Vax Me

There is nothing I want more than to be vaccinated against COVID-19. I know many people in the chronic illness community, particularly people with ME and/or mast cell activation syndrome, are apprehensive about the COVID-19 vaccines. I feel the opposite: I am enthusiastic about these vaccines and can’t wait to get one.

Image credit: Johns Hopkins Medicine.
Important: My opinion is not a substitute for medical advice. Some ME specialists have issued statements about whether/how to take the vaccine, and it is best to discuss the vaccines and your individual risks with your doctor. If you are interested in an overview of COVID-19 vaccines, Caroline Christian wrote a great article that explains how they work.

As of this writing, two vaccines have been approved in the United States and both work amazingly well. The New York Times reported that of the 32,000 people who received the vaccine in the Moderna and Pfizer trials, only ONE person developed severe COVID-19, and that single case did not require hospitalization. Both vaccines were about 95% effective at preventing COVID-19 disease of any severity at all.

That level of protection is the main reason I want a vaccine as soon as possible. I am terrified of COVID-19 disease. Early in the pandemic, I read this article by a deputy editor of the New York Times about caring for her husband when he had COVID-19. It took me back to the first few days after my husband had a stroke, reminding me of the fear and level of effort that came with caring for him. My husband and I both have high-risk conditions, so if we get COVID-19 there is significant potential for it to be severe disease. The COVID-19 vaccines will protect us from that.

The potential side effects of the vaccines are not a deterrent to me, despite the difficulty I have had with vaccine side effects in the past. While the flu vaccine makes me feel a little crummy, I was crashed for days after the second dose of Shingrix. On the other hand, I just received the pneumococcal vaccine and had no side effects at all. These vaccines all use different platforms or mechanisms to provoke an immune response, so a bad reaction to one vaccine doesn’t mean you’ll have the same reaction to all vaccines. I’m still mentally prepared for the COVID-19 vaccine to hit me hard, but crashing for a few days pales in comparison to the potential seriousness of COVID-19 itself. Jen Brea became bedbound for months after COVID-19, so the risk of vaccine side effects are worth it to me.

Beyond typical vaccine side effects, there is a risk of severe allergic reaction to the vaccines. This raises special concerns for people with mast cell disease, including people (like me) with mast cell activation syndrome. There is little documented evidence of whether people with mast cell disease have an increased risk of side effects or complications from the vaccine. The Mast Cell Disease Society recommends pre-medicating with an H1 blocker one hour prior to vaccination. The Center for Complex Diseases concluded “that the risk:benefit ratio of those with severe allergies still favors getting the vaccine vs. taking one’s chances with getting Covid19.” I will definitely do what I can to mitigate any allergic reaction or symptom exacerbation.

Here’s how I balance my risks and benefits: I am at high-risk for severe COVID-19 due to underlying conditions (in addition to ME). The Moderna and Pfizer-BioNTech vaccines provide 95% protection from COVID-19, and nearly complete protection against severe disease. Neither my risk of side effects nor my mast cell activation syndrome are so significant that they outweigh the benefit of being protected from COVID-19 disease.

I know many people with ME who are taking a wait-and-see approach to the vaccine, and they all have good reasons for doing so. I do not intend to criticize anyone for their choices. For me, though, the wait is not worth the risk.

First, we don’t know if a vaccinated person could still become infected and possibly transmit the virus to others, including unvaccinated members of their households. There hasn’t been much reporting on what happens when only some people in a household have been vaccinated, and I don’t know if the vaccine clinical trials collected data on household contacts to see if there was any difference in the rate of infection.

Second, we might not be able to rely on herd immunity for protection. Herd immunity is the indirect protection from an infectious disease that comes when a sufficient percentage of a population is immune. At the right level of group immunity, the pathogen can’t circulate well enough in the population to spread to the people without individual immunity.

How many people need to be immune in order to reach herd immunity? It’s different for every virus. Measles requires 95% population immunity, while polio requires about 80%. Early in the COVID-19 pandemic, it was estimated that herd immunity could be reached when 70% of the population was immune. However, no one knows for certain, according to both WHO and CDC. NIH Director Dr. Francis Collins recently estimated that 80-85% immunization will be needed.

This is a problem. The agonizingly slow rollout of the vaccines in the United States means that even under the best projection, we won’t be able to immunize 85% of our population until the fall at least. And not everyone is eager to take the vaccine. Vaccine resistance has also become a political position, such as with the small group of anti-vaccine and far right protesters who temporarily shut down a community vaccination site in Los Angeles. Finally, we don’t know how emerging variants of SARS-CoV-2 will complicate vaccine-induced immunity. The Washington Post quoted Dr. Christopher Murray of the Institute for Health Metrics and Evaluation as saying that “the prospect of herd immunity, at least before next winter, [is] much less likely.”

If my choice is to stay in lock down for at least another year or to get the vaccine, I am getting that vaccine. I need to hug my Dad. I need to visit with friends indoors. I need to get back the small amount of normalcy that I had in my housebound/disabled life. I will gladly continue to adhere to all prevention measures like masking, etc, of course. I just want to be able to interact with the people I love.

The bad news is that while I am currently eligible for the vaccine in my state, there is no vaccine to be had. My husband and I are on at least five waiting lists. I signed up for our county’s waiting list on the second day it was open, and there are tens of thousands of people ahead of us in line. I have twenty websites bookmarked and I check them at least once a day to see if other providers have opened waiting lists. Our county has a population of 850,000, a quarter of which is currently eligible, but the county has been getting less than 5,000 doses per week. The federal government has promised to increase supply soon, and the potential approval of additional vaccines would help tremendously. Nevertheless, I have a feeling we are going to be waiting a long, long time.

I understand that not everyone is or can be as anxious to get vaccinated as I am. Yet for most people, the vaccines are safe and highly effective. I am READY. Please, somebody vax me!

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10 Responses to Vax Me

  1. 1. I have ME/CFS, have had the first shot (I’m over 70), and will receive the second this Thursday, if all goes according to plan. I had no doubts, and recommend everyone who is offered the shot take it.

    2. It will be a lot shorter than you think, regardless of where you live. The grownups are running the show again. Be careful, be hopeful.

    3. Just getting the first shot changes your perspective enormously – hope you get it soon. We are all tired of living in abject fear.

  2. cort johnson says:

    I am ready too. I want this over. The Health Rising polls strongly suggest that most people are doing fine after the first shot. We haven’t had many people take the second shot – which is more likely to cause a reaction but so far, there too, the side effects seem acceptable.

    The more people that get vaccinated the less opportunity the virus has to spread and mutate into something much worse.

    Vax me!

  3. Pat says:

    Even though I had an unusual reaction to my first Covid -19
    Vaccine ( blood pressure shot up to 202/96 and ended up in the ER)
    I will take my second vaccine Feb. 20)
    Discussed with my ME specialist and agreed to warn Medical while waiting for any reaction.
    Im hoping second time is easy.
    The reaction didn’t kill me—but Covid could!!

    • Jennie Spotila says:

      Wow I hadn’t heard of the BP reaction as a possibility. I’m glad you’ll get the second dose because you’re right about the risk of covid!!

  4. Nancy says:

    I too am eager to get the vaccine. In our county, they are only vaccinating health workers and 75 and older and they don’t have nearly enough vaccine to cover those groups. Unfortunately, the botched rollout could’ve been avoided for the most part. Alas, all we can do is hunker down some more. I was told by my allergist (for MCAS) to premedicate with an H1 blocker, bring my EpiPen, and to stay at least 30 minutes.
    Keeping my fingers crossed that you and David will be able to get yours soon. Thank you for all valuable information Jennie!

    • Jennie Spotila says:

      Your allergist is 100% correct!! And I just keep telling myself that there will be enough vaccine. Maybe not today but soon.

  5. Emma says:

    I have had both doses of the Pfizer vaccine (I’m a lab tech in a hospital) and while it certainly didn’t help my current crash, it didn’t make it especially worse either. Felt like garbage for a few days and then slowly bounced back. Making the appointment and getting the first dose was easy peasy. Getting the second dose was…frustrating. The supply ran out after the first dose which they communicated by email, but since I’m on FMLA and stuck at home, I can’t easily access my email (due to HIPAA and PHI) so I didn’t know it had been rescheduled, twice! Wasted what little energy I had to go to work and get it, only to be told to come back the next day. No phone number to call and reschedule, so I had to use work computers to send an email to the vaccine program admin. Ended up only getting it a few days after it was originally scheduled for but still, what a mess.

    • Jennie Spotila says:

      The best part is that you did get it. But how incredibly frustrating the process was for you! I expected hiccups in the rollout but it seems like we could have done better than this. I worry that the obstacles are contributing to vaccine hesitancy. But every inoculation is a step in the right direction!

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