Trial by Error Spring 2024

Trial by Error Spring 2024 Image
$30,558
47%
Raised toward our $65,000 Goal
238 Donors
13
days left
Project ends on May 31, at 11:59 PM PDT
Project Owners

Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"

I am once again seeking funds to continue my work on ME, ME/CFS, and now long Covid. 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 for the second half of this year--July 1-December 31, 2024. The Center uses the funds to cover my salary and benefits, including health insurance. (A key point to understand is that only around 60% of the funds raised go towards my salary; the costs for benefits/health insurance are about 40% of the total.)

I thought about ending this project a couple of years ago; my work appeared to have positively impacted the situation and had helped to undermine bogus claims that ME/CFS was psychogenic. I figured I could comfortably move on to other projects. But the arrival of Long Covid changed my mind. It was immediately apparent that the same cabal of researchers I'd spent years criticizing were seeking to colonize the field of Long Covid with the same egregiously flawed arguments and research strategies. So it seemed worthwhile to continue.

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A few recent highlights

Last month, I posted an interview with Guardian columnist and political activist George Monbiot--well-known in the UK but not in the US. George recently wrote a scathing account of the decades-long mistreatment of ME/CFS patients in which he blasts the same folks I've been criticizing for years. The post has so far had 5000+ views on Youtube. Earlier this year, I conducted an interview with journalist Ed Yong, who won a Pulitzer Prize for his coverage of the pandemic in The Atlantic and brought widespread attention to the issue of Long Covid.

After an extended back-and-forth, the prominent journal NeuroImage: Clinical finally published the letter I spearheaded explaining how neurologists and others promoting the diagnosis of "functional neurological disorder" (FND) have routinely inflated prevalence rates while mis-citing a seminal study in their field of expertise. Nine colleagues--equally troubled by what seems to be a flagrant case of research misconduct--co-signed the letter. I will have more to say about FND in upcoming months.

I have sent letters to The BMJ seeking a correction in a widely publicized paper about a rehab program for Long Covid--the first was co-signed by 11 colleagues, the second by 23. The paper declared the intervention to be clinically effective even thought the results did not meet the designated threshold for clinical significance. And I recently posted about guidelines published by the Royal Australian College of General Practitioners promoting graded exercise therapy--rechristened as "incremental physical activity"--and actually reference as evidence the fraudulent PACE trial. 

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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, Australia, and many other countries. As part of this project, I also write commentaries for academic journals and stories for major news organizations. 

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Some more background

In October 2021, 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. 

One Final Note

Berkeley takes a 7.5% share as the university's standard fee for gifts, plus 2.5% as a crowdfunding/credit card fee. Therefore, adding 10% 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://trialbyerror.org/2015/10/21/trial-by-error-i/

This is a link to all the posts I have written on Virology Blog: https://trialbyerror.org/archives/

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