A New Virus and ME

Credit: NIAID

Updated: March 3, 2020

There is a new coronavirus circulating the globe, and there are quarantines of different sizes in multiple countries. This has led to great anxiety in financial markets, the media, and in communities. And you might be wondering: What should people with ME do?

I’ve gathered information from several infectious disease doctors, public health sources, and an ME specialist. While I can’t offer medical advice, I do have some basic information that I think will help (especially if you’re feeling anxious about what to do).

What is the virus?

The new virus is called SARS-CoV-2, and it originated in Wuhan, China late last year. It is believed to have jumped to humans from an animal source, as the original SARS virus did, although scientists haven’t established which animal.

SARS-CoV-2 causes a respiratory disease called COVID-19, which is characterized by fever, cough, and shortness of breath. The symptoms can range from mild to severe, and the more severe cases may require intensive care. The incubation period (the time from infection to symptom onset), is estimated to be 2 to 14 days, based on other coronaviruses. COVID-19 can be fatal in some cases, more likely in older patients or people with comorbid conditions. The World Health Organization estimates that 80% of people recover without needing special treatment.

The numbers of infected, deceased, and recovered people is changing all the time. As testing becomes more widely available, and incidences of community outbreaks change around the world, the numbers will certainly increase. We also have no idea how many people may be infected but not diagnosed because their symptoms were mild. Some scientists think that China may not be accurately reporting the number of infections. With those caveats, one large study estimated that the case fatality rate is 2.3%.

By comparison, CDC estimates that in the 2019-2020 flu season so far, there have been at least 29 million cases of flu illnesses. Most of those cases are not laboratory confirmed influenza, though. CDC also estimates at least 280,000 hospitalizations, and 16,000 deaths related to flu-like illnesses this season. For the last two years, the case fatality rate of influenza in the United States has been about 0.1%.

Edited to add: For readers in the UK, the NHS webpages on COVID-19 are really well done.

Should I Panic?

The simple answer is: no. Don’t panic about SARS-CoV-2. (Edited to add this excellent quote: “Panic and hysteria are not appropriate. This is a disease that is in the cases and their close contacts. It’s not a hidden enemy lurking behind bushes. Get organized, get educated, and get working.”)

There are a number of reasons why you might feel scared about it, though. The news media is giving us constant situation updates, which heightens our awareness. The lockdown of millions of people and businesses in China is impossible to ignore. Other countries are contemplating or actually taking quarantine steps, such as Japan closing all schools for a month. Financial markets are reacting poorly to the effect of quarantines on the economy. New outbreaks seems to be popping up without clear explanation, including a single case in the United States that does not appear to be linked to China. Edited to add: as of March 2nd, there is evidence of community spread in the United States. I won’t be able to keep up with the numbers every day.

One thing that is driving the fear is that this virus is new. We don’t know much about it, and we can only make educated guesses about what will happen if there is true pandemic spread. If the case fatality rate truly is 2%, then failure to contain the virus could produce frightening casualty numbers. However, if the case fatality rate is similar to influenza, then nationwide quarantine measures may be unnecessary.

Panicking doesn’t actually help anyone. We need public health decisions to be based on information, not fear. The same is true for individuals. Fear won’t help you protect yourself from SARS-CoV-2, but there are things you can do.

What Do I Do?

As of today, there are no special recommendations for immune compromised people on how to avoid COVID-19 infection. Common sense suggests, though, that anyone with a compromised or wonky immune system should be extra careful. That includes people with ME or other immune illnesses, people over 65, people undergoing chemotherapy, etc. The good news is that you probably know at least one thing you can do to protect yourself from SARS-CoV-2 because you already know how to protect yourself from influenza, and the prevention measures are similar. Edited to add: the 25% ME Group has posted recommendations specific to those with severe ME.

#1: Wash your hands. Seriously, wash your hands. Use soap and water, and wash your hands for at least 20 seconds after using the bathroom or blowing your nose/sneezing. I also wash my hands before using a restroom in a public place. Edited to add: this is a fabulous video that demonstrates proper hand-washing technique. Wash your hands before eating. Wash your hands when you get home from a public place. If there is no soap and water available, use an alcohol-based sanitizer with at least 60% alcohol.

#2 Don’t touch your face. If you are out in public, don’t touch your eyes, nose, or mouth. Once you start to pay attention to it, you will be amazed how many times you do this. But if you are in public–especially in a healthcare setting–don’t!

#3 Practice cough and sneeze etiquette. Cough or sneeze into a tissue, and then throw the tissue away. Then wash or sanitize your hands. If you don’t have a tissue, try to cover your mouth with your elbow instead of your hand.

#4 Avoid sick (or potentially sick) people. If someone you know is sick, especially with a respiratory illness, it’s better not to be in close contact with them. That can be hard if the sick person lives with you or is your carer, but try to minimize your exposure (and everybody should be washing their hands). It’s a good idea to avoid large numbers of people during flu season, if you can. Be especially careful to avoid coughing/sneezing people in healthcare settings. Don’t shake hands with people, either.

#5 Ask others to practice good hygiene/infection control. People who visit you, live with you, or help care for you should all practice the same infection control measures. They should wash their hands upon entering your living space and before preparing your food. They should cough and sneeze into tissues, throw the tissues away, and then wash their hands. If they are sick–or if someone in their families is sick–then it is best for them to stay away. This is especially true for caregivers of severely ill ME patients. Caregivers must practice good hygiene and infection control measures.

#6 Sick people should wear masks. CDC does not recommend that well people wear masks to protect themselves from SARS-CoV-2 (or influenza). However, people who are sick should wear masks to protect against infecting others. Note that commonly available surgical masks do not filter out most viruses because the particles are too small. The masks that are rated N95 or better will filter viruses, but they are hard to find (or the prices have been jacked up). N95 masks are also supposed to be fitted to the individual and then tested, and most people are not doing that.

#7 Have some supplies on hand, but don’t go crazy. Some experts have recommended preparing the same way you would for a big storm: have nonperishable food and a two week supply of medications on hand. I wish one of them would tell my health insurance company that so I can actually get the two week supply ahead of schedule. Keeping easy to prepare food on hand is always a good idea for people with ME anyway, since we never know when a crash will make food shopping and prep impossible.

#8 Prepare for disruption of your routine. I have personally found the angsting over quarantine to be a bit ableist, since millions of people with serious health conditions (including ME) are already living partially or entirely as if we are quarantined. Being told to stay at home is redundant for those of us that rarely leave it. However, restrictions on who can come to us, especially those who live alone and depend on outside help, would have a significant impact. Thinking through your backup plans in advance is a good idea. Can you get groceries delivered? What are your options for getting medications or other essential items if you can’t go out for a week or more? If the person/people who help you were unavailable, do you have backup help?

#9 Make a healthcare plan. You may not be able to get to your doctor’s office easily even on a good day, if you have ME. If you are sick with an acute illness on top of ME, it will be even harder. Does your doctor offer any virtual services, such as video or phone consults? Make a plan with your primary care doctor or nearby urgent care so that you can get tested and treated if you have symptoms of any flu-like illness.

#10 Do not delay seeking healthcare. Flu-like symptoms that might be of less concern in a healthy person can be very serious for people with ME, so consulting a healthcare provider should not be delayed if fever, cough, or congestion develop. The risk of complications is too high. In the past, I haven’t always bothered to call my doctor when I spiked a fever or had bad congestion. This year, I called my doctor the moment my temperature went up, and I was able to get treatment for suspected influenza that helped my recovery. If you get flu-like symptoms, call your doctor right away. Don’t wait and risk developing more severe illness.

#11 Stay informed, but in balance. Use a reliable source to stay aware of developments in your area. You need to know if there are health advisories or local outbreaks that affect you. Once you have that information, though, stop. Unless you are a virus geek like me, the constant buzz of updates and breaking news may just wind you up. The bad weather analogy may be helpful here. You probably pay different levels of attention to storms that are 1,000 miles from you versus 100 miles versus 10 miles. The risk assessment for a viral outbreak is similar.

#12 Get vaccinated, if you can. I know many people with ME who have been advised by their doctors not to get vaccinated for influenza and other diseases. I know many others who have not received that advice from a healthcare practitioner, but who decline vaccination for a variety of reasons including concern that it will exacerbate ME. I cannot override medical recommendations people receive (obviously). However, if you CAN get vaccinated, then please GET VACCINATED. If you contract influenza or pneumonia, you will be even more vulnerable to SARS-CoV-2 infection. Similarly, if you catch COVID-19, you will be more vulnerable to influenza. These are not diseases that anyone should have to experience simultaneously, and that is especially true for people with ME. For yourself and the other vulnerable people in your life, please get vaccinated if you can. (Edited to add this point on March 2, 2020).

There is no way to virus-proof ourselves completely. However, if you follow these common sense public health recommendations, you will be better equipped to handle an infection if it comes. Do what you can to minimize disruptions to your routine. If you do get sick, take it seriously and seek healthcare.

And one last thing: wash your hands. Seriously. Wash your damn hands.

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36 Responses to A New Virus and ME

  1. Mark Peterson says:

    Jennie, well thought out and presented. Thanks

  2. Juanita Thatcher says:

    Jennie, may this be copied in order to share on FB? This is concise and easily understood. I want to thank you for all the work you have done on this issue. There is a lot of conflicting and confusing information out there.

    • Jennie Spotila says:

      I’m glad you found it helpful. You are welcome to copy one or two paragraphs with a link back to this page. Thanks!

  3. Juanita Thatcher says:

    Never mind! I just saw where it can be shared on FB. Thank you!

  4. Going to ME basics and post viral onset we should insist on research into new cases of ME arising from this emerging virus class. The reported cases of delayed positive results go this as well.

    FWIW seasonal flu is the worst flare trigger in my situation, which is otherwise well managed. I suspect this is common. For me it makes the difference on either a healing or sickening year.

    • Jennie Spotila says:

      I agree with your idea that a cohort should be followed for ME. We know it happened with SARS. And the flu is the worst. I never skip the vaccine.

      • Winter 17/18 I got sick ten days or so out from the shot, in hindsight likely from a mild immunity drop associated with the vaccine. That lasted two months.

        This season I hunkered down for a couple of weeks after getting immunized and did ok – so far.

      • Stacey Reinmund says:

        I have always been afraid to get vaccinations for flu. My Dr. gave me one for Shingles and I got a small patch that lasted for over a month! (Ouch!) Does that mean bc I reacted to one vaccine….it will happen again with any other?
        Btw: Thank you SO MUCH for the well thought out and concise information! I have dodgy concentration and cognitive skills, at times, and yet I was able to follow and “get” the information you gave. Bless you.

        • Jennie Spotila says:

          I’m so glad this info is helpful to you and easy to understand! That was my goal. I had flu-like symptoms after each shingles shot. Anecdotally, I’ve heard people tend to react to one not both. But given your reaction to the first one, I would definitely talk to your doctor before the second.

        • I finally got my disability with a central pain sensitization diagnosis.

          The more testing the better at this point, but testing is still ramping up. I’d call my provider and request a test, but self triage as a lower priority and request they schedule when they can.

  5. Bazia Zebrowski says:

    Thanks! Appreciated!
    Info from my cousin.
    Australia has halted all Chines/Japanese imports.
    They are being hit hard with the virus.

    What’s your take on viral exposure from items?

    Are virus’s usually killed by freezing temps?
    I’ve got a package outside(24 degrees) that I’m happy leaving to decontaminate for awhile.

    Always grateful for your thoughtful and educational contributions!

    • In the interest of factual correctness: Australia has NOT halted imports from anyplace, as far as I’ve heard and I’ve been paying close attention and am Australian. Something that dramatic would leave google-able information around!

      I don’t know about temperature but Ian Mackay (who is a virologist regularly on the news here) has put some Twitter info about surfaces – says that anything that’s not hard/shiny won’t hold virus much so I’m thinking a cardboard box is fine. citation: https://twitter.com/MackayIM/status/1233522944137187329

      • Bazia Zebrowski says:

        My cousin imports are halted from China to Australia. She stated all was halted but maybe that’s an overstatement. Roller-shutters, which they import, are metal so it seems they wouldn’t be likely to be as much as a carrier as other items with more porous surfaces.

        • Jennie Spotila says:

          This is from the CDC website:

          Q: Am I at risk for COVID-19 from a package or products shipping from China?

          A: There is still a lot that is unknown about the newly emerged COVID-19 and how it spreads. Two other coronaviruses have emerged previously to cause severe illness in people (MERS-CoV and SARS-CoV). The virus that causes COVID-19 is more genetically related to SARS-CoV than MERS-CoV, but both are betacoronaviruses with their origins in bats. While we don’t know for sure that this virus will behave the same way as SARS-CoV and MERS-CoV, we can use the information gained from both of these earlier coronaviruses to guide us. In general, because of poor survivability of these coronaviruses on surfaces, there is likely very low risk of spread from products or packaging that are shipped over a period of days or weeks at ambient temperatures. Coronaviruses are generally thought to be spread most often by respiratory droplets. Currently there is no evidence to support transmission of COVID-19 associated with imported goods and there have not been any cases of COVID-19 in the United States associated with imported goods. Information will be provided on the Coronavirus Disease 2019 (COVID-19) website as it becomes available.

  6. Larissa Fan says:

    Thank you for this article. I just want to add that it’s a good idea to regularly disinfect your phone as well as they get quite germy, and are handled a lot.

  7. Susan Taylor-Brown, PhD says:

    Informative and balanced piece, thank you.

  8. Chris Williams says:


    As always thank you for writing this! As a patient with ME/CFS over 65 I would add one comment. Make sure your pneumonia and flu shots are current. I’ve been traveling for 6+ weeks and confess I need to get the pneumonia shot ASAP when I get home this week. I realize some patients may have concerns about these shots and each of us needs to make decisions which are best on a case by case basis.

    • Jennie Spotila says:

      YES! 100% agree. Getting one infection, whether it’s flu or pneumonia or COVID-19 or a cold, will make you more vulnerable to catching another one. Get vaccinated if you possibly can!

    • Get vaccinated, but realize you may also have a small flare and small immunity drop. Take it easy for a couple of weeks after the shot, including social isolation.

  9. Pingback: Coronavirus & ME | WAMES (Working for ME in Wales)

  10. Pingback: CORONA & ME

  11. Kathy D. says:

    I just skimmed this as I’m exhausted. But thank you so much.
    You are just brilliant and so helpful to us.
    I will read this in more detail, and let the ME/CFS Phone Group
    and ME/CFS for the Slightly Irreverent FB page know about it.

  12. Interesting and useful article. One of my professors from Airlangga University, Indonesia also discussed more about Corona virus. For a more complete article I will share the article link below. Happy reading and hopefully useful


    Thank you so much

  13. Claudia says:

    Thanks so much. For anyone with dietary allergies, severe sensitivities, chemical sensitivities and those needing very specific products that are imported, I would strongly advise to buy reserves now. As much as possibly financially. The reason being that a lot of our peeps can’t tolerate fast changes to their diet or any substitutions at all. Many suffer from migraines and chemical sensitivities that are bound to get worse as products being sold become more and more scented due to use of hand sanitizer and companies spreading disinfectant on them. I’ve been ahead of the curve and got almost all I needed but the last box of Amazon sure smelled different. If you’re in this situation now is the time to grab peroxide if alcohol is out of stock cause, again, not all of us can tolerate alternatives or do without special products like I can breathe carbon filter masks which, if that shall business person falls sick, we’ll have a real hard time getting.

  14. Stacey Reinmund says:

    I have severe ME/CFS and Fibromyalgia Combo, confirmed at the Mayo Clinic in MN in October 2019 -with central sensitization. I’m already isolated, naturally, mostly because of my severe insomnia and fibromyalgia fog. (mixed together impacts my memory, concentration and critical thinking reactions so badly…I’m not suppose to drive)
    My issue is my family. I have a husband in finance that travels for a living meeting clients and bank groups daily, 2 college students that go to the 2 very large colleges…one is UCF, in Cen. Fl., that was closed this week due to 12 students exposed while in Washington DC and our County, just recently, has 2 confirmed cases.
    My problem is: I HAVE had a mild continuous cough, and mild fever….that fluctuates from normal to a little higher. (No difficulties breathing or pain in chest) But, other symptoms posted are symptoms you get either or both.
    I don’t want to overload the system, I’m not easily panicked or over react, but I am concerned about what I’ve been exposed to in the last few weeks…..prior to new local and info in the past 3 days.
    Any advice?

    • Jennie Spotila says:

      I recommend calling your doctor. That might be the doctor at Mayo who diagnosed you, or your primary care doctor. They should give you guidance on whether you need to be tested, as well as what to do if your symptoms get worse. There are specific things to do in a situation where one person in the house actually has covid-19, all connected to isolation in order to avoid infecting family members. Again, your doctor should be able to advise you on that. Alternatively your county public health department should have information/guidance for residents too. I hope these suggestions help.

      • Stacey Reinmund says:

        Good idea. Yea, there’s only 2 and the county is freaking out! But, I am going to pass your link along to my Primary, if that’s okay, so he can give it to any other patients as a resource. It’s just so well put together and easy to understand! Thank you for all the thought you put into it….it shows. ☺️

  15. Stacey Reinmund says:

    I have severe ME/CFS and Fibromyalgia Combo, confirmed at the Mayo Clinic in MN in October 2019 -with central sensitization. I’m already isolated, naturally, mostly because of my severe insomnia and fibromyalgia fog. (mixed together impacts my memory, concentration and critical thinking reactions so badly…I’m not suppose to drive)
    My issue is my family. I have a husband in finance that travels for a living meeting clients and bank groups daily, 2 college students that go to the 2 very large colleges…one is UCF, in Cen. Fl., that was closed this week due to 12 students exposed while in Washington DC and our County, just recently, has 2 confirmed cases.
    My problem is: I HAVE had a mild continuous cough, and mild fever….that fluctuates from normal to a little higher. (No difficulties breathing or pain in chest) But, other symptoms posted are symptoms you tend to get from either -or both.
    I don’t want to overload the system, and I’m not easily panicked or tend over react, but I am concerned about what I’ve been exposed to in the last few weeks…..prior to this new local info learned in the past 3 days.
    Any advice?

  16. I finally got my disability with a central pain sensitization diagnosis.

    The more testing now the better, the issue is how quickly testing ramps up. Call your provider and identify as lower priority. If it gets worse, call again.

  17. Geoff says:

    We need to discuss how COVID-19 relates to medicating with Low Dose Naltrexone.
    Many believe that the immune systems of ME patients are overactive. I and others have experienced a total absence of seasonal colds and flues despite ongoing chronic ME symptoms. So even though LDN is the single most effective treatment in ME/FM is now the best time to ‘normalize the immune system’ ? A common occurrence for those who start with LDN is to come dow with whatever going around at the time.

  18. Tim says:

    “I was able to get treatment for suspected influenza that helped my recovery.”

    What treatment was that? Antivirals? A quick look at this page
    suggests the benefits for flu are limited, there are risks and they may not work for Covid-19. There are probably better sources. Does anyone have one?

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