Trial By Error

Year: 2024

  • An Interview with Neuroscientist Michael VanElzakker about the Just-Published and Long-Awaited NIH Study

    So, okay…The big enchilada from the US National Institutes of Health’s seven-year, $8-million, under-recruited and over-hyped study—”Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome”–was published last week in Nature Communications. It would be fair to describe the ensuing public debate over this massive text-and-data dump as spirited. (NIH press release here; articles in The New…

  • New Long Covid Exercise-and-Therapy Study Claims Success Despite Clinically Insignificant Findings

    A new study of an online group physical and psychological rehabilitation program for Long Covid confirms once again that people given an intervention purporting to help them are more likely to tell investigators that they feel better than those given nothing of the kind. People, this is not a surprising result! It certainly wasn’t necessary…

  • Sarah Boothby Discusses Second Pre-Inquest Hearing into Death of Daughter Maeve from ME Complications

    Maeve Boothby O’Neill died of complications from ME in Exeter, England, in October, 2021, after three admissions to the local hospital. (I wrote about Maeve’s life and death last year for Codastory.com.) Since then, the family has been waiting for an inquest to be held into the circumstances of her death and the actions of…

  • Leading FND Site Confirms Criticisms on Prevalence Outlined in Our Letter to Neurology Journal

    In two recent posts, here and here, I wrote about our letter on inflated prevalence claims for functional neurological disorder (FND) and about the response from the authors of the study we criticized. The 2021 article in NeuroImage: Clinical, “Neuroimaging in functional neurological disorder: state of the field and research agenda,” asserted that FND was the…

  • Unconvincing Response to Letter on FND Prevalence Inflation

    As I wrote in a post the other day, the journal NeuroImage: Clinical has just published a letter from a group I organized about the misrepresentation of findings regarding the prevalence of functional neurological disorder (FND). They have also published a response from the authors of the article we criticized. The findings in question were…

  • Finally, Our Letter on Inflated Claims of FND Prevalence Is Published

    For more than a year, I have been criticizing experts in the field of functional neurological disorder for misrepresenting the findings of a seminal study, in effect tripling the reported prevalence rate of the condition. These untrue claims about the Scottish Neurological Symptoms Study (SNSS)—specifically, that the prevalence of FND among outpatient neurology clinics was…

  • Yet Another Meta-Analysis Purporting to Prove that CBT Is Effective for “Chronic Fatigue Syndrome”

    I just wrote about how PACE was favorably cited in an article in Nature Reviews Cardiology. Last month, that piece of crap was also included as part of yet another meta-analysis that mushed together the findings from a load of bad papers and concluded that, collectively, they prove something or other. This new paper—“Efficacy and…

  • Yet Another ME-Related Death

    It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many…

  • Debate Over Recent Citation of Arguably Fraudulent PACE Trial

    Having a discussion about the PACE trial with someone who still maintains it was a well-conducted study is like debating the 2020 election with a Trumper who insists that Biden lost. These two distinct groups exhibit the same remarkable inability or willful refusal to understand and accept reality, whether it involves basic scientific constructs or…

  • Interview with Dr Rob Wüst about New Study of Muscle Abnormalities in Long Covid

    In early January, Nature Communications published a Dutch study called “Muscle abnormalities worsen after post-exertional malaise in long COVID.” The study caused a buzz among patients, clinicians, and other researchers and generated extensive news coverage. Called. (I wrote a blog post about it here.) The investigators identified significant biological differences after an exercise challenge between…

  • Reporter Betsy Ladyzhets on Last Week’s US Senate Hearing

    Last Thursday (January 18th), the Senate Committee on Health, Education, Labor, & Pensions held a hearing called “Addressing Long COVID: Advancing Research and Improving Patient Care.” The bipartisan panel included senators who are also physicians and as well as Democrat Tim Kaine of Virginia, who has been open about his own struggles with prolonged symptoms…

  • Obituary for Beth Mazur

    By Brian Vastag Beth Anne Mazur, a fierce but unassuming advocate for people with a devastating — and devastatingly neglected — chronic illness, died on Dec. 21, 2023, in the mountains above Santa Fe, N.M. She was 47 years old.  Beth leaves behind a wide circle of dear friends; many partners in patient advocacy; a…