Ryan Prior on Biden’s Plans; Physician with Long Covid; Writers Discuss ME’s Impact

By David Tuller, DrPH

I’ve sometimes highlighted interesting or enlightening articles, blog posts, and podcasts I’ve read or heard/watched. I’m trying to make sure to keep up with that effort. That’s not always easy, given the volume of material now being produced about ME/CFS, long Covid, so-called “medically unexplained symptoms,” and related issues. But here are a few more.

Journalist Ryan Prior on Biden’s long Covid plans in STAT

I have known Ryan Prior for years as a dedicated and prolific reporter at CNN. He managed to continue his career despite his challenges in navigating his own case of ME/CFS–a journey he chronicled in the documentary Forgotten Plague. His book on long Covid, The Long Haul, will be released later this year. A few days ago, STAT, the influential health and medicine site, published a cogent and thoughtful opinion piece he co-authored about President Biden’s recently announced national action plan for long Covid.

Here’s the headline: “Biden’s long Covid plan is a good start. But it needs to go further.”

And here’s part of the critique:

“The report provides a much-needed accounting of all ongoing scientific research into long Covid and social support services for it across the federal government. It identifies and amplifies key points from patients, researchers, and policymakers. But it falls short of robust, far-reaching goals.

“Advocates and patients decry a lack of scientific progress and social recognition for the chronic disease that is upending their lives. Clinical trial research via the $1.15 billion Researching COVID to Enhance Recovery (RECOVER) initiative is slated to begin in late 2022, nearly three years after the first long haulers got sick — and stayed sick. Further, while the list of services and supports the report cites is critically needed, the report does nothing to improve access to such services or educate providers about them.”

Read the rest here.


A California anesthesiologist on having long Covid

Zeest Kahn is a California anesthesiolist—and now a long Covid patient. In a moving essay posted a couple of months ago on the website of the California Society of Anesthesiologists, Dr Kahn links long Covid and ME/CFS and describes how her illness has impacted her life and work. She also offers sound advice for her fellow clinicians about caring for patients with these complex illnesses.

“While being ill with Long Covid has been awful, it has offered a new perspective on my work as a physician. I previously believed empathy is important, but more important was knowing the answer. The past two years, however, no one has had the answer. Early in the pandemic, as medical professionals we navigated uncertainty by collaborating and sharing. We opened ourselves to new information, tried and pivoted. While it has been exhausting, we continue navigating uncertainty because the ramifications of Covid-19 do not end with acute infection. This is a mass disabling event, and recovery rates are as yet unclear. Until the science is elucidated, I encourage my peers to engage patients with complex conditions like Long Covid and ME/CFS with humility, transparency, and kindness.”

Read the whole piece here.

Five writers with ME discuss their work

Last November, I posted a blog in which two novelists—Alicia Butcher Ehrhardt and Nasim Marie Jafry—offered insight into how their illness has impacted their writing. For more on that theme, check out a post from last month on Lucy Writers, a site that describes itself as “an online platform devoted to showcasing the writing of women and non-binary creatives.” In Our Words, Our Lives: Writing and M.E., five authorsNasim Marie Jafry, Laura Elliott, Henry Anderson, JP Seabright and Louise Kenward–discuss “what it’s like to write with M.E. and how chronic illness has forced them to discover new modes of understanding, new forms of expression, new realms of imagination.”

Here’s an excerpt from the account of writer/editor/journalist Laura Elliott:

“I was six-years-old when I first realised that writing stories was something someone could do as their job. From that point on, I’ve written short stories, many finished and unfinished novels, plays for stage and radio, journalism articles, and a few genre-bending pieces of creative non-fiction.  

“The first story I wrote after my revelation at the age of six, involved a goldfish imaginatively named Goldy, who spent a single A4 page trapped and swimming between eerie stone walls. It ended with her triumphant escape from the miniature castle at the centre of her goldfish bowl, and the strangely existential realisation that she was still locked inside the glass, staring out at a child’s bedroom. 

“It’s possible, then, that I’ve always been attracted to the weird. To the stories that don’t quite have a simple happy ending, but instead suggest greater troubles to come, or a limit to the protagonist’s impact on the world. When I first became ill with M.E. and a number of other chronic illnesses at the age of twenty-four, this narrative instinct for the limitations of the individual didn’t serve me as well as it might have.

And this from novelist Henry Anderson:

“It felt important to me to have got my first novel,The Mouth (Solstice Publishing), published by a small press in America without them knowing I suffered from a chronic illness.

“I wanted to feel I had somehow imaginatively escaped the confines of my bed. I was determined to write about anything that was not my illness, as an act of defiance!

“I failed, of course. My writing is intimately about the disease I suffer from… Writing advice I read once said, ‘Tell the secrets only you can tell.’ The fantasy dystopias of imagination reflect the prejudice many patients face daily. My characters regularly encounter disbelief, rudeness and cruelty.”

Check out the comments of all five writers here.