- The medical community is engaged in research regarding long COVID, but few conclusions or approved therapies have as yet emerged.
- Desperate for relief from the life-altering symptoms of long COVID, some patients are turning to experimental treatments, such as blood-washing and blood-thinning.
- Such experimental treatments are often expensive, with a new investigative feature reporting that some are spending their life savings in hopes of a cure for long COVID.
While there is general agreement that long COVID is a genuine medical condition, it is one that remains ill-defined, and treatment options remain unclear. For those with life-disrupting long COVID symptoms, the lack of authorized medical interventions can be aggravating and frustrating.
An investigative feature published this week in The BMJ describes the experience of some people who have felt driven to take treatment of their long COVID symptoms into their own hands.
The paper reports that thousands of people with long COVID have turned to clinics that offer blood washing, or apheresis, and blood-thinners, or anticoagulants, as treatments.
People often access these treatments in foreign locations, which requires a significant outlay of money for travel, accommodations, and the treatments themselves.
BMJ Investigations Editor Madlen Davies, who authored the paper with ITV, told Medical News Today:
“The treatments — [and] the travel and accommodation abroad — are very expensive, and people are spending thousands on them. While some believe these are promising treatments for long COVID, others believe desperate patients are spending life-changing sums on invasive, unproven treatments.”
Apheresis is a generally safe procedure in which blood passes through a large needle from one arm through a filtration system then and back into the other arm. The filtering in long COVID treatment removes inflammatory proteins and lipids.
Some offer apheresis as a treatment for long COVID based on the hypothesis that microscopic blood clots — or microclots — produced by COVID-19 infection are clogging capillaries, thus reducing a person’s oxygen supply.
While some question the origin of such microclots, Dr. Douglas B. Kell, from the Department of Biochemistry and Systems Biology at the University of Liverpool in the United Kingdom, told MNT in no uncertain terms that “[p]eople who say that the origin of the microclots is not known are either being lazy in not reading the literature, or willfully ignorant.”
“The mechanisms by which the microclots explain observables such as fatigue are also clear,” said Dr. Kell, adding that there is evidence showing “that spike protein alone is sufficient to induce the fibrinaloid microclots in normal plasma.”
Dr. Etheresia Pretorius, from the Department of Physiological Sciences at Stellenbosch University in South Africa, said that her research confirms the role of microclots in long COVID.
“The microclots that we are finding in long COVID are the consequences of the original acute COVID that simply has never been resolved,” she told us.
“It is now accepted that acute COVID significantly affects the vasculature, and we know that there are numerous inflammatory molecules in circulation in acute COVID. We found microclots and platelet hyperactivation in acute COVID, too,” noted Dr. Pretorius.
“We have also found numerous inflammatory molecules entrapped inside these microclots in long COVID. Widespread vascular damage and platelet hyperactivation are also present and clinically significant,” she added.
Yet in the BMJ feature, Dr. Robert Ariëns, professor of vascular biology at the University of Leeds School of Medicine asks: “They [microclots] may be a biomarker for disease, but how do we know they are causal?”
Concerns about blood thinners
Anticoagulants can carry serious risks for patients, and treatment with anticoagulants requires close supervision by physicians. At some long COVID clinics, patients receive prescriptions for anticoagulants after returning home from treatment sites, and experts cited in the paper express concern about the rigorousness of follow-up monitoring.
Long COVID patients want treatment
Dr. Pretorius said:
“Patients need diagnosis and treatments and clinical trials to test suggested treatment options. The longer we leave patients without treatment, the more organ damage will happen, including the development of auto-antibodies, as some of my collaborators have already found and warned against.”
“Unfortunately,” she lamented, “patients — including clinicians with long COVID — had to start their own advocacy groups, simply because they have not been supported or worse, totally ignored.”
One place where such advocacy groups are proliferating, and where information and disinformation — depending on one’s perspective — are online platforms.
According to the BMJ feature, one group in particular, which has around 4,9 thousand users, was set up by the founder of a long COVID clinic in Cyprus, Greece that offers apheresis and anticoagulant treatments. The page offers help in setting up treatment appointments throughout Europe for people with long COVID.
Davies said the page’s “moderators posted positive statements about apheresis as a treatment when only anecdotal evidence exists.“
While some posts mention the high success rates and safety of the treatments, the U.K. Department of Health and Social Care told The BMJ it “strongly advises people to only access new treatment through regulated clinical trails for their safety”.
As far as admittedly risky blood thinners go, said Dr. Kell, “[i]f you look at Twitter […] you’ll find that a lot of folks are having success with the oral, nutraceutical clot-busters such as nattokinase, serrapeptase, and lumbricase. Hard to imagine how they’d work if not by getting rid of the microclots.” Yet these are still anecdotal reports circulating via social media.
In the BMJ feature, Dr. Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and a long COVID researcher, points out: “It’s unsurprising that people who were previously highly functioning, who are now debilitated, can’t work, and can’t financially support themselves, would seek treatments elsewhere. It’s a completely rational response to a situation like this.”
“But people could potentially go bankrupt accessing these treatments, for which there is limited to no evidence of effectiveness,” he warns.