Should people with ME/CFS, FM and Environmental Sensitivities get the COVID vaccine?
With very few exceptions - YES.
To decide on any medical intervention, you need to weigh the benefits and the risks. Here is the data as of the week of March 8, 2021.
The benefit/risk ratio is decidedly in favor of being vaccinated. The rationale for vaccination is even stronger if you want to be out in society, around people who are or want to be in contact with elderly friends or relatives.
What are the very few exceptions? If you have had an anaphylactic reaction to any of the ingredients of a vaccine (see lists below), you should not take it without consulting your physician. If you are on a strong immune suppressant such as some cancer chemotherapies or rituximab you should discuss the timing of the vaccine with your prescribing doctor to ensure it is given at a time when you are able to mount an immune response. Otherwise, it won’t help you.
Which vaccines are the most effective against COVID including the variants?
Pfizer and Moderna (mRNA in lipid nanoparticles)
The Pfizer vaccine is the most tested because of careful study of the entire population of Israel. It is assumed the Moderna vaccine will have similar results but that has yet to be proven.
AstraZeneca (Monkey adenovirus carrying DNA of spike protein)
Johnson and Johnson (Human inactivated adenovirus carrying DNA of spike protein)
Novavax (lab grown spike proteins in lipid nanoparticles with adjuvant)
What is in the vaccines?
You will see from the list of ingredients below that the two mRNA vaccines have many more difficult to pronounce chemical ingredients. The ingredients thought to be causing allergic reactions are PEG-2000 and polysorbate 80 – found in all the approved vaccines so far.
ALC-0315 = ((4-hydroxybutyl)azanediyl)bis(hexane-6,1-diyl)bis(2-hexyldecanoate) ·ALC-0159 = 2-[( glycol)-2000]-N,N-ditetradecylacetamide ·1,2-distearoyl-sn-glycero-3-phosphocholine·cholesterol·dibasic sodium phosphate dihydrate·monobasic potassium phosphate·potassium chloride·sodium chloride·sucrose·water for injection
1,2-distearoyl-sn-glycero-3-phosphocholine (DSPC) ·Acetic acid·Cholesterol·Lipid SM-102·PEG2000 DMG1,2-dimyristoyl-rac-glycerol,methoxy-polyethyleneglycol·Sodium acetatetrihydrate·Sucrose·Trometamol ·Trometamol hydrochloride·Water for injection
Disodium edetate dihydrate (EDTA) ·Ethanol·L-Histidine·L-Histidine hydrochloride monohydrate·Magnesium chloride hexahydrate·Polysorbate 80·Sodium chloride·Sucrose·Water for injection
Janssen (Johnson and Johnson)
2-hydroxypropyl-β-cyclodextrin (HBCD)·citric acid monohydrate·ethanol·hydrochloric acid·polysorbate-80·sodium chloride·sodium hydroxide·trisodium citrate dehydrate·water for injection
Polysorbate 80·matrix M1 adjuvant
What are the expected and possible side effects of the COVID vaccines in the general population?
Health Canada keeps a log of all reported vaccine side effects. At least half of people will have mild reactions such as soreness at the injection site and fatigue or malaise especially after the second injection. Few of these people will report these expected reactions to Health Canada. Most severe reactions requiring medical care will be reported so the data on serious reactions is likely accurate. https://health-infobase.canada.ca/covid-19/vaccine-safety/summary.html
As of March 5 ,2021, a total of 2,255,174 vaccine doses have been administered in Canada. Any adverse events (side effects) have been reported by 1,923 people. That’s about 1/1000 vaccinated individuals.
Are people with ME/CFS more likely to have an adverse reaction from the COVID vaccines?
ME/CFS is a disease which affects the immune system. As I mention in my blog post about the flu vaccine https://www.eleanorsteinmd.ca/blog/search?q=vaccine the immune status of people with ME/CFS is variable. Many people, especially early in the illness course have overactive immune systems. These individuals are likely to have a strong flu-like reaction to any vaccine. ME/CFS is often associated with impaired immune function especially of NK cells and T cells. These are not the primary targets of vaccines but nevertheless, these individuals may have a less effective immune response to vaccines. Since the immune testing to see which of these groups you may fall into is not available, your best predictor of response to the COVID vaccine may be response to previous vaccines you have taken like the flu vaccine. ME expert Dr. Nancy Klimas warns people with ME/CFS to expect to be harder hit by the vaccine that others due to immune activation She has recommendations of supplements which may ease the reaction severity especially for people with MCAS.
Cort Johnson’s Health Rising blog survey has been collecting information about the vaccine experience of people with ME/CFS and FM. When you get vaccinated please consider adding your experience to the growing database https://www.healthrising.org/blog/2021/01/28/coronavirus-vaccine-effects-chronic-fatigue-syndrome-fibromyalgia/
Here is what Cort's followers report. Most people tolerate the first Pfizer/Moderna vaccination shots easily with about 2/3rds reporting mild or non-existent symptoms. Many more people reported experiencing more severe symptoms with the AstraZeneca vaccine (47% reported moderate symptoms and 31% reported severe symptoms). Seventy-plus percent of people report being fully recovered from the first injection of these three vaccines within a week.
The second Pfizer/Moderna vaccination shot is producing more severe symptoms though over 70% report full recovery within a week. Too few people reported on the side effects from the second AstraZeneca shot to calculate percentages. Four to nine percent of people taking the second dose of the Pfizer or Moderna vaccine reported having symptoms a month later.
The same survey reports that people with ME/CFS/FM report that recovery from actually having the virus is more difficult. Approximately forty percent of ME/CFS/FM patients who reported they thought they’d come down with the coronavirus reported not being back to baseline three months later.
So although there are some people experiencing long term side effects possibly related to the vaccine, far more experience long term effects from COVID-19.
Are people with MCS more likely to have an adverse reaction from the COVID vaccines?
Except in the case of people with Mast Cell Activation Syndrome (MCAS), MCS is not a disorder of immune activation. Therefore, people with MCS are not at danger of serious or life- threatening reaction to vaccines. They may react more than the average person to the ingredients of the vaccine. These ingredients are found in tiny amounts and in most cases the reaction will pass quickly. It is a small price to pay for the health benefits of the vaccine. The American College of Asthma, Allergy and Immunology states that people with common allergies to medications, foods, inhalants, insects and latex are no more likely than the general public to have an allergic reaction to the mRNA COVID-19 vaccines. https://acaai.org/news/acaai-updates-guidance-risk-allergic-reactions-covid-19-vaccines
Are people with ME/CFS immune compromised? Should they get vaccine priority?
Many people with ME/CFS believe they are immune compromised, especially those who have a long history of catching more infections than others and getting more severely ill than others when they do catch something. While this may be true for some, the immune functions that are often impacted in people with ME/CFS are not measured in the Canadian health care system. For this reason, it is unlikely that ME/CFS will be considered a health condition which puts people at higher risk leading to early immunization. In Alberta, the list of compromising medical conditions was released today. https://www.alberta.ca/assets/documents/covid19-vaccine-phase-2B-eligibility-fact-sheet.pdf
So, all this being said, you may be wondering what am I planning to do?
Given the possibility of serious side effects from some batches of the Astra Zeneca vaccine (currently being offered to my age group) and the good track record of the mRNA vaccines, I am staying home and waiting until an mRNA vaccine is available to me.
Good luck with your vaccination experience.