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David Tuller's Fundraiser:

Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

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Thanks Much To Everyone!--
July 03, 2017

Well, the campaign ended on Friday, and the final total is $71,845, in 1022 donations. That's pretty amazing, on both counts! Once I have a chance  See more

BENEFITING: The Center For Scientific Integrity Inc

EVENT DATE: May 26, 2017

David Tuller

THE STORY:


I am an investigative reporter with a doctorate in public health from the University of California, Berkeley. Since the fall of 2015, I have waged a determined effort to expose the methodological and ethical problems with the PACE trial for ME/CFS. I started this effort because I came to understand that the PACE treatments, graded exercise therapy and cognitive behavior therapy, were not just useless but could actually cause serious harm. Although patients had spent years documenting the trial's unacceptable flaws, the larger scientific world had dismissed and ridiculed their legitimate concerns. Up until this point, I've been able to pursue my investigation as a public service project because of my academic job at Berkeley. But now I need your help, and your tax-deductible contributions, to continue the effort and try to bring it to its desired conclusion -- correction of the scientific record.


Debunking PACE

In October 2015, the science site Virology Blog posted my 15,000-word investigation of the PACE trial, the largest-ever study of treatments for the ME/CFS. The findings were published in prestigious journals like The Lancet, Psychological Medicine, PLoS One and others. My investigation and multiple follow-ups revealed how the PACE researchers violated major scientific and ethical principles. Because of these multiple flaws, the trial’s reported findings—that graded exercise therapy and cognitive behavior therapy are effective and can lead to recovery—cannot be taken seriously.

My continuing investigation has had a major impact in the debate around PACE and the CBT/GET ideological movement. Here is some of what has happened: 

*My work has received coverage in many mainstream and other publications, including The Guardian, Slate, Science, The Wall Street Journal, StatNews, and NPR.  In March, The New York Times published an opinion piece about the issue that I co-wrote with my friend and colleague, Julie Rehmeyer. (Please also support Julie’s terrific new book, Through the Shadowlands, about her own struggle with ME/CFS.) 

*Based on my investigation, Virology Blog published open letters to The Lancet and Psychological Medicine, demanding that journal editors address the serious problems of the published papers. Dozens of scientists and other experts signed these open letters, which received widespread attention..

*Last summer, a British court cited the open letter to The Lancet as evidence that an "impressive roster" of experts, not just irrational patients, had serious concerns about the PACE trial. The court ordered the release of the raw trial data, which has proven what patients have known all along and what I documented on Virology Blog--that the published findings are misleading and unreliable.   

*In the U.S., advocates have used my work to pressure federal agencies to review their recommendations for GET and CBT. Based on their appeal, the Agency for Healthcare Quality and Research reassessed the literature and significantly downgraded the evidence for CBT and GET.   

*My efforts seem to have rattled the PACE investigators and their colleagues. At least, they have slipped up when they try to defend themselves and their methodological decisions. Most recently, Dr. Esther Crawley accused me in a public lecture of writing “libelous blogs." With this false accusation, she not only created a public relations nightmare for herself and her associates but has provided me with a wealth of blogging material.

I have pursued this investigation because of my deep concern for patients and my dismay at the poor quality of the study. I knew I was in a position to do it, and I knew no one else would do it if I didn't. I have been able to devote a lot of time to this rewarding project because of the security of my half-time academic position at Berkeley. Unfortunately, my current Berkekely position is ending on June 30th, after nine years. The University of California is in poor financial shape, and grant money is scarce this year. 


Current Ask

That's why I am seeking your tax-deductible contributions for another year of investigating and blogging about the PACE trial and ME/CFS on Virology Blog. I will also continue to write articles for other publications, when possible. There is much, much more investigating, blogging and hammering away to do--about conflicts of interest, about the FINE "sister" trial, about Cochrane's misleading systemtatic reviews, the false PLoS One claim that the treatments are "cost-effective," etc, etc. 

I want to be clear that I will continue this effort no matter what I receive through this five-week crowdfunding campaign, which ends June 30th. The question is how much time I will be able to devote to it.


Where the Money Goes

The money raised will be sent to the Center for Scientific Integrity, a non-profit which publishes the terrific site Retraction Watch and has agreed to serve as fiscal sponsor for this campaign. (That agreement does not mean the Center for Scientific Integrity necessarily endorses or agrees with any output of this project, which is editorially independent.) The Center will transfer 100% of the net funds -- after credit card fees and Crowdrise fees -- to the School of Public Health at UC Berkeley, which will create a position focused on investigating the PACE trial and others issues related to ME/CFS.


Goal

My goal is ambitious: $60,000, the approximate value of my current half-time salary/benefits package at Berkeley. That will allow me to continue to spend the same amount of time I've been spending on investigating, writing, helping organize open letters, and other activities related to PACE and ME/CFS.

I understand that many patients have few resources to spare. But any donation, no matter how small, will help bolster what has turned into an epic struggle to correct the scientific record. (Crowdrise charges a modest fee and provides donors with the option of having that fee added to the donation or taken from the donation.) 

If anyone would prefer to support my efforts by donating off-line directly to the School of Public Health at UC Berkeley, please e-mail me for further information: davetuller@berkeley.edu


 Thanks--David

$71,845

MONEY RAISED
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  • Anonymous

    $180

  • Anonymous

    $35

  • Amit Joshi

    $50

  • Jaime S

    $25

  • Anonymous

    $250

  • Janelle Wiley

    $10

  • John McGuinness

    $25

  • Anonymous

    $100

  • Gerald Lloyd

    $25

  • Ben Howell

    $25

  • Sophie Sleep

    $25

  • Anonymous

    $25

  • Colin

    $10

  • Anita Lim

    $50

  • Anonymous

    $10

  • Anonymous

    $100

  • Anonymous

    $25

  • Sarah Mooney

    $35

  • Anonymous

    $10

  • Hanna

    $10

  • Bernard Jensen

    $40

  • Anonymous

     

  • Anna Kerr

    $50

  • Tina Palladinetti

    $15

  • Alex Young

    $25

  • Andy H

    $500

  • Audrey Brimson

    $25

  • Paul Dunstan

    $250

  • Claudia

     

  • ME Association Denmark

    $688

  • Cathrine Engsig

    $100

  • James Foulger

    $25

  • Anonymous

     

  • Dr John L Whiting

    $250

  • Anonymous

    $100

  • Skedsmo Norway

    $100

  • Anonymous

     

  • Anonymous

    $1,000

  • Rebecca Hoort

    $25

  • Jeanne Siroky

    $25

  • Flash of Hope

    $25

  • Anonymous

    $75

  • India M

     

  • Kajsa A

    $10

  • Frauke M

    $10

  • Christopher Harkness

     

  • Victoria Blikshavn

    $50

  • Anonymous

    $2,500

  • lisa kitzmiller

    $57

  • Camilla Egeberg Ellingsen

     

  • Anonymous

    $25

  • Anonymous

    $25

  • Anonymous

    $100

  • Anonymous

     

  • Isa By

    $50

  • Sean Kirby

    $50

  • Anonymous

    $25

  • Laurie P

    $10

  • Matthew

    $50

  • Anonymous

    $30

  • Janice Johnson

    $10

  • Maureen

    $10

  • Catherine Thomson

    $50

  • Oliver Wohlmann

    $25

  • a friend and ignored patient from the UK

    $10

  • Ian Stirling

    $250

  • Anonymous

    $25

  • Anonymous

    $15

  • Anna-Lena A. Sweden

    $35

  • Anonymum

     

  • Stuart Granoff

     

  • Anonymous

    $25

  • Bjørg Bjørgum

     

  • Eileen Whitfield

    $10

  • Anonymous

    $10

  • Paul Watton

    $25

  • Jonathan Kaskel

    $15

  • Anonymous

    $15

  • Anonymous

     

  • Jamie Sugg

    $10

  • Susanna

    $10

  • sarah oconnell

    $10

  • Sue

    $25

  • Petter

    $15

  • Hannah Radenkova

    $10

  • Anonymous

    $15

  • Sally Burch

    $10

  • Polly MacLean

    $10

  • Claire Mercier

    $10

  • Anonymous

    $75

  • Bedbound in Germany

     

  • Andrea Sundström

    $10

  • Anonymous

    $300

  • R&K

    $25

  • Diane Kirk

    $10

  • M Davey

     

  • Rosa Ganymede

    $100

  • Anonymous

    $100

  • Agnes Moreki

    $30

  • Karina

    $10

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120% Raised of $60,000 Goal

Fundraise for this Campaign

The Team: $71,845 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

David Tuller

Amount Raised

$67,485

 

112% Raised of $60,000 Goal

Fundraiser Title

Julie Rehmeyer

Amount Raised

$2,892

Fundraiser Title

Helen Oliver

Amount Raised

$1,200

Fundraiser Title

Marly Silverman

Amount Raised

$118

Fundraiser Title

Jack Orenstein

Amount Raised

$100

Fundraiser Title

Julie Uwitonze Fisk

Amount Raised

$30

Fundraiser Title

Barbara Cohen

Amount Raised

$20

Fundraiser Title

Miranda Smith

Amount Raised

$0

Donor Comments

Karina

Karina

DONATION: $10

For all the people with ME/CFS whose lives have been derailed by PACE. May objective scientific evidence prevail. 2 months ago

Agnes Moreki

Agnes Moreki

DONATION: $30

2 months ago

Anonymous

ANONYMOUS

DONATION: $100

Thank you again Dr Tuller for investigating and exposing the criminality of a scientific and financial scandal, the PACE Trial, and for trying to provide justice for the harms caused to ME sufferers by these psychiatrists over the last two decades. Congratulations for meeting your goal. 2 months ago

Rosa Ganymede

Rosa Ganymede

DONATION: $100

For my sister's rights in Australia and better health care for ME survivors 2 months ago

M Davey

M Davey

2 months ago

Diane Kirk

Diane Kirk

DONATION: $10

2 months ago

R&K

R&K

DONATION: $25

With great hope that this will bring truth to the fore. Much thanks to you,very good luck! 2 months ago

Anonymous

ANONYMOUS

DONATION: $300

2 months ago

Andrea Sundström

Andrea Sundström

DONATION: $10

2 months ago

Bedbound in Germany

Bedbound in Germany

Second tiny donation. PACE and BPS form the mainstream medical opinion in Germany, too. Our official guidelines for ME/CFS are horrible. Have been sick for 14 years with no treatment. Thank you so much! 2 months ago