Crowdfunding for David Tuller starts October 1st 2024

$48,964 raised, 73% of total, 378 donors

5 Days left

https://crowdfund.berkeley.edu/project/43450

 

@dave30th

Bumping my earlier post in this thread regarding the Long Covid treatment center at Mount Sinai (USA) that is promoting unevidenced treatments.
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Possible for you to do a {skeptical} deep dive into this Long Covid treatment center that your friend David Putrino is spearheading. Your other friend Jo Edwards is not very keen on the approach.

Thank you.

Thread here

https://www.s4me.info/threads/core-...conditions-clinic-at-mt-sinai-hospital.40605/

 

From Prof Brian Hughes on X earlier today:

Compelling talk on the many problems of shoddy science in ME research by @davidtuller1 in Galway, Ireland, right now, courtesy of @IrishMECFSAssoc
#MECFS #pwME #LongCovid

 

I have sometimes thought about this and wondered. I mean, the Pete Judo video on PACE that featured me got like 100,000 views or whatever. But getting people to take action isn't easy, especially when everyone has lots of other stuff to deal with--like being sick. I appreciate that around 500 usually do. Also, I'm not the best self-marketer. I could be doing lots of video promotions and I'm sure there are other ways someone better at marketing than I am would be able to boost things. But some people thrive on marketing and I don't at all and would rather just do my work.

 

Thanks. really appreciate hearing that.

 

Like you've been busy doing in Northern Ireland today, I notice from Brian Hughes post.

 

If it's Saturday, it must be Galway! I've been in Dublin, Bray, Cork, Limerick, Galway today, and Sligo on Monday. So yeah, I've been a bit busy to do much of anything else or respond much to anything beyond the immediate.

 

You know that phenomenon known as jetlag - some way towards understanding what ME/CFS 'feels' like ev-er-ry day, then add in all the crap like pain, sensitivities, nausea, not being able to keep food down, scrambled words and thoughts and the rest. I'm sure they're looking after you, and try not to over indulge on the draft Guinness.

 

Not an issue for me! I really dislike beer. Actually, I hate the taste. I've never found one I can stand. (Cider is another story!) 've never understood the passion for beer. Luckily, tomorrow is a day off finally and Brian Hughes and I are going to hang out for the afternoon--he lives here. The main issue has been that it's been overcast and rainy, and I arrived during incredible windstorms across the country.

 

Ah well, Somerset's the very place for ye olde cider. The weather is another story, you can see why we all talk about it, incessantly. Enjoy your day and please pass on my thanks to Brian Hughes.

 

Ditto

 

$50,832 raised, 75% of target, 397 donors.

4 days left

https://crowdfund.berkeley.edu/project/43450

 

Done

$53,616 raised 80% of target, 412 donors.

 

Sorry I didn't get to this before. I've been running around Ireland and haven't had much extra bandwidth. Friends can disagree! I don't agree with everything Jo says, and I'm sure I wouldn't agree with everything Putrino says.

Regarding your question, here's the issue. I know that some or many on the forum think mast call activation syndrome is not a real entity and a form of pseudo-science. And there seems to be little support here for the microclots approach, and the same with viral replication, and so on--and Putrino's center is engaged in those things. But colleagues who are infectious disease experts at Berkeley and elsewhere do think MCAS is a thing, and among many others, Akiko Iwasaki at Yale thinks microclots and and viral persistence are potential mechanisms for prolonged sickness. I almost never participate in those discussions on the forum because they are outside my domain of competence. I have public health training, which includes epidemiology, but only a layperson's understanding of medicine and biology. I occasionally interview scientists like Akiko or Rob Wust etc about their work to let people know what's happening, and might ask a few questions that seem pertinent, but I simply can't adjudicate these disagreements with any degree of confidence that I know what I'm talking about. At best I can do "she said, he said" reporting about these issues, which doesn't in the end shed much light.

Whereas I very clearly am competent to make assessments about BPS interventions and the design of the studies meant to investigate them, such as whether study participants can be recovered and disabled simultaneously on key variables or whether 5.5% conversion disorder prevalence can be magically transformed into a 16% FND prevalence. Because I'm such a target for criticism, I've been pretty careful about not getting out over my skis--do they say that in UK?--and staying in my lane. Trying to figure out who is right and wrong on more purely medical aspects and whether they are pseudoscience or not is just not really an effective use of my time. I much prefer to do what I know I can do, and have been doing, effectively. From my perspective, that's the best way for my work to have an impact.

 

I think you've hit the nail on the head there about a lot of disagreements between experts - journalists aren't in a position to adjudicate on these things, and nor are even many other experts in the same field, given how specialised many areas are. What we need is direct debate between the protagonists - in the same room debate, 'I raise a point, you respond, I respond back until we elucidate the problem' debate with a moderator, to make sure all points are answered.

We've seen the consequences of the lack of this format with Covid, and we see it in other areas, such as climate change. We saw it in spades with PACE. In the absence of the expectation of a debate as standard, the PACE authors were able to get up on their mountaintop whenever they liked, issuing their opinions through a megaphone while simultaneously sticking their fingers in their ears to ignore the criticism, while PACE continued to hurt patients. You were able to do a challenging interview but imagine a public debate.

 

$56,461 raised, 84% of target, 464 donors. 2 days to go.

 

it's really closer to 3--it's 2 days and 20 hours left.

 

Fair enough.

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.