Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

By Charmian Proskauer

1.  Know that the illness is real! No one hates it more than the patient.
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2.  Respect the illness! When your ill loved one needs to slow down or stop, please slow down or stop. Take time out for a rest. Trying to do just one more thing is going to backfire on both you and the patient.

3.  Use your own radar! When you see the brain fog settling in, stop talking. What you say isn’t going to be properly heard anyway. Make a cup of tea for both of you.

4.  When it’s time for your loved one to take a nap, find something else to do and let her/him rest.

5.  Learn what times in the day your loved one feels better, and plan your joint activities for those times. You may need to start doing some things on your own.

6.  If you have something important or complicated you need to discuss, ask first if this is a good time to talk about it. Jumping in when your loved one’s brain isn’t on will frustrate both of you.

7.  Find fun things to do together that aren’t taxing. Reading aloud is a great pleasure—and not just for kids.  

8.  Learn “pacing” yourself in order to “stay within the energy envelope” of your loved one, at least in the part of life that you share. Simplifying your own life isn’t such a bad idea.

9.  When something doesn’t work, and when trying to keep up with you causes your loved one to crash, it’s OK to be sad and angry for 10 minutes. Then, while your loved one is recovering, figure out how to do things differently next time.

10.  Remember that “brain work” is just as tiring as physical exercise, and the ability of your loved one to do “brain work” may fluctuate. Stop if it’s not working.

Your goal is to have as much quality time together as the illness allows. You are an important partner in making that happen!

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.