We know a lot more about ME/CFS than we do long COVID and the symptoms are similar.
When I got long COVID, I tried searching for official sources of information and I kept running into the “this is so new we don’t know much” brick wall. However, we have known about post viral illnesses for a very long time and we have known about ME/CFS for a long time. The hallmark feature of ME/CFS is post-exertional malaise, which is also incredibly common in long COVID.
U.S. ME/CFS Clinician Coalition
Eventually I found a more official resource.
A group of doctors who have treated ME/CFS patients for decades formed the U.S. ME/CFS Clinician Coalition and developed consensus testing and treatment guidelines based on their experience. They published these guidelines on their website: mecfscliniciancoalition.org
If you are interested in the process, Dr. Lucenda Bateman from the Bateman Horne Center describes it in this 14 minute video.
To me these guidelines are very credible because they come from mainstream doctors with a lot of experience. They also have nothing to gain financially from releasing the guidelines. They all have clinics with long waiting lists and they released the guidelines for free on a site with no advertisements.
I was able to take these guidelines to my PCP as a place to start. This was helpful because my PCP is much more available than the long COVID clinc. The website has many resources, but here are some I have found useful.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management is a paper the group published in a Mayo Clinic journal that gives an overview of how to test and treat ME/CFS.
Testing Recommendations for Suspected ME/CFS is an easy-to-read paper that explains how a physican should verify a patient has ME/CFS.
ME/CFS Treatment Recommendations is a second well-written paper that explains how to treat ME/CFS and many of the symptoms that come with long COVID. Pages 8-9 have non-drug treatments that you could try at home without even involving a doctor.
Conclusion
If your primary long COVID symptoms are PEM, orthostatic intolerance, sleep disturbance, or pain, then these concise recommendations may be useful to you.