I was excited to see a new letter published a couple of weeks ago, Post-COVID "Long-Haulers" and ME/CFS, from the U.S. ME/CFS Clinician Coalition, a cooperative group of the top ME/CFS doctors in the U.S. This 1-page letter (with a page of scientific references) officially summarizes what has been reported in various media outlets previously: that many so-called COVID-19 "long-haulers" have developed ME/CFS. They provide the background and history of infectious triggers and ME/CFS, explain what ME/CFS is, and provide an explanation of and links to their own website, which provides details on diagnosing ME/CFS and mentions some treatment options. It's a short, easy-to-understand letter, so take a look at it at the link above.
Why is this a big deal?
Back in August, I wrote a post about COVID-19 Long Haulers and ME/CFS that provided links to a bunch of news articles, TV news stories, and other media summaries about those who had COVID-19 but continue to suffer with symptoms months after supposedly recovering, referred to as "long-haulers." All of those included in my post mentioned ME/CFS. The problem is that the news doesn't seem to be catching on very quickly or effectively! There are still loads of news stories every week about the "mysterious" long-haulers, saying that no one knows why they are still sick. I've noticed people joining some of the ME/CFS online support groups who are long-haulers and don't yet have a solid diagnosis.
In short, while some experts understand what is going on, it seems that most of the medical profession (particularly those who have either not believed in or made light of ME/CFS in the past), the general public, and most importantly, the patients themselves have not gotten the message that many cases of COVID-19 long-haulers fit the ME/CFS diagnostic criteria. (Note that not all long-haulers fit that criteria; some have lung damage from COVID-19 that better explains their symptoms.)
This letter is the first time that a top group of experts have all communicated as a group and provided all of the information necessary to understand how so many people who had COVID-19 could now have developed ME/CFS.
How Can You Help?
Now, what we need is to help get the word out by sharing this letter widely. Share it on social media, print it and give it to your doctor(s) so they can better understand their COVID-19 patients, and share it with anyone you know who's had COVID-19 and is still sick so that they can share it with their own doctors.
If you are looking for more information on both the link between COVID-19 and ME/CFS and how COVID-19 might affect those who already have ME/CFS (and what you can do now to protect yourself), check out these posts from the past eight months:
- Coronavirus and ME/CFS (March 4, 2020) - includes information about the specific immune dysfunction in ME/CFS, how COVID-19 might affect us, and links to ME/CFS treatments that can help to prevent and treat, with resources from several different sources.
- Info and Resources on COVID-19 and ME/CFS (April 9, 2020) - a wide range of resources on how COVID-19 might affect those with ME/CFS and treatments to help protect yourself.
- COVID-19 Long Haulers and ME/CFS (August 27, 2020) - the aforementioned post about the connection between COVID-19 long-haulers and ME/CFS, with links to lots of news stories and comments from experts.
I hope that you and your family are staying safe and healthy during this difficult time.
Please share your own experiences in the comments section, whether you already had ME/CFS or are a COVID-19 long-hauler.