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Stat News: Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.
Problem is, the study was bad science.

And we’re now finding out exactly how bad.
Click to expand...

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

Wide-ranging article on the preliminary analysis of the released PACE data and the back story to it. First highlighted by @Simon in a separate thread.
 
Esther12

Esther12

Senior Member
Messages
13,774
Personally, I'm not keen on the way it presents patient concerns as stemming from their personal experience of the illness. Maybe it's just because that was not my experience though. I didn't assume that CBT/GET were implausible for myself, it's just that when I looked at the evidence I found a lot of spin and quackery.

Still lots of other good stuff in there though. Always good to get more from Wessely (so long as it's reported by someone who understands the details).
 
D

Denise

Senior Member
Messages
1,095
J.G

J.G

Senior Member
Messages
162
Fantastic article.

As an aside, I was struck by the image below the article title. That's the first artwork accompanying an ME/CFS article I've seen that profoundly captures the experience of living with it. Deeply moving.
 
anciendaze

anciendaze

Senior Member
Messages
1,841
What this shows is that data collected by PACE researchers, when evaluated by their own published criteria, show positive responses at rates which are typical of anecdotal evidence, not a "randomized, controlled trial based on objective measures."

When positive responses appear at such low rates, and there is a problem with a bias introduced by "available cases", questions about adverse responses become more important. At this point we run into a stone wall. Published data by PACE researchers doesn't even allow anyone to estimate the rate at which any group made trips to emergency departments. We have only the authors' assurances that any such visits, if such occurred, were totally unrelated to PACE therapies.

Based on my own experience, and that reported by other patients, I find it highly implausible that anyone could have 640 ME/CFS patients in a study for a year without some going to emergency departments. Either they were studying patients with some other condition, or they were ignoring evidence of serious adverse events.
 
mfairma

mfairma

Senior Member
Messages
205
Overall, I think this is excellent. The progression from issue to issue was fluid and well done, though I think devoting such little energy to definition undersold one of the most compelling arguments. Hard hitting, though, I agree.
 
Large Donner

Large Donner

Senior Member
Messages
866
[QUOTE="anciendaze, post: 765813, member: 794"
Based on my own experience, and that reported by other patients, I find it highly implausible that anyone could have 640 ME/CFS patients in a study for a year without some going to emergency departments. Either they were studying patients with some other condition, or they were ignoring evidence of serious adverse events.
Click to expand...

This is something I have thought about in terms of the cohort they used. Now that the PACE trial has been totally discredited there's always the chance that another BPS crowd or the government angle may be, "well we need another PACE trial" now as the last one didn't answer any of the questions about ME and the "science is not settled".

The last thing we need is a momentum from the likes of the people behind the DWP or insurance companies for a new trial that will take another ten years.

It fairly obvious that if people are not prepared to stop the MAGNETA trial and the LP trial that Crawley and associates have been given money for that no one in any real authority is understanding the dangers created by the PACE trial.
 
anciendaze

anciendaze

Senior Member
Messages
1,841
By the way, there is a big gap between the 3158 referred for treatment by other doctors who thought the patients had "CFS", the 800-900 the PACE authors "intended to treat" and the 640 who completed the trial.

Can anyone give an explanation that is different from "cherry picking" the patients you are willing to treat?
 
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