By David Tuller, DrPH
As in previous years, October is crowdfunding month at the University of California, Berkeley, and I am once again seeking funds to continue my work on ME, ME/CFS, “medically unexplained symptoms,” and now long Covid. (Link here.) These tax-deductible donations to Berkeley will support my academic position as senior fellow in public health and journalism at the Center for Global Health from January through June of 2023. The Center uses the funds to cover my salary and benefits (mostly health insurance).
A short recap
Many or most of you reading this will likely be familiar with some of my work, but here’s a short recap. I launched the “Trial By Error” series with a 15,000-word investigation of the disastrous PACE trial, published on Virology Blog in October, 2015. The PACE trial tested graded exercise therapy and cognitive behavior therapy as treatments for ME/CFS. By now, I have written hundreds of blog posts about that piece of crap and other aspects of these issues not only in the UK but in the US, the Netherlands, Norway, Finland and many other countries. As part of this project, I also write commentaries for academic journals and stories for major news organizations.
Since my last crowdfunding in April, I have written dozens of post on a range of issues. Among other things, I have:
*Published a letter in the high-impact journal Brain to rebut a study arguing that POTS, a common symptom of both ME/CFS and long Covid, is “psychogenic.” Eight other academics and scientists co-signed the letter, which was posted in late September.
*Documented that experts in “functional neurological disorder,” or FND, repeatedly inflate prevalence rates by mis-citing data from a key study. They routinely declare that either 16% or even “up to a third” of all neurology consultations involve FND, when the actual rate based upon their own criteria for “rule-in” diagnosis is under 6%.
*Revealed that Professor Esther Crawley of Bristol University has not corrected seven of the eleven papers she was requested to correct by her own university and the UK’s Health Research Authority, the agency overseeing research ethics. The request that she correct her work arose out of my reporting on her ethical and methodological failures.
*Commented on the stupidity of new research from Professor Trudie Chalder, one of the most high-profile leaders of the CBT/GET ideological brigades.
*Posted interviews with David Putrino, a Mt Sinai neuroscientist, about links between ME/CFS and long Covid and the importance of trusting patients; physical therapist Todd Davenport on post-exertional malaise and the two-day CPET test; patient advocate Adam “Beyonce” Lowe, about developments after last year’s release of the new NICE guidelines; and journalist Ryan Prior about his upcoming book on long Covid.
Some more background
Last October, after a years-long struggle, the UK’s National Institute for Health and Care Excellence released its new ME/CFS guidelines. NICE found that the evidence for the psychotherapy and graded exercise approach was all of “very low” or merely “low” quallty–as patients have known all along and as I have relentlessly asserted and documented in my work. The new guidelines aren’t perfect but nonetheless represent an enormous improvement and a welcome reversal of the discredited psycho-behavioral approach championed by the so-called “experts” in the field.
But the struggle continues! Publishing guidelines is one thing; implementing them effectively is another. Opponents have mounted fierce protests against the new guidelines continue to promote the same unproven therapies they always have. Now they are applying the same template to long Covid and post-viral illness in general. If successful, this effort will end up undermining the progress that has been in the ME field.
Because of long Covid’s range of reported symptoms, many people with the illness have medical issues unrelated to ME and will not receive an ME diagnosis. But a great many will. So examining long Covid in the context of these scientific debates over the source and cause of the devastating symptoms is critical to sustain the momentum of change in the ME domain and affirming the advances in the ME field that have been made to date.
Given the speed of events, it is hard to predict exactly what will be coming up in the next six months. I will certainly continue to smack down more bad research on psychobehavioral interventions for ME/CFS, “MUS,” and long Covid. My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field.
One Final Note
Berkeley takes a 5% share as the university’s standard fee for gifts, plus 2.5% as a crowdfunding/credit card fee. Therefore, adding 7.5% to your donation will ensure that the full amount you intend is going toward the project itself. The donation is tax-deductible (for US taxpayers at least).
Thanks so much for your support. I really, really appreciate it, especially at this time of global trauma.
This is a link to my original Trial By Error series: https://www.virology.ws/2015/10/21/trial-by-error-i/
This is a link to all the posts I have written on Virology Blog: http://www.virology.ws/mecfs/