The CDC’s interim guidance on how to treat Long-COVID (June 14, 2021 and included as the 1st link below) explicitly says to treat mast cell activation syndrome (MCAS). Anecdotally and based on some research, mostly in countries other than the US due to better surveillance, there’s evidence that treating MCAS during acute covid-19 infections may reduce the risk of long-covid. However, the CDC’s June 2021 interim guidance does not define, describe nor explain how to diagnose/treat MCAS.

Because research on how to treat covid-19 and long-covid is ongoing and there now are interim but not yet final “evidenced-based” standards for care, the contents in this blog post are, in relation to acute covid-19 and long-covid, not (yet) considered final, official “evidence-based” practices.

A PCP/gerontologist told me his son, a Harvard Medical School graduate who began his career as a pulmonologist at Kaiser Permanente when the the pandemic began, has been getting much better outcomes since they began to treat MCAS in covid-19 patients among other approaches to rein in the body’s over-functioning immune system. Also, I’ve read that medical staff in some of the better hospitals have been using H1 and H2 inhibitors and mast cell stabilizers to treat covid-19, resulting in better outcomes.

As I’ve been seeing patients for case management as well as psychotherapy, I’ve observed that many PCPs and specialists are not treating MCAS nor referring patients who have covid-19 or long-covid to the relatively few MCAS experts.

The other links below have been authored by and/or feature the world’s most prominent MCAS expert researcher/clinicians. Some healthcare professionals have been dismissing patients presenting with long-covid symptoms (e.g., fatigue, brain fog and other dysautonomia — symptoms caused at least in part by immune system-induced inflammation of the central nervous system) as being due to psychiatric conditions when, in fact, there actually are very obvious and expected reasons for and indications of an immune-related, physical aka physiological causes for those symptoms that can easily be treated if only doctors and other health care professionals knew how to do so. Thus, the need and reason for this blog post – to share the info by the CDC plus the world’s MCAS experts with PCPs and specialists of all kinds since mast cells are part of the immune system and, therefore, exist in all of the body’s tissues.

Please share this blog post with your PCP and other health care professionals via their portals and/or email. Thank you!

Translating research to practice always takes a lot longer than patients and doctors would like. Now, at the beginning of year three into the COVID-19 pandemic, patients still can’t passively assume their primary care physicians (PCPs) and specialists have all of the information that they need to treat COVID-19 and/or Long-COVID. Nor can they assume that their doctors have had time to access the available research from credible research/medical experts, journals and other sources to learn how to more safely/effectively treat their patients. Therefore, it’s up to patients to help make that happen!

Thankfully, the Centers for Disease Control (CDC) issued interim guidance in June 2021, including to treat mast cell activation syndrome (MCAS). However, the CDC’s interim guidance didn’t include any guidance on what MCAS is or how to treat it. So, in the carefully vetted links below, here’s that missing information.

For several years, studies published in credible medical and research journals have shown how to identify, diagnose and treat MCAS. Dysautonomia, more commonly diagnosed as chronic fatigue syndrome/ME and/or fibromylagia, is a rarely accurately diagnosed condition that’s very common during a COVID-19 infection and Long-COVID. However, medical schools spend approximately one minute educating physicians on mast cells, which exist in all of the body’s tissues as part of the immune system. COVID-19, because it’s such a new virus in humans, inevitably triggers MCAS that causes inflammation and, in some patients, persists as part of Long-COVID.

Despite the pandemic being 2+ years old, most doctors still know nothing about MCAS. Until leaders involved in the newly-funded COVID-19 and Long-COVID research have had time to sort out the details, it’s up to patients to educate their doctors. How can patients do this? Send the carefully vetted links (see below) of relevant research/medical journal articles and other information from highly credible sources via your doctors’ portals, email, fax, etc. Patients also can advocate for their doctors’ professional associations to provide them with this much needed continuing medical education.

Here are links to the CDC’s interim guidance, a blog post by one of world’s expert researchers/clinicians that’s the most comprehensive and succinct resource I’ve found so far, and medical/research journal articles and news articles from relevant and very credible sources that patients should share with their doctors, nurse practitioners and physician assistants ASAP — i.e., Don’t wait until you get COVID! Please, feel free to copy and paste the sources below to send to your healthcare providers via portal/email. That’s why I wrote this blog post!

Be/stay well!

For healthcare professionals —

“Management of Post-COVID Conditions — Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance,” June 14, 2021, US Centers for Disease Control.

“Mast cell activation symptoms are prevalent in Long-COVID,” Weinstock, Leonard B., Brook, Jill B., Walters, Arthur S., Goris, Ashleigh, Afrin, Lawrence, B., Molderings, Gerhard J., International Journal of Infectious Diseases, September 23, 2021.

Existing antihistamine drugs show effectiveness against COVID-19 virus in cell testing

Afrin, Lawrence B., Weinstock, Leonard B. & Molderings, Gerhard. J. “Covid-19 hyperinflammation and post covid-19 illness may be rooted in mast cell activation syndrome.” International Journal of Infectious Disease, 2020 Nov; 100: 327-332.

“Study: Long-Covid Impacts At Least 50 Percent of Those Infected,” News & Guts, 11/2021, with links to medical journal and Washington Post articles presenting more details.

Theoharides, Theoharis C., Cholevas, Christos, Polyzoidis, Konstantinos and Politis, Antonios. “Long-COVID syndrome-associated brain fog and chemo-fog: Luteolin to the rescue.” Biofactors. 2021 Mar-Apr; 47(2): 232–241.Published online 2021 Apr 12. 

For both patients and healthcare professionals

Study identifies those most at risk of long COVID

New theory: What causes severe COVID and long haul symptoms? One theory gaining ground links a more commonly than previously thought immune disorder called Mast Cell Activation Syndrome/Disorder (MCAS/MCAD) with severe COVID-19.

“The Role of MCAS in Long Covid | With World Leading Specialist Dr. Lawrence Afrin,” 2/9/21, (31 min. 5 seconds). The biological mechanisms of Long Covid are still somewhat of a mystery. But as we dig into the jigsaw looking for the pieces, one of the largest we’ve found is Mast Cell Activation Syndrome. In this wide ranging interview with one of the world’s leading specialists in the field, Dr Lawrence Afrin, he sheds light on the presentation, pathophysiology and treatment of the condition, as well as its complexity.

Stomach acid & heartburn drugs linked with COVID-19 outcomes.

Anne Maitland MD, PhD, Assistant Clinical Professor, Mt. Sinai Hospital, NYC, NY (one of the 1st long-covid treatment/research centers), “Living with Mast Cell Activation Syndrome,” 8/3/18, Baltimore: The Ehlers-Danlos Society Global Learning Conference.

Inflammatory Biomarkers in POTS Patients – Blair Grubb MD, Bobby Jones Chiari & Syringomyelia Foundation Annual Gala, 11/19/2021. Describes the role of autoimmunity, including MCAS, in dysautonomia and how to treat it, including recent innovations.

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