- Last Updated: 18 April 2021 18 April 2021
Lessons learned from ME/CFS
Many ME/CFS patients have been chronically sick with a post viral-like illness. They have learned some lessons that may be helpful to patients who are just developing similar symptoms.
Treatment/management – treat symptoms, learn pacing
Doctors are just starting to learn more about Long COVID. Even if your doctor doesn’t have all the answers, s/he should listen to you and take your concerns seriously.
Your doctor should be a partner with you to help you feel and function better. The most bothersome symptoms can often be treated first. Learning about and practicing pacing will often be very helpful and should be started as early as possible.
Pacing - Do your best to avoid “pushing through” fatigue
Pacing your activity, to the extent possible, is important to allow your body to recover and heal. Try not to do too much to the extent that it will cause you to get worse. Listen to what your body is telling you and 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 and make you worse. It is challenging to avoid going beyond one’s individual energy limit because it can vary from day to day.
“The key to successful adjustment in ME/CFS and fibromyalgia is pacing, which provides an alternative to the cycle overdoing followed by forced rest (‘push and crash’.) 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.
How to work with your doctor
Try to organize your thoughts before your visit. Write them down if you need to. If you are having “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.
If you find the doctor is not helping you or is not explaining things, and you don’t have a feeling of confidence, you may need to find another doctor.
Where to find more information:
Tips on how to get the most out of a doctor's visit https://www.massmecfs.org/working-with-your-me-cfs-doctor?start=2
If your doctor does not believe you, find another doctor
All patients deserve to be believed, and treated respectfully. Your doctor can likely help you deal with specific symptoms, at least, and should be looking to see if you have other conditions which might be treatable. If you are not comfortable with how you are being treated, you may need to look for another provider.
Where to find more information:
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.
Where to join a group or find more information (this is just a sample):
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 911 in the USA or your local emergency services in your country. If you or someone you know is at risk for suicide in the U.S., call the U.S. National Suicide Prevention Lifeline at 800-273-8255, or text HOME to 741741.
In the United States, please go to https://SpeakingOfSuicide.com/resources for additional resources.
Here is a link to international suicide prevention resources:
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.
You should not feel ashamed if you can’t work – anyone can get sick through no fault of their own. You need income and medical insurance so that you can get better.
Applying for disability can be a long and frustrating process. You may need someone to help you prepare your application. You must show through records from your doctor that you have a serious and chronic medical illness, and that you cannot carry out work and everyday tasks. Write down examples of what you can and cannot do on a good day and on a bad day. Ask your doctor to put these into your medical record.
People with post-viral illness are likely to be rejected for disability at first, but you may succeed if you keep trying.
Where to find more information:
MassMECFS Disability Home Page