How does ME/CFS impact your life?

Due to the complex nature of the disease, people with ME/CFS experience a variety of symptoms on a daily basis. Symptoms wax and wane unpredictably, making life with the illness challenging.

Visualizing your symptoms and the impact on your life can help you and others see how ME/CFS affects your average day, week and year.*

*We designed the impact tool to help communicate the day-to-day of this disease in a visual way. Whether it be debilitating symptoms or disengaging from life activities to avoid a crash, ME/CFS crowds everything else out.

However, this tool cannot capture the singular experience of every individual living with this disease. For people with severe ME/CFS, no tool could adequately capture the enormous impact on day-to-day life.

Question 1

What is the average frequency you experience fatigue over the course of a month?

Question 2

What is the average severity of fatigue you experience over the course of a month?

Question 3

How many times a month do you “crash” after physical, mental or emotional exertion (known as post-exertional malaise or PEM)?

Question 4

How long does it take you to recover from a crash?

Question 5

How many things do you miss out on in a month because of your health or because you are trying to avoid a crash?

Question 6

What are some of the things you miss out on?

Social Activities Sleep Travel

Family Time Exercise Work or class

AVERAGE MONTH — 30 DAYS

CALCULATING

Did you know?

Up to 69% of those suffering from ME/CFS are unable to work, and 25% become homebound and dependent on care.

Institute of Medicine of the National Academies 2015

Your full year at a glance:

days impacted by fatigue

crashed (PEM) days

missed activities

Imagine how much we could learn about ME/CFS if we had even more information on the day-to-day impact of this disease!

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