COVID-19 and the ME/CFS Community

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.

What is COVID-19? 

From the World Health Organization:
“Coronaviruses (CoV) are a large family of viruses that cause illness ranging from the common cold to more severe diseases such as Middle East Respiratory Syndrome (MERS-CoV) and Severe Acute Respiratory Syndrome (SARS-CoV). Coronavirus disease (COVID-19) is a new strain that was discovered in 2019 and has not been previously identified in humans. Common signs of infection include respiratory symptoms, fever, cough, shortness of breath and breathing difficulties. In more severe cases, infection can cause pneumonia, severe acute respiratory syndrome, kidney failure and even death. Standard recommendations to prevent infection spread include regular hand washing, covering mouth and nose when coughing and sneezing, thoroughly cooking meat and eggs. Avoid close contact with anyone showing symptoms of respiratory illness such as coughing and sneezing.”

What We Know Right Now

The Centers for Disease Control & Prevention (CDC) has shared that those at higher risk of serious illness from COVID-19 include older adults, people with heart disease, disabilities, lung disease, and people with other serious chronic medical conditions.

For the latest COVID-19 updates from the Centers for Disease Control (CDC), visit their website:
https://www.cdc.gov/coronavirus/2019-ncov/index.html

For the latest updates from the World Health Organization (WHO):
https://www.who.int/emergencies/diseases/novel-coronavirus-2019

For the latest updates from the National Institutes of Health (NIH):
https://www.nih.gov/health-information/coronavirus


Additional COVID-19 Information From Universities, Government Agencies and Professional Organizations:

The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS

CDC Adds New Symptoms for Coronavirus

National Institute of Allergy and Infectious Disease: Coronoavirus

World Health Organization Q&A: Coronaviruses

Centers for Medicare & Medicaid Services: Medicare has expanded telemedicine services in response to COVID-19 

Coronavirus COVID-19: A Map of Global Cases by the Center for Systems Science and Engineering (CSSE) at Johns Hopkins University

The Association of American Medical Colleges (AAMC): Coronavirus Resources from the Academic Medicine Community

Coronavirus Update with Anthony Fauci, MD – March 18, 2020 (Video)

Statement from Social Security Commissioner Andrew Saul about COVID-19 Economic Impact Payments for Beneficiaries

Chronic Disease and COVID-19 What You Need to Know (National Association of Chronic Disease Directors)

 

Upcoming webinars:

Please stay tuned for more updates!

Past Webinars:

August 27, 2020 Webinar:
Will COVID-19 Lead to ME/CFS in Some People?

People with myalgic encephalomyelitis (also known as Chronic Fatigue Syndrome, or ME/CFS) commonly report that an infection preceded their chronic illness. A number of viruses have been implicated as triggers of ME/CFS, including previous coronavirus strains (e.g. the 2003 SARS coronavirus outbreak). Now, as the novel coronavirus (SARS-CoV-2) sweeps the world, experts predict that a significant number of people will develop post-viral problems that could be lifelong. There are already reports that COVID-19 “long-haulers” still have lingering symptoms, even more than 100 days post-infection. Join Dr. Anthony L. Komaroff for a discussion of what we know so far about the connection between COVID-19 and ME/CFS, questions we should be asking, and the research efforts that are forming in response to this unique opportunity to understand post-viral illness. Ahead of the webinar, be sure to check out Dr. Komaroff’s blog post on the Center for Solutions for ME/CFS website: Will There Be a Post-COVID-19 Form of ME/CFS?

View the slides for the presentation here.


April 17, 2020: National Health Council Webinar: Coronavirus Preparedness for People with Chronic Diseases: What Are the Mental Health Implications? 

In this webinar, our partners at the National Health Council focus on the impact of the Coronavirus on mental health in the US. The speakers discuss the increase in anxiety and give general advice for self-care and advice for LGBTQ youth on coping with stress during the COVID-19 crisis. This webinar is intended for patient advocacy group representatives, patients, caregivers, and other stakeholders interested in learning more on how to protect their own mental health as well as those in their care.

Watch it here:

 

April 10, 2020: COVID-19 Update from the Bateman Horne Center 

Dr. Suzanne D. Vernon, Research Director at the Bateman Horne Center, gives a brief update on the happenings of COVID-19, and shares additional insights on how you can protect yourself and your family.

Watch it here:

March 27, 2020: National Health Council Webinar: Coronavirus Preparedness For People With Chronic Diseases: What do Caregivers Need to Know? (Co-Sponsored by the National Alliance for Caregiving)

COVID-19 is causing significant concerns globally, especially among those with chronic diseases and conditions and their caregivers. In this March 27, 2020 webinar by Solve M.E. partners at the National Health Council, the speakers discuss general advice for caregivers, caregiving for older patients, caregiving for children, and federal policies on caregiving. This webinar is intended for patient advocacy group representatives, caregivers, and other stakeholders interested in what caregivers can do during this time.

Watch it here:

March 20, 2020: COVID-19 Address by the Bateman Horne Center

In this March 20, 2020 webinar, the Bateman Horne Center clinicians address COVID-19 in this 50-minute program featuring Research Director Dr. Vernon (covering SARS, CoV-2, and COVID-19), Medical Director, Dr. Cindy Bateman (a member of the Solve M.E. Research Advisory Council), and Physician, Dr. Yellman, who provide an overview of COVID-19’s impact on the medical system, guidance for personal safety, a preview of potential treatments, and answer frequently asked questions from people with ME/CFS and FM.

Watch it here:

Additional COVID-19 resources from the Bateman Horne Center may be found here:
https://solvecfs.org/the-bateman-horne-center-on-covid-19/

 

March 13, 2020: Coronavirus Preparedness for People with Chronic Diseases

While there is little information available about the specific impact of COVID-19 on those with ME/CFS, a recent webinar by our partners at the National Health Council (NHC) reported that individuals taking immunosuppressants, undergoing chemotherapy, and have otherwise compromised immune systems may be at greater risk.

Watch the webinar here:

The National Health Council page on COVID-19 Awareness

March 13, 2020: COVID-19 & ME/CFS

ME/CFS Specialist Nancy Klimas, MD (Chair, Department of Clinical Immunology, College of Osteopathic Medicine, Nova Southeastern University) recently posted the video “COVID-19 & ME/CFS.”

Watch it here:

What Can I Do?

There are basic precautions that we all should be taking, including washing hands often with soap and water for at least 20 seconds and avoiding crowds and non-essential travel. 

Additionally, the CDC has issued specific guidelines for those who are at higher risk of getting very sick:

https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

Contact your healthcare providers to ask about getting extra necessary medication (or look into using mail-order services for medication). Make sure you have over-the-counter medication and supplies. If the virus has been identified in your community, make sure you have enough food and essentials on hand so that you can stay at home as much as possible. Make a plan for who could provide care to you if your caregiver should fall ill.

Note that routine medical appointments may be cancelled by your doctor. You may want to discuss postponing appointments and procedures with your healthcare team. Doctors at the American Lung Association recommend calling ahead if you need to see your doctor for a non-respiratory issue, “The more communication occurs, the better off people would be.”

#MEAction has created a Hospital Admittance Form and Hospital Checklist that could be useful to ME/CFS community members. 

 

To connect with other members of the ME/CFS community, visit the Solve M.E. Facebook page.


 Would you like to share your experience and knowledge?

Out of necessity, people with ME/CFS have a unique skill set when it comes to self-isolating. Use this form to send us a note about the measures you take to preserve your physical and mental health. We’d like to share your perspectives beyond the ME/CFS community and use it as an opportunity to build awareness. Your experience and expertise are valuable and can be helpful to those who because of COVID-19 are only now facing the types of challenges people with ME/CFS and other chronic illnesses know all too well.


Getting Accurate Information
Unfortunately, false news can travel just as quickly as a virus. There are many incorrect and potentially dangerous articles being shared on social media. Before using or sharing articles, images, or treatments, see if it passes the C.R.A.A.P test (originally developed by Sarah Blakeslee of the University of California at Chico’s Meriam Library):

Currency: Is the information current? This is a rapidly evolving situation, and information will change as health officials learn more about this illness. If the information is more than a day old, check to see if it has been updated since.

Relevance: Does it apply to your situation and geographic area? Is this information from a reliable source? Before trying any new treatment, remember to check with your healthcare team.

Authority: Is this from a credentialed source? Is the author or person being quoted a healthcare or public health professional? What is the domain (i.e. .com, .org, .gov, .edu)?

Accuracy: Is the information supported by evidence? Can you verify the information from another source? Are there spelling, grammar, or typographical errors?

Purpose/Point-of-View: Is this information encouraging you to buy a specific brand of product or avoid a specific brand of product? Does the author’s tone feel objective and impartial? Who would benefit from this information and who could be harmed by it?

 

Self-care in the time of COVID-19

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

Resources for crisis support:

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

Anxiety and Depression Association of America: https://adaa.org/finding-help/coronavirus-anxiety-helpful-resources


Relevant news items and blog posts by, for and about the ME/CFS and chronic illness communities:

COVID-19 and Post-Viral Fatigue Syndrome by Dr. Charles Shepherd (The ME Association)

Covid Lockdown Opening Up World for People with Disabilities by Frances Ryan (The Guardian)

ME/CFS Research During the Time of the Coronavirus: Shutdowns and Opportunities by Cort Johnson (Health Rising)

Chronic Uncertainty: Lessons for a Global Pandemic from a Permanently Sick Person by Esmé Weijun Wang (The Cut)

The Disabled Person’s Guide to Getting Stimulus Checks (How to Get On)

Fear and Social Distancing In Quarantine by Jamison Hill (Jamison Writes)

They’re Living with an Invisible Illness. Social Distancing Will Save Their Lives by Christina Zdanowicz (CNN)

Safety in Isolation by 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 More by 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 ME by Jenny Spotila (Occupy M.E.) 

The Reaction to Coronavirus is Making Some Chronically Ill People Angry, and I’m One of Them by Kelly Wynne (Newsweek)