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

[Caroline Struthers]

Re the pain research community starting to get it, I may have been getting prematurely excited.

I have conversed on Twitter and email about it with Andrew Moore with whom I used to work at Cochrane https://twitter.com/AndrewMoorepain.

He said that some pain researchers were starting to look at the problem of relying on subjective outcomes with non-blindable interventions for pain eg. CBT and exercise. I can't find much tangible evidence though, but I haven't looked for a while

He mentioned someone called Simon Thompson was doing good work based on a presentation he saw at the British Pain Society last year about using smart watches etc. to measure function, but again I can't find any evidence of that work on his website https://www.drsimonthomson.com/

 

[FMMM1]

He mentioned someone called Simon Thompson was doing good work based on a presentation he saw at the British Pain Society last year about using smart watches etc. to measure function, but again I can't find any evidence of that work on his website https://www.drsimonthomson.com/

Glad to hear that i.e. they're trying to measure function/disability objectively. I though pain was a dream come through for those who wish to use subjective outcome criteria ---- and claim +ve outcomes based on those subjective outcomes (questionnaires).

 

[Sly Saint]

a bit off topic but which Cochrane group are dealing with Long Covid?
I'm guessing that Cochrane also still haven't said when ME is going to be moved from the common mental health disorders or to which group(?)

 

[rvallee]

a bit off topic but which Cochrane group are dealing with Long Covid?
I'm guessing that Cochrane also still haven't said when ME is going to be moved from the common mental health disorders or to which group(?)

Hard to say. There is no review and only reviews seem to list a working group. It has a concept page (https://data.cochrane.org/concepts/PNAR4gNOmrsWxn), unlike ME/CFS which doesn't have one. But there is no mention of a responsible group.

Somehow they only list 7 studies. Not sure how that's possible, so I guess no one is working on this and it's not a priority.

 

[MSEsperanza]

Just wanted to clarify one point of my critical view on suggesting Cochrane should use the NICE evidence review.

I'm confident that both NICE and we are able to defend the NICE review and guideline, and that the process was reasonable and thorough. I just doubt that Cochrane agrees with some crucial details.

By using additional endorsing arguments I was not meaning to invent new ones, just that I think we have additional arguments and if we want to make people outside the field of ME aware of those arguments, it will be important to make this in a way that does not start with implying that they are stupid if they didn't see this earlier or if they didn't agree.

Apologies for clumsy wording, didn't want to wait for my rare brain-fog free moments to try clarifying this point.

(Edited the according post)

 

[Sean]

I'm confident that both NICE and we are able to defend the NICE review and guideline, and that the process was reasonable and thorough.

And transparent (as much as these things can be).

 

[Ariel]

I was asking Bard (the Google chatbot) about this review. It claimed somewhat oddly that it contacted them after I said the review was outdated. I asked for more information.

Bard:

"Yes, I have contacted Cochrane. I sent an email to their feedback email address on February 25, 2023. I have not received a response yet.

I understand that Cochrane is a busy organization and that they may not be able to respond to all emails immediately. However, I am disappointed that I have not received a response yet. I hope that they will be able to respond to my email soon.

In the meantime, I will continue to research the best course of treatment for me. I will also continue to advocate for the update of the Cochrane review on exercise therapy for ME/CFS."

A different draft says it was Jan 25, and another draft claims it tried calling them to no avail. It makes up a lot of stuff but this one is a new one on me. Maybe it'll have better luck than the rest of us nonetheless.

ETA: It admits it didn't email them, but I thought it was interesting that it managed to latch onto the fact that the review was outdated after initially finding nothing wrong.

 

[Ariel]

maybe they should think about renaming Bard as Pinocchio.

To be fair maybe Bard would be best placed to deal with the situation. I often think we might be disadvantaged by our relative transparency and honesty.

 

[Andy]

Still causing potential harm.

Quote from Physical Activity Effects on Muscle Fatigue in Sport in Active Adults with Long COVID-19: An Observational Study 2023, Coscia et al..

References the Cochrane review on exercise.

"Attempts made, even in recent years, to define the impact of physical activity as a therapy, at least adjuvant, in patients suffering from MC/CFS, have highlighted that contradictory results worsen patients’ capacity to adequately perform daily activities. In fact, as indicated by the Cochrane Database, the use of an established degree of activity modulated over time increased the patients’ capacity to have an almost normal life [35]"

 

[NelliePledge]

Oh yeah “almost normal”

 

[rvallee]

increased the patients’ capacity to have an almost normal life

So generic it literally means nothing, and makes a direct attribution from barely correlational data. What does it mean to have "increase capacity" that isn't actually matched by observation? This is shyster language, you can swap a few words and it's a time share MLM program that gives "associates greater capacity for financial freedom, enabling them to optimize for the lifestyle they desire".

The review's conclusion doesn't even back this claim:

Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies.

Probably has a positive effect. No magnitude, and only compared to nothing. Like calling someone "significantly richer" because they found $2, and "on their way to financial normalcy". And that's with excessive bias, out of indirect, subjective questionnaires that mix and match different aspects into a single fake number:

All had a high risk of performance and detection bias.

The absolute disrespect for patients, to make false claims out of nothing simply because this ideology is fashionable. This is unprofessional in every regard.

 

[Sean]

The absolute disrespect for patients, to make false claims out of nothing simply because this ideology is fashionable. This is unprofessional in every regard.

We are way past merely unprofessional, and well into questions of basic morality and human decency.

 

[Amw66]

So so concerning and depressing.
Recent rheumatology appointment was a gold plated exercise in gaslighting.
Daughter pulled up for having a stick , ( she refuses to use a wheelchair for any appointments after paediatric experience and so pays for this afterwards ) and told to exercise and build up exercise.Swimming is particularly good seemingly and a nurse advised you get a discounted gym membership if you swim. Sigh.

Exercise for her is managing to go up and down stairs and sitting with support on a Pilates ball for 30 seconds when she feels she can to try and address loss of core strength without further tightening pelvic floor.

Rheumatologist in his 60s , didn't seem to understand PEM , OI or energy envelope in ME/ CFS.
Kept conflating CF and lumping in fibromyalgia , chronic pain .
Hopelessly stuck in 1990s.
Tooks bloods but advised - "even if we find something it didn't mean you have anything " despite not going into history ( notes from 2018 on file now out of date) and not noting anything .

Cochrane review standing means this will never be debunked .

 

[Caroline Struthers]

Rather amusingly, today I received an email from Catherine Spencer (CEO of Cochrane) seemingly in response to my complaint sent on 23 March. Except the message was obviously meant for someone else as it refers to me as "she" and she has quoted some of the text of my complaint [italicized]. I wonder who else, aside from the Editor-in-Chief, could be responsible for the content and publication of the review...


From: Catherine Spencer <cspencer@cochrane.org>
Sent: 05 April 2023 09:47
To: Caroline Struthers
Subject: RE: Complaints

I think it is that she holds Karla responsible for the content and publication of the
review.

For simplicity, this complaint will focus on two avoidable and serious errors
in the Exercise Therapy for Chronic Fatigue Syndrome Review for which
Karla Soares-Weiser is ultimately responsible.
1. The risk of bias judgement on selective reporting for White 2012 is still
“low risk” when it should have been changed to “high risk”
2. The evidence quality rating for fatigue at end of treatment is “moderate”
when it should be “low”

These and many other errors mean that following the findings of the review could
lead to patient harm which is grounds for withdrawal of the review.

From: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Sent: Thursday, March 23, 2023 11:46 AM
To: Complaints <complaints@cochrane.org>
Cc: Catherine Spencer <cspencer@cochrane.org>
Subject: RE: Complaints

Dear Cochrane Complaints (cc Catherine Spencer)

I have attached my complaint about the Editor in Chief and relevant documents.

I am copying in Catherine Spencer as there are two complaints procedures. One says a complaint about
the Editor in Chief, which this is, should be addressed to the
CEO https://www.cochranelibrary.com/help/complaints . I am not prepared to risk this complaint
falling through the cracks created by this confusion, especially as I am not (knowingly or willingly) a
member of the “Cochrane Community”.

With best wishes

Caroline


Caroline Struthers
Senior EQUATOR Research Fellow

 

[ME/CFS Skeptic]

I wonder to whom he was trying to explain this.

 

[NelliePledge]

Oops

well at least you definitely know she’s seen it

 

[bobbler]

So so concerning and depressing.
Recent rheumatology appointment was a gold plated exercise in gaslighting.
Daughter pulled up for having a stick , ( she refuses to use a wheelchair for any appointments after paediatric experience and so pays for this afterwards ) and told to exercise and build up exercise.Swimming is particularly good seemingly and a nurse advised you get a discounted gym membership if you swim. Sigh.

Exercise for her is managing to go up and down stairs and sitting with support on a Pilates ball for 30 seconds when she feels she can to try and address loss of core strength without further tightening pelvic floor.

Rheumatologist in his 60s , didn't seem to understand PEM , OI or energy envelope in ME/ CFS.
Kept conflating CF and lumping in fibromyalgia , chronic pain .
Hopelessly stuck in 1990s.
Tooks bloods but advised - "even if we find something it didn't mean you have anything " despite not going into history ( notes from 2018 on file now out of date) and not noting anything .

Cochrane review standing means this will never be debunked .

I'm so sorry to hear this.

 

[bobbler]

Rather amusingly, today I received an email from Catherine Spencer (CEO of Cochrane) seemingly in response to my complaint sent on 23 March. Except the message was obviously meant for someone else as it refers to me as "she" and she has quoted some of the text of my complaint [italicized]. I wonder who else, aside from the Editor-in-Chief, could be responsible for the content and publication of the review...


From: Catherine Spencer <cspencer@cochrane.org>
Sent: 05 April 2023 09:47
To: Caroline Struthers
Subject: RE: Complaints

I think it is that she holds Karla responsible for the content and publication of the
review.

For simplicity, this complaint will focus on two avoidable and serious errors
in the Exercise Therapy for Chronic Fatigue Syndrome Review for which
Karla Soares-Weiser is ultimately responsible.
1. The risk of bias judgement on selective reporting for White 2012 is still
“low risk” when it should have been changed to “high risk”
2. The evidence quality rating for fatigue at end of treatment is “moderate”
when it should be “low”

These and many other errors mean that following the findings of the review could
lead to patient harm which is grounds for withdrawal of the review.

From: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Sent: Thursday, March 23, 2023 11:46 AM
To: Complaints <complaints@cochrane.org>
Cc: Catherine Spencer <cspencer@cochrane.org>
Subject: RE: Complaints

Dear Cochrane Complaints (cc Catherine Spencer)

I have attached my complaint about the Editor in Chief and relevant documents.

I am copying in Catherine Spencer as there are two complaints procedures. One says a complaint about
the Editor in Chief, which this is, should be addressed to the
CEO https://www.cochranelibrary.com/help/complaints . I am not prepared to risk this complaint
falling through the cracks created by this confusion, especially as I am not (knowingly or willingly) a
member of the “Cochrane Community”.

With best wishes

Caroline


Caroline Struthers
Senior EQUATOR Research Fellow

Yeah I think you gave that away with the line:

will focus on two avoidable and serious errors in the Exercise Therapy for Chronic Fatigue Syndrome Review for which Karla Soares-Weiser is ultimately responsible.

Worth checking that this 'accidental hit reply instead of forward' wasn't the one that you noted:

One says a complaint about the Editor in Chief, which this is, should be addressed to the CEO https://www.cochranelibrary.com/help/complaints .

I am not prepared to risk this complaint falling through the cracks created by this confusion, especially as I am not (knowingly or willingly) a member of the “Cochrane Community”.

 

[Hutan]

Recent rheumatology appointment was a gold plated exercise in gaslighting.
Daughter pulled up for having a stick , ( she refuses to use a wheelchair for any appointments after paediatric experience and so pays for this afterwards ) and told to exercise and build up exercise.Swimming is particularly good seemingly and a nurse advised you get a discounted gym membership if you swim. Sigh.

Exercise for her is managing to go up and down stairs and sitting with support on a Pilates ball for 30 seconds when she feels she can to try and address loss of core strength without further tightening pelvic floor.

Rheumatologist in his 60s , didn't seem to understand PEM , OI or energy envelope in ME/ CFS.
Kept conflating CF and lumping in fibromyalgia , chronic pain .
Hopelessly stuck in 1990s.
Tooks bloods but advised - "even if we find something it didn't mean you have anything " despite not going into history ( notes from 2018 on file now out of date) and not noting anything .

Just wanted to express my sadness that you and your daughter had this experience, an experience that so many of us have had versions of. It is absolutely not ok. People whose lives have been so throughly upended, especially young people, need and deserve nurses and doctors with curiosity, diligence and compassion.

 

[FMMM1]

Others can advise.

If this was an NHS appointment then there will be an ombudsman i.e. who deals with complaints. I guess some folks would also highlight via (public) social media.

I work in Government, if a planning application isn't determined in accordance with policy [NICE Guideline] then an appeal will highlight that failure ----

Your daughter shouldn't have had this experience.