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.