'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

Looks like just name and e-mail is needed. I'd be surprised if she wanted to exclude patients!

 

It asks for an 'ORCID code' too. I could not see any comments so I wondered if you need be 'signed in' some how to comment.

 

Just the name and e-mail are starred, and that's what normally indicates required fields. I could be wrong, but I'd be surprised if her blog excluded those without ORCID.

 

Well done and thanks to everyone who did this. It wasn't me (though perhaps she might also have read some of my comments on PubMed Commons when she ran it).

 

Well you did get quoted, along with Bob.

So your input was important @Tom Kindlon.

 

Wow.

That's some brave, outspoken blogpost! Putting here feet right into the middle of the controvers and not only siding with patients, but critizing researchers, reviewers and even the basic tools that PACE resides on. And more.

Saw some comment a while ago, that she was reading up on the subject, and might write something. Did not expect this level of scrutiny.

And her PhD supervisor is one of the authors of the IPD review that got retracted before publication..? That will lead to an interesting week I'm sure

As we know, not many people are willing to do what she just did with posting this blog. We may not see to many public comments, but this will not go unnoticed. She lifts up so many things from the history and background, that others would rather not got public attention.

There's so much quotable in this blog, it's hard to choose - but I really love how she sets things into a bigger frame right from the start:

 

There some comments now on the blog, scroll to the bottom of https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

 

This bit - wasn't there something about it also beeing the biggest trial in psychology...? With the added prestige with that, but don't know it's correct or a source?

 

credit where credits due Tom

 

good comment-

"I was on the Pace Trial allocated to cbt."...

"What annoys me is the way that my data and that of the other participants was twisted to fit their narratives"...

https://blogs.plos.org/absolutely-m...ercise-dispute-matters-so-much/#comment-33155

 

It's a good article.

One issue for me is the use of the term "consumer". I know this is a Cochrane thing (well, that's me told anyway), but part of the issues stem from terminology that divides people into groups or "camps", when in reality these groups are fairly fluid.

It is also the fact that a self-appointed authority group gets to decide what other parties are called, without much in the way of negotiation on the issue.

Do you feel like consumers (even healthcare consumers)? Or is the lack of access to adequate healthcare in this field a disqualifying factor here?

I'm not a "consumer". I wasn't initially an "activist" either. I can't even be a proper "advocate" - you're all perfectly able to speak for yourselves!
I'm no longer an "academic" or a "researcher" - although I'd like to get back to that - if any institution would ever have me back.

Guess I'll have to stick with the term "unemployed troublemaker"!

 

Indeed, pacing is simply 'enduring', is how we survive. That Action for ME definition is utter codswallop.

 

I have always rather like being labeled as a "professional irritant".... process. process, 'process is all' is my mantra!

 

Trevor Butterworth is Exec Director of Sense About Science USA
https://twitter.com/user/status/1094582723472183296

 

A good article. The consumer term is very odd.

Action for ME on pacing is bad.

I’m not familiar with this action for ME and how they actually worked and opposed PACE in the initial phase, if at all.

But it’s a shame they wasn’t up to par and did better in the early phases. It may not have been easy, but still. You wonder how more wasn’t done to try to “prevent” PACE. Asking a lot here, but if they knew the the details in the protocol, which they should, it seems kind of strange.

 

https://www.me-pedia.org/wiki/Action_for_ME#Involvement_in_PACE_trial_controversy

 

Ok, thanks. And wow. Know PACE as presented and trial 2011 to date, but wasn’t aware of afME close relationship to both governments, PACE investigators and insurers. But should have known, -cause how could you set up that kind of trial without support of people you “control”?

 

It's a common thing. My health care system does the same. We're users or clients. I think it's in part because not everyone who interacts with health care is a patient in the sense of being sick and in need of care. Healthy people are expected to have regular (or occasional, jury's still out on what is appropriate) and aren't technically patients for those interactions yet they still use the services.