Request to Cochrane to withdraw two reviews on Exercise therapy and CBT for Chronic Fatigue Syndrome (November 2020)

On 18 November I wrote a rapid response on the BMJ article “NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance” It called for Cochrane to withdraw the reviews, as following the conclusions of both reviews could lead to patient harm.

According to the Cochrane policy on reporting serious errors in reviews, I notified the Editor in Chief Karla Soares-Weiser on 19 November.

Our correspondence is below. I was informed today that Cochrane intend to conclude the investigation into the errors in both reviews by January 2021.

From: Caroline Struthers
Date: Thursday, 19 November 2020 at 22:08
To: Karla Soares-Weiser
Subject: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome and
CBT for chronic fatigue syndrome

Dear Karla

Yesterday I had a BMJ rapid response posted “Re: NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance: time for Cochrane to withdraw the reviews

In November 2018 I made a formal complaint [1] about the Exercise therapy for chronic fatigue syndrome review [2] and requested it be withdrawn. I met you in July 2019, along with two people with ME, and again we tried to persuade you not to proceed with publishing an amended version of the review but to withdraw it. Despite watering down its previous overly positive conclusions, the amended review still concludes that “Exercise therapy probably has a positive effect on fatigue in adults with CFS….evidence regarding adverse effects is uncertain.”. I have more recently called for the withdrawal of the review Cognitive behaviour therapy for chronic fatigue syndrome in adults [3]. This review is twelve years out of date yet is still used in four clinical guidelines. It concludes that “CBT is effective in reducing the symptoms of fatigue at post-treatment compared with usual care and may be more effective in reducing fatigue symptoms compared with other psychological therapies”.

Both Cochrane reviews were excluded from the NICE review for the nonpharmacological management of ME/CFS [4] because they didn’t include critical outcomes and included study participants where not all participants had ME/CFS [page 8]. The NICE review also concluded that evidence from the randomised trials for both exercise therapy and CBT ranged from low to very low quality [pages 317, 319]

Shortly after we met, in August 2019, the withdrawal policy changed to make withdrawal possible only in exceptional circumstances. According to the new policy [5], a review should be withdrawn if there is a serious error, such as “…following the conclusions of the published review could result in harm to patients…”.

The findings of the NICE guideline committee have led to a reversal of the recommendations for GET and CBT to treat ME/CFS because of lack of good quality evidence of benefit and considerable evidence of harm [6,7]. Therefore, following the conclusions of the Cochrane reviews which both state that exercise therapy and CBT may be helpful for ME/CFS could result in harm to patients. According to the Cochrane policy [8] I am notifying you of these serious errors

Please withdraw both of these reviews as soon as possible.

With best wishes

Caroline

  1. My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome (November 2018) https://healthycontrolblog.wordpres…iew-of-exercise-for-chronic-fatigue-syndrome/
  2. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome.
    Cochrane Database of Systematic Reviews 2019, Issue 10. Art. No.: CD003200. DOI:
    10.1002/14651858.CD003200.pub8.
  3. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008, Issue 3. Art. No.: CD001027. DOI:
    10.1002/14651858.CD001027.pub2.
  4. Myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome: diagnosis and management [G] Evidence reviews for the nonpharmacological management of ME/CFS:
    https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7
  5. Withdrawing published Cochrane Reviews July 2019:
    https://documentation.cochrane.org/display/EPPR/Withdrawing+published+Cochrane+Reviews
  6. Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. 2019;24(10):1318-1333. doi:10.1177/1359105317726152
  7. ME Association. Consolidated report: Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes, April 2019: https://meassociation.org.uk/wp-con…nd-GET-Final-Consolidated-Report-03.04.19.pdf
  8. Serious errors in published Cochrane Reviews: https://documentation.cochrane.org/display/EPPR/Serious+errors+in+published+Cochrane+Reviews

Caroline Struthers
Senior EQUATOR Research Fellow
UK EQUATOR Centre

From: Karla Soares-Weiser
Sent: 20 November 2020 08:19
To: Caroline Struthers; Rachel Marshall
Subject: Re: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome and CBT for chronic fatigue syndrome

Dear Caroline,

Thank you for your email. As you know, Rachel is coordinating the activities of the proposed update of this review and she will respond to your email within the next two weeks.

With best wishes, Karla

Karla Soares-Weiser (MD, MSc, PhD)
Editor in Chief, Cochrane Library
Editorial & Methods Department | Cochrane Central Executive

From: Caroline Struthers
Sent: 20 November 2020 08:40
To: Karla Soares-Weiser
Cc: Rachel Marshall; Rachel Churchill ; Chris Eccleston
Subject: RE: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome and CBT for chronic fatigue syndrome

Dear Karla (cc Rachel Marshall, Rachel Churchill, Chris Eccleston)

My previous email was not about the update of the Exercise for CFS review. I was notifying you of a serious error in two published reviews which should, according to your policy, lead to their withdrawal.

The policy on serious errors states that you should be notified, which I did in my previous email.

I have copied in the Coordinating Editor of the CRG and who I believe is the appropriate Network Senior Editor to assist the process

With best wishes

Caroline

From: Rachel Marshall
Sent: 24 November 2020 16:11
To: Caroline Struthers
Cc: Karla Soares-Weiser
Subject: RE: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome and CBT for chronic fatigue syndrome

Dear Caroline,

Thank you for your email and for raising concerns of a serious error in the current version of the review.

As per our policy on serious errors “The Editor in Chief along with the Co-ordinating Editor of the Cochrane Review Group (CRG) that published the Cochrane Review and the Network Senior Editor will investigate and agree a course of action.” We aim to conclude the investigation by January 2021, and we will be back in touch with you in due course.

With best regards, Rachel

Rachel Marshall
Senior Editorial Officer
Editorial & Methods Department | Cochrane Central Executive

From: Caroline Struthers
Sent: 24 November 2020 17:07
To: Rachel Marshall
Cc: Karla Soares-Weiser
Subject: RE: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome
and CBT for chronic fatigue syndrome

Dear Rachel

Thank you for your response. I would like to reiterate that I am raising concerns about serious errors in two published reviews. Please can you confirm that you have understood this before you proceed with the investigation?

  1. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome.
    Cochrane Database of Systematic Reviews 2019, Issue 10. Art. No.: CD003200. DOI:
    10.1002/14651858.CD003200.pub8.
  2. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in
    adults. Cochrane Database of Systematic Reviews 2008, Issue 3. Art. No.: CD001027. DOI:
    10.1002/14651858.CD001027.pub2

Please can you also let me know who the Co-ordinating Editor of the CRG is, as I see Rachel Churchill is on extended leave. I presume Robert Boyle is the Network Senior Editor who will be involved in the investigation, as Chris Eccleston has left Cochrane.

With best wishes

Caroline

I had confirmation today that the investigation into the serious errors will include both Cochrane reviews.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s