Long COVID seminar, 2020
#MEAction hosted a seminar for post-COVID-19 “long haulers” in August, 2020 to educate them about ME/CFS as a potential diagnosis after viral infection, in partnership with Body Politic and the COVID-19 Working Group New York. Special thanks to Dr. Lucinda Bateman, Wilhelmina Jenkins, Brian Vastag, and JD Davids who all shared their unique experience with attendees.
Our Director of Scientific and Medical Outreach, Jaime Seltzer, planned the seminar with Terri Wilder, who moderated the live event
The ME community has faced incredible challenges in our fight for compassionate clinical care and adequate research funding. Now we face a sobering, new reality: a population of post-COVID patients, or “long haulers” are experiencing long-term consequences of COVID-19. And while they may be diagnosed with other post-viral diseases or recover completely, many may eventually be diagnosed with ME.
People with complex, chronic illnesses have hard-won knowledge and experience that could be beneficial to the long haulers and their medical providers — regardless of their ultimate diagnosis. We cannot allow these new members of the chronic illness community to fight alone. To the degree we are able, it’s our job to ensure they always have an ally in us.
video clips (MORE coming soon)
Our panelists with ME mentioned a number of different resources for people with chronic complex illness. Browse their best recommendations here!
Using A Heart Rate Monitor To Prevent Post-Exertional Malaise In ME/CFS
By Suzan L. Jackson
“It’s a great resource on how to use a heart rate monitor to avoid hitting your anaerobic threshold,” Vastag says. “I’ve found this helps me with pacing.”
- How to Be a Patient: Sana Goldberg, RN
“She grew up going to hospital with her single mom, an MD!”
- How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers: Toni Bernhard
“The author lives with ME/CFS. There’s a great pocket version! — can be in the phone in your pocket if you get digital.”
- Beyond The Bullshit Of ‘Too Bad, So Sad’: On Life With Chronic Illness and Disabilities
Asher Wolf, Medium
- How Not to Track Symptoms, and Why, and When to Do It Anyway
JD Davids, Cranky Queer Guide to Chronic Illness
- #MEAction’s Hospitalization Kit Can be found on COVID resources page: (https://www.meaction.net/covid-19/)
One handout is a fillable form to hand to new doctors; the other is a packing list and advice.
I also recommend How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard.
There is a wonderful article she wrote in Psychology Today called 7 Tips for Making Peace With Chronic Pain and Illness.
Continuing medical education is the best way to ensure that your provider understands ME, and can provide you with a diagnosis, support, and management advice. Recognizing post-exertional malaise (PEM) is possibly one of the most challenging aspects of disease for patient and provider.
You can find a CME based on the award-winning documentary about ME, Unrest, here. That page also has links to a straightforward two-pager for diagnosis and treatment, and our research review, current up to 2019. These make great scientific and medical resources understand ME and to share with others.
If clinical education and public health is important to you, please consider donating by clicking on the button below!