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

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Dolphin

Senior Member
Messages
17,567
A comment I saw elsewhere:
I like this article for describing the science part of the controversy. However, there is a second part of the controversy that should be addressed: why did this happen? What were the motivating factors, that would cause renowned professors, researchers and publishers to sell out and lie like this? Were the stakeholders, the people who paid for the study, directly influencing the outcome of the study? Were there other stakeholders involved, who would benefit from these results? This of course, hinges on some conspiracy theories, however is a topic of discussion that could use a little more digging.
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Glycon

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
Dolphin said:
A comment I saw elsewhere: "I like this article for describing the science part of the controversy. However, there is a second part of the controversy that should be addressed: why did this happen? What were the motivating factors, that would cause renowned professors, researchers and publishers to sell out and lie like this? Were the stakeholders, the people who paid for the study, directly influencing the outcome of the study? Were there other stakeholders involved, who would benefit from these results? This of course, hinges on some conspiracy theories, however is a topic of discussion that could use a little more digging."
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Legitimacy of the questions themselves doesn't hinge on conspiracy theories. That isn't to say, however, that some of the questions' presuppositions are necessarily well-founded.

Acknowledging scientific incompetence and research misconduct in this case doesn't require assuming that anyone "sold out" or "lied". I find it much more plausible (barring hard evidence to the contrary) that intellectual arrogance, dogmatism and wishful thinking are what led the researchers astray. (I make no comment about the role of the "stakeholders".)
 
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CFS_for_19_years

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Yogi said:
It really is desperate stuff now clinging on to the PACE trial by Wessely knowing that his beloved HHS PACE is sinking fast.
Your bunker comment reminded me of Hitler Downfall parodies:
https://www.youtube.com/playlist?list=PLD322FE529041CD24
I think we need a PACE trial version of this now
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I had no idea there were so many Hitler Downfall parodies.

Perhaps the writer of this parody could be enlisted to come up with a PACE trial version:
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
anciendaze said:
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.
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nods, definately an issue in that too. Im at the ER a lot due to issues around the ME. So that does lead one to wonder about things in this study.

Cause these researchers were so biased, it is quite likely they put any trips to the ER down to unrelated causes.

What I think this study did show is that CBT and GET are not only unsuitable to recommend treatments for ME/CFS but also for those who have chronic fatigue.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Large Donner said:
[QUOTE="anciendaze, post: 765813, member: 794"


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.
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Its not just the insurance companies which wont be happy about things but many of these physologists themselves dont want to loose a whole group of patients they are themselves making money from consults. Look at the latest study by one of these, they arent going to give up as they will keep doing studies to try to suggest that exercise "may" be good for us eg that latest one about obestity in CFS.

So though GET and CBT are being discreditated, they are going to keep implying we need more and more studies around exercise and try if they can, to get out more bad studies. They will keep burying us if they can. Its about time people stop giving them funding, how can we all balance up the funding descrepancies.

people with fatigue is such a huge group of patients to loose.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
anciendaze said:
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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maybe they cherry picked by only taking in those patients for the research who werent anti exercise (any severe ME patient will already know its bad, they dont need to be in a study to know this) and who thought talk therapy could help? though of cause that all proved to be wrong as study backfired on them anyway.

but i do wonder that on seeing a post by one in this study who didnt really understand ME/CFS at all till they got worst due to the therapies in this study and now says she/he knows what its like to be really sick. Was that the type of patients they cherry picked from the over 3000 sent to them for the study?

Seriously, I dont trust those researchers at all, we probably will never know of some of the things the did in regards to this study to try to push their therapies across as being good. These are researchers who had no issues in being very deceitful.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
worldbackwards said:
I'm of the opinion that we win on the science first, because that is where the credibility is. Plenty of time for conspiracy related fun later.
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Its hard to win and keep winning on the science (eg via good science) though when you have other things strongly influencing this out there, these factors are strongly affecting the science and have done so for a very long time. Those factors are not going to just disappear. The politics (and conspiratories) have been and still are hugely important around us as that is what keeps sweeping us under the rug. The science isnt separated from them.
 
Art Vandelay

Art Vandelay

Senior Member
Messages
470
Location
Australia
Simon wessely
SEPTEMBER 23, 2016 AT 5:38 AM
Sorry to spoil the party but some cold facts are necessaey
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You've got to love the psychiatrists. After promising "cold facts", Wessely introduces none to the argument. His comment is just obfuscation, weasel words and outright lies. He promises a lot but can't deliver.

Which, when you think about it, is an apt metaphor for the treatment he endorses.
 
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