Our Crowdfunding Groups
What a year.
One thing that's happened, for obvious reasons, is that the rest of the world has discovered the existence of serious post-viral conditions. That means the illness or cluster of illnesses known these days as ME/CFS is receiving more attention.
Berkeley has again designated April as a month for campus projects to seek tax-deductible donations through the university's online crowdfunding platform for my Trial By Error project. I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.
Of that amount, approximately $40,000 is for salary, $15,000 is for health insurance/employment benefits, and $4,500 for Berkeley's 7.5 % gift fee.
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A Short Recap
Most of you reading this will likely be familiar with my work, but here's a short recap. I launched the "Trial By Error" series in October, 2015, with a 15,000-word investigation of the disastrous PACE trial, published on Virology Blog. Since then, I have written hundreds of blog posts about that piece of crap and related issues not only in the UK but in the US, the Netherlands, Norway, and many other countries, written many articles for major news organizations, authored or co-authored peer-reviewed papers, and given talks in multiple countries.
In March. the news organization VICE cited my work in an excellent article on the possible links and overlaps between ME/CFS and Long Covid. After mentioning the central role of PACE in popularizing the psychogenic view of ME/CFS, the author wrote: "Despite letters and commentaries (and even scientific studies) the PACE trial remained the gold standard for treatment, endorsed by every major medical organization. Finally, in 2015, the journalist and public health expert David Tuller published a 15,000 word critique of the study, and the tide began to turn."
Yet the following week, the Wall Street Journal ran a disturbing opinion piece that presented Long Covid as the invention of deluded patients, suggested that Long Covid and ME/CFS patients suffer from mental illness, and referenced PACE as representing the "prevailing view" of medical professionals--with no apparent awareness that the trial has been debunked. So there is apparently still a lot of work for me to do in discrediting bogus studies
Given the speed of events, it is hard to predict exactly what will be coming up in the next six months. In the UK, the National Institute for Health and Care Excellence is expected to release the final version of its new ME/CFS guidelines in August--just delayed from April! So I definitely plan to address these developments. Now that we're past the one-year mark of the pandemic, more and more Long Covid patients will likely be getting diagnosed with ME, CFS or ME/CFS, so it will be important to keep an eye on these definitional challenges. Certainly I will try to smack down more bad research on psycho-behavioral interventions for ME/CFS and other chronic illnesses, especially those that also fall under the category of so-called "medically unexplained symptoms," or MUS.
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Some Recent Highlights
Here are a few recent highlights of my work::
*The Journal of Health Psychology has accepted an analysis I co-authored (with Irish psychology professor Brian Hughes) of a recent paper by Professor Sir Simon Wessely and Professor Trudie Chalder in the Journal of the Royal Society of London. This review of clinical outcomes from almost 1000 patients who received CBT is full of bogus and unjustified claims. Our paper documents the many flaws and formally requests that the misleading abstract be corrected.
*I have written multiple posts about the complicated and unclear overlaps between ME/CFS, MUS and the Long Covid phenomenon. The biopsychosocial brigades are seeking to colonize Long Covid as they have these other fields, and it is important to keep critiquing their research and assumptions.
*Medical Humanities, a journal from BMJ, has published a paper I co-authored (with Northwestern University law professor Steven Lubet) about MUS, which called for humility on the part of experts in making definitive statements about conditions of unknown etiology. The commentary was a response to an egregious 2019 paper co-authored by Professor Michael Sharpe, one of the lead PACE investigator.
*Another co-written paper is current under view, and a couple more are in the works. While I have devoted most of my time to reporting, it is important that scientifically illiterate studies are also debunked in the medical literature and not just in journalism or blogging venues.
*BMJ Pediatrics Open has retracted a study of CBT plus music therapy as a treatment for chronic fatigue in adolescents after acute EBV (aka mononucleosis and glandular fever). The study violated multiple core scientific principles and the journal's review process broke down. A smart patient initially pointed out some of the issues to the journal, and I followed up with multiple posts and letters to BMJ. (Unfortunately, the journal posted a very bad revised version, but still.)
*I have maintained a consistent presence on Facebook and Twitter, responding to events and drawing attention to bad research and anti-scientific claims.
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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.
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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/
