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Nov 12, 2021Liked by Modern Discontent

My conclusion reading this and other articles on the subject, is that long Covid is real but most of the time is not caused directly by Covid.

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I'm late to discovering your substack, but reading some of the older posts now, and this one caught my eye. Another problem not considered is that the antibody testing is unreliable. My daughter got a fever at the end of a 2-week Asian trip that had connections in China in February 2020. Upon return, she was told she didn't have COVID because it had been more than 14 days since she'd been in China (it had been 15!). No PCR test was available in her area at that time. She ended up with many of the common issues including loss of taste/smell, breathlessness, hair loss, GI issues, circulation issues in extremities, ground glass opacity in CT scan of lungs, cardiac arrhythmia, fatigue, and more. Had a rough go of it for a couple weeks (not hospitalized; no treatments available) but recovered from the acute phase. She then had continuation of many symptoms for months, and at 2 years is still not fully recovered. She was a very fit endurance athlete who had run a 50 mile ultramarathon a couple months before the trip and was training for a 100-miler but had to give it up. She couldn't walk her dog 10 steps without having to stop for breath, and many days just couldn't get out of bed. When a PCR test was finally available, she took it but was negative; not surprising, as this was months after acute infection. When antibody test was available much later, that too was negative. At that time other long-haulers, including those who HAD had a positive PCR test, reported antibody testing in online user support group surveys, and about 40% had negative tests. About 9 months after infection she was able to receive an inflammatory marker test panel developed by Dr. Bruce Patterson at IncellDx and it showed her to be significantly inflamed. More specifically, the "fingerprint" of her markers (about 15 of them IIRC) matched that of confirmed post-COVID long-haulers. IncellDx has published development of a "long-haulers index" based on a common fingerprint pattern observed in PCR-confirmed post-covid long-hauler patients. My daughter matched that fingerprint. More recently, when it became available, she took the new T-cell test but it, too, was negative. So, thus far, she has every reason to believe it was COVID based on timing, location of infection, symptoms, and the IncellDx test, but no direct genomic confirmation of the virus, viral fragments or antibodies.

All of this to say that studies like you discussed need to consider that people COULD have post-covid long-haulers syndrome without testing positive for antibodies. They would do well to use a broader spectrum of testing methods, especially before attributing anything to psychosomatic effects. The last thing long-suffering patients need is to be gaslighted. Too many are. My daughter ran into that too, though at least with the CT scan they couldn't say it was ALL in her head. But they tended to say she just had a pulmonary problem without considering the true origin and nature of the illness.

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