Cochrane Exercise and ME/CFS Review Update: June 2021

Report by Hilda Bastian, Independent Advisory Group Lead

Posted online: 1 July 2021

Note: Background information on this project is here. The views expressed in this report are those of the author, and are not necessarily shared by the Independent Advisory Group (IAG), the review team, or Cochrane.

This is the second monthly report on progress with this project. You can see a list of these reports here. This month, there are updates on:

  • The role of the IAG in the editorial process for the review;
  • Preparing for our first consultation; and
  • Membership of the IAG.

Along with this report, we’ll be updating bios and disclosures of interest at the end of the month as needed. This month, there are updates for:

  • Hilda Bastian (disclosures) (IAG member)
  • George Faulkner (bio) (IAG member)
  • Kay Hallsworth (bio) (review author)
  • Jaime Seltzer (bio) (IAG member)

And finally, a reminder that you can contact us directly at Cochrane.IAG@gmail.com

Hilda Bastian
29 June 2021

Role of the IAG in the editorial process for the review

There are several “firsts” in the editorial arrangements for this review. Two that directly affect stakeholder engagement are the IAG itself, and the public consultation on a draft protocol for a Cochrane review.

The protocol for the review has two parts: a background, and then a detailed description of the review’s methods. Those methods set out how the various steps of the review will be done, and the rules that will be followed. Those steps will begin as soon as the protocol is finalised. (The background and the methods will later form the first part of the review.)

We hope to get to that draft protocol before the end of the third quarter of the year. However, with so many groups of people and feedback loops involved, it’s hard to be sure how quickly this will go.

Here’s where we are now, and what’s planned:

  • The authors are working on the protocol – and the IAG will be providing advice along the way, including about the first draft before peer review;
  • The IAG will consider the peer review reports, and again provide advice to the authors;
  • When the editorial group signs off on a revised version, the draft will go out for public consultation and the IAG will engage with stakeholders about the draft;
  • The IAG will provide advice to the authors based on the results of their consultations, and the final protocol will be produced – then the evidence search and analysis will begin;
  • When the final protocol is published, comments can be submitted to The Cochrane Library – and plans will be developed for further progress. 

If there are differences between the review team and the IAG that can’t be resolved between them, the final decision on that issue will be made by the Editor-in-Chief.

Preparations for our first consultation: the critique story so far

Last report, I explained that our starting point had been the critiques of the review made from 2008 to 2020, and a content analysis of the issues raised in them. That will play a pivotal ongoing role throughout this review, enabling us to monitor how existing points are addressed, and to add and track new discussion points that arise throughout the process. Importantly, it will enable stakeholders to know which points are already on the agenda.

The discussion points have been summarised into very brief descriptions, and there are over 100 of these now. The IAG will be starting an engagement process around this analysis in the coming weeks. We will be seeking input on whether those summaries cover all the aspects of the Cochrane review that stakeholders want to raise. And it will introduce the community to the way we’ll be using this framework through the editorial process, so people can see how new issues can get on the agenda as the review develops.

This first IAG document will be the start of a series of efforts that we hope will facilitate engagement with the draft protocol when it comes in the next few months.  We hope to smooth the way – and at the same time, work through the inevitable teething problems of new processes before that “big one” arrives!

Independent Advisory Group (IAG) membership

The membership of the IAG is almost complete. I’m pleased to introduce our ninth member, Miranda Cumpston. Miranda has 15 years of wide-ranging experience in systematic reviews and the methods of evidence synthesis – with expertise in several methods that have been contentious in this review. Miranda is a senior methods editor for Cochrane Public Health. She is one of the co-editors of Cochrane’s Handbook on methods for Cochrane reviews, as well as a member of the GRADE Working Group. Her bio and disclosures are here.

The IAG will be deciding on our tenth member in the coming weeks. We’ve had expressions of interest from both individuals and groups, as well as suggestions of individuals and areas of expertise and experience: many thanks to you all! At the same time, the IAG and the editorial group will be considering possible peer reviewers for the protocol and review.

The areas of expertise that have been suggested are wide-ranging, from people who have severe ME/CFS or care for people with ME/CFS, to people who have recovered, as well as suggestions about diversity, and valuable research disciplines/experience. The wide range of possible expertise underlines how critical it will be for the IAG to establish ongoing communication with stakeholders who are not directly involved with the IAG.