Trial By Error: The Michael Sharpe Crowdfunding Effect

By David Tuller, DrPH

*This is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berkeley, to support the project. The link to the crowdfunding campaign is here: https://crowdfund.berkeley.edu/project/42302

In the past, Professor Michael Sharpe, one of the lead PACE investigators, has intervened in my Berkeley crowdfunding and given my efforts a significant–although presumably unintended–boost. In the spring of 2018, I spent six weeks traveling around Australia, a trip that overlapped with that April’s crowdfunding campaign. During the campaign, Jennie Spotila endorsed it with a lovely post on her blog Occupy M.E., which included the link.

After Jennie tweeted it out, Professor Sharpe decided to retweet it and whine about the troubles I was causing with the following retort: “This is what researchers who are studying aspects of CFS/ME that activists don’t want studied are up against.” This was a spectacularly stupid move, since he’d in effect further disseminated the crowdfunding link. People began tweeting their thanks to Professor Sharpe for reminding them to donate. Let’s just say his efforts to criticize my efforts had some unexpected side benefits.

I had another fortunate turn of events that April. In Australia, I was interviewed for a TV documentary, and I cried while talking to the reporter. My unexpected and unplanned display of emotion—which I knew as soon as it happened would show up in the documentary–was apparently very moving to viewers. My donations shot up after the show aired.

From that campaign, then, I took two lessons about ways to boost the crowdfunding: 1) Cry on camera; 2) hope that Professor Sharpe pops up with criticism. Since then, I haven’t tried the first method again. But Professor Sharpe made his mark again the following spring, with a noble assist from Kate Kelland, Reuters’ former London-based health/science reporter—who was also a bestie of and unofficial PR voice for the so-called Science Media Centre.

In March, 2019, the month before that spring’s crowdfunding, Kelland published a purported expose about the supposed “harassment” of Professor Sharpe and others who, like him, were investigating ME/CFS. The article, grandiosely billed as a “Reuters Special Report,” was headlined “Sick and Tired: Online activists are silencing us, scientists say.” Kelland’s article was based solely on bogus complaints from Professor Sharpe and his colleagues, and she placed much of the blame for their woes on me and my dastardly behavior.

The article was loaded with nonsense, but I viewed it as a compliment. Obviously my work was creating some problems for these folks if they were going to such lengths to try to discredit me. I knew the effort to trash me would help me out during the following month’s crowdfunding—and it definitely did! Donors let me know they were outraged by Reuters unwarranted attack. So April, 2019, was a very successful crowdfunding month. Thanks again, Michael and Kate!!

(After that, with the advent of the pandemic, I began crowdfunding twice a year rather than once, so the totals have been lower.)

**********

Debate over the “fraudulence” of the PACE trial

This time around, unfortunately, Professor Sharpe hasn’t taken such an active role. But he did make an appearance on my Twitter (or X) feed in late April. Perhaps he was trying to boost my totals again but didn’t realize that I had shifted the crowdfunding this spring from April to May for various reasons? In any event, he noticed that I had posted a tweet–or an X–in which I referred to the PACE trial as “fraudulent.” His response on the platform: “So David—you are now making accusations of fraud. That is very serious. I hope you can prove it.”

I was surprised. Professor Sharpe blocked me on Twitter long ago, so I haven’t seen his tweets for years. Not reading his tweets has not been a great loss. I don’t remember why he blocked me in the first place, and I have no idea why or when he unblocked me, but hey, whatever!

In any event, I’m touched that he considers my thoughts important enough to warrant a comment, although what he wrote sounded like a potential legal threat. Professor Sharpe is fond of making such noises; I’ve noticed him send similar messages to others.

So let me answer. No, I am not accusing and have never accused the PACE authors of “fraud.” As I have said repeatedly, I am not a lawyer. I have no position on what constitutes fraud in the legal sense, either in the US or the UK. I have no idea whether the PACE trial would meet the criteria for the crime of fraud. That’s up to others to think about and decide.

However, I have regularly called the PACE trial “arguably fraudulent” or just plain “fraudulent”—a word that has a range of meanings. It can obviously be used to refer to a situation involving illegal activities. But it also can simply mean “deceptive” without explicitly conveying the notion of criminality. For example, one definition of “fraudulent” on the Cambridge Dictionary website is: “not what it claims or pretends to be.” The thesaurus section of the website lists “dishonest,” “untrustworthy,” “devious,” and “deceitful” as synonyms.

And that’s what I mean when I use the word “fraudulent” in reference to PACE–not that it is a case of criminality but that it is dishonest, untrustworthy, devious and deceitful.

What makes it so? Well, the most obvious example is that 13% of the participants had already met a key outcome threshold at baseline—a fact not mentioned in the key PACE papers. In the trial, these subjects were already “recovered” for physical function when the trial began—even as they were simultaneously disabled enough in physical function to quality for the trial. This anomaly—that these participants were simultaneously disabled and recovered on the same measure—obviously did not occur by accident. It renders the trial absurd and nonsensical. I’ve asked the PACE authors and Richard Horton, editor of The Lancet, to provide me with any examples of other trials in the literature in which a significant minority of participants met a key outcome threshold at baseline. They have never responded.

The information about this overlap in entry and outcome thresholds is clearly necessary to accurately interpret the meaning of the PACE trial’s results. Given that the authors chose to withhold this salient fact from readers, the trial is most definitely dishonest, deceitful, untrustworthy. In other words, “fraudulent.” I rest my case.

And hopefully this little post will boost my crowdfunding so I can once again thank Professor Sharpe for his help.

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7 thoughts on “Trial By Error: The Michael Sharpe Crowdfunding Effect”

  1. I hadn’t read this blog when, earlier this morning, I made my last comment on David’s previous blog -https://virology.ws/2024/05/24/trial-by-error-bbc-takes-on-lightning-process-and-highlights-perspectives-of-the-so-called-anti-recovery-activists/ but what a coincidence it is with David’s mention of the SMC here. David is a journalist who IS able to and who DOES scrutinize the science as well as reporting fairly on people’s personal testimonies and on what is going on in practice. There aren’t many people, no, sorry, I can’t think of anyone else who is doing that at present in relation to ME/CFS or who has such an understanding of how it ties in from the scientific, healthcare and political perspectives with what is happening in relation to Long Covid, FND and medically unexplained symptoms in general. Can we really afford to lose his input at this critical time?

    As for “Cry on camera”, David makes light of this but any effect it had was only because people could see that it was genuine, that here was someone who genuinely cares in a world where so few seem to. That genuine caring for people has been clear to me in his unbiased reporting, and not least in his last blog when he wrote “While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.” It may not have been the best choice of words – nobody’s perfect – but, to me, he was demonstrating two things – his own willingness to acknowledge another person’s perspective and not dismiss it out of hand and his duty as a journalist to do that too. As I understand it, that’s what got him into looking into ME in the first place. I’d far rather have someone like that on my side than somebody who talks politely to/kowtows to the medical community/hierarchy. (I was dismayed to recently come across this list of advisors to a Long Covid charity -https://www.longcovid.org/about/our-advisors. I couldn’t understand how some could allow themselves to be listed alongside others who are listed there. But that’s medicine for you, it’s all so nicey-nicey, or old-school gentleman’s club perhaps. To my mind, that’s a huge part of what ME sufferers are up against – the suffocating stodge of medicine’s desire to keep a lid on things, to brush problems under the carpet, under the guise of behaving in a dignified, gentlemanly way. Meanwhile, patients continue to suffer. It makes me sick. )

  2. Alicia Butcher Ehrhardt, PhD

    People with AIDS faced the kind of distorted fury when they were sick and dying; totally disproportionate, and laced with venom from people who did not ‘approve’ of the lifestyle of some of the victims.

    We see it now, because we take up, if listened to, a lot of medical resources with limited success (because – duh! – they don’t know exactly what causes ME/CFS or how to treat or cure it). But this is NOT the fault of the victims – is it the ‘fault’ of medical research which hasn’t had the funds to do a proper job, and the bad luck we have that many of our symptoms are not measurable (PEM, exhaustion, brain fog – all notoriously hard to quantify objectively). But the future will not look kindly on the protestations of the establishment that it’s all in our heads, and we’re faking to ‘get something’ (tell me what, please, so I can get my share).

    And governments can say they’re doing something by paying for such as the Lightning Process – and blame the victims again when it not only doesn’t make them better, but makes them worse (officialdom: they must be faking). Psychological theories are CHEAP as well as fake and ineffective, especially compared with proper medical support for the symptoms until a cure is found.

    I wish I’d been ‘picked’ by a much different disease. This one is neither glamorous nor excites compassion.

  3. Barbara Robinson

    Well done everyone for supporting David, our special envoy and thoroughly decent human being!
    Go for it David!
    Your work is all the more important in these troubled times of medico-lefal, medical politicking.

  4. @ CT in the first comment – Ed Yong is another journalist who can hold the psychologisers – and many more besides them – to account. His recent talk in Vancouver was so powerful. It’s a must watch. He starts speaking at 13:09 into the video, and goes on for 30 or so minutes. https://www.youtube.com/watch?v=BjNy1rn0yPk

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