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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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The last ten days of my campaign...
June 20, 2017

The response from the community to my campaign has been incredible--beyond what I imagined when I launched it a few weeks ago. I’ve been enormously  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

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To This Fundraiser

$66,038

MONEY RAISED
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    $100

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    $10

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    $25

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    $50

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    $25

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    $100

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    $25

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    $60

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    $5,000

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    $500

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    $100

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    $25

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    $250

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110% Raised of $60,000 Goal

Fundraise for this Campaign

The Team: $66,038 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

David Tuller

Amount Raised

$61,678

 

103% 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

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Jack Orenstein

Amount Raised

$100

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Julie Uwitonze Fisk

Amount Raised

$30

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Barbara Cohen

Amount Raised

$20

Fundraiser Title

Miranda Smith

Amount Raised

$0

Donor Comments

Anonymous

ANONYMOUS

DONATION: $100

Good luck with your investigative work and blogging over the next year. Thank you for challenging the PACE trial and those connected with it. Your work is helping to correct this flawed scientific record. 10 minutes ago

Dr John L Whiting

Dr John L Whiting

DONATION: $250

Judith Mason and all who have died because of ME/CFS 2 hours ago

Anonymous

ANONYMOUS

3 hours ago

James Foulger

James Foulger

DONATION: $25

4 hours ago

Cathrine Engsig

Cathrine Engsig

DONATION: $100

Tullers work is of huge importance. He gives ME sufferers hope that CBT and GET can be ruled out as effective treatments for ME. This misconception do much harm. 6 hours ago

ME Association Denmark

ME Association Denmark

DONATION: $688

7 hours ago

Claudia

Claudia

10 hours ago

Paul Dunstan

Paul Dunstan

DONATION: $250

14 hours ago

Audrey Brimson

Audrey Brimson

DONATION: $25

ME since 1980. PACE is utter rubbish. ME urgently needs recognition in Australia. Thank you for your efforts. I pray you will succeed. Psuedo-science psychiatry needs to be discredited and butt out of our lives. 16 hours ago

Andy H

Andy H

DONATION: $500

16 hours ago