By David Tuller, DrPH
MSNBC anchor Mehdi Hasan can be a bulldog as an interviewer. He recently pressed Dr Anthony Fauci on the US government’s flat-footed response to the wave of long Covid cases. Dr Fauci came across as somewhat on the defensive and acknowledged that progress has been slow. He agreed that clinical trials to assess possible treatments should have been launched earlier.
He also suggested that no one knew anything about these long-term sequelae when the coronavirus pandemic began. That’s disingenuous. Everyone involved in the ME/CFS domain understood immediately that the flood of acute COVID-19 cases would lead to a secondary wave of patients complaining about non-specific symptoms; it was further predicted that they would face disbelief and dismissal from health care providers. Members of the medical establishment, including Dr Fauci, should certainly have been aware beforehand of these likely developments, given the long history of post-acute infection illnesses. Instead, they were left scrambling in dismay when patients began reporting that they were not recovering.
Hillary Johnson’s exhaustive Osler’s Web documented the federal government’s failings in its approach to “chronic fatigue syndrome” in the 1980s and ‘90s. Perhaps if Dr Fauci and his colleagues had pursued the matter aggressively back then, we would know much more now about post-acute infection syndromes in general and long Covid in particular. So it was great that Hasan pushed Dr Fauci, but I wish he’d also asked something along the lines of the following:
“You’ve said that long covid can resemble ME/CFS. You also say we knew nothing about long Covid when it started. You were around when chronic fatigue syndrome was first being investigated. If the government had done its job and taken the illness more seriously, do you think we’d know a lot more about long Covid now?”
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I’ve known Julie Rehmeyer for almost a decade. (In 2017, we co-wrote an opinion piece about the flaws of the PACE trial for The New York Times. Her book about her illness, Through the Shadowlands, was published the same year.) So it was great to see her new piece, called “Not in Your Head,” at the site Open Mind. (The site’s tagline is: “Tackling Science Controversies and Deceptions.”)
Julie’s article focuses on a major issue for people with chronic illness whose conditions have been labeled as psychological or as forms of mental illness. These tags stick to people like plaque. As the subhead notes, “Doctors sometimes dismiss physically sick patients with psychiatric diagnoses, entering errors into medical records that impede real treatment for years. Here’s how to protect yourself.”
Here’s the opening:
“You’re a doctor. You have fifteen minutes with your patient, who cries as she ticks off a laundry list of vague symptoms. Depression is very common, you think, and it could explain all of those symptoms. Do you diagnose the patient with depression, noting it in her medical record, or do you begin an expensive, time-consuming investigation?
“Now, replay the scenario from the patient’s perspective. You’re Elke Martinez, a veterinary technician, and you’ve developed muscle and joint pain, headaches, fatigue, and gastrointestinal problems. You go to your primary care doctor, part of the Kaiser Permanente healthcare system, and he attributes your symptoms to depression and anxiety. You know that’s not right, since you’re already being treated for those issues, and the treatment works. What do you do?”
Read the rest here.
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A recent study from researchers at the National Institutes of Health and published by the influential Proceedings of the National Academy of Sciences reported a potentially significant finding—that a specific protein appeared to gum up cellular energy-production processes and could play a role in triggering the kinds of relapses characteristic of ME/CFS. The prosaic title: “WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome.”
In The Washington Post, Brian Vastag—a former science reporter for the news organization who himself has ME/CFS–has provided an account of the study’s intricate and fascinating backstory. It began with one patient’s quest to find an answer to her prolonged fatigue following chemotherapy for breast cancer. Here’s the opening:
“Amanda Twinam’s journey to understand her decades-long fatigue began with a breast cancer diagnosis at age 28. Twinam underwent a mastectomy before enduring chemotherapy. The medicines made her sick and triggered seizures, which eventually brought her to a rheumatologist.
That doctor found a marker for autoimmune diseases in Twinam’s blood. And yet, none of the proposed diagnoses fully fit. ‘Fatigue was my primary complaint, sometimes my only complaint,’ says Twinam, who’d had a bout of suspected mononucleosis in high school that left her exhausted for months. ‘But no one knew what to do.’”
Read the full story here.