The Boston Globe: A doctor watches his 28-year-old daughter suffer from long COVID. He clings fiercely to hope.

Rob Crausman is a lung specialist who for a decade ran the Brown-affiliated residency training program at a Pawtucket, R.I., hospital. He’s also the former administrator of the Rhode Island medical board, a former hospital chief medical officer, and co-founder of a string of primary care and urgent care centers. After practicing medicine in so many different settings, he never imagined his profession could so completely fail his own child at her time of greatest need.

“I’m profoundly disappointed,” he said.

To this day, he gets well-meaning advice from physician friends who show surprising ignorance about his daughter’s condition.
“If I have one more person tell me that she just needs to do yoga, I will lose my mind,” he said.
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Crausman said he is fortunate that he’s in a position to devote himself fully to his daughter. He has used his knowledge and connections to try every treatment that had evidence of possibly working. He sent a blood sample for testing in Germany, and found she had a high level of auto-antibodies, which attack certain receptors throughout the body. He started her on a prolonged course of the antiviral Paxlovid. Her experience was later written up in a case series of 13 patients. Some got better. Samantha Crausman “crashed” and had to stop the drug after 10 days. The same thing happened when she tried monoclonal antibodies, which eased post-exertional malaise in some patients, possibly by clearing lingering fragments of the virus.
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Stellate ganglion block —

She traveled to Boston for another treatment that seemed to hold promise – injecting the anaesthetic lidocaine into a cluster of neurons in her neck. This procedure had been used to treat PTSD and anecdotally had helped some long COVID patients. Not only did that fail to yield any benefit, the experience left her immobilized for months, and she never fully recovered.
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In many ways this seems a well written account of a tragic and very familiar story, but the portion where ME/CFS is mentioned seems rather dismissive and designed to suggest that LC is the real problem. I suppose the author can't be blamed for confusion about the relationship between severe LC and ME/CFS... it's not as though there's any agreement on this anywhere else. Still frustrating. I fear that many in my circle (such as it is) would be likely to focus on the distinction rather than on anything else.

Still, it is good that they focus on the desperate search for treatment, the scraping unconvincing studies for a glimmer of hope, and the seemingly inevitable catastrophe when it all just makes everything worse.
 
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