Trial By Error: Some Things I’ve Read Recently…Maryland Boosts LC Research, van der Zee on CBT, Thoughts on Hope and Chronic Illness

By David Tuller, DrPH

My rib injury sidelined me for a month. Now that I’m mostly better, I’ve been trying to get back up to speed and catch up with lots of lots of reading (and some viewing). Here are a few items that caught my eye.

Maryland seeks to boost Long COVID research, per Sick Times

The Sick Times has become a key source of information about current developments in the Long COVID arena, especially in the U.S. A recent article reported on a pioneering effort in the state of Maryland to promote Long COVID research—an important initiative given the ongoing upheaval and uncertainty roiling federal health agencies under the disastrous leadership of the egregious and repellant Robert Kennedy, Jr. 

Here’s the opening of the story:

“Maryland may soon become the first U.S. state to directly support Long COVID research and development. The state’s government is considering a bill that would establish a grant and loan program dedicated to the disease, potentially funding scientists and start-ups based in Maryland…

“While the bill itself doesn’t allocate government funding to Long COVID research, it uses existing infrastructure in the state to create a system for distributing potential gifts from private donors. If the legislation is successful, lawmakers may also consider adding funding to it in the state budget, Cheryl Lohman, a leading advocate behind the bill, told The Sick Times.

“The bill both “supports the current ecosystem of entrepreneurs” developing products for Long COVID and “sends signals to other players within the ecosystem that [infection-associated chronic conditions (IACCs)] is a category worth building and investing in,” said Ibrahim Rashid, an impact investor who advocates for funders to support Long COVID projects following his own experience with the disease.”

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Some Dutch psychologists might be shifting their views, suggests Anil van der Zee

It is always worth reading whatever Dutch patient and advocate Anil van der Zee writes. (He also creates visually arresting video-essays.) A former professional dancer who lives in Amsterdam, Anil has been bed-bound for years yet still manages to produce a fair amount of compelling content.

Last month, he posted a blog titled “Are Dutch psychologists distancing themselves from graded activity in ME/CFS?” It is a thorough (and therefore fairly lengthy) analysis that covers some of the key studies purporting to document the benefits of CBT as well as recent indications that some leading professionals might be shifting their views. (In the Netherlands, CBT for ME/CFS and related conditions is generally combined with graded activity.) 

Here’s the opening: 

“Clinical psychologists and cognitive behavioral therapists Klaas Huijbregts and Luuk Stronk wrote an interesting yet critical piece the journal Behavioural Therapy (Gedragstherapie) about the current way in which “ME/CFS” patients are treated through a rigid adherence to a protocolled form of cognitive behavioral therapy (CBT). They argue that this goes against the principles of CBT and that this form of CBT more often leads to iatrogenic harm…Whereas Huijbregts previously wrote with great astonishment about the negative attitude toward CBT, and tried to straighten out several things that were fundamentally flawed, this new article suggests that, with growing insight, a few more pieces of the puzzle have fallen into place.”

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More wisdom from the severe perspective

A couple of weeks ago, I posted a moving essay about living with severe ME written by Zoe Campbell, a longtime British patient. The essay resonated with many readers, as I expected it would. Another perspective on life with severe illness is from Jonathan, a resident of the San Francisco Bay Area in his early 30s, who fell ill as an adolescent. Jonathan spent years in search of a proper diagnosis for his symptoms and then undertook some harrowing and potentially dangerous “treatment” regimens.

His thought-provoking essay, called “On Hope and Chronic Illness,” explores the many facets of hope, including how it can lead people astray when they are desperate to get better. As he writes:

“Scientific skepticism is chronic illness self defense. Entering the world of the sick puts a target on our backs. It costs nothing for incompetent or malicious practitioners to offer what some of us need most: hope. They have an infinite supply of it to sell, and our money spends just fine. Scientific medicine can be similarly dangerous. Doctors are usually ignorant, often prejudiced, and sometimes abusive. Treatments that cause harm can be endorsed by the highest medical authorities. The safest path to getting help is rarely clear…

“Hope can put us through hell. It can make life worth living. We need it more sometimes than others, but it’s always at our side. The temptation to let it lead us where it may can be overpowering. It thinks it’s found a light at the end of the tunnel and drags us onward. It’s crucial in these moments we plant our feet and think as scientific skeptics do. That our next steps are guided by critical and not wishful thinking. That’s how we safely coexist with hope—our chronic illness companion.”