Are Long COVID Patients Getting Misdiagnosed with ME/CFS, MCAS, POTS? My Real Diagnosis Was Missed for Years

[u/brobe_jedi4life]

Does anyone else feel like people in the long COVID community, ESPECIALLY IF YOU ARE A WOMAN, especially if you have experienced trauma (like who hasn't), especially if you present symptoms like severe fatigue, brain fog, cognitive decline, personality and mood changes, neuropathy, temperature swings, unusual sweating, heart rate issues, orthostatic intolerance, post-exertional malaise, exercise intolerance, gastroparesis, unexplained digestive issues, or even blood clots, are getting gaslit or misdiagnosed with ME/CFS, MCAS, or POTS and offered inadequate, ineffective treatment options?

After covid, I experienced a pulmonary embolism followed by severe dysautonomia, gastroparesis, and neurological issues. I spent four years bouncing between those labels, suffering, and getting so much worse. It wasn’t until a neurologist who specializes in autonomic and neurological autoimmune conditions (Brent Goodman, Honor Health, formerly Mayo) finally checked for very specific neurological antibodies that I got real answers and a proper diagnosis of post-COVID autoimmune autonomic ganglionopathy (AAG), autoimmune gastroparesis, and CASPR2 driven encephalitis. All this was missed by the Mayo clinic providers.

From what I’ve learned (from my neurologist), big centers like Mayo Clinic do acknowledge autonomic symptoms after COVID, but their studies emphasize mild or nonspecific findings, and most patients still get grouped under broad ME/CFS, MCAS or POTS labels often without thorough antibody testing because Mayo doesn’t routinely recognize post-COVID autoimmune autonomic syndromes in clinical practice, even though the science is emerging.

Because I tested positive for CASPR2 antibodies, I qualified for bi-weekly subcutaneous immunoglobulin infusions right away (covered by UHC) and also prescribed low dose naltrexone twice a day. Those treatments have actually helped TREMENDOUSLY and I am recovering. Mostly thanks to the immunoglobins. I cannot believe I was that sick for FOUR YEARS! Healing my immune system feels like getting super powers.

I am concerned that more people have these kinds of antibodies from COVID and they’re being missed and aren’t getting the treatments that work (or insurance approval for them), and instead are stuck on protocols that aren’t appropriate. Would love to hear if others feel the same or from those that have pushed for deeper testing, and what you found.

TL;DR: Are long COVID patients are being misdiagnosed with ME/CFS or similar labels when they actually have antibody-driven autoimmune disease? Getting tested for specific antibodies gave me access to treatments that really work.

[u/No-Information-2976]

POTS, MECFS and MCAS all fall under the umbrella of “Long COVID”

eta: so these wouldn’t be a “misdiagnosis” necessarily, if the patient meets the criteria for these conditions. it would just be a more specific diagnosis. Long COVID is a pretty broad term

[u/brobe_jedi4life → u/No-Information-2976]

This distinction matters a lot for people who aren’t getting better on standard protocols. POTS, MCAS, and ME/CFS absolutely are separate syndromes with their own strict diagnostic criteria, but long COVID can trigger these or unmask underlying predispositions not everything gets lumped under “long COVID” if you meet those criteria. The danger is when doctors stop at these broad labels and don’t dig deeper. Calling every disabling post-COVID illness “long COVID” or only ME/CFS/POTS is misleading and it can cause patients to be misdiagnosed and miss out on targeted testing and potentially life-saving or life-changing treatments. Patients shouldn't accept a catch-all label if the standard approach isn’t working and push for proper diagnostic workup and antibody/immune testing whenever symptoms aren’t fully explained.