Lessons Learned from ME/CFS
Many ME/CFS patients have been chronically sick with a post viral-like illness for many years, sometimes decades. They have learned some lessons that may be helpful to Long COVID patients.
Treat symptoms
Doctors are still learning to recognize and treat Long COVID. Even if your doctor doesn’t have all the answers, they should be a partner with you to help you feel and function better. Don’t be afraid to bring information to them. Although there is no single test or FDA approved treatment for Long COVID, just as with ME/CFS, treating the individual symptoms can provide relief and help you to regain some function. The most bothersome symptoms can often be treated first.
Pace
Do not try to ‘push through’ fatigue. Pacing your activity is important to allow your body to recover. Listen to what your body is telling you – every patient will have a different ‘energy envelope,’ and even individual limitations will vary from day to day. Take rest periods if you can, preferably lying down, after periods of activity. Make a choice about what is essential and what is not, and, if possible, ask for help from those willing to take some of the burden off your shoulders. Be sure that a program of graded exercise to ‘recondition’ will not be beyond your energy tolerance. Repeated cycles of pushing and crashing can lead to a long-term loss of function.
“By first understanding the limits imposed by illness and then adjusting to live within them, people can reduce symptoms, decrease the frequency and severity of relapses, and experience greater stability. Pacing also provides the foundation for gradual expansion of limits.” Source: Bruce Campbell, The ME/CFS & Fibromyalgia Self-Help Program, cfsselfhelp.org.
Take one day at a time
It is frightening to not be getting better, and not know how and when you will recover. You will have some bad days and some better days. Although the outcome of Long COVID is not yet known, with time, the majority of people with ME/CFS gradually improve, although usually not to their pre-illness level.
Family members, friends, and even health care providers may question or not understand your illness, especially if your symptoms vary over time. They need to learn you are really sick and can’t do everything you used to do. You should not be blamed, nor should you blame yourself – no one wishes to get sick. Instead, seek treatment and support from those who care for you, tell them how you are feeling and how they can help. Seek any potential outside support. You may need to educate others as well as yourself, as you learn more.
Work with your doctor
Try to organize your thoughts before your visit. Write them down if you need to. If you are experiencing ‘brain fog’ tell the doctor that and ask for understanding. Take someone you trust to go with you to help you remember what your doctor has said.
Explain your illness and symptoms to your doctor. You may not have time to tell your whole story or list all your symptoms during your appointment, so start with the most important things. Be sure your doctor takes time to hear you.
Listen to what the doctor has to say about his or her plan to treat you, and don’t hesitate to ask questions. When the appointment is over, you should leave knowing how the doctor is planning to help you.
Find support
If your family, friends, and health care providers are not supportive, you may need to look elsewhere for support. Many long COVID patients have joined local or national groups where they find they are not alone.
If you feel despondent…
Getting sick with ME/CFS and Long Covid can be extraordinarily difficult, physically, and can result in loss of the ability to work and socialize and care for oneself. This can be emotionally devastating. Some people lose hope and feel like their lives are lost, even if they are still alive.
If you or someone you know is in immediate danger please call 988 in the USA or your local emergency services in your country.
What if you can’t work?
If you can’t continue your regular work, you may first ask for job accommodations from your employer. If you cannot get accommodations that allow you to work, or you become too sick to work and trying to continue makes you worse, you should apply for disability assistance, either through your employer or Social Security.
Applying for disability can be a long and frustrating process. We may be able to help. Read our comprehensive section on disability.