Trial By Error, by David Tuller
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An Essay on Living with Severe ME
I’ve been totally out of commission for three weeks while recovering from bruised ribs sustained in a fall. I have devoted most of my time trying to find sitting and lying positions that did not cause excruciating pain. That part is over, and I’m slowly getting back to work and catching up on what’s been…
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My Unexpected E-Mail Exchange with Alem Matthees
In recent months, one of the most high-profile people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—Australian Alem Matthees—has reported significant improvement in his condition. He is still bed-bound, and is still not speaking. This is not, by any means, “recovery.” Nonetheless, the change in Alem’s ability to read, consume information and communicate is remarkable. As Alem’s…
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Journal Publishes Confusing Section on “Enduring Symptoms”
As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional…
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More on the Canadian Long COVID Trial with Plans to Lie to Participants Receiving an Exercise Intervention
I recently posted a blog about the protocol for a Canadian Long COVID exercise trial in which the investigators proposed lying to the participants about the nature of both the study and the intervention being assessed. While acknowledging that a significant number of people with Long COVID report experiencing post-exertional malaise (PEM), the investigators appear…
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In Protocol for Long COVID Exercise Trial, Investigators Advocate Lying to Participants
Researchers are planning yet another trial of a rehabilitative exercise program for Long COVID—but, in this one, they propose to lie to all the participants about the nature of the study and the intervention being investigated. BMJ Open has recently published a paper called “Pursuing Reduction in Fatigue After COVID-19 via Exercise and Rehabilitation PREFACER:…
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Some Things I’ve Read Recently: Anil van der Zee on Sex, “Mold Warrior” Johnson, and a Rant Against the Word “Journey”
Anil van der Zee says “Fuck M.E.” One aspect of ME and ME/CFS that receives perhaps too little attention is the impact on someone’s sex life. Engaging in sexual activity takes a significant amount of energy—and is therefore likely to trigger post-exertional malaise for many with this illness. Especially for those severely affected, for whom…
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Some Things I’ve Read Recently–Aboriginals and Long COVID, Tips for Disability Claims, Profile of Ron Davis
Failure to address Long COVID in Australian Aboriginal communities Croakey Health Media is a small but feisty Australian news outlet that covers social and structural inequities in healthcare. Croakey recently published “a call for action to address Long COVID in Aboriginal communities,” which focused in particular on the situation in the Northern Territory (NT). The…
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Journalist Simon Spichak on Lack of Focus on Post-Exertional Malaise in Long COVID Exercise Trials
According to the headline of a recent article in The Sick Times, “less than 20% of Long COVID trials involving exercise even mention post-exertional malaise.” The news organization analyzed the registration records for Long COVID clinical trials and found that only a small minority assess or take into account post-exertional malaise (PEM), the defining characteristic of…
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JAMA Touts Long COVID Exercise Trial with Clinically Insignificant Results; Most LC Exercise Trials Ignore PEM, Per Sick Times
In its current “Medical News in Brief” section, JAMA is touting and amplifying the questionable claims of a flawed trial to treat or prevent Long COVID published by one of the journals under its umbrella—JAMANetworkOpen. The JAMA headline: “Resistance Training Improves Long COVID Outcomes.” Technically, the headline is true. In the trial, participants who received…
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Another Exercise Trial with Clinically Insignificant Findings
A recent study from JAMA Network Open, called “Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial,” demonstrates some of the flaws that so often mar papers in this field of research. The trial’s reported results do not warrant the optimistic conclusion that the intervention “may be a generalizable therapy for individuals with persisting…
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A New Cookbook for People with Chronic Illness
In September, Rachel Riggs published her first cookbook, called “In Good Health: Uncomplicated, Allergen-Aware Recipes for a Nourished Life.” Riggs, a longtime foodie who lives in southern California, found herself unable to eat many of her favorite dishes after the onset of chronic illness a decade or so ago. (Her diagnoses include myalgic encephalomyelitis (ME),…