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

I am grateful to the many people who have urged me to look at the issues related to the PACE trial and the related Cochrane review in recent years: you were all right – it was worth the effort. (I’m not naming any, as there were so many over the years that I’m sure to leave someone out: this was a mountain made of molehills.)
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Well done and thanks to everyone who did this. :thumbup: It wasn't me (though perhaps she might also have read some of my comments on PubMed Commons when she ran it).
 
Tom Kindlon said:
Well done and thanks to everyone who did this. :thumbup: It wasn't me (though perhaps she might also have read some of my comments on PubMed Commons when she ran it).
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Well you did get quoted, along with Bob.

Robert Courtney and Tom Kindlon are both people with lives severely affected by ME/CFS, who critiqued the PACE trial intensively. They posted detailed analyses of the Cochrane review and its verdict on the PACE trial and other evidence in Cochrane’s commenting system. Their comments from 2015 to 2016 raised important issues, but the review’s authors rather brushed off their concerns.
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So your input was important @Tom Kindlon. :trophy@
 
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 :-P

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:

Sometimes, a dispute with a consumer movement comes along that has profound implications for far more than the people in it. I think the dramatic clash between the ME/CFS patient community and a power base in the evidence community is one of those. It points to weaknesses in research methodology and practice that don’t get enough critical attention. It raises uncomfortable questions about the relationship between researchers and policy communities. And it pushes the envelope on open data in clinical trials, too.
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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?

White and colleagues’ proposal became the PACE trial in 2005, after the MRC awarded it the biggest grant ever for an ME/CFS trial.
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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"!
 
I think you make a good point, Lucibee. There doesn't seem to be a satisfactory term. We are not consumers, as there is nothing for us to consume, nor are we a 'community' any coherent sense. We are lots of sick individuals who sometimes come together in common cause and for mutual support.

I don't feel like a consumer, or a client since no one is giving me anything to 'consume' and 'client' implies someone providing services for that client. I'm not even really an ME patient since that implies a doctor or some other health professional is providing me with health care or as either treatment or medical support for my ME which they are not.

I don't like the term ME sufferer either, because, although true, it seems to seek to define who I am. I end up using the neutral expression 'person with ME' or pwME.

Perhaps I'm a pwME and accidental occasional activist.

But in the context of this article and Hilda Bastian's background I think her use of the term consumer is understandable:

I was a health consumer advocate (aka patient advocate) from 1983 to 2003, including chairing the Consumers’ Health Forum of Australia (CHF)...
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Hutan said:
It is good, especially for someone from outside the usual ME advocacy circles. This definition of pacing bothered me though. I blame @Action for M.E. for it a lot more than Hilda Bastian.



Pacing isn't a treatment that assures your condition stabilises or, much less, that recovery is achieved.
Pacing doesn't involve 'very gradually increasing activities'. That sounds a lot more like 'graded exercise therapy' or the now more fashionable 'graded activity therapy'.

Subsequent posts related to pacing having been moved to a thread in Lifestyle Management:
https://www.s4me.info/threads/pacing-definitions-and-sources-of-information.8098/
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Indeed, pacing is simply 'enduring', is how we survive. That Action for ME definition is utter codswallop.
 
Lucibee said:
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"!
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I have always rather like being labeled as a "professional irritant".... process. process, 'process is all' is my mantra!
 

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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.
 
Lucibee said:
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"!
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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.
 
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