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David Tuller returns to provide an update of his investigative work to expose the methodological and ethical problems with the PACE trial for ME/CFS.
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If you appreciate the articles written here by David Tuller on ME/CFS, please consider supporting him financially at Crowdrise.
David is an investigative reporter with a doctorate in public health from the University of California, Berkeley. Since the fall of 2015, David has waged a determined effort to expose the methodological and ethical problems with the PACE trial for ME/CFS. He started this effort because he 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, David was able to pursue his investigation as a public service project because of his academic job at Berkeley. But now he needs 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, Virology Blog posted David’s 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. His 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.
David’s 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:
*His 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 he co-wrote with Julie Rehmeyer. (Please also support Julie’s terrific new book, Through the Shadowlands, about her own struggle with ME/CFS.)
*Based on his 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 David documented on Virology Blog–that the published findings are misleading and unreliable.
*In the U.S., advocates have used David’s 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.
*David’s 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 David 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 David with a wealth of blogging material.
David has pursued this investigation because of his deep concern for patients and his dismay at the poor quality of the study. He has been able to devote a lot of time to this rewarding project because of the security of his half-time academic position at Berkeley. Unfortunately, his 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 David is seeking your tax-deductible contributions for another year of investigating and blogging about the PACE trial and ME/CFS on Virology Blog. He 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.
David wants to be clear that he will continue this effort no matter what he receives through this five-week crowdfunding campaign, which ends June 30th. The question is how much time he 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
David’s goal is ambitious: $60,000, the approximate value of his current half-time salary/benefits package at Berkeley. That will allow him to continue to spend the same amount of time he has been spending on investigating, writing, helping organize open letters, and other activities related to PACE and ME/CFS.
David understands 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 his efforts by donating off-line directly to the School of Public Health at UC Berkeley, please e-mail David for further information: davetuller@berkeley.edu
David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.
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by David Tuller, DrPH
Well, not in those words, of course. It was all very polite. But that was the message.
Here’s what happened. On Monday, I posted an open letter to the members of the board of the CFS/ME Research Collaborative. The letter involved the false accusation of libel that the CMRC’s deputy chair, Esther Crawley, disseminated against me at a conference of renal experts two weeks ago. Because the accusation involved a blog post I wrote for Virology Blog, the accusation of libel also extended to Dr. Racaniello, who hosts this site.
I sent a link to the open letter to Stephen Holgate, the CMRC’s chair, and other members of the collaborative’s board. Dr. Holgate is a public supporter of Dr. Crawley’s work—he appeared with her at a press conference organized by the Science Media Centre to promote her latest venture, FITNET-NHS, a trial of online cognitive behavior therapy for adolescents with ME/CFS. (I wrote about this flawed proposal in the purportedly libelous blog that Dr. Crawley displayed on screen during her infamous presentation to the British Renal Society. In that post, I criticized Dr. Holgate for supporting Dr. Crawley’s research, given that she has a tendency to conflate “chronic fatigue†and “chronic fatigue syndromeâ€).
I did not hear back after e-mailing the link to the open letter. However, Dr. Racaniello received a cryptic response from Dr. Holgate, apparently in error. It popped up in his in-box shortly after I sent my e-mail about the open letter to Dr. Holgate and other CMRC board members. After receiving my e-mail, Dr. Holgate sent the following message to the CMRC board members:
Friends, I hope you do not feel it necessary to respond to this.
Kindest Regards,
Stephen
I had cc’d Dr. Racaniello on my original message; I presume that’s why he received a copy of Dr. Holgate’s e-mail. I wrote to Dr. Holgate, asking if he sent the e-mail to Dr. Racaniello in error, or if it was an indirect way of letting us know the CMRC would remain silent. I soon heard back from Dr. Holgate. He explained that the questions I have raised “are not the business†of the collaborative, which after all is a “voluntary†group and has “no official standing.†He told me I needed to pursue any concerns through “other avenues.â€
So that is the CMRC chair’s response to the news that his deputy chair falsely accused two other academics of libel at a professional gathering, at which she also appeared to be advising medical professionals on effective ways of avoiding their legal obligations under the freedom of information law. Dr. Holgate apparently feels this has nothing to do with the CMRC itself because it is just a “voluntary†group with “no official standing.†(What does that mean? “Official standing†with whom? The CMRC has enough “official standing†to organize conferences, issue statements, and have a board, which includes a deputy chair who makes false libel accusations  and a chair who doesn’t think that’s a problem.)
Apart from her defamatory libel claim, Dr. Crawley also appears to think that the filing of freedom of information requests related to ME/CFS is tantamount to conducting a harassment campaign. And she continues to make this ridiculous argument, even though last year’s First-Tier tribunal decision on one such request dismissed this claim in harsh terms. With all due respect to Dr. Holgate’s assurance that Dr. Crawley’s actions have nothing to do with the CMRC, Dr. Crawley’s leadership role with the group has been well promoted. It is natural for observers to assume that she speaks for many if not most of the other board members, especially when she talks about research into ME/CFS.
Unlike Dr. Crawley, the rest of the scientific world is moving fast in the direction of open access to data. Although Dr. Holgate believes the CMRC has nothing to say about Dr. Crawley’s recent performance, other board members should certainly speak up if they don’t agree with the deputy chair’s view that freedom of information requests constitute harassment. And if they don’t think Dr. Crawley should disseminate false accusations of libel against those raising legitimate and still-unanswered questions, they should speak up about that as well.
It is hard to understand why Dr. Holgate and the CMRC board think the public or funders should support a research collaborative whose co-leader falsely accuses critics of libel and publicly advocates shielding trial data from scrutiny. I do hope Dr. Holgate and his colleagues find a way to improve on their current non-response going forward.
by David Tuller, DrPH
To Members of the Board of the CMRC:
Not long ago, at the annual conference of the British Renal Society, your deputy chair disseminated the false accusation that I had libeled her. As a corollary to that, she also disseminated the false accusation that Dr. Racaniello, the Columbia University microbiologist who hosts Virology Blog, had libeled her by publishing my work. I provided Dr. Crawley with a reasonable opportunity to offer either an explanation, evidence to support her serious charge, or an apology. Dr. Crawley has done none of these things.
I interpret that as Dr. Crawley’s admission that there is nothing in my blogs that needs correcting, and therefore nothing libelous. Yet her claim, which goes to the heart of my integrity and professional reputation, remains floating around out there in the ether. Slides that go viral live online forever. (Dr. Crawley’s lecture, of course, raises other concerns as well. For the moment, I am focusing on the one that involves me.)
I have no reason to believe this is the first time Dr. Crawley has made these reckless charges against Dr. Racaniello and me. She has probably stirred many audiences with her tales of courage in confronting “anti-science†zealots. However, I have no evidence of that, so I will pretend to believe this was an isolated episode. But I would be very, very unhappy to learn that Dr. Crawley has continued making such unsupported allegations. (Why was Dr. Crawley invited to talk to a group of kidney specialists, anyway? Can cognitive behavior therapy and graded exercise therapy now cure kidney disease just like they can cure ME/CFS?)
Although Dr. Crawley’s accusation is libelous and possibly actionable, I have no intention of suing her, as I have already indicated. But I do believe in moral closure. Dr. Crawley has so far failed her moral, ethical and professional obligation to rectify the situation. Given that she is the CMRC deputy chair, her unwillingness to clean up her mess also reflects poorly on the collaborative. Although I have conveyed my concern to you, I have heard nothing from the board. Perhaps I’ll hear something at some point in the future. But in not disavowing Dr. Crawley’s accusations in a timely manner, the CMRC is effectively endorsing and enabling her behavior, as well as allowing these falsehoods to continue to percolate among medical professionals. Your silence, like Dr. Crawley’s, is not acceptable to me. Nor is it acceptable to Dr. Racaniello.
On June 1st, I am honored to be giving the keynote presentation at the dinner before this year’s Invest in ME conference. I was planning to talk about PACE, and why it is–in my opinion—an incoherent pile of nonsense. I had not planned on talking about Dr. Crawley or the CMRC. Thanks to Dr. Crawley’s attention-getting performance, my plans have now obviously changed. I will of course still discuss PACE’s failings. But I’ve never been accused of libel before, so I’m eager to share the experience with colleagues.
Plus, Dr. Crawley herself has provided fantastic visuals: There she is on stage, and behind her looms an enormous slide that features, among other items, the phrase “libellous blogs†and a screen shot of one of my Virology Blog posts, along with my name. Slam dunk! Here I am, about to give a high-profile talk in front of top scientists and ME/CFS experts from around the world, and the cosmos gifts me with a slide that captures a researcher in the very act of slandering me! Even better, she happens to be a researcher very well-known to many if not all in the audience, by reputation if not in person! How cool is that? Small world!
In my talk, I will portray Dr. Crawley’s accusation as an example of the scare tactics employed by scientists unable to provide satisfactory and adequate explanations for their methodological choices. In Dr. Crawley’s case, as I reported in the purportedly libelous blog captured immortally on screen, these troubling choices include the routine conflation of “chronic fatigue†and “chronic fatigue syndrome.†That conflation dramatically inflates the reported prevalence of the illness and leads to all kinds of problems.
Dr. Crawley and other PACE cheerleaders, not to mention the PACE investigators themselves, are similarly unable to provide logical answers to key questions like: “How was it possible that 13% of the PACE participants were already ‘recovered’ on one or both primary outcomes at baseline, before any treatment at all? Why was this key information not included in the published papers? Why were these participants even in the trial in the first place?†It is easier to accuse me of libel than to answer these prickly questions.
Dr. Crawley also showed a slide of the patient petition campaign against the MEGA project. Perhaps she believes that the Wellcome reviewers were negatively influenced by this organized opposition when they rejected her preliminary application. That could easily be the case, although it is also possible, as I noted earlier, that the MEGA proposal was simply not up to Wellcome’s exacting standards. Unfortunately for Dr. Crawley going forward, this most recent incident and the viral photos of her “anti-science†lecture are likely to stick to her and her professional reputation like glue. Through an easy google search, prospective colleagues, collaborators, grant reviewers and major funders will likely learn that she has accused other researchers of libel without explaining herself, providing any evidence, or apologizing.
It is also troubling that Dr. Crawley has, once again, positioned the filing of requests under the U.K.’s freedom of information (FOI) law as part of the “anti-science†playbook. Her slides on “vexatious requests†and other FOI exemptions suggest she was schooling the nephrologists in the most effective ways to sidestep the law’s requirements and avoid legal obligations to provide documents and information. I wonder if the University of Bristol believes it is appropriate for Dr. Crawley to be disseminating such advice. I doubt very much she informed the nephrologists that the most high-profile decision on a FOI request related to PACE, from the First-Tier Tribunal last summer, demolished the argument that the request was “vexatious.â€
In ordering the liberation of the raw, anonymized trial data, the First-Tier Tribunal also noted widespread concern in the scientific world about the PACE trial’s irregularities. In particular, the decision cited an open letter to The Lancet and its editor, Richard Horton, that I organized last year. That letter, posted on Virology Blog, was signed by dozens of leading scientists and clinicians, who wrote that the PACE trial’s flaws “have no place in published research.†An open letter to Psychological Medicine, posted in March and demanding retraction of the PACE “recovery†paper, was signed by more than 100 experts. In other words, any suggestion from PACE defenders that only “anti-science†patients are challenging this body of deficient research is demonstrably untrue.
The First-Tier Tribunal also found no evidence supporting the PACE investigators’ hyperbolic claims of being the victims of a campaign of harassment, although the ruling acknowledged that Trudie Chalder had been heckled somewhere. Let me reiterate this critical point: The expensive lawyers for Queen Mary University of London, representing the interests of the PACE team to the best of their august abilities, presented NO CONVINCING EVIDENCE that the investigators were subject to abuse and death threats. (Having said that, I have no doubt that Dr. Crawley and other researchers have received many distasteful, hostile e-mails. While that is deeply unfortunate, it is no excuse for the persistent refusal to acknowledge flaws in the research.)
Moreover, as a result of the court order demanding release of the data, everyone can now see what was obvious to patients long ago: The PACE investigators changed their endpoints mid-stream in ways that jacked-up their reported rates of “improvement†and “recovery.†Then, when patients wanted to see the results per the methodology promised in the protocol, the PACE investigators stonewalled and called those requesting the data “vexatious.â€
At first, the “vexatious†meme worked for the PACE team. But not anymore. The First-Tier Tribunal saw right through it. The scientific case against PACE has now been documented in peer-reviewed journals, and more publications are on the way. Dr. Crawley might not have liked the First-Tier Tribunal decision. She can misrepresent the results of the reanalyses of the PACE trial data, as she did in an interview several months ago, and continue to hail PACE as a “great, great†trial. But invoking “vexatiousness†at this stage, after the tribunal ruling and publication of the reanalyses, is not a viable strategy.
Dr. Crawley has failed to notice that the situation has shifted dramatically in the past two years. Top scientists outside the bubble-think of CBT/GET adherents have scrutinized the PACE study, found themselves shocked at its deficiencies, and confirmed that the reported results are bogus. They have made their views public to demonstrate the depth of their convictions about the study’s flaws. Does Dr. Crawley consider all of them “vexatious�
It is understandable the CMRC board would prefer to hunker down and ignore the growing public relations disaster that Dr. Crawley has created. But your group has already stumbled multiple times in its efforts to gain credibility with the patient community, not to mention with funding bodies like Wellcome. You don’t have many chances left, if any. Dr. Crawley’s viral cri de coeur against patients (and others) seeking the truth about PACE represents another black mark for the organization.
Ignoring Dr. Crawley’s behavior or letting the matter drag on for weeks and months is not a recommended strategy. With no explanation or apology for your deputy chair’s actions anywhere in sight, the CMRC’s reputation is sustaining serious ongoing damage. My best advice is to behave like responsible scientists and address the matter of Dr. Crawley’s unjustified public accusations against Dr. Racaniello and me. Enough is enough.
Best—David
David Tuller, DrPH
School of Public Health
Graduate School of Journalism
University of California, Berkeley
Last week, Virology Blog posted an open letter to the editors of Psychological Medicine. The letter called on them to retract the misleading findings that participants in the PACE trial for ME/CFS had “recovered†from cognitive behavior therapy and graded exercise therapy. More than 100 scientists, clinicians, other experts and patient organizations signed the letter.
Three days later, I received a response from Sir Robin Murray, the UK editor of Psychological Medicine. Here’s what he wrote:
 Thank you for your letter and your continuing interest in the paper on the PACE Trial which Psychological Medicine published. I was interested to learn that Wilshire and colleagues have now published a reanalysis of the original data from the PACE Trial in the journal Fatigue: Biomedicine, Health & Behavior, a publication that I was not previously aware of. Presumably, interested parties will now be able to read this reanalysis and compare the scientific qualiity of the re-analysis with that of the original. My understanding is that this is the way that science advances.
This is an unacceptable response.  Sir Robin Murray is misguided if he believes that science advances by allowing misleading claims based on manipulated data to stand in the literature. When researchers include participants who were already “recovered†on key indicators at baseline, the findings are by definition so flawed and nonsensical they must be retracted.
That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled†and “recovered†simultaneously on an outcome measure is astonishing and deeply troubling. It is equally astonishing that the PACE authors now defend themselves, as noted in a New York Times opinion piece on Sunday, by arguing that this overlap doesn’t matter because there were also other recovery criteria.
In response to the comments from Psychological Medicine, we are reposting the open letter with 17 added individuals and 24 more organizations, for a total of 142 signatories altogether. These include two lawyers from Queen Mary University of London, the academic home of lead PACE investigator Peter White, along with other experts and ME/CFS patient groups from around the world.
Sir Robin Murray and Dr. Kenneth Kendler
Psychological Medicine
Cambridge University Press
University Printing House
Shaftesbury Road
Cambridge CB2 8BS
UK
Dear Sir Robin Murray and Dr. Kendler:
In 2013, Psychological Medicine published an article called “Recovery from chronic fatigue syndrome after treatments given in the PACE trial.â€[1] In the paper, White et al. reported that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) each led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.â€
PACE was the largest clinical trial ever conducted for chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME/CFS), with the first results published in The Lancet in 2011.[2] It was an open-label study with subjective primary outcomes, a design that requires strict vigilance to prevent the possibility of bias. Yet PACE suffered from major flaws that have raised serious concerns about the validity, reliability and integrity of the findings.[3] Despite these flaws, White et al.’s claims of recovery in Psychological Medicine have greatly impacted treatment, research, and public attitudes towards ME/CFS.
According to the protocol for the PACE trial, participants needed to meet specific benchmarks on four different measures in order to be defined as having achieved “recovery.â€[4] But in Psychological Medicine, White et al. significantly relaxed each of the four required outcomes, making “recovery†far easier to achieve. No PACE oversight committees appear to have approved the redefinition of recovery; at least, no such approvals were mentioned. White et al. did not publish the results they would have gotten using the original protocol approach, nor did they include sensitivity analyses, the standard statistical method for assessing the impact of such changes.
Patients, advocates and some scientists quickly pointed out these and other problems. In October of 2015, Virology Blog published an investigation of PACE, by David Tuller of the University of California, Berkeley, that confirmed the trial’s methodological lapses.[5] Since then, more than 12,000 patients and supporters have signed a petition calling for Psychological Medicine to retract the questionable recovery claims. Yet the journal has taken no steps to address the issues.
Last summer, Queen Mary University of London released anonymized PACE trial data under a tribunal order arising from a patient’s freedom-of-information request. In December, an independent research group used that newly released data to calculate the recovery results per the original methodology outlined in the protocol.[6] This reanalysis documented what was already clear: that the claims of recovery could not be taken at face value.
In the reanalysis, which appeared in the journal Fatigue: Biomedicine, Health & Behavior, Wilshire et al. reported that the PACE protocol’s definition of “recovery†yielded recovery rates of 7 % or less for all arms of the trial. Moreover, in contrast to the findings reported in Psychological Medicine, the PACE interventions offered no statistically significant benefits. In conclusion, noted Wilshire et al., “the claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.â€
In short, the PACE trial had null results for recovery, according to the protocol definition selected by the authors themselves. Besides the inflated recovery results reported in Psychological Medicine, the study suffered from a host of other problems, including the following:
*In a paradox, the revised recovery thresholds for physical function and fatigue–two of the four recovery measures–were so lax that patients could deteriorate during the trial and yet be counted as “recovered†on these outcomes. In fact, 13 % of participants met one or both of these recovery thresholds at baseline. White et al. did not disclose these salient facts in Psychological Medicine. We know of no other studies in the clinical trial literature in which recovery thresholds for an indicator actually represented worse health status than the entry thresholds for serious disability on the same indicator.
*During the trial, the authors published a newsletter for participants that included glowing testimonials from earlier participants about their positive outcomes in the trial.[7] An article in the same newsletter reported that a national clinical guidelines committee had already recommended CBT and GET as effective; the newsletter article did not mention adaptive pacing therapy, an intervention developed specifically for the PACE trial. The participant testimonials and the newsletter article could have biased the responses of an unknown number of the two hundred or more people still undergoing assessments—about a third of the total sample.
*The PACE protocol included a promise that the investigators would inform prospective participants of “any possible conflicts of interest.†Key PACE investigators have had longstanding relationships with major insurance companies, advising them on how to handle disability claims related to ME/CFS. However, the trial’s consent forms did not mention these self-evident conflicts of interest. It is irrelevant that insurance companies were not directly involved in the trial and insufficient that the investigators disclosed these links in their published research. Given this serious omission, the consent obtained from the 641 trial participants is of questionable legitimacy.
Such flaws are unacceptable in published research; they cannot be defended or explained away. The PACE investigators have repeatedly tried to address these concerns. Yet their efforts to date—in journal correspondence, news articles, blog posts, and most recently in their response to Wilshire et al. in Fatigue[8]—have been incomplete and unconvincing.
The PACE trial compounded these errors by using a case definition for the illness that required only one symptom–six months of disabling, unexplained fatigue. A 2015 report from the U.S. National Institutes of Health recommended abandoning this single-symptom approach for identifying patients.[9] The NIH report concluded that this broad case definition generated heterogeneous samples of people with a variety of fatiguing illnesses, and that using it to study ME/CFS could “impair progress and cause harm.â€
PACE included sub-group analyses of two alternate and more specific case definitions, but these case definitions were modified in ways that could have impacted the results. Moreover, an unknown number of prospective participants might have met these alternate criteria but been excluded from the study by the initial screening.
To protect patients from ineffective and possibly harmful treatments, White et al.’s recovery claims cannot stand in the literature. Therefore, we are asking Psychological Medicine to retract the paper immediately. Patients and clinicians deserve and expect accurate and unbiased information on which to base their treatment decisions. We urge you to take action without further delay.
Sincerely,
Dharam V. Ablashi, DVM, MS, Dip Bact
Scientific Director
HHV-6 Foundation
Former Senior Investigator
National Cancer Institute
National Institutes of Health
Bethesda, Maryland, USA
James N. Baraniuk, MD
Professor, Department of Medicine
Georgetown University
Washington, D.C., USA
Lisa F. Barcellos, MPH, PhD
Professor of Epidemiology
School of Public Health
California Institute for Quantitative Biosciences
University of California, Berkeley
Berkeley, California, USA
Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, USA
Alison C. Bested, MD, FRCPC
Clinical Associate Professor
Faculty of Medicine
University of British Columbia
Vancouver, British Columbia, Canada
Molly Brown, PhD
Assistant Professor
Department of Psychology
DePaul University
Chicago, Illinois, USA
John Chia, MD
Clinician and Researcher
EVMED Research
Lomita, California, USA
Todd E. Davenport, PT, DPT, MPH, OCS
Associate Professor
Department of Physical Therapy
University of the Pacific
Stockton, California, USA
Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, USA
Simon Duffy, PhD, FRSA
Director
Centre for Welfare Reform
Sheffield, UK
Jonathan C.W. Edwards, MD
Emeritus Professor of Medicine
University College London
London, UK
Derek Enlander, MD
New York, New York, USA
Meredyth Evans, PhD
Clinical Psychologist and Researcher
Chicago, Illinois, USA
Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, USA
Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, USA
Keith Geraghty, PhD
Honorary Research Fellow
Division of Population Health, Health Services Research & Primary Care
School of Health Sciences
University of Manchester
Manchester, UK
Ian Gibson, PhD
Former Member of Parliament for Norwich North
Former Dean, School of Biological Sciences
University of East Anglia
Honorary Senior Lecturer and Associate Tutor
Norwich Medical School
University of East Anglia
Norwich, UK
Rebecca Goldin, PhD
Professor of Mathematics
George Mason University
Fairfax, Virginia, USA
Ellen Goudsmit, PhD, FBPsS
Health Psychologist (retired)
Former Visiting Research Fellow
University of East London
London, UK
Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, USA
Malcolm Hooper, PhD
Emeritus Professor of Medicinal Chemistry
University of Sunderland
Sunderland, UK
Leonard A. Jason, PhD
Professor of Psychology
DePaul University
Chicago, Illinois, USA
Michael W. Kahn, MD
Assistant Professor of Psychiatry
Harvard Medical School
Boston, Massachusetts, USA
Jon D. Kaiser, MD
Clinical Faculty
Department of Medicine
University of California, San Francisco
San Francisco, California, USA
David L. Kaufman, MD
Medical Director
Open Medicine Institute
Mountain View, California, USA
Betsy Keller, PhD
Department of Exercise and Sports Sciences
Ithaca College
Ithaca, New York, USA
Nancy Klimas, MD
Director, Institute for Neuro-Immune Medicine
Nova Southeastern University
Director, Miami VA Medical Center GWI and CFS/ME Program
Miami, Florida, USA
Andreas M. Kogelnik, MD, PhD
Director and Chief Executive Officer
Open Medicine Institute
Mountain View, California, USA
Eliana M. Lacerda, MD, MSc, PhD
Clinical Assistant Professor
Disability & Eye Health Group/Clinical Research Department
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, UK
Charles W. Lapp, MD
Medical Director
Hunter-Hopkins Center
Charlotte, North Carolina, USA
Assistant Consulting Professor
Department of Community and Family Medicine
Duke University School of Medicine
Durham, North Carolina, USA
Bruce Levin, PhD
Professor of Biostatistics
Columbia University
New York, New York, USA
Alan R. Light, PhD
Professor of Anesthesiology
Professor of Neurobiology and Anatomy
University of Utah
Salt Lake City, Utah, USA
Vincent C. Lombardi, PhD
Director of Research
Nevada Center for Biomedical Research
Reno, Nevada, USA
Alex Lubet, PhD
Professor of Music
Head, Interdisciplinary Graduate Group in Disability Studies
Affiliate Faculty, Center for Bioethics
Affiliate Faculty, Center for Cognitive Sciences
University of Minnesota
Minneapolis, Minnesota, USA
Steven Lubet
Williams Memorial Professor of Law
Northwestern University Pritzker School of Law
Chicago, Illinois, USA
Sonya Marshall-Gradisnik, PhD
Professor of Immunology
Co-Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Queensland, Australia
Patrick E. McKnight, PhD
Professor of Psychology
George Mason University
Fairfax, Virginia, USA
Jose G. Montoya, MD, FACP, FIDSA
Professor of Medicine
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine
Stanford, California, USA
Zaher Nahle, PhD, MPA
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative
Los Angeles, California, USA
Henrik Nielsen, MD
Specialist in Internal Medicine and Rheumatology
Copenhagen, Denmark
James M. Oleske, MD, MPH
François-Xavier Bagnoud Professor of Pediatrics
Senator of RBHS Research Centers, Bureaus, and Institutes
Director, Division of Pediatrics Allergy, Immunology & Infectious Diseases
Department of Pediatrics
Rutgers New Jersey Medical School
Newark, New Jersey, USA
Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain
Richard Podell, MD, MPH
Clinical Professor
Department of Family Medicine
Rutgers Robert Wood Johnson Medical School
New Brunswick, New Jersey, USA
Nicole Porter, PhD
Psychologist in Private Practice
Rolling Ground, Wisconsin, USA
Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, USA
Arthur L. Reingold, MD
Professor of Epidemiology
University of California, Berkeley
Berkeley, California, USA
Anders Rosén, MD
Professor of Inflammation and Tumor Biology
Department of Clinical and Experimental Medicine
Division of Cell Biology
Linköping University
Linköping, Sweden
Peter C. Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, Maryland, USA
William Satariano, PhD
Professor of Epidemiology and Community Health
University of California, Berkeley
Berkeley, California, USA
Ola Didrik Saugstad, MD, PhD, FRCPE
Professor of Pediatrics
University of Oslo
Director and Department Head
Department of Pediatric Research
University of Oslo and Oslo University Hospital
Oslo, Norway
Charles Shepherd, MB, BS
Honorary Medical Adviser to the ME Association
Buckingham, UK
Christopher R. Snell, PhD
Scientific Director
WorkWell Foundation
Ripon, California, USA
Donald R. Staines, MBBS, MPH, FAFPHM, FAFOEM
Clinical Professor
Menzies Health Institute Queensland
Co-Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Queensland, Australia
Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA
Eleanor Stein, MD, FRCP(C)
Psychiatrist in Private Practice
Assistant Clinical Professor
University of Calgary
Calgary, Alberta, Canada
Staci Stevens, MA
Founder, Exercise Physiologist
Workwell Foundation
Ripon, California, USA
Julian Stewart, MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chairman for Patient Oriented Research
Director, Center for Hypotension
New York Medical College
Hawthorne, NY, USA
Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, UK
John Swartzberg, MD
Clinical Professor Emeritus
School of Public Health
University of California, Berkeley
Berkeley, California, USA
Ronald G. Tompkins, MD, ScD
Summer M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA
David Tuller, DrPH
Lecturer in Public Health and Journalism
University of California, Berkeley
Berkeley, California, USA
Rosemary A. Underhill, MB, BS, MRCOG, FRCSE
Physician and Independent Researcher
Palm Coast, Florida, USA
Rosamund Vallings, MNZM, MB, BS
General Practitioner
Auckland, New Zealand
Michael VanElzakker, PhD
Research Fellow, Psychiatric Neuroscience Division
Harvard Medical School & Massachusetts General Hospital
Instructor, Tufts University Psychology
Boston, Massachusetts, USA
Mark VanNess, PhD
Professor of Health, Exercise & Sports Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA
Mark Vink, MD
Family Physician
Soerabaja Research Center
Amsterdam, Netherlands
Frans Visser, MD
Cardiologist
Stichting Cardiozorg
Hoofddorp, Netherlands
Tony Ward, MA (Hons), PhD, DipClinPsyc
Registered Clinical Psychologist
Professor of Clinical Psychology
School of Psychology
Victoria University of Wellington
Wellington, New Zealand
Adjunct Professor, School of Psychology
University of Birmingham
Birmingham, UK
Adjunct Professor, School of Psychology
University of Kent
Canterbury, UK
William Weir, FRCP
Infectious Disease Consultant
London, UK
John Whiting, MD
Specialist Physician
Private Practice
Brisbane, Australia
Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand
Michael Zeineh, MD, PhD
Assistant Professor
Department of Radiology
Stanford University
Stanford, California, USA
Marcie Zinn, PhD
Research Consultant in Experimental Electrical Neuroimaging and Statistics
Center for Community Research
DePaul University
Chicago, Illinois, USA
Executive Director
Society for Neuroscience and Psychology in the Performing Arts
Dublin, California, USA
Mark Zinn, MM
Research Consultant in Experimental Electrophysiology
Center for Community Research
DePaul University
Chicago, Illinois, USA
New individuals added 23 March 2017
Norman E. Booth, PhD, FInstP
Emeritus Fellow in Physics
Mansfield College
University of Oxford
Oxford, UK
Joan Crawford, CPsychol, CEng, CSci, MA, MSc
Chartered Counselling Psychologist
Chronic Pain Management Service
St Helens Hospital
St Helens, UK
Lucy Dechene, PhD
Professor of Mathematics (retired)
Fitchburg State University
Fitchburg, Massachusetts, USA
Valerie Eliot Smith
Barrister and Visiting Scholar
Centre for Commercial Law Studies
Queen Mary University of London
London, UK
Margaret C. Fernald, PhD
Clinical and Research Psychologist
University of Maine
Orono, Maine, USA
Simin Ghatineh, MSc, PhD
Biochemist
London, UK
Alan Gurwitt, M.D.
Former Clinical Child Psychiatry Faculty Member
Yale Child Study Center, New Haven, Connecticut
University of Connecticut School of Medicine, Farmington, Connecticut
Harvard Medical School, Boston, Massachusetts
Co-author of primers on Adult and Pediatric ME/CFS
Clinician in Private Practice (retired)
Boston, Massachusetts, USA
Geoffrey Hallmann, LLB, DipLegPrac
Former Laywer, (Disability And Compensation)
Lismore, Australia
Susan Levine, MD
Clinician in Private Practice
New York, New York, USA
Visiting Fellow
Cornell University
Ithaca, New York, USA
Marvin S. Medow, Ph.D.
Professor of Pediatrics and Physiology
Chairman, New York Medical College IRB
Associate Director of The Center for Hypotension
New York Medical College
Hawthorne, New York, USA
Sarah Myhill MB BS
Clinician in Private Practice
Knighton, UK
Pamela Phillips, Dip, Dip. MSc MBACP (registered)
Counsellor in Private Practice
London, UK
Gwenda L Schmidt-Snoek, PhD
Researcher
Former Assistant Professor of Psychology
Hope College
Holland, Michigan, USA
Robin Callender Smith, PhD
Professor of Media Law
Centre for Commercial Law Studies
Queen Mary University of London.
Barrister and Information Rights Judge
London, UK
Samuel Tucker, MD
Former Assistant Clinical Professor of Psychiatry
University of California, San Francisco
San Francisco, California, USA
AM Uyttersprot, MD
Neuropsychiatrist
AZ Jan Portaels
Vilvoorde, Belgium
Paul Wadeson, Bsc, MBChB, MRCGP
GP Principal
Ash Trees Surgery
Carnforth, UK
ME/CFS Patient Organizations
25% ME Group
UK
Emerge Australia
Australia
European ME Alliance:
Belgium ME/CFS Association
Belgium
ME Foreningen
Denmark
Suomen CFS-Yhdistys
Finland
Fatigatio e.V.
Germany
Het Alternatief
Netherlands
Icelandic ME Association
Iceland
Irish ME Trust
Ireland
Associazione Malati di CFS
Italy
Norges ME-forening
Norway
Liga SFC
Spain
Riksföreningen för ME-patienter
Sweden
Verein ME/CFS Schweiz
Switzerland
Invest in ME Research
UK
Hope 4 ME & Fibro Northern Ireland
UK
Irish ME/CFS Association
Ireland
Massachusetts CFIDS/ME & FM Association
USA
ME Association
UK
ME/cvs Vereniging
Netherlands
National ME/FM Action Network
Canada
New Jersey ME/CFS Association
USA
Pandora Org
USA
Phoenix Rising
International membership representing many countries
Solve ME/CFS Initiative
USA
Tymes Trust (The Young ME Sufferers Trust)
UK
Wisconsin ME and CFS Association
USA
New Organizations added 23 March 2017
Action CND
Canada
Associated New Zealand ME Society
New Zealand
Chester MESH (ME self-help) group
Chester, UK
German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS)
Germany
Lost Voices Stiftung
Germany
M.E. Victoria Association
Canada
ME North East
UK
ME Research UK
UK
ME Self Help Group Nottingham
UK
ME/CFS and Lyme Association of WA, Inc.
Australia
ME/CFS (Australia) Ltd
Australia
ME/CFS Australia (SA), Inc.
Australia
ME/CVS Stichting Nederland
Netherlands
ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of British Columbia
Canada
[1] White PD, Goldsmith K, Johnson AL, et al. 2013. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological Medicine 43(10): 2227-2235.
[2] White PD, Goldsmith KA, Johnson AL, et al. 2011. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 377: 823–836
[3] Racaniello V. 2016. An open letter to The Lancet, again. Virology Blog, 10 Feb. Available at: https://www.virology.ws/2016/02/10/open-letter-lancet-again/ (accessed on 2/24/17).
[4] White PD, Sharpe MC, Chalder T, et al. 2007. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurology 7: 6.
[5] Tuller D. 2015. Trial by error: the troubling case of the PACE chronic fatigue syndrome trial. Virology Blog, 21-23 Oct. Available at: https://www.virology.ws/2015/10/21/trial-by-error-i/ (accessed on 2/24/17)
[6] Wilshire C, Kindlon T, Matthees A, McGrath S. 2016. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior; published online 14 Dec. Available at: http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724 (accessed on 2/24/17)
[7] PACE Participants Newsletter. December 2008. Issue 3. Available at: http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf (accessed on 2/24/17).
[8] Sharpe M, Chalder T, Johnson AL, et al. 2017. Do more people recover from chronic fatigue syndrome with cognitive behaviour therapy or graded exercise therapy than with other treatments? Fatigue: Biomedicine, Health & Behavior; published online 15 Feb. Available at: http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1288629 (accessed on 2/24/17).
[9] Green CR, Cowan P, Elk R. 2015. National Institutes of Health Pathways to Prevention Workshop: Advancing the research on myalgic encephalomyelitis/chronic fatigue syndrome. Annals of Internal Medicine 162: 860-865.