Thread by @davidtuller1

Jeff @ManvBrain, since I'm one of the "loudest" voices in the PACE debate, as you write in NY Mag, it's curious that you didn't seek to talk with me about the issue before describing my work. Your piece really misrepresented my work, based solely on PACE authors' bogus claims.1/

I appreciate that you referred to me as an academic. Other stories have called me an "activist"/"campaigner" but ignored my academic credentials. But you did not mention I'm in public health--not hieroglyphics, Finnish literature, or physics.2/

In academia, the discipline matters. Omitting that I have public health training obscures my expertise in dealing with public health issues, such as epidemiology. (I'm not an epidemiologist but studied it in the course of obtaining my degrees.) 3/

You write that I "found fault with its [PACE's] protocol." This is a misrepresentation. Had they followed their protocol, they would have shown zero or minimal results in their subjective outcomes. I found fault with the fact that they DID NOT ADHERE TO THEIR OWN PROTOCOL.4/

You also write that I criticized their definition of "recovery" as being "weak." That's also a misrepresentation. I criticized them for WEAKENING ALL FOUR OUTCOMES THAT CONSTITUTED RECOVERY IN PACE, then refusing to provide the data about what the findings would have been.5/

When patients wanted to see the original data per the protocol outcome measures, they refused and called them "vexatious." This was disgraceful. They lost in court and QMUL was ordered to turn over the data.6/

The data proved what everyone knew--that they weakened their protocol measures in ways that generated much more attractive outcomes. They then attempted to hide this by slandering patients and accusing them of being anti-science. This was also disgraceful.7/

You don't mention that in PACE, all their objective outcomes had disastrous results. On average, no one got back to work, no one got off benefits, no one was more fit, and any improvements in walking ability were clinically insignificant. 8/

The PACE authors then claimed that their own objective measures were not objective after all. This is absurd. No one forced them to choose these objective measures. It is not proper science to completely disavow your own objective measures once the fail to prove your point.9/

You failed to mention Virology Blog's open letter to The Lancet, which I organized, that was signed by more than 100 scientists, physicians, academics, from around the world denouncing the trial and calling for an independent investigation. 10/ virology.ws/2018/08/13/tri…

You failed to mention the published reanalysis of PACE's findings (I was a co-author), which found that per the protocol measures, they had null "recovery" and only marginal results for "improvement"--well within what would be expected from bias alone. 11/ bmcpsychology.biomedcentral.com/articles/10.11…

Instead, you simply repeated the PACE authors' ridiculous argument that their results were "solid." You wrote: "While some patients had already improved with regard to some symptoms before the study began, none had fully recovered." This is a laughable statement.12/

In PACE, 13% of the participants were "recovered" on the primary outcome of physical function AT BASELINE, when they were simultaneously defined as "disabled" enough to enter the trial. This is of course absurd. You can't be recovered and disabled simultaneously on a measure. 13/

That nonsensical and paradoxical analysis should have prevented ANY of the PACE papers from being published--certainly the 2011 Lancet paper and the 2013 "recovery" paper in Psychological Medicine. But journals didn't notice or care about this egregious flaw. 14/

The PACE authors failure to disclose this overlap, which resulted from their decision to abandon their protocol, seems to me to constitute serious research misconduct by any definition, and is arguably fraudulent. In any event, it is not "science." 15/

Their bogus answer to this has always been what you conveyed--"no one was fully recovered." That is of course not the point, and your willingness to accept this rationalization from this group is perplexing. No one can be recovered on ANY outcomes at baseline.16/

Had you bothered to contact me, I would have tried to explain this to you. Better than that, you should have watched Bruce Levin's presentation slamming PACE: "How NOT to conduct a clinical trial." Dr Levin is a top biostatistician at Columbia (since retired). 17/

He read PACE at my request and thought it was an atrocious piece of research. He publicly called it "the height of clinical trial amateurism." Was he bamboozled by me or by patients?? I suggest you watch it if you want to learn why PACE is crap 18/

You could also have talked to my epidemiology colleagues at Berkeley, who also read PACE at my request and were shocked by its awfulness. At Berkeley, it has been put to its best use as a case study of terrible research in graduate epi seminars. 19/

In short, your take on PACE is completely off the mark and anti-scientific. You have justified the position taken by a group of researchers whose work is so riven with flaws and missteps that it is shocking anyone ever took it seriously as a credible piece of work.20/

To back up your argument you have cited several other studies "have reinforced the finding that GET and CBT are effective for treating chronic fatigue." All of these studies are also seriously flawed and "reinforce the finding" only to those who don't understand study design. 21/

And it is key to point out that these studies were not about "chronic fatigue," which is one of the most common symptoms in medicine. They were about a disease entity that the CDC stupidly named "chronic fatigue syndrome." 22/

You seem to think the two are synonyms--at least, that's how you treat the terms in the article. Since "chronic fatigue" is not a disease but a symptom, every single sentence that includes this phrase as if it were a disease is inaccurate and should frankly be corrected.23/

I have a lot more thoughts on the piece but for now will leave it at this. It's very well-written and you express sympathy for patients and so on. But you have taken the framing from those who believe PACE and related studies can be called proper science--when they stink.24/