2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Cochrane have rejected both the S4ME appeals about their inadequate responses to two separate complaints.

Science For ME said:
Received by email 29th April 2025:
___________________

Decision on Appeal #COMP00196177

Dear Trish Davis,

Thank you for sharing your concerns and for your patience while we investigated this matter.

We have now assessed your Appeal #COMP00196177, submitted on 26th February 2025, regarding the decision to close Complaint #COMP00192844. After careful consideration, we have decided to uphold the decision on Complaint #COMP00192844.

We understand that you may be disappointed by this decision, but our assessment concluded that the handling of the complaint strictly followed standard Cochrane processes and policies.

Please note that, based on the above, we will now close this appeal. You will receive a separate email from the Complaints team closing the corresponding ticket.

Kind regards,

Cochrane Complaint Appeals Boards

________________

Decision on Appeal #COMP00198863
29/04/2025 15:40

Dear Trish Davis and Maree Candish,

Thank you for sharing your concerns and for your patience while we investigated this matter.

We have now assessed your Appeal #COMP00198863, submitted on 26th February 2025, regarding the decision to close Complaint #COMP00195461. After careful consideration, we have decided to uphold the decision on Complaint #COMP00195461.

We understand that you may be disappointed by this decision, but our assessment concluded that the handling of the complaint strictly followed standard Cochrane processes and policies.

Please note that, based on the above, we will now close this appeal. You will receive a separate email from the Complaints team closing the corresponding ticket.

Kind regards,

Cochrane Complaint Appeals Boards
_________________
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It surely can't be a coincidence that they reached their decision within a couple of hours of me sending reminders and asking for a progress report on each appeal.

This was always going to be the outcome. Nobody at Cochrane has a clue about ME/CFS or seems to care about patients, it's all a big pretence.
 
It seems the link to the Editor-in-Chief's 2019 statement in the latest version of the editorial note doesn't work anymore?

I get only a "page not found" message for https://www.cochrane.org/news/cfs

Editorial note

Editorial note (19 December 2024; amended 31 January 2025; amended 25 March 2025):
This Cochrane review was published in 2019 and includes studies from searches up to 9 May 2014. A pilot project for engaging interest holders in the development of an update of this Cochrane review was initiated on 2 October 2019 and has now been discontinued.

Editorial note (2 October 2019):
A statement from the Editor in Chief about this review and its planned update is available at https://www.cochrane.org/news/cfs
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Hilda Bastian said:
This review states that treatment guidelines recommend exercise therapy for people with CFS. This is reflected in a statement in the Plain Language Summary that implicitly encourages use of the intervention: “Exercise therapy is recommended by treatment guidelines and often used as treatment for people with chronic fatigue syndrome.”

This is outdated and misleading.

In support of these statements, the authors cite a NICE guideline for people with ME/CFS that was published in 2007. [1] The NICE guideline was updated in 2021. [2] It no longer recommends exercise as a therapy, and stresses the possibility of harm.
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Response said:
1) Conflicts with the Nice 2022 ME/CFS guidance update?
You state that the review is misleading because the 2022 Nice guidelines (2) do not recommend exercise therapy. This is a circular argument, as the aim of a Cochrane review is to evaluate the evidence independently, not to ensure the findings of a review are consistent with a particular professional group, guideline group, or advocacy group
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They seem to have not understood her point. They are the ones that mentioned NICE in their paper, and she's pointing out that they mentioned the old one that agrees with their conclusions instead of the new one that does not.
 
Hilda Bastian said:
This Cochrane review’s search for studies is now over 10 years out-of-date, and it does not include all eligible recent trials or recently published data from included trials, particularly on harms. [6-8] Up-to-date information on harms is critical for decision-makers, as the evidence on harms in the review is minimal and rated as of very low certainty.
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Lillebeth Larun's Response said:
You point out that potential harms may be associated with increasing exercise, but seem to miss that these are included in the review. Some trials did report on harms, and these are reported in the review, with no difference demonstrated between groups.
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Again missed the point. She's saying the Cochraine review is out of date because newer studies have more evidence on harms, not that the review didn't adequately assess harms in the studies it looked at.
 
Hilda Bastian said:
Furthermore, the participants included in this review’s included trials do not reflect the current population of people diagnosed with ME/CFS, as following the publication of a report by the US Institute of Medicine in 2015, post-exertional malaise has been recognised as the hallmark symptom of the condition. [9]
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Lillebeth Larun's response said:
4) Patients nowadays are somehow different?
It is unclear if you are suggesting that (i) the spectrum of CFS/ME has changed or (ii) the definition of CFS/ME has changed? As no evidence of the first was supplied, we assume it is the second issue.
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Really? She couldn't figure out whether or not Hilda was talking about the definition of ME/CFS changing? It might have made sense to look at the IOM report that Hilda cited, the subtitle of which is "Redefining an Illness".
IOM Report said:
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS
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Lillebeth Larun's response said:
If so, then the current review does apply to patients with *some* form of chronic fatigue but may or may not apply to all subgroups including those falling within more recent narrower definitions. Whatever definition is accepted, clinicians will need evidence on what is helpful for all patients with some form of (idiopathic) chronic fatigue - that is likely a much broader group.
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If the review is about "chronic fatigue" in general, she doesn't understand why you shouldn't refer to the condition in question by the name of a different condition?
 
ME/CFS Skeptic said:
The point was so clear that it seems that Larun et al. are intentionally misrepresenting it.
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If they are not wilfully misunderstanding, their inability to understand would be alarming.

[Edit: I have reworded my comment above in order to adhere to forum rules.]

Larun:
You state that the review is misleading because the 2022 Nice guidelines (2) do not recommend exercise therapy.
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No Hilda states that the 2021 Nice guideline no longer recommends exercise as a therapy, and stresses the possibility of harm.
 
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