Trial By Error: Some Thoughts About an Upcoming Article

A major news organization is preparing to publish what seems to be a piece about me and my work. The piece also seems to be focusing on the narrative that dangerous and irrational patients are running rampant and threatening eminent scientists.
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I wonder if those categorized as "dangerous and irrational" will include the 113 leading experts (including 56 PhD's, and at least 59 Physicians), 10 Members of Parliament and 52 Patient/Advocacy groups that called for an independent re-analysis of PACE.

http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/
 
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It does look a bit worrying but I do have a hope that things may actually be turning (ok, I've said that for 20 years, but one day it'll be right). There IS more general awareness about what a dreadful disease ME is and what desperate situation patients are in.

Very little research has been done, and a lot of it had poor quality. I believe (hope) that it's getting easier for outsiders to see what's actually going on when reasonable critique is met with name calling and smearing instead of an open conversation about what we know and what we can't be sure about just yet.

But it's uncomfortable to be on the receiving end of such smearing.
I do hope however that having it all out in the open might not be exclusively bad, in the end.
 
Forbin said:
I wonder if those categorized as "dangerous and irrational" will include the 113 leading experts (including 56 PhD's, and at least 59 Physicians), 10 Members of Parliament and 52 Patient/Advocacy groups that called for an independent re-analysis of PACE.

http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/
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Could be useful to go looking for some more support for the document. Perhaps a more international signatory list will serve to isolate the purveyors of misinformation coming mostly from London.

ETA: this blog is quite long and I'm just now getting through to near the end. It's seems to me to be a very good preemptive strike. Thorough, reasonable and on point.
 
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rvallee said:
A real journalist would not just quote (mostly) anonymous people on a forum. Which doesn't mean it won't happen, but it would be a pretty bad self-goal.
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It's been done. Wish I could remember where & by who, but it was a real publication, as in, not just a blog. Might've been Trine Tsouderos, who told me that, at that time, the first thing she did in the morning was look at ME/CFS Forums.

I always thought forums should've been members-only from the first one I saw. Something about discovering that Wessely had someone monitoring Phoenix Rising, and then also there was a patient who was in touch with him showing him this or that thread. And there were whispers that people in HHS reading various forums and blogs on a regular basis, although that was probably because of XMRV.

But even doing members-only...I never trusted Facebook groups that sprung up with 300 members, with perhaps 50 of them active and familiar, and 250 that nobody I know ever heard of (which is not disqualifying, but if you know that people who are not patients are reading this stuff, presumably to get a leg up). Yet if people didn't set them up that way you'd have an echo chamber that would likely shrink rather than grow. There's no easy answer. But I wouldn't put using anonymous internet quotes (from fora likely being described as scary places where all sorts of skullduggery is discussed) past the sort of person who'd do this article as heavy lifting for the SMC.
 
Just leaving this useful blogpost (thank's @Brian Hughes ) here, about the reuters cochrane piece - but applied to this situation, will show a pattern of taking to media, attacking insted of defending the science?

https://notthesciencebit.net/2018/11/03/the-triumph-of-eminence-based-medicine/

"Discernible in the Reuters report was the sound of professional wagons being circled."



This sounds way to familiar from this side of the north sea :(

The piece is likely to include anecdotal accounts from patients who say they got better through CBT, GET and perhaps even the Lightning Process, and could suggest that my work is depriving people of the opportunity to obtain treatments that they want and need.
 
Kalliope said:
Another blog post about the same topic, so I'll post it in this thread:

Trial By Error: The Reporter's Questions for Professor Racaniello
The reporter writing the story I posted about earlier also contacted Professor Racaniello. Here are the questions asked, and his answers
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You refer to David Tuller in your Oct 19th blog post as “Dr Tuller”. David Tuller has told me he has no medical qualifications and is not a doctor. I understand his [sic] gained a masters in public health in journalism at Berkeley in 2005, and wonder if this is why you refer to him as “Dr” ?

[The reporter’s mistaken assumption that I only have a masters degree was actually my fault. It turns out I had never updated a faculty page at Berkeley, so the reporter understandably assumed the information on it was correct. Rather than checking the discrepancy with me, however, the reporter asked Vincent about it in what seems to be an attempt at a “gotcha” question. I have since updated the page.]

Being an MD is not the only way to earn the appellation ‘Dr.’ Surely you must know that people who earn a PhD, or any doctorate, are also called ‘Dr.’ David has a DrPH degree from Berkeley.
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"David Tuller has told me he (...) is not a doctor."
Quite revealing regarding the journalist's expertise and motivation.

Thank you @dave30th for letting us know, and thank you to Professor Racaniello for being so clear.
 
How would you describe David Tuller’s campaign? Do you support what he is doing? And have you made any contributions to his crowdfunding?

David Tuller is doing important investigative journalism
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What a wonderful answer from Professor Racaniello to a muck-raking hack looking for dirt. He might as well have continued " ... and you, Sir? What is it you call what you do?"

If the conversation has to move on to the role of the SMC and the media anyway, how kind of them to provide a perfect example of the kind of skullduggery we are talking about to set the ball rolling. Gives us the perfect "in". Like many posters, I think it shows they are rattled, and all they've got is mud-slinging so they are going to double down on that. What else can they do? They usually shoot themselves in the foot spectacularly in this situation, and it won't end with the publication of the article - that's when it will start, and even more academics, scientists and commentators will become aware of the pile of crap that PACE is if they haven't heard yet.

They couldn't do the sensible thing and lay low if they tried. This is going to be like a Michael Sharpe tweet x 1000. Too many people are on to them now, even in the UK regional radio stations and journalists are beyond the reach of the SMC and have been telling our story. Even the national press have been running ME articles free of the SMC bullshit we used to have to put up with. So the SMC have found one last journalist daft enough to do their dirty work for them, someone whose highest ambition in life is to be the next Rod Liddle.

What are BPS members going to do with this article? Wave it around in the hope of being taken seriously on the NICE guidelines committee? Within a day it'll be yesterday's attempt at a scandal, a permanent record of the shit we've had to put up with, and a taint on the credibility of anyone associated with it.
 
TiredSam said:
They couldn't do the sensible thing and lay low if they tried. This is going to be like a Michael Sharpe tweet x 1000.
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I hope your correct but one lesson i have learned over and over and over again is to never be complacent. Hope for the best but plan for the worst. Never count ones chickens before they are hatched.
And plan for it in advance and not when your in must take action now mode. That way you have time to work out your strategy.
 
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