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

Many thanks! I very much take your point about what different views of exercise might mean - I can assure you it didn't mean opposite ends of the spectrum. But you can see the views of the people who were chosen for those roles from their public statements, as I did when I was looking into their backgrounds. (There were interviews as well.)

Why I chose ME/CFS Australia: I had multiple national organizations on my list - I spent a long time researching ME/CFS groups. They were also one of the groups that expressed interest. At that point, Europe and the US were already represented, and although #MEAction is also clearly an international group, not just the US, I was considering options in the southern hemisphere.

 

Very disappointed that I don't see any patient rep who clearly represents the patient population arguably most impacted by exercise, UK pwME. From comments made above, I assume that the representative from the European ME Alliance is meant to fulfil that role, but I don't see myself represented at the moment.

 

I've not received anything. I don't think I was ever included in the list.

I suspect, as usual, I have completely misunderstood what the process was.

meh

 

Would that be this Peter Gladwell? I'd think so

'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020. | Science for ME (s4me.info)

 

I would far prefer to see @PhysiosforME involved rather than Peter Gladwell (BACME, physiotherapist).

eta: I would think that any key member of BACME would be considered to have a definite COI
see BACME board:
https://www.s4me.info/threads/bacme...led-to-11th-may-2021.13349/page-4#post-345838

 

Perhaps you could look a bit more into George Faulkner's background? (Several invitations/proposals were declined - UK among them. The pandemic complicated things in very many ways for many people.) And as I pointed out, there's still one position to fill.

 

Only able to skim the report so without having read the report or the first replies on the forum:

Thanks for posting here @Hilda Bastian, and thanks to all forum members who have been appointed to the IAG or review team and also to those who engaged and are engaging in the discussion in any way.

And for now, as it seems that S4ME weren't invited in any way, and since I don't know when or if I will be able to reply properly, just two questions:

1) There seem to be 3 systematic reviewers appointed, right?

So how about providing a space where people invited and elected by S4ME forum members could have a discussion with the systematic reviewers?

Forum members could discuss this on a private forum first, and if we found some topics and people wanting to discuss these with the reviewers, Cochrane could provide an adequate online space for an exchange with the systematic reviewers.

What do you think?


2) From the report:

It's great that the spreadsheets are public, @Hilda Bastian. Will your 'first rough distillation' also be public?

If not and if you want to keep it confidential, is it possible to make it available, in confidentiality, to interested forum members who could discuss this in a private conversation group or on a private subforum on S4ME?

(edited to fix quotation)

 

I consider myself reasonably well connected and plugged in to the UK, and less so internationally, ME advocacy community. I mean no disrespect to George Faulkner, but I didn't recognise his name and it has now taken a Google search to be reminded that he has written about the review and issues with GET. I predict that the vast majority of UK pwME will be in exactly the same boat.

I note that he is listed under "Individuals who had been involved in discussions with Cochrane preceding the IAG" and as an "independent researcher" - therefore, even though I thank him for writing about these issues, I still do not see myself represented.

 

Sorry if it looks like that, although I can't see how that certainty about something so specific is derived from the report. Either way, I can assure you "to have someone actively supporting GET for ME/CFS, to balance someone who does not support it" was definitely not the aim, and nor was that done.
[Typo fixed]

 

Ah - the email was definitely sent (I got mine). Here's the original from March about to sign up:

Where can we get updates and answers to other questions?

• You can sign up for updates to this webpage by emailing: exerciseforme-cfsupdates@cochrane.org

 

Thanks - already added Andy's UK comment to the list for the IAG.

 

Thank you!

There will be a communication channel with groups that aren't on the IAG - and how that will work will be discussed with them: including S4ME.

Your question 1) If you mean authors for the systematic review, there are 8: https://community.cochrane.org/orga...gement-high-profile-reviews-pilot/author-team

I'll add your suggestion to the list of ideas for consideration, thanks. I'm assuming you mean the authors of the systematic review, but let me know if not.

2) The rough distillation - no, the rough distillation is too messy for that, and there is already feedback from the IAG members pointing out things that need work. The only reason it was even shared internally as it is currently is, was as a shortcut for time. One of the purposes of going public with the next version is to get just that kind of feedback you're talking about. There'll be more on this in the June monthly report.

There'll be several opportunities in the coming months to participate.

 

My summary of ‘Cochrane Exercise and ME/CFS Review Update: May 2021’. All I've tried to do is distil the original document into the important 'highlights' without adding any extra commentary - I hope this helps.


What has happened?

Collection and analysis of critiques

Critiques of the existing review were gathered from a variety of sources, including S4ME, by Hilda. She has refined these into a format that will then feed into the review process.


The review has been moved out of Cochrane’s Common Mental Disorders Group to Cochrane's MOSS Network.

Acronyms for the groups involved in these editorial arrangements are

• MOSS: The Cochrane Musculoskeletal, Oral, Skin, and Sensory Network;
  
  
• PaPaS: The Cochrane Pain, Palliative and Supportive Care Group;
  
  
• EMD: The Cochrane Editorial and Methods Department.
  

An author team was established.

This consists of

• Consumers: Mary Dimmock (USA, carer, with ME/CFS activist background), Kay Hallsworth (UK, person with ME/CFS, non-ME/CFS-activist background);
  
  
• Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
  
  
• Systematic reviewers with relevant methodological expertise: David Nunan (UK, experience with systematic reviews of exercise as an intervention); Argie-Angeliki Veroniki (Greece, statistician);
  
  
• Systematic reviewers from Cochrane response: Hanna Bergman (Israel), Nicholas Henschke (Germany, lead author).

The Independent Advisory Group (IAG) was established.

The stated goals of this newly formed group are to:

• Ensure and facilitate responsiveness to stakeholders' concerns; and
  
  
• Improve the relevance, accessibility, and credibility of the revised and updated review.
  

Current IAG membership (eight appointed, two vacancies of which one will be filled shortly):

• Nominees of three organisations representing people with ME/CFS:
  
  
  • Penelope McMillan (with Penelope Del Fante, and proxy, Geoffrey Hallmann) (Australia) - ME/CFS Australia;
    
    
  • Jaime Seltzer (USA) - #MEAction;
    
    
  • Samuli Tani (Finland) - European ME Alliance;
    

• Two people from a clinical background with active interest in ME/CFS:
  
  
  • Lily Chu (USA) (medical practitioner);
    
    
  • Peter Gladwell (UK) (physiotherapist);
    

• Individuals who had been involved in discussions with Cochrane preceding the IAG:
  
  
  • Hilda Bastian (Australia, Lead);
    
    
  • Mike Clarke (Ireland/UK, systematic review methodologist); and
    
    
  • George Faulkner (UK, independent researcher).
    

 

Sorry if this is covered already, but I was prompted to wonder after reading that patient experience whether the experiences of severe ME/CFS patients will be part of this?

 

Something I wanted to say: I don't think that exercise has any special role to play in treating ME/CFS. Looking beyond my n=1 experience, there doesn't seem to be any data unambiguously showing improvement with exercise. Most of the work in this area has been done by people who were looking for any effect, no matter how small, that could support their preconceived idea that ME/CFS patients just had to exercise more and that this would somehow cure patients. This idea is a hypothesis that has failed but there is a refusal to acknowledge this. Its failure needs to acknowledged so that we can finally move on and focus on other hypotheses. Unfortunately some people's jobs now depend on ME/CFS being viewed as something that needs to be treated with exercise and psychotherapy so there is resistance to acknowledge that these approaches don't work.

I'm able to do 20-30 minute walks on most days. I could do much longer ones if I wanted to but this increasingly causes next-day deterioration which builds up. I've never had the impression that exercise is viable treatment for ME/CFS. When I became ill, I was in good physical shape so deconditioning cannot possibly be the cause of the illness. Too much physical activity however is a reliable way to get worse in the short term. I thnk there is often confusion about what patients are actually saying when they mean that GET is not appropriate. They aren't saying that any amount of exercise is bad. They're saying that encouragement to do more or the involvement of a therapist is bad (because there is the implicit assumption that the patient is mismanaging their activity levels and needs external help). In practice there never seems to be too little pressure on patients to do more, and they never want to do less. Most patients do what they can and find their own activity levels. Adding some therapist that believes they need to get patients do more will add very little at best, and at worst sets patients up for a cycle of crashing and self-blame.

If poor fitness had any important causal role in the illness, it should be easy to objectively demonstrate large and lasting improvements.

I hope that there will be a discussion of whether this historical focus on exercise is justified. If it's not justified, then the review should highlight this.

Another aspect that needs attention is whether harms of GET are being reported honestly in clinical trials and by proponents of CBT/GET. I don't have a link at the moment but very recently Trudy Chalder was describing an exertion induced crash in a long covid patient as abnormal behaviour, rather than as actual worsening. When harms are redefined as abnormal psychological reaction then of course there are no harms. How do we know that they haven't redefined harms out of their studies in the same manner? The assumption that studies tell us anything reliable about harms seems unwise.