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

[Midnattsol]

Hugs. It’s so frustrating, isn’t it. At best you’re treated like a novelty who’s there for the superficial “social awareness” quota of “respecting lived experience.”

Not like you’d have anything useful or productive to say on the actual science.

I was thinking about clinicians focusing on the importance of mental health of their patients when going to work today, how practical help (and/or better economy) would help more than being sent to CBT. But there is no system for patients to tell clinicians so (especially not after the potential initial happiness of believing you'll get any useful help).

But my personal experience, and the experience of other sick/disabled people I know, is seen as anecdote. While their own clinical experience that this helps is somehow valid. With some actually believing that patients not coming back means they have recovered not simply given up/changed provider in the hope of getting actual help. Then there are the people who think I am the(ir made believe) classic fatigue patient: I just thought I was ill. Obviously I'm not since I'm working (or when I was a student: studying). No accomodations for you!

 

[jnmaciuch]

Obviously I'm not since I'm working (or when I was a student: studying). No accomodations for you!

God, same. “Obviously you’ve harnessed the power of positive thinking to “overcome” your illness. What do you mean you can’t take 4 classes and work for 12 hours straight? Yes I know you have an illness but obviously you’re one of the good ones who can power through it so…”

 

[rvallee]

Principles and values, generic meaningless promotional marketing material, who can even tell the difference these days? Almost every word of this is a lie. They value none of this, and act the opposite.

What is the best place to write a firm but polite message telling what I think of their hollow principles and blatant hypocrisy? I don't see the general contact form being any useful here.

 

[Trish]

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

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
_________________

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.

 

[NelliePledge]

Using their bureaucracy to make it go away.

 

[Peter T]

Slowly the petition is inching towards 16,000.

At the time of writing there are 15,981 signatures.

 

[NelliePledge]

The petition has now reached 16,000

 

[MSEsperanza]

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

 

[Caroline Struthers]

Just noticed authors have replied to Hilda Bastian's comment on the review - today (sorry yesterday) https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/read-comments?cookiesEnabled

 

[forestglip]

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.

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

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.

 

[Utsikt]

Just noticed authors have replied to Hilda Bastian's comment on the review - today (sorry yesterday) https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/read-comments?cookiesEnabled

I get an error when I try to follow the link

Edit: it works now! Don’t know what went wrong.

 

[forestglip]

I get an error when I try to follow the link

- https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=457323262

 

[ME/CFS Skeptic]

It states:

We determined that the review still addresses a current question, that the review uses valid methods, and that it is well-conducted

So: we the reviewers determined that our review is well-conducted?

 

[ME/CFS Skeptic]

They seem to not have understood her point.

The point was so clear that it seems that Larun et al. are intentionally misrepresenting it.

 

[forestglip]

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.

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.

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.

 

[forestglip]

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]

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.

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".

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS

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.

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?

 

[Jonathan Edwards]

It must be hard to be world famous for writing the worst Cochrane review ever.

 

[Robert 1973]

The point was so clear that it seems that Larun et al. are intentionally misrepresenting it.

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.

No Hilda states that the 2021 Nice guideline no longer recommends exercise as a therapy, and stresses the possibility of harm.

 

[rvallee]

It states:

So: we the reviewers determined that our review is well-conducted?

Who needs peer review when you can simply do self-review of work you fully agree with?

And when you consider how weak peer review actually is, whew the bar just keeps getting lower and lower, to defend a failed status quo, no less.

 

[rvallee]

I really wonder what Hilda still thinks of Cochrane. She has gone above and beyond defending them throughout this, and this is what they do in return.