Countrygirl
Senior Member
- Messages
- 5,670
- Location
- UK
It is time to donate to David Tuller's fundraising campaign again so he can continue being our brilliant ME champion.
https://crowdfund.berkeley.edu/proj...ZHM0VtgVtNJnHqIRxA_aem_UnGsWKFXWfGqR_SHDKnBuw
Trial By Error: Reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms"
Nine years ago this month, I launched Trial by Error with a 15,000-word investigation of the seriously flawed and arguably fraudulent PACE trial. The trial, which the patient community had already exposed as nonsense, had helped to establish cognitive behavior therapy (CBT) and graded exercise therapy (GET) as the standards of care for the cluster of illnesses then being called chronic fatigue syndrome (CFS) but more often these days called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).At the time, I expected that investigation to be a one-off. But here I am still fighting this same battle against many of the exact same self-styled experts. The advent of Long Covid has focused much attention on the entire overlooked category of post-acute infection syndromes (PAIS) or "infection-associated chronic conditions" (IACC), including ME/CFS. It is critical to push back against the claims of the clinicians and investigators who continue to argue, without valid or legitimate evidence, that psychological and behavioral factors are causing these devastating illnesses.
To support the project, I crowdfund donations to UC Berkeley twice a year on this in-house platform to raise the funds to cover 65% of my salary and benefits. Since the crowdfunder ended in May, I've been pretty busy. Here are a few highlights:
*In late July/early August, I attended the two-week inquest into the case of Maeve Boothby O'Neill, the 27-year-old woman who died in Exeter, UK, in October, 2021, after three hospitalizations in the preceding months. I wrote about it here, here, here, here and here.
*I recently published (along with co-authors Mady Hornig and David Putrino, an opinion piece in STAT about the problematic trend of diagnosing patients with Long Covid as having "functional neurological disorder," or FND--the latest version of what was formerly known as hysteria and conversion disorder. I've heard from quite a lot of Long Covid patients given FND diagnoses after cursory exams, so this seems to be a major ongoing issue requiring regular coverage.
I've posted almost two dozen blogs on Virology Blog, covering a range of issues. Among the best news has been that
Professor Esther Crawley, Bristol University's methodologically and ethically challenged pediatrician and grant magnet, has apparently retired from medicine, as I reported on June 12th. Among many other items, I posted an interview with Betsy Ladyzhets, co-founder and co-editor of The Sick Times, about the NIH's RECOVER initiatve, and also wrote about the agency's problematic "effort preference" metric in its "deep phenotyping" study of ME/CFS.
One Final Note
Berkeley takes a 7.5% share as the university's standard fee for gifts, plus 2.5% as a 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).
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://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/
