Even though the world’s attention is on COVID-19, BHC’s continued commitment to clinical care, research and education for our ME/CFS and FM community remains unwavering. Because our community’s well-being is central to all we do, we have compiled a list of resources and education aimed at keeping you informed and prepared during this difficult time.
References for those with Chronic Illness
The information on this page is not intended to serve as, nor replace, the advisement of your direct medical care team.
Please remember that the pandemic, vaccination advice, COVID-19 interventions, and post-viral care of COVID-19 remain an evolving situation for healthy individuals, as well as those with chronic illnesses and pre-existing conditions.
Should I get the Vaccine?
Ultimately, this is an individualized, patient-specific choice that should be made with your medical care team taking into account past vaccination experiences, the status of your current health, and underlying or active health conditions/diseases.
The ongoing mutation of the SARS CoV-2 virus has made the current strains more transmittable, and with a higher replication rate once infected-meaning the rate of impact is high with these more aggressive strains. It is advised that all who are healthy enough to receive the vaccine, get vaccinated. These FDA approved vaccines have been shown to lessen the severity and mortality rates in those who contract SARS CoV-2 and its variants.
As with previous strains, limiting public exposure, practicing good hand hygiene, wearing a mask, and implementing other preventive measures are the best ways to limit your likelihood of catching COVID-19.
- Vulnerable populations, and their social network, should consider getting the vaccine to lessen the spread and impact of the virus.
- In general, the people who should be most cautious are those who have previously had allergic reactions to vaccines or are prone to severe allergic reactions in general.
- If you have known or suspected mast cell activation syndrome (MCAS), consider prophylactically treating with H1 and H2 over-the-counter inhibitors. Take 48 hours before (following administration instructions on the label) and continue to take until the immune response dies down.
- If you decide to get the vaccine, be rested and stable prior to receiving the vaccine, and plan on resting/relaxing for at least 72 hours afterward.
- Do not get the vaccine during a crash or flare.
- Supportive care will include anything you usually do for flu symptoms, PEM, allergy flares, worsened orthostatic intolerance, etc.
- If anything, including a vaccine, makes you sick enough that you are unable to maintain adequate fluids and nutrition, or results in fluid and electrolyte losses (sweating, diarrhea, etc), it is always appropriate to seek IV fluids as a primary intervention.
Resources on the COVID-19 Vaccine
- Health Rising: ME/CFS and the Coronavirus Vaccine: Is There a Better Way (July 2021)
- Key things to know about the COVID-19 vaccine (CDC, October 2021)
- COVID-19 Vaccine Guidance (Mayo Clinic, 2021)
- COVID-19 Vaccine Safety (animated video, CDC, April 2021)
- US COVID-19 Map-What the trends mean for you (Mayo Clinic, up-to-date tracking)
- Dr. Nancy Klimas: To Vaccinate or Not with ME/CFS
What if I get COVID-19?
- If you do have a positive test: focus on managing the symptoms that flare.
- Stay in close contact with your medical providers about your condition.
- Consider having a pulsoximeter at home to monitor for hypoxemia, a sign of severe lung involvement.
- If you are so ill that you are unable to maintain hydration, take routine medications, or manage symptoms, seek medical attention!
- Should I request steroids? Using steroids is a very fine balancing act. In general, we don’t want to introduce steroids too early in the viral infection and compromise the normal immune response; but steroids may play an important role as the immune response ramps up, sometimes excessively.
Care Considerations for those with ME/CFS & FM
- Medical Considerations Letter — In the event you become acutely ill, the Medical Care Considerations Letter serves as a guiding resource for outside medical care intervention. The intent of this letter is to provide care professionals with further information about your illness of ME/CFS and/or severe FM to assist them with their medical intervention decisions.
- Treating COVID-19 in patients with ME/CFS & Severe FM- this informational pamphlet created and produced by the Whittemore Peterson Institute includes valuable intervention and support guidance for medical professionals who may be serving ME/CFS and/or severe FM patients with COVID-19. Content provided by Dr. Lucinda Bateman.
- COVID-19 and ME/CFS/FM Frequently Asked Questions: Drs. Bateman and Yellman answer specific questions about COVID-19 as it relates to ME/CFS/FM.
September 27, 2021: CDC Webinar on Booster Vaccines (recording)- details outlined below.
Summary of recent changes (last updated September 27, 2021):
- New section on Considerations for use of a Pfizer-BioNTech COVID-19 vaccine booster dose after completion of a Pfizer-BioNTech primary vaccine series.
- COVID-19 vaccination is recommended for everyone aged 12 years and older in the United States for the prevention of coronavirus disease 2019 (COVID-19).
- COVID-19 vaccines currently approved or authorized by FDA are highly effective in preventing serious outcomes of COVID-19, including severe disease, hospitalization, and death.
- Available evidence suggests vaccines offer protection against known variants, including the Delta variant (B.1.617.2), particularly against hospitalization and death. The Delta variant, currently the predominant SARS-CoV-2 variant in the United States, is associated with increased transmissibility.
- Efforts to maximize the proportion of people in the United States who are fully vaccinated against COVID-19 remain critical to ending the COVID-19 pandemic.
- ACIP has recommended the FDA-approved Pfizer-BioNTech (COMIRNATY) COVID-19 Vaccine for use in persons aged ≥16 years.
- ACIP has issued interim recommendations under Emergency Use Authorization (EUA) for the use of:
- Pfizer-BioNTech COVID-19 vaccine in persons aged 12–15 years
- Moderna COVID-19 vaccine in persons aged ≥18 years
- Janssen (Johnson & Johnson) COVID-19 vaccine in persons aged ≥18 years
- These clinical considerations provide additional information to healthcare professionals and public health officials on use of COVID-19 vaccines.
Interim recommendation for use of a single Pfizer-BioNTech COVID-19 vaccine booster dose after completion of a Pfizer-BioNTech primary vaccine series.
On September 22, 2021, the U.S. Food and Drug Administration (FDA) amended the emergency use authorization (EUA) for the Pfizer-BioNTech COVID-19 vaccine to allow for use of a single booster dose, to be administered at least 6 months after completion of the primary series in specific populations. The EUA applies only to the Pfizer-BioNTech COVID-19 vaccine.
On September 23, 2021, CDC’s independent Advisory Committee on Immunization Practices (ACIP) recommended certain populations receive a booster dose of Pfizer-BioNTech’s COVID-19 vaccine at least six months after the completion of their Pfizer-BioNTech primary vaccine series. On September 24, 2021 CDC released interim booster recommendations.
CDC recommends that the following groups should receive a booster dose of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after completing their Pfizer-BioNTech primary vaccine series:
- People aged 65 years and older
- Residents aged 18 years and older in long-term care settings
- People aged 50–64 years with underlying medical conditions
CDC recommends that a booster dose of Pfizer-BioNTech’s COVID-19 vaccine should be made available so that the following groups may receive a booster dose of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after completing their Pfizer-BioNTech primary vaccine series, based on their individual benefits and risks:
- People aged 18–49 years with underlying medical conditions
- People aged 18–64 years at increased risk for SARS-CoV-2 exposure and transmission because of occupational or institutional setting
During its discussions, ACIP highlighted the following:
- High and equitable COVID-19 vaccination coverage with a COVID-19 primary vaccine series remains the highest priority and is fundamental to reducing COVID-related morbidity and mortality.
- COVID-19 vaccines currently approved or authorized in the United States remain effective against severe disease, hospitalization, and death. Fully vaccinated persons of all ages are much less likely than unvaccinated persons to become infected with SARS-CoV-2 and to require hospitalization.
- COVID-19 vaccine recommendations may be updated, as needed, to reflect changes in U.S. COVID-19 disease trends, new information on COVID-19 vaccine effectiveness and safety, and updated benefit-risk analyses.
- There is urgency to provide guidance on the use of a booster dose for people who received a primary vaccine series with Moderna and Janssen COVID-19 vaccines.
Many of the people who are now eligible to receive a booster shot received their initial vaccine early in the vaccination program and will benefit from additional protection. With the Delta variant’s dominance as the circulating strain and cases of COVID-19 increasing significantly across the United States, a booster shot will help strengthen protection against severe disease in those populations who are at high-risk for exposure to COVID-19 or the complications from severe disease.
More details on eligibility: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/booster-shot.html
Advice: We do not have any ME/CFS/Long COVID/FM/OI evidence-based suggestions at this time due to the evolving situation. You need to look at your own patient-specific risk and work with your medical team.
Considerations prior to receiving the booster:
- Prophylactically treat MCAS: H1 (Benadryl, Allegra,etc.) and H2 (Pepcid, Famotidine/Zantac 360, etc.) Take for 48 hours before, and continue until the immune response dies down.
- Avoid getting the vaccine during a crash/PEM/flare episode.
- Be rested and well hydrated before/after.
- Allow time after vaccine to rest/recover.
From the CDC:
- The Delta variant is more contagious: The Delta variant is highly contagious, more than 2x as contagious as previous variants.
- Some data suggest the Delta variant might cause more severe illness than previous variants in unvaccinated people. In two different studies from Canada and Scotland, patients infected with the Delta variant were more likely to be hospitalized than patients infected with Alpha or the original virus that causes COVID-19. Even so, the vast majority of hospitalization and death caused by COVID-19 are in unvaccinated people.
- Unvaccinated people remain the greatest concern: The greatest risk of transmission is among unvaccinated people who are much more likely to get infected, and therefore transmit the virus. Fully vaccinated people get COVID-19 (known as breakthrough infections) less often than unvaccinated people. People infected with the Delta variant, including fully vaccinated people with symptomatic breakthrough infections, can transmit the virus to others. CDC is continuing to assess data on whether fully vaccinated people with asymptomatic breakthrough infections can transmit the virus.
- Fully vaccinated people with Delta variant breakthrough infections can spread the virus to others. However, vaccinated people appear to spread the virus for a shorter time: For prior variants, lower amounts of viral genetic material were found in samples taken from fully vaccinated people who had breakthrough infections than from unvaccinated people with COVID-19. For people infected with the Delta variant, similar amounts of viral genetic material have been found among both unvaccinated and fully vaccinated people. However, like prior variants, the amount of viral genetic material may go down faster in fully vaccinated people when compared to unvaccinated people. This means fully vaccinated people will likely spread the virus for less time than unvaccinated people.
What we know about the effectiveness of vaccines with the Delta Variant (CDC).
COVID-19 vaccines are effective against severe disease and death from variants of the virus that causes COVID-19 currently circulating in the United States, including the Delta variant.
- Infections happen in only a small proportion of people who are fully vaccinated, even with the Delta variant. When these infections occur among vaccinated people, they tend to be mild.
- If you are fully vaccinated and become infected with the Delta variant, you might be able to spread the virus to others.
People with weakened immune systems, including people who take immunosuppressive medications, may not be protected even if fully vaccinated.
Personal Guidance and Decision Making
- Limit COVID-19 exposure and adhere to the CDC’s recommended precautions.
- Be diligent in your adherence to practicing good hygiene.
- Testing does not equate to treatment. A positive test can only lead to medical advice and prioritization of care based on illness severity. Currently, most treatment is “supportive.”
- More aggressive interventions are only needed if symptoms worsen to the point that hospital admission is required for fluids, oxygen, and possibly ICU admission with likelihood of intubation and ventilation.
- In emergency situations individuals with ME/CFS/FM should engage in the highest quality medical interventions for the respective emergency medical condition. If you get sick, don’t try to manage COVID-19 for your doctors.
- Drug treatment is rapidly becoming more available for the most severely ill with COVID-19. These treatments might lead to improvement for ME/CFS.
- Advance Directives: Everyone, not just those with ME/CFS/FM, should document end-of-life wishes on paper regarding aggressive medical care in a life-threatening situation. Discuss with family and medical professionals as needed. See planning document below.
- Coping with Anxiety Related to COVID-19
- Things to Know about the COVID-19 Pandemic (CDC)
- CoronaCentral (compilation of published journals & papers)
- COVID-19 and Disabilities: Inclusive Disaster Planning is Crucial for Vulnerable Populations (The National Academies of Sciences Engineering Medicine)
- Johns Hopkins University of Medicine COVID-19 Resources Page
- National Institute of Health COVID-19 Research
- Advance Care Planning: The Advance Care Planning document provides guidance for establishing advanced-care-directives and POLST documents.