Trial By Error: Re-visiting My Questions for PACE Professors

Andy

Andy

Senior Member (Voting rights)
I thought it might be helpful to re-post a list of questions I wanted to ask Professor White and his PACE colleagues in September, 2015–more than a month before Virology Blog posted the first installment of “Trial By Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study.” I originally posted this list on January 4, 2016.

In the years since, the PACE authors claim to have repeatedly answered everything. In truth, they have evaded hard questions and provided non-responsive responses. That’s why last year more than 100 experts signed an open letter to The Lancet calling out the PACE study’s “unacceptable methodological lapses.”
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http://www.virology.ws/2019/02/13/trial-by-error-re-visiting-my-questions-for-pace-professors/
 
So depressing that the PACE appologists continue to refuse to attempt to answer these questions after so many years, but also that so many of the British medical establishment, the medical journals and the press protect their obfuscation.
 
Really good @dave30th. I only became aware of what was going on around Aug 2016, so this was well before then. Most of the questions are things I've now gained awareness of along the way, though a couple are new.

I think republication of those immensely salient questions are a very good move at this time, where awareness is gaining ground with people who had no real inkling back in 2015, politicians especially. If not done so already, then I especially thing Carol Monaghan should see this, though I imagine she already is aware.

I am a modestly-qualified engineer, not a scientist, and most of the issues raised would have originally passed me by without others having made me aware of them; it's terribly easy to take things on trust from those you believe you can trust, unless you have cause to dig deeper. There will be many others at this time, in the same position I was two and a half years ago, so I think this blog post is a really important, very timely summary of all the key failings with not just PACE itself, but also the PACE authors' ineptitude at standing by their claims; claims that continue to seriously and adversely influence the lives of so many people, who deserve so very much better. The blog also makes tacitly clear, simply by having to be republished several years down the line, how intransigent the authors are in their unwavering dogma. I think it would be good for this blog post to be given a wide circulation.

I so much want my wife to have the chance of returning to the life she once had, and for us in approaching retirement to go walking the countryside and the hills again, before we get too old to do it anyway. And if not that, at least for the illness to be properly recognised for what it is, especially by the medical profession. And as I say this I am so very aware there are so very many people so much worse off, and my heart goes out to them. I am by nature very easy-going, but I have to say I feel very bitter about the PACE authors, and the related BPS clique, who have so severely f*cked up the lives of so very many good people ... and continue to do so! How dare they call themselves scientists.

Your work is invaluable David, and is immensely appreciated by so many (and somewhat unappreciated by a few :p ) ... feels like a Churchillian paraphrase bubbling under there.
 
NelliePledge said:
Yes I spotted she was trying a bit of “eminence” on you :wtf:
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And she totally missed that I pointed out a significant overlap in our qualifications and that I may have comparable hands on experience in evaluating behavioural interventions in biomedical conditions to her.

But I have only myself to blame, as I failed to learn from previous experiences of responding to her more contentious comments.

A shame that ME seems to have more than its fair share of people that potentially have so much to offer, but struggle to see any view point but their own. I suspect what she regarded as David's 'insults' boiled down to that he disagreed with what she said.
 
November 14, 2016
An Open Letter to Dr. Simon Wessely, Defender of the PACE Study

Steven Lubet
Dear Dr. Wessely:

I was surprised to see the president of the Royal College of Psychiatrists post a comment on a U.S. law blog. I suppose this means that I have gotten your attention in the discussion of Chronic Fatigue Syndrome (ME/CFS), and that you feel compelled to respond to criticism of the PACE Study. That is a good thing.

Regrettably, your comment was petty and defensive, without engaging the actual issues relevant to PACE’s misleading conclusions. I will not revisit the study’s many scientific and methodological flaws, which have been well addressed by Dr. Keith Geraghty (here) and by Dr. David Tuller in his Virology Blog investigation (here). As you know, dozens of top scientists and clinicians have condemned the study in an open letter to The Lancet, stating that its flaws “have no place in published research.”

Instead, I want to address your rhetoric, which is unworthy of a serious scholar.

You begin by accusing me of not obtaining the “full facts of the dispute before rushing to judgment” – as though the facts are obscure or difficult to locate, when they have actually been discussed at length on numerous platforms. Moreover, my post linked to Dr. Geraghty’s well-documented article, which explains some of PACE’s errors in detail. Your comment relies on innuendo to suggest that there is information I did not consider, when you have no way of knowing what information I did or did not review. (For the record, I have read everything you mention, and much more.)

Even so, you do not point out a single inaccuracy in the Geraghty article. Nor do you specify any other facts that need to be considered.

Tellingly, you do not refute the two problems I specifically identified in my post: The PACE researchers’ preexisting interest (similar to your own) in arriving at a predetermined outcome, and their resistance to sharing data until compelled by a judicial order.

Regarding conflicts of interest, you argue that “it’s an old trial with consent forms from 2003.” That might be, but the PACE authors promised in their protocol to abide by the Declaration of Helsinki (obviously in effect in 2003) which requires investigators to disclose “any possible conflicts of interest” in obtaining informed consent. the PACE authors failed to tell prospective participants about their close relationships to disability insurers with a clear interest in the results of the study.

Regarding data transparency, you refer to “previous legal rulings” and say that the recent disclosure order is “still contested.” That is untrue. The latest order was issued by the relevant FOIA tribunal, which rejected the PACE team’s stated reasons for refusing to disclose their data, and which supersedes any earlier decisions. Queen Mary University of London wisely chose not to appeal, accepted the tribunal ruling, and turned over the requested material. As a legal matter, the issue is settled.

But in any case, so what? The data are the data – completely apart from the merits of the disclosure ruling – and they clearly show that the PACE results were wildly overstated. It is understandable that the researchers wanted to keep this information from the public, as they managed to do for five years. But that is why there are laws and courts to adjudicate these matters.

This is all of a piece, however, with your reputation for disparaging those who disagree with you. You have referred to PACE critics as “anti-science,” when in fact they have sought nothing more than scientific accountability for the study’s lapses and increased biomedical research into ME/CFS (as endorsed by last year’s major reports from the U.S. Institute of Medicine and the National Institutes of Health). You ignore the work of prominent U.S. scientists, in laboratories at Columbia and Stanford Universities, who have made progress identifying potential biomarkers for ME/CFS, which undermines your theory that the illness arises from “false beliefs.” Do you believe that Professors Ronald Davis, Ian Lipkin, Mady Hornig, Vincent Racaniello, Ellen Clayton, and Bruce Levin are anti-science, despite their appointments at prestigious U.S. universities?

You have claimed that “activist” ME/CFS patients pose a serious threat to you, famously saying that you felt “safer” in Afghanistan than studying ME/CFS, and insisting “that is not a joke.” You stood by when the press reported that patients were “considered to be as dangerous and uncompromising as animal rights extremists,” which is flatly untrue. You helped spread stories about a “campaign of intimidation” against you and the PACE authors, which were tremendously exaggerated, to say the least.

For years, these claims of harassment were invoked to resist disclosure of the underlying PACE data, until the tribunal ruled that the evidence simply didn’t support the claims. The FOIA tribunal found that the purported campaign of intimidation boiled down to one instance of heckling at a seminar, and referred to the researchers’ “apocalyptic” argument as “grossly exaggerated” and a “vast logical leap.”

Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there. Just so.

If you are still reading, I hope that you will consider answering the following questions: You claim that ME/CFS arises from “unhelpful illness beliefs,” but how can that theory be falsified? What would it take to convince you that you are wrong? Unless you can satisfactorily answer these questions, I fear that you fall into Thomas Kuhn’s category of those who are unwilling to give up their paradigm in the face of new information.

ME/CFS research deserves serious attention from scientists and physicians, which is finally happening in the United States and elsewhere. Patients deserve respect. Your insistence on defending the indefensible PACE trial, and your patronizing jabs at critics, disserve everyone, including yourself.

Sincerely,

Steven Lubet
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eta: over 2 years later....... still no answers
 
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Sly Saint said:
eta: 3 years later....... still no answers
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And still every bit as true. The big difference now is the audience, which includes many more influential people than it did 2+ years back. And Steven Lubet's writing is extremely lucid and educational. Well worth redistributing to all likely interested parties, Carol Monoghan etc.

Worth noting that the major (major!) message this letter gets across to anyone unfamiliar with the BPS shenanigans, is the way that emotive rhetoric is used as a replacement smoke screen for scientific debate, because they have precious little of the latter and bucket loads of the former. That is such an important enlightenment for people new to the politics of ME/CFS. And the ocean liner is always good.
 
Interestingly, SW said that he respected Steve Lubet, although, strangely, he didn’t appear to remember having read the article which he had commented on at length. I wonder if this tells us anything about how SW’s selective memory works:





It is unclear whether Simon was disagreeing with Mike’s assertion that “humility is good practice for us all”, or only with his assessment that PACE is “so profoundly flawed that it cannot be trusted”.
 
Steven Lubet (replying to Simon Wessely) said:
I hope that you will consider answering the following questions: You claim that ME/CFS arises from “unhelpful illness beliefs,” but how can that theory be falsified? What would it take to convince you that you are wrong?
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This does highlight how these particular BPS proponents rely on choosing hypotheses that, even if they are groundless, can be tricky to actually prove they are, until good solid biomarkers are found. A self-fulfilling belief system, maintained by emotive rhetoric and disparagement of all disbelievers ... shamans not scientists.
 
I have mentioned before that I have wondered about SW's reading comprehension since coming across his comment that he agreed with Jenkins that the most reasonable explanation was that the majority of the Royal Free cases were a hysterical reaction to a small number of polio cases among the staff. That might be arguable, but it reveals something of his views. The major problem is that this was not at all what Jenkins wrote.
 
Quite relevant to this discussion about Wessely's absurd claims about war zones in Iraq and Afghanistan being less dangerous than interacting with us: https://www.tandfonline.com/doi/abs/10.1080/09540962.2018.1535044.

Using a spectrum of measures, this paper estimates some of the financial costs of bullying and harassment to the NHS in England. By means of specific impacts resulting from bullying and harassment to staff health, sickness absence costs to the employer, employee turnover, diminished productivity, sickness presenteeism, compensation, litigation and industrial relations costs, we conservatively estimate bullying and harassment to cost the taxpayer £2.281 billion per annum.
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Video game publishers regularly get threats over featuring female or gay characters. Journalists get threats over merely reporting the direct words of some people with a devoted fan base because their own words make them look bad. The Internet is full of trolls because humanity is full of trolls. Abuse is common in medicine as it is in any service profession. It should not be so but the reality is that there are people out there with genuine behavioral problems.

Any suggestion that such behavior is an indictment of a large patient population with a degree of organisation that is best described as Brownian is wholly dishonest and a mark of lack of integrity and character. It's a common and general problem that physicians deal with every bit as much as bartenders.

This is guilt by association over a perceived association that isn't even legitimate. As far as we can tell, physician-on-physician bullying is a problem of almost equal gravity, the hazing culture of "I had to go through this and so will you" is well-known even outside the profession. Wessely's disinformation campaign is a disgrace and completely unprofessional. It reveals a deeply broken moral compass when abusing a vulnerable population is seen as a valid means to an end.
 
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rvallee said:
Quite relevant to this discussion about Wessely's absurd claims about war zones in Iraq and Afghanistan being less dangerous than interacting with us: https://www.tandfonline.com/doi/abs/10.1080/09540962.2018.1535044.



Video game publishers regularly get threats over featuring female or gay characters. Journalists get threats over merely reporting the direct words of some people with a devoted fan base because their own words make them look bad. The Internet is full of trolls because humanity is full of trolls. Abuse is common in medicine as it is in any service profession. It should not be so but the reality is that there are people out there with genuine behavioral problems.

Any suggestion that such behavior is an indictment of a large patient population with a degree of organisation that is best described as Brownian is wholly dishonest and a mark of lack of integrity and character. It's a common and general problem that physicians deal with every bit as much as bartenders.

This is guilt by association over a perceived association that isn't even legitimate. As far as we can tell, physician-on-physician bullying is a problem of almost equal gravity, the hazing culture of "I had to go through this and so will you" is well-known even outside the profession. Wessely's disinformation campaign is a disgrace and completely unprofessional. It reveals a deeply broken moral compass when abusing a vulnerable population is seen as a valid means to an end.
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This is not about threats, its about the bully claiming he is the victim and using that as an excuse to keep harming us. He needs everyone else to not turn on him so he claims we are out to get him so everyone else will rally around him and accept his lies instead of our proven truths.
 
chrisb said:
I have mentioned before that I have wondered about SW's reading comprehension since coming across his comment that he agreed with Jenkins that the most reasonable explanation was that the majority of the Royal Free cases were a hysterical reaction to a small number of polio cases among the staff. That might be arguable, but it reveals something of his views. The major problem is that this was not at all what Jenkins wrote.
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One reason why it's often hard to criticise Wessely for what he's said about ME/CFS is that he tends to write in a way which creates a narrativ for reader, but just by him selectively reporting what he claims others have said, rather than explicitly giving his own views.
 
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