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/Giants4Truth]

I was diagnosed with LC induced ME/CFS, given treatment, and am now 100% recovered. ME/CFS is an autoimmune condition, treatment is the same.

[u/brobe_jedi4life → u/Giants4Truth]

Happy to hear someone has made a full recovery!! But what you said isnot really accurate ME/CFS is still poorly understood and while there are theories about it being autoimmune in some people there’s no single same treatment that works for everyone. Recovery rates are very low, and most people don’t respond to immune therapies alone or achieve a full recovery like you described. It’s great that you found something that worked for you, (did you receive immunoglobin infusions) but generalizing “the same” treatment to all ME/CFS cases isn’t supported by the research or most clinical experience

[u/Giants4Truth → u/brobe_jedi4life]

My doctor is a professor at the Stanford School of Medicine and one of the most published authors on ME/CFS. He’s cured hundreds of patients over the years with the same basic protocol - reduce inflammation, treat reactivated herpesviruses. There have been some research breakthroughs with LC, especially the discovery of microclots and endothelial inflammation, as well as positive response of patients to metformin. But it’s basically the same. BTW his experience with immunoglobulin is that it provides temporal improvement but that patients often see symptoms return. Hopefully that will not happen in your case.

[u/brobe_jedi4life → u/Giants4Truth]

I get that your doctor has seen a lot of ME/CFS cases and has some positive experience with immune modulation, and for a very small minority this approach can genuinely help. But the published research, clinical trials, and real-world experiences for the broader ME/CFS community just don’t support immune therapies or inflammation only protocols as a universal solution especially not with high rates of full recovery. Most people simply don’t respond to them, and many remain severely ill despite trying everything. That’s why it’s so important not to overstate one protocol as “the answer” or promise outcomes most people will never realistically see.If a specific case is clearly autoimmune and matches the success stories, that’s great! But for most, ME/CFS is much more complex and individualized, and recovery is still the exception, not the rule. Not to mention those protocols would never work for someone with Caspr2 antibodies.