Trial By Error, by David Tuller
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The Open Letter to Netflix about Afflicted
Last week, more than three dozen advocates for people with chronic illnesses signed an open letter to Netflix protesting Afflicted, a multi-part documentary. The open letter was posted on Medium. I have posted it below. (I have added my name to the list of signatories; I meant to sign on beforehand but forget to inform…
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Bruce Levin on “How Not to Conduct a Randomized Clinical Trial”
When I first began examining the PACE trial in detail, I turned to clinical trial experts to vet my concerns. One of them was biostatistician Bruce Levin, a professor at Columbia University’s Mailman School of Public Health, to whom I was referred by a mutual colleague. After he reviewed the trial, he pronounced it to…
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So What’s Happening with the MAGENTA Trial?
I’ll be in Bristol later this week for the CFS/ME Research Collaborative’s annual conference. I was not welcome last year, since I was at that point engaged in harshly criticizing the organization for its unwillingness to acknowledge that its deputy chair had falsely accused me of libel. This year, things have changed and both the…
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The Cochrane Controversy
Cochrane–formerly called the Cochrane Collaboration–is respected worldwide for its systematic reviews of medical treatments. These reviews are often cited as the definitive source of information about treatment efficacy and safety. In taking on the thankless task of assessing the data on commonly used interventions, Cochrane performs an invaluable public health service and has advanced the…
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Professor Edwards’ Letter to MRC’s Fiona Watt
Jonathan Edwards, an emeritus professor of medicine at University College London, recently sent a letter to Professor Fiona Watt, executive chairwoman of the UK Medical Research Council. The MRC was the main funder of PACE and has continued to defend the trial and its conduct. In recent years, Professor Edwards has been very involved in…
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Another Letter to BMJ’s Dr Godlee
Last week, The Times ran an article about the open letter to The Lancet concerning the PACE trial, quickly followed by a piece in The BMJ. This morning, I e-mailed the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director at BMJ. I cc’d officials at the Health Research Authority, some NICE…
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My Letter to Red Whale/GP Update
Earlier today I sent the following letter to the e-mail address I found at the website of Red Whale/GP Update, which recently disseminated a recruitment ad for FITNET-NHS. I blogged about it on Monday. I cc’d officials at the Health Research Authority, the agency that regulate research ethics. ********** Dear Red Whale/GP-Update– I am a…
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FITNET-NHS Recruitment Ad Promotes “Recovery”
A British medical education company has recently disseminated a recruitment ad for a high-profile pediatric study of treatment for what it calls CFS/ME. The recruitment ad’s headline describes the intervention being investigated as “effective,” without caveat or reservation. (Full headline: “Chronic fatigue syndrome (CFS/ME): effective home treatment for teenagers”) To back up this assertion, the…
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More Mayo, Please…
Two years ago, the Mayo Clinic referred Lisa Alioto, a patient diagnosed with chronic fatigue syndrome, to a three-day rehabilitation program–a mini-version of a multi-week program designed for those with a grab-bag of chronic pain and related conditions. These conditions, as listed on the Mayo website, include fibromyalgia, chronic back pain, so-called “nonepileptic” seizures, migraines,…
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The BPS Brigades Score Another Own Goal
Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trial—which Sir Simon had called “a thing of beauty”–to be “so profoundly flawed that it cannot be trusted.” Sir Simon tweeted out a brave front…
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Open Letter to The Lancet, version 3.0
Two months ago, Professor Racaniello sent Lancet editor Richard Horton an open letter about the indisputable methodological and ethical failings of the PACE trial. This was a follow-up to Virology Blog’s 2016 open letter to Dr. Horton; the new one detailed what has happened since then. Last month, I re-sent and reposted this new open…
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Mayo Still Champions GET
Last week I admonished the US Centers for Disease Control for including fuzzy language about exercise in its new package of “information for healthcare providers.” The way the Mayo Clinic deals with the illness it calls chronic fatigue syndrome is an excellent illustration of why it is so important for the CDC to stop fudging…