Desperate Long Covid Patient Paid Thousands for Unproven Blood Screening Treatment: Report

A new investigative report out Tuesday found that long-standing COVID-19 patients are traveling overseas to try expensive and untested treatments for their symptoms, including screening their blood. But at least some experts are concerned about the trend, warning that this treatment lacks solid evidence to support its claimed benefits.

The report is a collaboration between The BMJ and ITV News. The authors visited or interviewed patients who went to clinics in Cyprus, Germany and Switzerland hoping to find relief for lingering post-covid symptoms. These symptoms tend to include, but are not limited to, persistent fatigue, breathing problems, and cognitive dysfunction, or brain fog.

The main treatment offered by this clinic is called apheresis. The patient’s blood is drawn, which is then “washed” and broken down into its different components of plasma and red blood cells. The blood is then recombined and finally given back to the patient via a different vein. The treatment is supposed to work to alleviate one of the long-standing causes of covid: breaking down the microclumps that form after infection.

Other treatments provided at the clinic include anti-clotting medications, infusion of vitamin supplements, and hyperbaric oxygen therapy. Doctors and patients interviewed by the authors said these interventions could cost thousands of dollars. Some patients report improvement in their symptoms afterward. But at least one patient experienced no change at all after spending more than $50,000 USD ($69,410) on his treatment, the report explains.

There is some preliminary evidence to suggest that microclumps could be associated with the old covid. There are also doctors and patients in the longtime covid community who claim that apheresis can be an effective treatment for these clots or the damage they cause. But micro-blobs aren’t the only theory put forward about how long covid lasts, and it’s possible that other mechanisms, such as persistent infection, could also be important contributors. Beyond that, there’s no solid data to suggest that apheresis will even help those with micro-blobs, beyond anecdotal accounts. It is possible, for example, that microclumps are simply a biomarker of dysfunction caused by other factors and that trying to remove them will not actually treat a person’s underlying disease.

Now there are researchers running small trials of apheresis with their old covid patients. But as a general rule, medical ethicists condemn the practice of performing experimental treatments on patients outside the context of clinical trials. Oftentimes, unscrupulous clinics and doctors will prey on people with chronic illnesses by selling treatments at exorbitant fees — a trend that many experts have warned could also be commonplace in long-lived covid circles.

“It is not surprising that previously highly functioning people, who are now frail, unable to work, unable to support themselves financially, will seek care elsewhere,” Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and a researchers about the Therapies for Long Covid in Non-hospitalized patient (TLC) trial, told The BMJ/ITV News. “This is a completely rational response to a situation like this. But potentially bankrupt people access these treatments, for which there is no evidence of their effectiveness. ”

While there are several trials for long-standing COVID treatments currently underway or set to be conducted in the near future, patient advocates argue that barely enough resources are being devoted to helping people with these symptoms. And as long as these patients are left in the cold, there will definitely be people who want to take advantage of their desperation.

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