Crowdfunding for David Tuller starts October 1st 2024

Jaybee00 said:
I guess my concern is that the BPS stuff is obvious BS—whereas the BioBS stuff is shrouded with the air of respectability, as in this is “real science”, which in my opinion makes the BioBS stuff more pernicious.
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It is something like that but I think you are right to point out the asymmetry.
Why should anyone bow to the authority of Akiko Iwasaki or David Putrino and not Simon Wessely or Michael Sharpe? Wessely and Sharpe are respected mainstream opinions in their field. The stuff about microclots and MCAS is seriously fringe stuff most haematologists and immunologists would regard as pseudoscience. It isn't respectable. I think people forget that his is all Xitter science, not mainstream opinion.

And is the BPS stuff so much more obviously wrong? The BPS people have a story that is at least superficially plausible at least to people who don't actually have ME/CFS. The micro-clot story is totally implausible because it claims a form of pathology - obstruction of small blood vessels - that we know for a fact isn't there. If it was people would have nasty purple spots on their legs.

The business about being recovered and still qualifying for entry is silly but it doesn't actually make any difference to the significance of the data as plotted out on graphs and it is technically feasible to have a situation like that and for it to be meaningful. Recovery is the wrong word but we don't treat people on the basis of what word is used, we look at the results. It doesn't matter much if you use hype words for real results. What matters is when the results weren't real in the first place.

I have no problem agreeing with David that the BPS influence has been the greatest harm. However, part of the justification for that approach was fed by an 'ME' story based on phoney neurology. That has now been put to bed but I worry that a new, equally pernicious story is being built around Long Covid, clots and mast cells that will keep psychiatrist entertained at dinners rolling their eyes and guffawing for a few more decades when it all becomes clear that it was eyewash.

David is doing a great job and we enjoy comparing notes - which includes differing on a few things. I do see this as desperately needing to be put on a level playing field.
 
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Jonathan Edwards said:
Actually, I am quite happy to say that for the first two. They don't make any pathological sense.
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And I have no legitimate basis on which I can say I agree with this, and no basis on which to say I disagree. All I can say is that others I respect have different opinions than Jo does. So I can't defer to Jo's knowledge here and take it as fact just because he's a smart guy and I respect his perspective. I'm agnostic. Others will have to fight that battle.

My point about having pubic health training isn't that only people with public health training can debunk bullshit like PACE. Anyone with any common sense could--as so many patients did before I got involved. But having a degree from a leading university gives me public credibility to make the argument and present my perspective as an "educated" one from an academic when those on the other side wield their professorships and knighthoods as if they're huge phalluses in order to snow people into deferring to their ridiculous argumentation. It's absurd that degrees make people more likely to pay attention in cases like unraveling PACE and related nonsense, where any reasonably competent person could make the same points I've made. But I saw early on that I could likely get some traction for what I was putting out there because of that--and because of my academic and journalism connections as well.

Jonathan Edwards said:
The business about being recovered and still qualifying for entry is silly but it doesn't actually make any difference to the significance of the data as plotted out on graphs and it is technically feasible to have a situation like that and for it to be meaningful.
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I think it's more than silly. It's a sign of how degraded and preposterous their "science" is--and it's more than silly that this flaw has been allowed to stand. It renders the papers absurd on their face and deserving of retraction--or at least those sections of the papers. I'm not clear how is it technically feasible or meaningful to have outcome thresholds lower than entry thresholds, whether or not you use the term "recovery"? They used a fraudulent method of generating a "normal range" to create that analysis, because the population data they used did not fall into a normal distribution. They knew exactly what they were doing because they said so in their 2007 "Is recovery possible" paper, and they knew that it wasn't a "normal range" at all. I think describing that as just "silly" doesn't do it justice.
 
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dave30th said:
And I have no legitimate basis on which I can say I agree with this, and no basis on which to say I disagree. All I can say is that others I respect have different opinions than Jo does. So I can't defer to Jo's knowledge here and take it as fact just because he's a smart guy and I respect his perspective. I'm agnostic. Others will have to fight that battle.

My point about having pubic health training isn't that only people with public health training can debunk bullshit like PACE. Anyone with any comment sense could--as so many patients did before I got involved. But having a degree from a leading university gives me public credibility to make the argument and present my perspective as an "educated" one from an academic when those on the other side wield their professorships and knighthoods as if they're huge phalluses in order to snow people into deferring to their ridiculous argumentation. It's absurd that degree make people more like to pay attention in cases like unraveling PACE and related nonsense, where any reasonably competent person could make the same points I've made. But I saw early on that I could likely get some traction for what I was putting out there because of that--and because of my academic and journalism connections as well.



I think it's more than silly. It's a sign of how degraded and preposterous their "science" is--and it's more than silly that this flaw has been allowed to stand. It renders the papers absurd on their face and deserving of retraction--or at least those sections of the papers. I'm not clear how is it technically feasible or meaningful to have outcome thresholds lower than entry thresholds, whether or not you use the term "recovery"? They used a fraudulent method of generating a "normal range" to create that analysis, because the population data they used did not fall into a normal distribution. They knew exactly what they were doing because they said so in their 2007 "Is recovery possible" paper, and they knew that it wasn't a "normal range" at all. I think describing that as just "silly" doesn't do it justice.
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And that 'recovery' rate was waved in front of our faces during a coffee break in the course I was on. Not during the course work. Somewhat like the newsletters published during the trial.

I trusted the NHS all my life and I've paid for that for the last 16 years in ever increasing circles of harm and loss. I will never trust it again. That harm is irreversible.
 
dave30th said:
And I have no legitimate basis on which I can say I agree with this, and no basis on which to say I disagree. All I can say is that others I respect have different opinions than Jo does. So I can't defer to Jo's knowledge here and take it as fact just because he's a smart guy and I respect his perspective. I'm agnostic. Others will have to fight that battle.

My point about having pubic health training isn't that only people with public health training can debunk bullshit like PACE. Anyone with any common sense could--as so many patients did before I got involved. But having a degree from a leading university gives me public credibility to make the argument and present my perspective as an "educated" one from an academic when those on the other side wield their professorships and knighthoods as if they're huge phalluses in order to snow people into deferring to their ridiculous argumentation. It's absurd that degrees make people more likely to pay attention in cases like unraveling PACE and related nonsense, where any reasonably competent person could make the same points I've made. But I saw early on that I could likely get some traction for what I was putting out there because of that--and because of my academic and journalism connections as well.



I think it's more than silly. It's a sign of how degraded and preposterous their "science" is--and it's more than silly that this flaw has been allowed to stand. It renders the papers absurd on their face and deserving of retraction--or at least those sections of the papers. I'm not clear how is it technically feasible or meaningful to have outcome thresholds lower than entry thresholds, whether or not you use the term "recovery"? They used a fraudulent method of generating a "normal range" to create that analysis, because the population data they used did not fall into a normal distribution. They knew exactly what they were doing because they said so in their 2007 "Is recovery possible" paper, and they knew that it wasn't a "normal range" at all. I think describing that as just "silly" doesn't do it justice.
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Yes. It’s not silly it’s something else.
 
Oh no…
I’m getting worried :(

Super unhelpful of me to say on last day, but I have found it hard to find a link to donate except from this thread. If you search it the expired previous fundraisers come up.

That, along with the bad blue button directing to expired pages can’t help can it?
 
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Ash said:
I’m getting worried
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No need to worry! I don't want anyone to worry!! The link is here but no one should donate more than they can manage. I'll get by and am continuing in any event. The last thing I want to do is have been be anxious and contribute to anyone's stress. This is the link: https://crowdfund.berkeley.edu/project/43450

I can only send out messages to donors from past campaigns. That's why I always give the current link and say not to click on the Read Update button because that's for a past campaign. I'm sorry, I realize that can be confusing. :(
 
dave30th said:
No need to worry! I don't want anyone to worry!! The link is here but no one should donate more than they can manage. I'll get by and am continuing in any event. The last thing I want to do is have been be anxious and contribute to anyone's stress. This is the link: https://crowdfund.berkeley.edu/project/43450

I can only send out messages to donors from past campaigns. That's why I always give the current link and say not to click on the Read Update button because that's for a past campaign. I'm sorry, I realize that can be confusing. :(
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Thank you :heart:
 
Jaybee00 said:
@Trish @Hutan

could you please make a separate thread on the BioBS/BPS topic from the posts here as these are not directly relevant to Tullers fundraising—thank you!
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The best way to notify the moderator team of any request is to use the "Contact moderators" button at the bottom of any relevant post and make your request in the dialog box that comes up. This way, if Trish or Hutan are not available, then any of the team can look at it.
 
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