By David Tuller, DrPH
*This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here.
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“Frail and Furious” on May 12th
Each year on May 12th, an international day of ME awareness, #MillionsMissing protests are held in cities across the world and draw significant media attention. This month’s #MillionsMissing campaign has the tagline “Frail & Furious,” according to the page for the event on #MEAction’s site. The organization launched the campaign ten years ago.
Why specifically “frail”? (“Furious” is easy to understand.)
Here’s why, per #MEAction:
“In the U.S., new Medicaid rules will force people with ME and Long COVID to work 80 hours per month or lose their government health insurance, unless they can prove they have a “serious or complex medical condition” in order to get a “medically frail” exemption.
“We know that both are true for the majority of our community but, once again, we are having to fight to prove this to our health leaders. When ME is overlooked, people are denied the protections, services, and support that medically frail patients are supposed to receive.”
Here’s some more information from the site:
“Government and healthcare systems around the world fail to classify myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Diagnoses are often delayed for years, disability qualifications are complicated, and our health care is at risk. ME receives far less funding for research relative to disease burden (only 3-7% of comparable illnesses), despite massive economic costs. Over and over again, people with ME and Long COVID are asked to prove their medical frailty – how sick we really are.
“This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. We ask you to share your story on social media, once again, about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve.”
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Annual UK psychiatrist gathering hosts usual suspects on Long COVID
The UK’s Royal College of Psychiatrists is hosting its annual conference in Liverpool next month. Not surprisingly, there is a session focused on Long COVID—“Understanding and treating the Post-COVID Condition (PCC).” To be clear, Long COVID is not a psychiatric condition–as much as some of these folks would like to frame it that way.
The three featured speakers are among the top poobahs in this domain. Alan Carson, a neuropsychiatrist at the University of Edinburgh and a founder of the field of functional neurological disorder; Paul Garner, an infectious disease expert and emeritus professor from University of Liverpool, who claimed to have cured himself of Long COVID with his strong, manly thoughts; and Trudie Chalder, King’s College London’s factually and mathematically challenged professor of cognitive behavior therapy, who produces a never-ending gusher of flaw-ridden research.
It is easy to imagine some of the twaddle and nonsense this trio will be offering the audience. Although their once-unshakable hegemony in these matters has been seriously compromised and undermined, they still retain a powerful platform. And when they gather with colleagues in their professional bubble, they can disseminate their views to like-minded parties without having to fear pushback or challenge.
Here are specifics on their panel:
Understanding and treating the Post-COVID Condition(PCC)
Chair: Dr Sridevi Sira Mahalingappa, South London and Maudsley NHS Foundation Trust, London and Dr Muj Husain, Consultant Liaison Psychiatrist, South London and Maudsley NHS Foundation Trust
What are the cognitive problems, as well as markers of brain damage, inflammation, and underlying degenerative brain disease
Professor Alan Carson, University of Edinburgh, Edinburgh
Personal experience of post-infectious fatigue and treatment evidence for post-COVID condition.
Emeritus Professor Paul Garner, University of Liverpool, Liverpool
Cognitive behaviour therapy for Post-COVID condition – patient-reported outcomes from a routine specialist clinic
Professor Trudie Chalder, King’s College London, London
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Long COVID advocates channel ACT UP
Professional bubbles can allow those inside them to speak without much concern about being contradicted by facts. But sometimes these bubbles can be burst! On April 23rd, Long COVID patient advocates took over a podium during a Paris gathering of the consortium involved in the Long COVID Project, an effort sponsored by the European Union. Among the presenters at the event were members of the self-important cabal known as the Oslo Chronic Fatigue Network. During the disruption, conference attendees scurried about like frightened bunnies, confused about what was happening and unsure what, if anything, to do about it.
The video is well worth a view. The advocates accused the gathered experts of framing their illness as “psychological” and “psychosomatic.”
To some, the event might recall the shocking moment in 2009 when Kanye West (now Ye) rushed the stage and took over the podium as Taylor Swift was accepting her trophy at the Video Music Awards and anounced that Beyonce should have won. To old people with longer memories (like me), these activists seemed to be taking a page from the history of ACT UP, the activist group well-known for its colorful and often illegal public actions designed to draw attention to the AIDS epidemic and the dereliction of government and industry in addressing it.
As a young gay man in Manhattan in the 1980s, I was an early member of ACT UP. I was arrested in the first ACT UP protest on Wall Street on March 24, 1987, and loved my black Silence=Death T-shirt. In 1988, when I moved to San Francisco to join the daily newspaper, I had to step away from street activism. It’s good to see others adopting these time-honored strategies to highlight their cause.