The ME/CFS Community and COVID-19January 13, 2021
We at Solve M.E. know that the ME/CFS community has always been well-informed, resilient, and far more experienced than the general population when it comes to taking extra precautions in order to protect one’s health. For years, people with ME/CFS have been working and doing advocacy from home, practicing physical distancing, and sometimes even practicing self-quarantining just to survive. With that understanding, this page is designed to provide the most current COVID-19 information that is specifically relevant to the ME/CFS community in hopes that it will add to our cumulative understanding of how to best maneuver these challenging times. Please check back for updates.
Are people with ME/CFS considered “high-risk” for COVID-19?
The CDC notes that people who are immunocompromised might be at an increased risk for severe illness. The Bateman Horne Center reports, “The immune dysregulation of ME/CFS/FM may reduce ability to fight viral infections. Additionally, the presence of chronic inflammation, allergies, asthma, mast-cell activation may pose additional risks.”
Because many people with ME/CFS are often immunocompromised, Solve M.E. fervently believes that people with ME/CFS should take the same precautions as a “high risk” population. For the safety of you and your loved ones, Solve M.E. strongly encourages people with ME/CFS and their caregivers to take every possible precaution to avoid exposure to the virus, including frequent handwashing, wearing masks in public, social distancing of 6ft/2m, and following your local guidance regarding gatherings outside your household.
How can I tell the difference between symptoms of ME/CFS, COVID-19, or the Flu / Common Cold?
Because some of the symptoms of ME/CFS, flu, cold, and COVID-19 can be similar, it may be hard to tell the difference between them based on symptoms alone, and testing may be needed to help confirm a diagnosis. Both ACUTE COVID-19 and Flu can have varying degrees of signs and symptoms, ranging from no symptoms (asymptomatic) to severe symptoms and death. Similarly, the symptoms of ME/CFS can vary in severity and frequency. It is common for people with ME/CFS to experience periods of improvement, periods of relapse, and “crashes” where symptoms worsen with a devastating impact to quality of life. Long Term COVID-19 is still evolving and more research is needed to further define this condition.
Here’s a chart of the most common symptoms of Cold, Flu, Acute COVID-19, Long Term COVID-19, and ME/CFS.
*Disabling Fatigue is also known as Post-Exertional Malaise (PEM)
Centers for Disease Control (CDC) terminology:
Rare = Most will not experience symptoms
Sometimes = Some people will experience symptoms
Intermittent = Symptoms will come and go
Common = Most patients report these symptoms
? = More research is needed, unclear at this time
Should I take the COVID-19 vaccine when it becomes available?
A message from Lucinda Bateman, MD (Bateman Horne Center):
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.
I have been asked this question dozens of times over the past week. This is my opinion –
COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released), you have to weigh the possibility of an ME relapse against the risk of death from COVID-19.
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine, make sure you are taking enough antioxidants, particularly NAC or glutathione and CoQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers; watch Dr. Maitland’s excellent lecture from out recent CME Workshop: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS, if you want to know more: http://bit.ly/NovaDysCME
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas. If you have been diagnosed with mast cell activation syndrome, it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID-19 vaccines. I suspect we will know fairly quickly, with millions of doses already administered. So you may want to wait (taking all of the COVID-19 precautions very seriously). If you do take the vaccine, plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction. In this special circumstance, premedication with a steroid, the same way we premedicate people who need a CT scan with iodine contrast dye, could be provided by your physician.
Please note: that if you take the vaccine you should take the whole recommended dose, and the current vaccines, Pfizer and Moderna, should be administered twice. It is not yet known how long the immunity will last, but there are blood tests that look at antibody levels available. Although they came to the market very quickly, we will know more about the quality of the antibody tests over the next few months. Most importantly, vaccination is not 100% (in fact the two initial vaccines trials were 95% effective in preventing or reducing the severity of infection). Vaccination does not exclude strict social distancing guidelines and mask wearing until “herd immunity” levels of vaccination have been reached (70% of the population)!
Of course, these recommendations are simply my opinion, and we will know a lot more about safety in the coming months – but 30,000 plus folks took the vaccines in the trials (that’s a lot) and you must be moved by the photos of health care professionals lining up to receive their vaccine. Is there a risk? Yes. There is certainly more of a risk of ME/CFS relapse than anaphylaxis, which should be manageable. Is it worth it? Your decision, weighing all that you can find out. More than 330,000 Americans have died. The new strain of the virus is likely to make our current rate of infection go much higher. Please take this seriously.
More than you wanted to know:
Partial vs. absolute protection
Most vaccines offer incomplete protection against infection and this is likely to be the case with SARS-CoV-2 vaccines as well. However, even partial protection will be of benefit both to patients and the general public. Partial protection may mean that most but not all persons develop immunity, or that some recipients develop weak immunity that makes the consequences of infection less severe than they would have been otherwise. (December 2020 update: Information from the American College of Rheumatology Regarding Vaccination Against SARS-CoV-2).
Here are the official recommendations:
The American College of Allergy, Asthma, and Immunology (ACAAI) has issued guidance for physicians and other providers related to the risk of an allergic reaction following vaccination with an mRNA-based coronavirus disease 2019 (COVID-19) vaccine.
ACAAI’s recommendations are in line with guidance issued by the Centers for Disease Control and Prevention. Specifically, that patients experiencing a severe allergic reaction after getting the first shot should not receive the second shot.
In addition, the ACAAI COVID-19 Vaccine Task Force recommends the following guidance for physicians and other providers:
- The mRNA COVID-19 vaccines should be administered in a healthcare setting where anaphylaxis can be treated. All individuals must be observed for at least 15 to 30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately with epinephrine as first line treatment.
- The CDC has issued guidance on COVID-19 vaccines and severe allergic reactions. According to the CDC, if you have a severe allergic reaction after getting the first shot, you should not get the second shot. Additionally, the CDC notes patients who experience a severe allergic reaction may be referred by their doctor to a specialist in allergies and immunology to provide more care or advice.
- The mRNA COVID-19 vaccines should not be administered to individuals with a known history of a severe allergic reaction to any component of the vaccine. Although the specific vaccine component causing the anaphylaxis has not been identified, polyethylene glycol is one of its ingredients and has been known to cause anaphylaxis.
- Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive either of the mRNA COVID-19 vaccines that are currently approved for Emergency Use Authorisation by the US Food and Drug Administration should be undertaken by the individual, along with their physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine.
- 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. Those patients should be informed of the benefits of the vaccine versus its risks.
- The mRNA COVID-19 vaccines are not live vaccines and can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccines.
- If you have questions related to the risk of an allergic reaction to either of the mRNA COVID-19 vaccines, contact your local board-certified allergist/immunologist.
SOURCE: American College of Allergy, Asthma, and Immunology
The American College of Rheumatology offers additional guidance for people on immunosuppressive therapy, and discussed in some detail the issues around vaccination and herd immunity.
To learn more, follow this link: https://www.rheumatology.org/Portals/0/Files/ACR-Information-Vaccination-Against-SARS-CoV-2.pdf
Still, I think 2021 will be a happy new year. The most vulnerable should see the vaccines available in the coming weeks! And yes, it will take a lot to get our citizens to the level of herd immunity with mostly the logistics in the news, but really it is denial of the risk of COVID-19 allowing this head in the sand thinking. Take a hard look at the stats and your risk. Then make a smart decision.
— Nancy Klimas, MD, Director, INIM
Many PWCs (Persons with CFS or FM) have developed a flare or relapse after vaccination with live viruses, so we have always recommended avoiding immunization with influenza vaccine, the MMR, and Hepatitis B, if feasible. The question is: how safe are the COVID-19 vaccines?
Currently there are at least 52 COVID vaccines in clinical trials according to the WHO, two of which will be imminently available in the USA. These are produced by Pfizer and Moderna here in America. Products by Astra-Zeneca and Johnson & Johnson are not far behind.
The Pfizer and Moderna products are not made from live virus, so they are not likely to cause flares or relapses in our PWCs. They both require two doses 21 to 28 days apart. It takes about 2-3 weeks to develop a 50% level of immunity after the first dose, and that level persists for just a few weeks so the second immunization is necessary. The vaccines are about 90-95% effective, but there is no data yet on how long such immunity will last. Side effects of the vaccination include injection site soreness and fever in most cases, increased fatigue (up to 60%), headache (up to 50%), muscle aches (37%), and chills (32%), especially after the second jab. These symptoms resolve in 24 to 48 hours, and a minority of individuals has to take Tylenol or other remedies for them.
Our concern is not the short term effects, but long term. The Pfizer and Moderna vaccines have been administered safely to thousands of individuals already, but new issues are likely to arise after millions of individuals have been immunized. Time will tell. This is currently a moot point since the vaccines will be provided first to medical providers, health care workers, nursing home residents, prison inmates, and first responders. It will probably be many months before they will be available to the public, so we will probably have a much better idea about long term effects by then.
Because COVID-19 is such a severe disease we currently recommend that high risk individuals strongly consider vaccination. These include individuals with high blood pressure, diabetes, obesity, asthma or pulmonary disease, cardiovascular disease, and immune deficiency. The vaccines have not been adequately tested in pregnant or lactating women, or in children under 16 years.
Since PWCs frequently suffer immune dysregulation, many wonder if they should be considered “immune deficient.” Our opinion is that many patients have an UP-regulated immune system and fend off viruses readily, so they rarely fall ill. If you are the type of individual who “catches every virus that comes along,” then you are probably in the minority of DOWN-regulated patients and should highly consider the vaccination when it is available.
Despite immunization there is still a small but significant chance one could contract COVID-19; therefore, prevention is KEY. Dr. Lapp has just reviewed dozens of past epidemics and one point is clear: frequent washing, hand sanitizing, face masks, and isolation are crucial for avoiding infection.
— Charles W. Lapp, MD, Hunter-Hopkins Center, P.A.
- Vaccination Considerations for Persons with Underlying Medical Conditions (Centers for Disease Control)
- M.E. Charity Statement on the COVID Vaccine (The 25% M.E. Group, Action for M.E. and the ME Association)
- Talking to Family and Friends about COVID-19 Vaccination (The COVID-19 Vaccine Education and Equity Project)
What should I do if I get COVID-19 or someone in my house gets COVID-19?
From the Centers for Disease Control and Prevention (CDC):
Most people who get COVID-19 will be able to recover at home. CDC has directions for people who are recovering at home and their caregivers, including:
- Stay home when you are sick, except to get medical care.
- Use a separate room and bathroom for sick household members (if possible).
- Wash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing; going to the bathroom; and before eating or preparing food.
- If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. Always wash hands with soap and water if your hands are visibly dirty.
- Provide your sick household member with clean disposable face masks to wear at home, if available, to help prevent spreading COVID-19 to others.
- Clean the sick room and bathroom, as needed, to avoid unnecessary contact with the sick person.
However, some people may need emergency medical attention. Watch for symptoms and learn when to seek emergency medical attention.
When to Seek Medical Attention:
Look for emergency warning signs* for COVID-19. If someone is showing any of these signs, seek emergency medical care immediately.
- Trouble breathing
- Persistent pain or pressure in the chest
- New confusion
- Inability to wake or stay awake
- Bluish lips or face
*This list is not all possible symptoms. Please call your medical provider for any other symptoms that are severe or concerning to you.
Call 911 or call ahead to your local emergency facility: Notify the operator that you are seeking care for someone who has or may have COVID-19.
Resources for Hospitalization with ME/CFS:
If you have to visit the hospital, #MEAction volunteers created these helpful resources that you can print, fill out, and take with you:
If you find that you have to see a doctor who is not familiar with ME/CFS, the Bateman Horne Center has created a fast fact sheet that you can share so they are aware of your specific needs.
What should I do if I have had close contact with someone who has COVID-19?
From the Centers for Disease Control and Prevention (CDC):
- Stay home for 14 days after your last contact with a person who has COVID-19.
- Be alert for symptoms. Watch for fever, cough, shortness of breath, or other symptoms of COVID-19.
- If possible, stay away from others, especially people who are at higher risk for getting very sick from COVID-19.
If you must leave home, remember that Face Coverings Could Save 130,000 American Lives from COVID-19 by March 2021
How can I take care of my mental health in isolation?
Like many others who suffer chronic illness, members of the ME/CFS community are particularly interested in learning more about the ways in which COVID-19 might specifically impact them and their families. Members of our community and of the Solve M.E. Community Advisory Council (CAC) were asked how they are coping, and Solve M.E. has collected the following information to help address some of the common concerns about the disease.
“As people with ME/CFS (and other comorbid illnesses) who are probably immunocompromised, we are more adept and practiced at protecting our health than the rest of the world. Because of our illness, we already have a bit of social isolation that creates a barrier from the virus, and we know we are resilient when it comes to surviving what seems terrifyingly impossible to survive. I think it is even more important during this time to practice living to the best of our ability – finding what matters and gives us purpose and joy and focusing on that, practicing self-care in our adapted ways to improve our immune systems as much as possible (Good nutrition, plenty of liquids, gentle stretching, walking or fresh air if possible, vitamins, relaxation or meditation, and of course as much sleep/rest as we can get).” — Jenna Taylor, MS, NCC, LCPC, Solve M.E. Community Advisory Council Member
“The core of self-care is not about indulgence, but about doing whatever is necessary to protect our own health. In this time of uncertainty, that concept is so much more important than ever before. We have to put our health first, and not feel guilty about that. The most important self-care tip at this time is probably asking for help with things like critical errands. It is OK to need help from others, and OK to ask for it! You are worthy of love and support, and needing help from those who love you never makes you less so.” — Carrie, creator of My Full Fibro Life and Disability Civil Rights Advocate
“I think it is important to make sure people don’t obsess over this 24/7. I think to optimize our mental health, which is important to our overall well-being and immune system, we need to set aside limited times when to educate ourselves each day and then turn it off and do something else.” — Sanna Stella, Solve M.E. Community Advisory Council Member, Master’s student in Clinical Mental Health Counseling
“It’s important to take pauses throughout the day to check in with our minds and bodies. I recommend that some of my students set check-in alarms on their phones. When the alarm goes off, they have to stop, close their eyes, and take three deep breaths, focusing on just breathing. Even this small intervention can make a big difference, as it breaks the cycle of thoughts or anxiety that might be spinning in there. I also find that, as someone with ME, my autonomic nervous system goes to fight or flight very quickly, and creating intentional pauses in my day helps. I have my own meditation/yoga practice that I do, but I also rely heavily on apps like Insight Timer, Headspace, or Calm. There are also lots of meditations available on YouTube or on podcasts.” — Kate Sanchez, Solve M.E. Community Advisory Council member and creator of the Vitamin K YouTube Channel
“As patients with ME/CFS, we may not be strangers to social distance. However, the severity of this situation, and not seeing anyone in order to protect ourselves and our (often) compromised immune systems, may cause loneliness that is stronger than usual. If you have the energy and feel extra lonely, try Skype/FaceTime/telephone and texting people who care about you.
There is a vibrant online ME/CFS community that can be accessed via Instagram and other social media sites where you can communicate with others who have similar worries and situations all over the world. This can help alleviate the feeling of going through this alone—knowing that we’re all in this together navigating this unusual circumstance.
What’s more, text and online communication can move forward at your pace, whenever you have the energy and/or desire to engage. Sometimes, even though social interactions can cost a lot of energy, they are worth it. If you can, especially during this time when emotions are running high, talking to people is a basic human function that can ease worry and make you feel more connected to your feelings and your community.” — Liliana Lim, Solve M.E. Community Advisory Council Member
Crisis Text Line: https://www.crisistextline.org
- Crisis Text Line is a nonprofit organization that offers crisis support through texting, 24 hours a day, 7 days per week.
From the US text: 741741
From Canada text: 686868
From the UK text: 95258
- Coronavirus Anxiety: Key Advice for Chronic Illness Patients from Health Psychologists from CreakyJoints the digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation
- COVID-19 Resource and Information Guide from the National Alliance on Mental Illness
- Caring for Your Mental Health Despite the Coronavirus from McLean Hospital, a Harvard Medical School Affiliate
Where can I find additional resources about ME/CFS and COVID-19?
Check out this COVID-19 and ME/CFS Webinar playlist: https://www.youtube.com/playlist?list=PLbO5abv0daLXu0TZwgSPKgxDgO5IPQGgB
From the Experts:
- What does COVID-19 portend for ME/CFS? (PDF) – Dr. Mady Hornig, Associate Professor of Epidemiology, Columbia University Medical Center
- We know too little about Covid-19 ‘long-haulers.’ We need a comprehensive study (Op-ed) – Dr. Anthony Komaroff, Harvard Medical School and Oved Amitay, Solve M.E.
- Will There Be a Post-COVID-19 Form of ME/CFS? – Dr. Anthony Komaroff, Harvard Medical School
- Coronavirus (COVID-19) & ME/CFS (Video) – Dr. Nancy Klimas, Institute for Neuro-Immune Medicine
In the News:
- Hundreds of ‘Long Haulers’ Present with Neurologic Complaints at Post-COVID-19 Clinics by Dan Hurley (NeurologyToday)
- Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19 by Dr Arya Mohabbat et al. (Mayo Clinic Proceedings: Innovations, Quality & Outcomes)
- Some of the youngest Covid patients face uncertain futures as they struggle with long-term impacts by Megan Leonhardt (CNBC)
- Long Covid: overlap emerges with ME – including debate over treatment by Linda Geddes (The Guardian)
- The COVID long-haulers: When the body gets better, but the brain does not by Clifton Gooch (Tampa Bay Times)
- Proposed British guidelines reject useless chronic fatigue syndrome treatments by David Tuller and Steven Lubet (STAT News)
- COVID-19 and Post-Viral Fatigue Syndromeby Dr. Charles Shepherd (The ME Association)
- Covid Lockdown Opening Up World for People with Disabilitiesby Frances Ryan (The Guardian)
- ME/CFS Research During the Time of the Coronavirus: Shutdowns and Opportunitiesby Cort Johnson (Health Rising)
- Chronic Uncertainty: Lessons for a Global Pandemic from a Permanently Sick Personby Esmé Weijun Wang (The Cut)
- The Disabled Person’s Guide to Getting Stimulus Checks(How to Get On)
- Fear and Social Distancing In Quarantineby Jamison Hill (Jamison Writes)
- They’re Living with an Invisible Illness. Social Distancing Will Save Their Livesby Christina Zdanowicz (CNN)
- Safety in Isolationby Jenny Spotila (Occupy M.E.)
- Dark Sun: Reflections on the Coronavirus as it Heads For Town” by Cort Johnson (Health Rising)
- Coronavirus Pt. II: Scary Models, 8 Reasons People with ME/CFS and Fibromyalgia Should Be Careful, How to Stop an Epidemic, Why You Should Trust No One and Moreby Cort Johnson (Health Rising)
- Coronavirus Pt. III: Is the U.S. Becoming Italy?, A Singapore Success Story, More Scary Models, Remdesivir to the Rescue?by Cort Johnson (Health Rising)
- A New Virus and MEby Jenny Spotila (Occupy M.E.)
- The Reaction to Coronavirus is Making Some Chronically Ill People Angry, and I’m One of Themby Kelly Wynne (Newsweek)
Additional Information for