When news about COVID-19 started spreading, one of Ben’s Friends moderators, Don Snyder, wasted no time in compiling and sharing as much information that may be useful for members.
Don became a community moderator seven years ago around the time when he was diagnosed with a Mast Cell Disorder. This condition causes overproduction of mast cells which, instead of protecting the person from diseases, overwhelms the body and causes different types of reactions including those that are fatal.
Even before the COVID-19 outbreak, Mast Cell patients have been careful in exposing themselves to potential risks in their environment including food, chemicals, smoke, and perfume among others.
Figure 1. Artist conception of a mast cell and surface receptors just looking for an antigen to trigger it to release histamine, heparin, prostaglandin, TNF, and cytokines.
Figure 2. Typical Mast Cell with receptors on the outside looking for an antibody or virus or medication to trigger it. Granules of preformed mediators stored on the inside looking for an external trigger to either leak a bit out or declare ware and degranulate and dump the whole load. When this happens enmass, we end up with anaphylaxis and many co-morbidities. Retrieved from “Mast Cells and Influenza A Virus: Association with Allergic Responses and Beyond,” by Amy Graham, Rachel Temple, and Joshua Obar, in https://tinyurl.com/ybspdh6s, May 2015, Retrieved May 14, 2020. Used under: Creative Commons Attribution 4.0 International.
Thus, the potential threat from COVID-19 is definitely something that Don cannot brush aside. He wanted to make sure the community was getting the latest and best information. Afterall, he has an extensive background in multidisciplinary research.
As a leading government research scientist, Don organized talent teams of the best and brightest scientists and engineers across industry, government agencies, and academia to provide foundational research and proof of concept technology demonstrations.
Here’s our short interview with Don about his work at Ben’s Friends during this pandemic.
What specific tasks have you been doing at Ben’s Friends in relation to COVID-19?
Mast cells are all throughout the body, starting as white blood cell progenitors and recruited to different parts from the GI tract, cardiovascular system, bone marrow, lungs, kidneys, liver, pancreas, and brain. So something like COVID-19 and the virulence of SARS CoV-2 was of high concern.
Right off the bat we attacked the problem in terms of what the virus means to our basic disease in terms of activation and comorbidities. What receptors that are critical in our reaction chain are also involved in the susceptibility and reaction to the virus?
This is the main question in the research.
Can you give more details on the specific topics that you research on?
Here are some questions we need to consider in relation to COVID-19:
- What medications do we take that either enable or inhibit viral endocytosis and reproduction?
- What do the medications being tried to inhibit viral reproduction, control runaway cytokine production and fluid accumulation, and all the others do to the delicate balance we try for years to achieve?
- What could we find out from SARS CoV-1, and H5N1, and MERS that would be, by analogy, representative of what we might expect from the SARS CoV-2 virus?
People with Mast Cell Disorders have been wearing masks almost all the time even before the pandemic. With COVID-19, masks are all the more important. One big question then was “how could we make, use, recycle masks?”
I dug out work from my previous life in counter-chemical/biowarfare and found the answers on how to decontaminate your own mask using steam.
I am currently back at it, working with colleagues on nonlinear prediction models, working backwards from death rate, to look at a sanity check on predicting true infection rates. We were saying weeks ago that the ‘official’ numbers and models were off by a 10 to 20X factor in infections.
Lately, I’m looking at prior research from several years ago where we evaluated a number of particularly nasty viruses and bacteria for both passive solar (UV-B) deactivation and active UV LED (UV-C) viral deactivation.
Since we work on our own, getting access to the latest research papers is a challenge. One task is to find a way for all of Ben’s Friends moderators to have access to the principal publishers through a community subscription to Open Athens or Shibboleth or similar library service.
Why do you think these COVID19-related tasks are important?
What we hear from the “Media” and “Professional Associations” as good advice for “Normal” people, isn’t always true for people with rare diseases. When your immune system is on hair trigger and you’re taking upwards of 20 to 30 meds a day, life isn’t ever normal.
Mast cells are the sentinels and traffic cops of the immune system. Besides being the armory of powerful chemicals that power the immune system, they are the traffic cops that recruit and direct other immune cells to the offending location to create inflammation and kill the offending bacteria or virus.
We found out that there are probable issues with Non-Steroidal Anti-inflammatories, IL-6 inhibitions from mast cell stabilizers like Quercetin may actually be a good thing, and found out that Hydroxychloroquine is also a powerful mast cell stabilizer.
Watching out for stroke and thrombolytic issues is a high priority due to concentrations of mast cells adjacent to blood vessels and in cardiac tissues.
We tried to canvas not just the basic disease, but also the pros and cons of all the arsenal of medications, early and late time mediator release, and inhibition of over eager immune systems making symptoms worse.
What we couldn’t and still can’t tell until all the data is in is whether Mast Cell Disorder patients fare better or worse with a primarily inflammation driven virus like CoV-2. Asthma and pulmonary edema is a primary example of the day-to-day mast cell driven swelling that we deal with along with ARDS from SEPSIS runaway reactions.
Any information you think the people should know about how COVID is affecting rare disease patients like people with Mast Cell Disorder?
As hyper-reactive immune patients we always live in isolation. Every trip to the store or doctor’s office, or dentist entails risk that we’ll be exposed to perfume, or smoke, or cleaning solvent, or “natural” essential oils and go into anaphylaxis, which is life threatening. Exposure to virulent pathogens just lights the rocket fuse, sending our immune systems into high gear.
On the other hand, we take massive amounts of medications and agonists to inhibit the immune system from reacting. Is that a good thing, or bad? For the virulent influenza we have established data and research. For these new viruses, not so much. For SARS CoV-1 there were only about 8,000 patients, much less for MERS. Out of sight-out of mind.
Also, getting the supplies and limited foods that we can tolerate is much more difficult than before. Visiting our physicians and the ER is now a big risk of infection, if we can get in at all.
Isolation is always bad, now it is ten times worse.
Although on the positive side, we rocked wearing N95 and N99 masks before most people even knew what one was. Going out in public now doesn’t draw the stares and comments as before.
Amy Graham, Rachel Temple, and Joshua Obar. (2015) “Mast Cells and Influenza A Virus: Association with Allergic Responses and Beyond,” by in https://www.researchgate.net/figure/Mast-cell-activation-in-response-to-viral-infection-Mast-cells-are-classically-known-for_fig1_277780530, Retrieved May 14, 2020. Used under: Creative Commons Attribution 4.0 International.