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 authors—Nasim 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.
I’d hope that Zeest Kahn would urge her medical colleagues to show kindness, openness/transparency and humility towards their patients at all times anyway, regardless of where the science is at. When will doctors be taught to appreciate that, while these days we may a know a lot more than we did say a century ago, what is still not known about disease and medical conditions almost certainly towers above what is known? Patients are their bread and butter and the primary witnesses of the problems under consideration, so they should treat them with the utmost respect and set great store by what they say and report. But, in my experience as a patient in the UK, the power doctors hold as gatekeepers to treatment appears to have gone to their heads and many of them seem to have lost sight of what is key to them being effective at their work.
Doctors’ opinions always seem to trump patients’, (which can be particularly damaging when courting public and political opinion via the media), but they should be considered of no greater merit until the science is deemed rock solid by all and opinion is replaced by indisputable knowledge. I suspect this may have been what Kahn was trying to get across in relation to ‘complex conditions’ like Long Covid and ME, but it should apply to any unexplained symptoms that patients present with. Doctors have every right to document their experience of illness but it should hold no greater importance than any other patient writing about theirs. It seems to, but it shouldn’t. I’d like to see those doctors who want to write as patients getting together with patients who aren’t medics (via support groups perhaps) and writing together about their problems on an equal footing. Then perhaps patients’ experiences wouldn’t be so readily dismissed?
JACROSS, MSc/MSMed(studt.) says
I use to say, when first working assisting in hospitals, that compassion comes the day of the physician’s first MI. I really wish it wasn’t that way. That is often too late. And I do not exempt myself. I was fortunate enough to suffer “panic attacks”. A bizarre, to my mind seizure-like, near unstoppable dread of no air and impending death. Even though one knows one is surely fine. Nothing to do with “anxiety” or “panic” in any sense medical or colloquial. I would wake up having them; life rarely gets more relaxed than muscles paralyzed, laying quiet in pitch black and unconscious. Truly a strange ailment. Zero imaging findings. Humbling. Terrifying. I draw compassion from there. Some of these entries have me asking if it is enough.
Whether ignoring pt autonomy; leaving pts in pain, or sending them home under-dosed because of some “opioid pandemic moral panic” (we dare not accidentally make the pt feel better, while making them feel better! As if a few weeks on any drug implies any risk. Alcohol sold in restaurants and supermarkets.) I have come a long way on O/SUD Tx. There really was (IS?) a belief, certainly in the training, which is more akin to dark sorcery than a complex psychiatric illness (which you are usually not treating them for right now anyway!); Not really sharing in decision making is another; labeling pts “difficult” (sometimes the wrong pt. I’ve seen that more than once. And they are treated worse as a result, mark my words.)
And certainly any pt with vague symptoms like “dizzy”, with a chart that reads “Hx of SUD” or “seeking” or any psychiatric condition or “fibromyalgia” (or lyme or CE. And soon Long COVID will be added to the list.)
I am a little ashamed to admit that the physicians/associates I have seen complaining of long COVID, especially early 2020, did evoke in me a sort of _”Yep. If anyone in that graduating year: she’s the type. Who had Cathy and John in the pool…all of us?”_ . It is difficult to see how that kind of thinking, even if implicit and caught in time, would not impact care. (Though, also, what can we do? 90yr course of doxy and here is a referral for a shrink I’ve never met, but “I don’t think you’re crazy!”. I think the powerlessness of these abstract Dx is part of it. And, it is worth noting, there is a specialty for the more abstract diagnostic constructs: it is called psychiatry.) Of course, the truth is psychiatric pts can have all the same other diseases as well.
The teaching is to perform compassion. Poorly, usually. _”What would you do were it your mother?”_ and other clichés, that do not work. WebMD with prescribing and admitting privileges. And not always a more discerning “search engine” than Google either. No one I’ve worked with fits that description, of course. I have heard stories.
“Believe all pts” I think is a good start. It seems pretty simple. The rest will, in time, take care of it self. Aren’t we a medical team with our pts? They do most of the work, take all of the risks. And live with the consequences. And shouldn’t our pts always do better than someone else’s? That is surely the aim. That or medicine has become too competitive, such that it is infecting practice.
Personally, were I taken Ill and my skills could no avail me: I’d want the oldest doc on staff, who is a little eccentric, has seen too much, and is using the ‘latest fad’ from no sooner than two ‘cutting edge fads’ ago. Doing it on purpose too. And, ideally, they’d have had the same condition. Or a relative who does. That is asking a lot. But that is what I would want, in world with lamps and medical magical genies. That is what I would wish. After I wished for more medical wishes.
Thanks for sharing these.