Crowdfunding for David Tuller starts October 1st 2024

Link for October 2024 crowd-funding:
https://crowdfund.berkeley.edu/project/43450

Trial By Error: Reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms"

Nine years ago this month, I launched Trial by Error with a 15,000-word investigation of the seriously flawed and arguably fraudulent PACE trial. The trial, which the patient community had already exposed as nonsense, had helped to establish cognitive behavior therapy (CBT) and graded exercise therapy (GET) as the standards of care for the cluster of illnesses then being called chronic fatigue syndrome (CFS) but more often these days called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

At the time, I expected that investigation to be a one-off. But here I am still fighting this same battle against many of the exact same self-styled experts. The advent of Long Covid has focused much attention on the entire overlooked category of post-acute infection syndromes (PAIS) or "infection-associated chronic conditions" (IACC), including ME/CFS. It is critical to push back against the claims of the clinicians and investigators who continue to argue, without valid or legitimate evidence, that psychological and behavioral factors are causing these devastating illnesses.

To support the project, I crowdfund donations to UC Berkeley twice a year on this in-house platform to raise the funds to cover 65% of my salary and benefits. Since the crowdfunder ended in May, I've been pretty busy. Here are a few highlights:

*In late July/early August, I attended the two-week inquest into the case of Maeve Boothby O'Neill, the 27-year-old woman who died in Exeter, UK, in October, 2021, after three hospitalizations in the preceding months. I wrote about it here, here, here, here and here.

*I recently published (along with co-authors Mady Hornig and David Putrino, an opinion piece in STAT about the problematic trend of diagnosing patients with Long Covid as having "functional neurological disorder," or FND--the latest version of what was formerly known as hysteria and conversion disorder. I've heard from quite a lot of Long Covid patients given FND diagnoses after cursory exams, so this seems to be a major ongoing issue requiring regular coverage.

I've posted almost two dozen blogs on Virology Blog, covering a range of issues. Among the best news has been that Professor Esther Crawley, Bristol University's methodologically and ethically challenged pediatrician and grant magnet, has apparently retired from medicine, as I reported on June 12th. Among many other items, I posted an interview with Betsy Ladyzhets, co-founder and co-editor of The Sick Times, about the NIH's RECOVER initiatve, and also wrote about the agency's problematic "effort preference" metric in its "deep phenotyping" study of ME/CFS.

One Final Note

Berkeley takes a 7.5% share as the university's standard fee for gifts, plus 2.5% as a credit card fee. Therefore, adding 10% to your donation will ensure that the full amount you intend is going toward the project itself. The donation is tax-deductible (for US taxpayers).

Thanks so much for your support. I really, really appreciate it, especially at this time of global trauma.

**********

This is a link to my original Trial By Error series: https://trialbyerror.org/2015/10/21/trial-by-error-i/

This is a link to all the posts I have written on Virology Blog: https://trialbyerror.org/archives/


====
This is an update saying it was going to happen:
https://crowdfund.berkeley.edu/project/42302/updates/1

October Crowdfunding Campaign

September 25, 2024

Last year, the fall crowdfunding campaign got bumped from October to November for a few logistical reasons. This year, it is again in October. The link will go live right after midnight (Berkeley time) on October 1st.

I had previously indicated that I was considering ending the project in June, 2025, after the current academic year. That would have made this campaign the last one. But having received so many heartfelt responses to the messages I sent out after the spring campaign, and recognizing that there's still plenty to do, and assuming that next month's crowdfunding goes ok, I have decided to extend that deadline by another year.

Thanks again for the support! Some of you donated last spring for the first time. Many of you have been donating for years. It is hard to express how much I have appreciated the opportunity to keep doing this work--David

 

Good news!

Thank you @dave30th

 

Thanks for highlighting it. Part of it is that the crowdfunding always takes an emotional and psychological toll, and I dread those months. But it is what it is.

 

Yeah I quite understand that
@dave30th. Don’t know if I could bear to put myself through something like that never mind twice each year, even for such a great cause as our liberation.

Still is really good to have you with us on this journey, so fingers crossed for a successful autumn fundraiser!!!

 

Thanks, that's a really nice thing to say. It has all been an amazing and fulfillng journey for me, even as it has been difficult.

 

It’s true. I sometimes wonder the toll all this has taken you. I am really relieved to know that you feel it has had rewards as well as punishments.

 

This has now started:
https://crowdfund.berkeley.edu/project/43450
I’ve added the link into the original post.

 

Some nice comments:

 

Had ME since 1968, forced to live thru' the abuse of the community from CBT people. The real turning point came when Dave Tuller became involved. I will be forever grateful for the hope he gave.@Mithriel.

Yes I feel like that too. It was the real turning point.
David Tuller and his professional contacts were able to give backing to all the people with ME who were being wiped out fighting alone against the system.

 

$2,900 raised so far, 4% of total

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

 

From the latest AMMES e-newsletter

Please Help David Tuller, Our Champion!

Last spring, David successfully raised money through Crowdrise in order to continue investigating and blogging about the PACE trial. The funds went to the School of Public Health at the University of California, Berkeley, which created a position for David to continue his investigative work. Now the funds have run out, and Tuller has to depend on the generosity of our community to continue his work.

From the website: "Nine years ago this month, I launched Trial by Error with a 15,000-word investigation of the seriously flawed and arguably fraudulent PACE trial. The trial, which the patient community had already exposed as nonsense, had helped to establish cognitive behavior therapy (CBT) and graded exercise therapy (GET) as the standards of care for the cluster of illnesses then being called chronic fatigue syndrome (CFS) but more often these days called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

At the time, I expected that investigation to be a one-off. But here I am still fighting this same battle against many of the exact same self-styled experts. The advent of Long Covid has focused much attention on the entire overlooked category of post-acute infection syndromes (PAIS) or "infection-associated chronic conditions" (IACC), including ME/CFS. It is critical to push back against the claims of the clinicians and investigators who continue to argue, without valid or legitimate evidence, that psychological and behavioral factors are causing these devastating illnesses.

To support the project, I crowdfund donations to UC Berkeley twice a year on this in-house platform to raise the funds to cover 65% of my salary and benefits. Since the crowdfunder ended in May, I've been pretty busy. Here are a few highlights:

*In late July/early August, I attended the two-week inquest into the case of Maeve Boothby O'Neill, the 27-year-old woman who died in Exeter, UK, in October, 2021, after three hospitalizations in the preceding months. I wrote about it here, here, here, here and here.*I recently published (along with co-authors Mady Hornig and David Putrino, an opinion piece in STAT about the problematic trend of diagnosing patients with Long Covid as having "functional neurological disorder," or FND--the latest version of what was formerly known as hysteria and conversion disorder. I've heard from quite a lot of Long Covid patients given FND diagnoses after cursory exams, so this seems to be a major ongoing issue requiring regular coverage.

I've posted almost two dozen blogs on Virology Blog, covering a range of issues. Among the best news has been that Professor Esther Crawley, Bristol University's methodologically and ethically challenged pediatrician and grant magnet, has apparently retired from medicine, as I reported on June 12th. Among many other items, I posted an interview with Betsy Ladyzhets, co-founder and co-editor of The Sick Times, about the NIH's RECOVER initiatve, and also wrote about the agency's problematic "effort preference" metric in its "deep phenotyping" study of ME/CFS."

The struggle continues! And David is fighting hard for us!

Please donate HERE! https://crowdfund.berkeley.edu/project/43450

This is a link to the original Trial By Error series: https://trialbyerror.org/2015/10/21/trial-by-error-i/

This is a link to all the posts David has written on Virology Blog: https://trialbyerror.org/archives/

 

Done.

 

$4,020 raised, 6% of $67,000 Goal
54 Donors

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

 

$11,796 raised, 17% of total.

98 Donors

24 days left

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

 

Thanks for tracking this! It always seems to work out in the end despite my complicated feelings about it all.

 

$14,701 raised, 21% of total, 110 donors

23 days left.

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

 

$30,334 raised, 45% of total, 207 donors

15 days left.

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

 

Done. Thanks never seem adequate enough. It's hard to believe that 9 years ago this month, we eagerly devoured every word of the first in the Trial by Error trilogy. I remember like it was yesterday; ignoring your pleas to us not try and read 15,000 words, all in one go to avoid crashing. because what you were saying was that important. That you have been willing to stay the course to expose layer after layer of the horror story which impacts our daily lives, despite some of the crap that has no doubt been hurled in your direction as a result from those who did not greet it with such enthusiasm, is testament to your fearless investigative journalism, integrity and humanity.

 

@dave30th

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/

 

$31,068 raised, 46% of total.

212 Donors

14 days left.

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