ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Crowd-Funding Campaign To Support David Tuller's ME/CFS Work (On The PACE Trial, etc.)
Tuesday 30 May 2017
Crowd-funding campaign to support David Tuller's ME/CFS work (on the PACE Trial, etc.)
BENEFITING: The Center For Scientific Integrity Inc
EVENT DATE: MAY 26, 2017
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.
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.
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 systematic 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.
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: firstname.lastname@example.org
blog comments powered by Disqus