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Pretorius says she and her colleagues have also seen patients – fewer than 20, she estimates – with chronic problems after vaccination. She says these include Long Covid-like symptoms like brain fog and other clotting problems like deep vein thrombosis.

images-10The cause of the very rare but serious clotting after the AstraZeneca and Johnson & Johnson vaccines remains unknown, but Pretorius suspects that all COVID-19 vaccines could sometimes trigger more subtle clotting problems.

She says she has preliminary evidence that vaccination can lead to micro clots, although in most cases they go unnoticed and quickly disappear, an effect she and a colleague saw in their own blood and that of eight other healthy volunteers, who sampled. after vaccinations.

A delicate subject

The long research on Covid also brought the Dressen to Nath. In January 2021, Brian Dressen sought help from Nath, who had studied Long Covid. Nath responded quickly and asked Brianne Dressen to participate in an ongoing study leading into the natural history of inflammatory diseases of the nervous system.

Dozens more patients describing post-vaccine complications came from Nath and Farinaz Safavi, a NINDS neurologist. “I promise we will report your problem and other cases we are looking into now,”

Safavi wrote to Danice Hertz in March 2021. Hertz, a retired gastroenterologist living in Southern California, had developed debilitating side effects after one dose of the vaccine. Pfizer. Senior officials from the US Food and Drug Administration (FDA), Centers for Disease Control and Prevention, and Pfizer, among others, were copied into the email, which Hertz shared with Science.

images-11In the first half of 2021, Nath and Safavi invited Brianne Dressen and others to the NIH for testing and, in some cases, short-term treatment, such as with high-dose steroids or intravenous immunoglobulin (IVIG), which can sedate or modulate the immune responses. Patients spent at least several days undergoing neurological, cardiac and other tests, including lumbar punctures and skin biopsies.

The NIH researchers were “trying to help people,” says a health care worker whose symptoms started after the Pfizer vaccine, one of four people in the study who spoke to Science. Nath says 34 people were enrolled in the protocol, 14 of whom spent time at the NIH; the other 20 sent their blood samples and in some cases CSF.

Over time, however, patients say the NIH scientists backed off. A September visit that Brianne Dressen had scheduled for further neurological tests was converted into a telemedicine appointment. In December, Nath asked her to stop sending patients her way. “These patients better get treatment from their local doctors,” she wrote her.

For patients, the silence of the NIH has been distressing, especially as they have struggled to find assistance elsewhere. Scientists “took the data and left us hanging,” says one person who went to the NIH in spring 2021. “I have no treatment, I have no idea what’s going on with my body.” Doctors, several patients said, had nothing to offer and sometimes even declared the imagined symptoms.