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

[spinoza577]

I have two more important article in this context here.

Nacul et al 2018 How have selection bias adn disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatique syndrome (ME/CFS) studies?

Jason et al 2015 Problems in Defining Post-Exertional Malaise


It is of course, when there is no serious attempt to understand an illness, that any investigation will miss the points. I hope that Cochrane is aware of this problem.

As long as the CBT/GET approach is not able to explain or to take into consideration:

• delayed PEM, when the worsening appears say 24h or 48h or whatever later
• why specific pathogens trigger the illness in obviously quite a proportion of cases, and not any pathogens
• the presentation of the illness as an operational (technical) inability [maybe at the sides of any nerves], not a as a motivational one like in depression
• pain (or makes assumptions against common sense and without further explanation)

as long will any trial which claims to show that CBT or GET helps rather show that the investigators have missed the patients suffering from the illness, be it because of a wrong sample, be it because of any manipulation (probably in a sample wrong enough), or be it for further reasons that I do not know.

 

[Woolie]

Yet that is exactly the view of researchers in the field. They cannot personally think of a better way, so they assume their inadequate trials are good enough.







Note: Professor Bentall co-authored the Powell 2001 et al. graded exercise 'education' trial and the FINE trial.

See also (Bentall's double standards with regards to evidence quality):
http://cepuk.org/2020/06/04/guest-b...a-classic-failure-of-evidence-based-medicine/

Wow, blown away by what a %$#* this guy was to you, @Snow Leopard! A perfect package of arrogance and prejudice.

 

[Hoopoe]

He is technically correct that there is no objective measure of depression etc but seems to have difficulty understanding the very simple argument that there are objective measures of the impact of these illnesses on patients lives which is a good thing because that allows more accurate measurement of the efficacy of some treatment. A good thing, unless of course you're a person that's promoting a placebo therapy and know it would be exposed as such if a clinical trial with credible controls were ever done.

 

[Caroline Struthers]

https://community.cochrane.org/news/cochrane-forms-new-research-integrity-team.

Lisa Bero, Senior Research Integrity Editor, says, “For decades, Cochrane has been a leader in conducting meta-research to detect research integrity problems. We are now expanding our emphasis to develop and test empirically based solutions and conduct advocacy to improve the integrity of the research record and research behaviours. I look forward to collaborating widely to advance this agenda.”

Have attached an email I wrote to Lisa in October 2019 which she didn't reply to.

From: Caroline Struthers
Sent: 24 October 2019 14:02
To: lisa.bero@sydney.edu.au
Subject: Rapid response on Cochrane Risk of Bias 2

Dear Lisa

I hope you are well. We have met a few times briefly, most recently in Seoul when I was a member of
the Cochrane Consumer Executive.

I thought you might be interested in mine and the other two rapid responses to the recent Risk of Bias 2
publication in the BMJ. https://www.bmj.com/content/366/bmj.l4898/rapid-responses

I think I wrote to you in 2013 after the debate to say I thought the information systematically included in
reviews should go beyond funding to include other positive and negative study characteristics of
studies. I briefly described this idea in my rapid response.

My interest in bias was rekindled in 2016 when I discovered by chance what was going on with the
Exercise for Chronic Fatigue Syndrome review. I soon got to know the wonderful work of David Tuller
who I believe you know too. After endless emails to David Tovey from the end of 2016 got nowhere, I
finally made a complaint to the Governing Board at the end of 2018. I documented this on a blog, the
main post of which is this https://healthycontrolblog.wordpress.com/2019/02/18/response-to-
cochrane/. The Governing Board decided it was an editorial matter and should be left with David, and
now it’s Karla

The review has now been amended
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full with an editorial by
Karla not explicitly linked to the review https://www.cochrane.org/news/publication-cochrane-review-
exercise-therapy-chronic-fatigue-syndrome . The review still stands saying that Exercise is moderately
effective based on poor evidence. It should have been withdrawn to protect patients, and a new review
commissioned.

It would be great to hear your thoughts. I think Cochrane need to take this issue more seriously as its
reputation is sinking fast, and not just with me.

Best wishes

Caroline


____________________
Caroline Struthers
Senior EQUATOR Research Fellow
UK EQUATOR Centre
Centre for Statistics in Medicine
NDORMS - University of Oxford
Botnar Research Centre
Old Road, OX3 7LD
Oxford, United Kingdom

email: caroline.struthers@csm.ox.ac.uk
website: www.ndorms.ox.ac.uk/team/caroline-struthers

Researcher Co-Investigator MRC Methodology Research Grant
GoodReports: An online tool helping authors find and use reporting checklists to improve completeness of reporting
www.goodreports.org |@Good_Reports

 

[Trish]

Thanks for keeping on keeping on with this, @Caroline Struthers. I feel sick when I see Cochrane using the phrase 'research integrity'.

 

[rvallee]

For decades, Cochrane has been a leader in conducting meta-research to detect research integrity problems

Hmmm.

In this case here, many of the issues were detected during the process. The initial peer reviews were pretty brutal, and fair. So they were detected, it's just that they were left unaddressed. Just as enforcement is 9/10 of the law, detection of integrity issues is only as effective as how they are addressed after being detected. Horton did the same with the PACE paper, deferring entirely to the fact that the authors reject the issues as problematic and that's all good for him, that it's not his job to judge issues with papers he publishes. Somehow.

What I've seen is deference to those with the integrity issues and the issues themselves being left untouched. A bit like BMJ admitting SMILE violated their "zero tolerance" requirements but not finding any issue with that, optional requirements apparently. Exceptions and arbitrary exemptions essentially void the process when opinions dominate. An especially big problem with concepts built on ideology.

Difference between the letter and the spirit. Ideally there should not be any. It certainly should not be vast.

 

[Snow Leopard]

Wow, blown away by what a %$#* this guy was to you, @Snow Leopard! A perfect package of arrogance and prejudice.

The sad part is I have had a few friends with Schizophrenia and I had asked them about the controversy between Coyne/Laws and Bentall on CBT for psychosis and they were both of the opinion that CBT was useless and the outcome measures used by Bentall and others were not useful.

https://blogs.canterbury.ac.uk/disc...es-for-psychosis-are-helpful-but-unavailable/ (the comments by the "Anonymous" sufferer are interesting)

 

[Woolie]

https://blogs.canterbury.ac.uk/disc...es-for-psychosis-are-helpful-but-unavailable/ (the comments by the "Anonymous" sufferer are interesting)

Anonymous' arguments were very interesting, and its good to see smart patients are weighing in there too.

Looking over that car crash of a discussion, I see now why Bentall might be a tiny bit defensive about the whole topic, but a shame he chooses to undermine and diminish the critic rather than engage in the argument.

 

[rvallee]

The sad part is I have had a few friends with Schizophrenia and I had asked them about the controversy between Coyne/Laws and Bentall on CBT for psychosis and they were both of the opinion that CBT was useless and the outcome measures used by Bentall and others were not useful.

https://blogs.canterbury.ac.uk/disc...es-for-psychosis-are-helpful-but-unavailable/ (the comments by the "Anonymous" sufferer are interesting)

I studied political science for a while. Not for long, I found it too opinionated, not formal enough. Though it's fascinating how the same questions debated millennia ago are still asked, debated and analyzed today, because they are complex problems where science cannot disambiguate. Because of that a lot of debate is not much more than rhetoric and sophistry. Some of it is very smart, but ultimately it is opinion, not fact.

The discussion on this blog and about CBT in general is of the same caliber. It is almost entirely opinion and most of it is sophistry that does not stand any formal scrutiny. Science does not factor in because it has not resolved anything yet, leaving everything to schools of thought, bickering turf wars and dogmatizing. Political science studies political ideologies, it does not adopt them and promote their belief systems.

After seeing much of it, I sadly conclude that political science is actually much more scientific that whatever this is, because although there are many doctrines and ideologies in politics, many firmly believed and promoted without limits, the field itself acknowledges the plurality of opinions and does not formalize one doctrine or ideology over another and is able to recognize assumptions as they are, unresolved assertions. Differences of opinions are understood to be about different perspectives. Here we see differences of facts, a much more profound flaw. It's the dogma that kills everything, firm convictions impervious to facts. People build their fort and defend it to the death, adopt a teleological conviction that they know how it ends and just need to figure how to get to that end.

That's a very sobering thought. I am so disappointed in seeing the reasons why my life and that of millions have been deemed worthless and expandable. It's barely more serious than a coin toss, all things considered, just better than TAU, toss as usual. For every step forward it seems there are hundreds in random directions. Progress only occurs because other fields of science invalidate assumptions or moves technology forward, just far too slowly.

"If the rule you followed brought you to this, of what use was the rule?"

 

[Snowdrop]

Interestingly, cochrane seems to take a different position to poor quality research into schizophrenia than it does into ME:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD000524/abstract

Cognitive behavioural therapy is a promising but under evaluated intervention. Currently, trial‐based data supporting the wide use of cognitive behavioural therapy for people with schizophrenia or other psychotic illnesses are far from conclusive. More trials are justified, especially in comparison with a lower grade supportive approach. These trials should be designed to be both clinically meaningful and widely applicable.

Bolding is mine.

 

[Hoopoe]

What Philip Stark, a stats professor at Berkeley thinks about the CODES trial's design:

“The trial did not support the primary clinical outcome, only secondary outcomes that involve subjective ratings by the subjects and their physicians, who knew their treatment status. This is a situation in which the placebo effect is especially likely to be confounded with treatment efficacy. The design of the trial evidently made no attempt to reduce confounding from the placebo effect. As a result, it is not clear whether CBT per se is responsible for any of the observed improvements in secondary outcomes.”

https://www.virology.ws/2020/06/26/...-commentary-promotes-eminence-based-medicine/

If it's not possible to tell whether a treatment is more than a placebo, then the clinical trial is fatally flawed.

 

[rvallee]

If it's not possible to tell whether a treatment is more than a placebo, then the clinical trial is fatally flawed.

Except when placebo is the goal, obviously.

"Placebo is one of the most powerful interventions we have"*, Simon said in response to whether they accounted for the "effectiveness" in PACE being simply a placebo effect.

I would in fact say it is precisely the goal in BPS. I have seen nothing contradicting this in any research or commentary.


* paraphrased from memory but close enough

 

[Caroline Struthers]

Hi. I also posted this here https://www.s4me.info/threads/grade...eview-2020-vink-vink-niese.15622/#post-272315

News on my request that Cochrane withdraw the 2008 CBT for CFS review which states that CBT is effective. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/read-comments

Cochrane changed its withdrawal policy in 2019 which means that it doesn't matter how out of date a review is, it won't be withdrawn unless there is consensus that it causes harm - ie. never. So the only thing they could do was put a note on it to say it's not current. I don't think this is progression in terms of policy for Cochrane, but brings Cochrane more in line with other journals. Why this should be the direction to go in, I don't know.

Cochrane used to have a policy to maintain reviews by updating them every two years, or more often if necessary. This is what Cochrane reviewers agreed to do when they published a protocol and review. The policy was never followed strictly when I worked for Cochrane. Unsurprising as Cochrane relies on volunteers to write reviews, and having being involved to some extent in working with Cochrane authors on updates, we had very little control over what they did after they had published the first version. This model of producing reliable up to date evidence doesn't work. It would be more constructive to repurpose reviews as campaign documents to highlight where patient groups have been poorly served by primary research (eg. people with ME) and prescribe how primary researchers could do better in the future. Even going as far as writing trial protocols and involving patients in the choice of outcome measures. These research blueprints could be sent to funders to help them prioritise what to fund, and/or be put out for tender to research groups.

 

[Sly Saint]

the 2008 CBT for CFS review which states that CBT is effective

I was going to make some (joking) comment about a cochrane review on the use of leeches.......
but there is one (for osteo arthritis), from 2014. So more up to date than the CBT for CFS review.

 

[Caroline Struthers]

I was going to make some (joking) comment about a cochrane review on the use of leeches.......
but there is one (for osteo arthritis), from 2014. So more up to date than the CBT for CFS review.

Ah no - it's not a review but a protocol for a review which they published in 2014, but haven't bothered to actually do the review itself. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD010962/full
This happens a lot. I guess they won't withdraw the protocol because of their new policy...??

 

[MEMarge]

Very interesting find about Professor Paul Garner. (Yes the longhaul COVID patient who has been in touch with Charles Shepherd and acknowledges concerns re ME developing in some people post COVID.)

"I was part of the original team that set up the Cochrane Collaboration, and currently I am the Co-ordinating Editor of the Cochrane Infectious Diseases Group.

Innovation and Review production Senior Adviser, Cochrane Library Editorial Board (201"

from:

https://www.lstmed.ac.uk/about/people/professor-paul-garner

 

[Sly Saint]

No one wants to point out the emperor has no clothes

The more you look at it the more it becomes clear that the 'vocal minority' are not the group of ME patients objecting to the 'research' but the small group of people who have held sway over the 'research' and promoted its 'findings'.
I found this article [aimed at physical therapists]

It is a phenomenon known as pluralistic ignorance.

Unfortunately it is very prevalent in healthcare.
This gets most dangerous when a vocal minority is holding the biggest, most respected microphone. For example, they run the review board of a journal, hold the reins of a professional association, or drive the ideology of a [physical therapy] school. Take a little argument from authority and sprinkle in some pluralistic ignorance and…well…it’s not good.

In this way, a “guru” leader and a small cadre of their believers can exert a huge influence over an entire profession. It really sets us all back and needs to stop.

https://thesciencept.com/doesnt-the-emperor-have-some-nice-new-clothes/

 

[Mike Dean]

@sly-saint It's almost as if it's not the patients who are "mad, bad and dangerous to know".

 

[NelliePledge]

Yep that sums up the situation with CFS clinics the approach of those in control of the manual is what patients get

 

[MEMarge]

Yep that sums up the situation with CFS clinics the approach of those in control of the manual is what patients get

Yes and those who actually listen to their patients realise that GET and PACE-style CBT do not work, but have to phrase their approach in terms that still qualify for CCG (Clinical Commissioning Group) funding.