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David Tuller: Trial by Error Cont'd: The New Fitnet trial for kids

Kati

Patient in training
Messages
5,497
http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/
Another great read. David made requests both on Facebook and Twitter to leave comments at the link above.


Exerpt:

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Sean

Senior Member
Messages
7,378
"Earlier this year, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness, including the evidence on treatments like CBT and GET. The Health Council appointed a committee to conduct the review. Among the committee members are Dr. Knoop and colleagues who share his perspective."

Unbelievable. These people have no shame at all. If Knoop had a shred of integrity left, he would have ruled himself out of consideration for the committee.

Independent review, my arse.
 

Kati

Patient in training
Messages
5,497
Did Crawley and her group attend IACFSME? Why not? Ah, too far...
Did Crawley and her group attend Invest in ME? Why not? Ah. No excuse.

And yes, @alex3619 things have not changed. Conflicts of interest, lies, press release, egos, strong ties enough to eject and evict really smart scientists (Jonathan Kerr comes to mind) but there are others. and really really bad science. The one thing that changes is we have a very stubborn investigative journalist who knows his way around science, and who is not afraid of uncovering the truth.

Share David's work widely.
 

Cheshire

Senior Member
Messages
1,129
Another excellent article by David Tuller, an indepth analysis of everything that's going wrong with Fitnet.

Great point about PEM and NICE criteria:

By making this subtle but significant shift—a sleight-of-guideline, so to speak—Dr. Crawley and her colleagues have quietly transformed their prospective cohort from one in which post-exertional malaise is a cardinal characteristic of the illness to one in which it might or might not be present. And they have done this while still claiming–inaccurately–to follow NICE guidelines. As currently described, however, Dr. Crawley’s new study is NOT a study of chronic fatigue syndrome, as she maintains, but of chronic fatigue.

As a result, the actual study participants, like the PACE cohort, will likely be a heterogeneous grab bag of kids suffering from fatigue for any number of reasons, including depression–a common cause of exhaustion and a condition that often responds to psychotherapeutic interventions like CBT. Some or even many participants—an unknown number—will likely be genuine ME/CFS patients. Yet the results will be applied to ALL adolescents identified as having that illness. Since those who actually have it suffer from the required symptom of post-exertional malaise, an intervention that encourages them to increase their activity levels, like CBT, could potentially cause harm.
 

Cheshire

Senior Member
Messages
1,129
About "recovery" in the Dutch trial (we've yet seen these arguments, but the issue is very clearly summed up by Tuller):

Second, the “recovery” figure in the Dutch FITNET study was a post-hoc calculation, as the authors acknowledged. The protocol for the trial included the outcomes to be measured, of course, but the authors did not identify before the trial what thresholds participants would need to meet to be considered “recovered.” The entire definition was constructed only after they saw the results—and the thresholds they selected were extremely lenient. Even two of the PACE authors, in a Lancet commentary praising the Dutch study, referred to the “recovery” criteria as “liberal” and “not stringent.” (In fact, only 36% “recovered” under a more modest definition of “recovery,” but the FITNET authors tucked this finding into an appendix and Dr. Crawley’s FITNET-NHS protocol didn’t mention it.)

Now, the fact that “recovery” was a post-hoc measure doesn’t mean it isn’t valid. But anyone citing this “recovery” rate should do so with caveats and some measure of caution. Dr. Crawley has exhibited no such reticence—in a recent radio interview, she declared flatly that the Dutch participants had made a “full recovery.” (In the same interview, she called PACE “a great, great study.” Then she completely misrepresented the results of the recent reanalyses of the PACE trial data. So, you know, take her words for what they’re worth.)
 

Cheshire

Senior Member
Messages
1,129
Another important point:
In the end, two-thirds of those in usual care received in-person CBT, and half received graded exercise therapy.

And yet less than one in ten of the usual care participants were found to have “recovered” at six months, according to the 2012 study. So what does that say about the effectiveness of these kinds of rehabilitative approaches in the first place? In light of the superlative findings for online CBT, why haven’t all chronic fatigue syndrome patients in the Netherlands now been removed from in-person treatments and offered this more convenient option? (Dr. Crawley’s FITNET-NHS proposal tried to explain away this embarrassing finding of the Dutch study by suggesting that those providing usual care were not trained to work with this kind of population.)
 

Chrisb

Senior Member
Messages
1,051
It would be interesting if there were still in existence somewhere tapes or recordings of a talk (or possibly more than one talk) given to a meeting of the MEA probably in the early 1990's when Peter Behan was the guest speaker. I remember him being excoriating in his criticism of those who failed to distinguish between chronic fatigue and ME.

It would be useful to show unbelievers the advances in medical knowledge over the last 25 years.
 

lansbergen

Senior Member
Messages
2,512
It would be interesting if there were still in existence somewhere tapes or recordings of a talk (or possibly more than one talk) given to a meeting of the MEA probably in the early 1990's when Peter Behan was the guest speaker. I remember him being excoriating in his criticism of those who failed to distinguish between chronic fatigue and ME.

@charles shepherd ?
 

Solstice

Senior Member
Messages
641

Gijs

Senior Member
Messages
690
Gunderson is a biologist and against all (good) critisme from patiënts on science, that is dangerous hey said!
So scientists can say what ever they want, we patiënts must obey the great great scientists like Gunderson e.a. Like cheeps.
 

Seven7

Seven
Messages
3,444
Location
USA
You know this article highlights the key issue if we keep the CFS name, they can keep lumping us with the CF people. I think we need a name change ASAP and to start with require PEM. and maybe other studies can include the non PEM. Or everytime we do a study we analyze the data in distinct soubgroup PEM or no PEM.