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.
A message from Dr. Bateman:
We [the world] certainly need COVID-19 vaccines desperately and everyone who is healthy enough for the vaccine should get vaccinated, starting with those at highest risk of COVID exposure. This includes healthy family members of vulnerable people. For the ME/CFS/FM population, my advice is to stay safely quarantined and wait a couple of months while the vaccine is distributed and broadly administered. Because of the large numbers and close monitoring, we should know fairly quickly how people do with the vaccines. This advice will apply as each new branded vaccine is approved and rolled out. 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 decide to get the vaccine, be rested and stable prior to the vaccine, and plan on resting/relaxing for at least 72 hours afterward. 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.
See BHC Vaccine Guide for more information.
Resources on the COVID-19 Vaccine
- Center for Complex Diseases: COVID-19 Vaccine Statement (Drs. Curtin, Chheda, Kaufman)
- Dr. Nancy Klimas: To Vaccinate or Not with ME/CFS
- Health Rising: ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine-Plus the Vaccine Polls
- NIH COVID-19 Research Behind the Scenes
- Pfizer’s COVID-19 Vaccine Ingredient List: What to Know, According to Experts
- COVID-19 Vaccination (CDC)
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!
- The BHC Medical Considerations Letter can help medical providers understand how to take ME/CFS into account in addressing COVID symptoms (see below).
- 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.
- 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.
Personal Guidance and Decision Making
- Shelter at home. Limit your exposure to others 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, 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.
- 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
- Coping with Anxiety Related to COVID-19: Timothy Weymann, LCSW, discusses ways of shaping your thoughts surrounding anxiety related to COVID-19.
- Advance Care Planning: The Advance Care Planning document provides guidance for establishing advanced-care-directives and POLST documents.
Long COVID Resources
Bateman Horne Center joined 49 new partners in the fight to return millions of Americans to health. The Long COVID Alliance launched by Solve ME/CFS Initiative, is a network of patient-advocates, scientists, disease and public health experts, and drug developers, who have joined together to leverage our collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-infectious illness.
These resources have been developed for those with ME/CFS, FM and related conditions. However, they may aid those experiencing Long COVID symptoms as they work with their care team on assessment and ongoing management options.
Medical Provider Resources
Post-Viral Illness & COVID-19
- Long COVID: Doctors must assess and investigate patients properly (The BMJ)
- University of Utah Health Project ECHO COVID-19 Series (57 min video)
While the following two videos are geared towards medical professionals, patients and their families have found them to be an insightful tool to share with their providers when assessing/managing OI.
Long COVID Patient Resources
The following resources are not intended to serve as, or replace, the medical care provided by the healthcare team(s) serving those with Long COVID.
- Utah Long Hauler's and BHC webinar (57 min video)
- US ME/CFS Clinician Coalition COVID-19 Long Hauler Considerations Letter
- Pacing & Management Guide (MEAction)
Symptom Specific Resources:
Post-COVID Research, Journals, Publications
- Post COVID-19 Fatigue, Post/Long COVID-19 Syndromes & Post-COVID ME/CFS (Dr. Charles Shepherd)
- How Science Beat the Virus (The Atlantic)
- Sure Signs You Have Long COVID, According to Dr. Fauci
- CoronaCentral (Published & Preprint Papers)