIS database. I could see the huge potential of extending the scope of this citizen science to cover other disease areas (ie. other Cochrane review groups would adopt the same approach and get patients involved in the work.) I even did a poster about it for a Cochrane conference...It would change Cochrane too much and potentially give too much power to patients and the public so the idea never got off the ground
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This is a fantastic idea! What year did you present that poster?

Citizen science seems to be one of those ideas that many academics like in principle, but hate in practise - for true citizen science means involving citizens in both designing experiments and carrying out the methodology...
 
Sly Saint said:
Way back when this forum was started I found a website set up by Ronny Schuurbiers which had a really good ME/CFS research library. Unfortunately it is no longer available and it stopped being updated in 2018.
Maybe someone from the S4ME committee could contact him and ask if he would let us take it over?

this is the wayback link to the database:
https://web.archive.org/web/20181119005138/http://www.ronnieschuurbiers.nl/scienceforme/

he is on twitter
https://twitter.com/r_schuurbiers

eta:
email addr
Ronnie Science for ME <magnetronnie@gmail.com>
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That looks really impressive. Must have been a lot of work.

I don't quite get the idea to create a separate database for scientific publications on ME/CFS though - why not just use Pubmed for the main things and then Googlescholar and reference searching to find other publications?
 
Michiel Tack said:
That looks really impressive. Must have been a lot of work.

I don't quite get the idea to create a separate database for scientific publications on ME/CFS though - why not just use Pubmed for the main things and then Googlescholar and reference searching to find other publications?
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A separate database can record information that GS or Pubmed does not - eg we can uniquely categorise the studies based on our own criteria, quality rankings etc.
 
I would like to see a review done showing the trials/research that claims that exercise is beneficial to pwME/CFS where only subjective outcomes are used or where objective outcomes were moved to secondary outcomes or dropped, and the trials that used objective outcome measures and concluded little or no improvement.(FINE trial?)

Then all the trials that included exercise testing as part of their protocol (not necessarily exercise as therapy) and the findings from those exercise tests.

This I think would provide a much more balanced view of the situation re exercise and should at least raise the question as to why those proponents of graded exercise therapy did not investigate the effects/potential harms of exercise and make more stringent provision for the recording of adverse effects before embarking on full trials.

eta:
interesting post from @Lucibee
https://www.s4me.info/threads/cochr...ersion-october-2019.11564/page-19#post-240840
 
Snow Leopard said:
This is a fantastic idea! What year did you present that poster?

Citizen science seems to be one of those ideas that many academics like in principle, but hate in practise - for true citizen science means involving citizens in both designing experiments and carrying out the methodology...
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It was 2014...at the Cochrane conference in India (Hyderabad). Very true about citizen science. Cochrane has adopted the idea but made it its own (ie, Cochrane very much in control) https://crowd.cochrane.org/index.html
 
I have not caught up with messages and threads, apologies to all for now whom I have not replied to. Difficult few days.

...based on @Michiel Tack on Twitter I noticed this thread and discussion about having a database, apparently to have a 'go to' single touch-point, a knowledge base of articles.

Assuming I have understood the ask properly, the available technology actually already allows for a solution that is significantly more scalable and easily applicable than a mere research list DB, with collaboration built in.

What seems to be needed is a curated Zotero Group Library administered by appropriate mods. It's not about finding research, it's about knowledge management systems and citation/bibliography automation.

If no-one else has one, I am happy to offer my patchy library up for a starting point. Such a library will need continued curation.

BTW this is distinct from PubSci, Google Scholar,etc., which are portals and aggregators respectively. That's different from knowledge management system geared up specifically nfor the discrete task of tracking research and citing or listing it.

You can also tag manually, metadata is automatically imported per article, you can link references, such as working papers/preprints to final published articles etc.

Browser add-ons allow for easy content ingestion. Word processor add-ons allow for easy use, in which format/paper style you need and the whole thing is cross platform Windows, Mac, Linux, mobile, etc.
 
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Most sites, from journals, blogs, newspapers, wikis and more have their data easily importable in a click. Merging entries is also possible, which allows for easy addition of correct meta data by import, but never deleting, to ensure data integrity and not breaking citations in dependent documents i.e. your own articles
 
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