Two excellent long COVID and ME/CFS study reviews

And one robust LC article that's like a study review

Friends, today I learned about a great paper just out on ME/CFS and I thought it might be a good idea to send a quick post with a few of the studies/articles that IMHO have provided the most expansive view so far of long COVID and ME/CFS. This will be a good post to reference, to send to anyone in your life who is newly diagnosed with either condition, or to anyone who is trying to put the diagnostic or treatment pieces together.

First up, ME/CFS

#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, has co-authored a paper titled Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Mayo Clinic Proceedings on how to diagnose and manage ME/CFS, along with Dr. Stephanie Grach, Dr. Ravindra Ganesh and Dr. Tony Chon.

This most excellent paper is meant for doctors and other clinicians to learn more about this very common condition. To encourage this, it comes with a CME (continuing medical education) credit attached, so if you share it with any U.S. doctors you know, they can read it and have it count toward their licensing requirements. But it’s also a great overview piece for patients or caregivers to read to familiarize themselves with the illness. Here is a short video of Jaime Seltzer and Dr. Grach discussing the paper, for those who find reading these kinds of things to be a challenge (or a snooze-fest):

👩🏻‍🦰 In my case, it was a rheumatologist who diagnosed me with ME/CFS approximately six months after I contracted COVID. While she understood the diagnostic criteria and was empathic, she very much wanted to pass me off like a hot potato to another doctor for treatment.

Turns out as of September 2020 when I was diagnosed, there were only about 15 doctors in the U.S. who specialized in treating ME/CFS. I was fortunate to get an appointment with an excellent one in my state who accepted my insurance, but I shudder to think about folx in more rural settings or in smaller or less-resourced countries. ME/CFS should be an illness that any primary care physician can diagnose and treat. Diagnosis is not that difficult and treatments are few, which should make this fairly straightforward for a general physician to address.

Long COVID

These next two resources are not new (one is several months old), but they hold up as comprehensive reviews of the current research and treatment landscape.

The first is Long COVID: major findings, mechanisms and recommendations, published by the good folx over at the Patient Led Research Collaborative (PLRC), a group of researchers mostly comprised of first-wave long haulers (early to mid 2020).

Ground Truths

(Dr. Eric Topol) is also an author on this review. I highly recommend his Substack newsletter if you’re not already subscribed.

This paper is a thorough review of the major long COVID research findings to date (January 2023) and offers a clear understanding of what the scientific community has learned about the symptomology and mechanisms of this incredibly heterogenous disease thus far.

I’ve included the article Long COVID: The hunt for causes and cures in my newsletter before, but it’s worth having it here again. In this piece, author Shi En Kim cites Hannah Davis from the PLRC as well as many other major hitters in the LC research world. Consider this piece almost like an updated extension of PLRC’s study review. It covers viral persistence, immune dysfunction, vascular issues, mitochondrial and energy-production problems, and prevention.

No After-party this time, but I wanted to share this webinar coming up in just a few days on October 12th from 1-2pm EST: Communicating About Structural Racism and Health. This webinar will unpack new communications research from the Robert Wood Johnson Foundation on how audiences understand structural racism — and its implications for health in America. Click on the link to register.

I’ll leave you with this chuckle. Winter is coming here in the U.S., which means six months of pajamas most days for me. Looks like I’ll have no outside clothes left after 😟😆

In sickness and in health,

✌🏻 Amy