Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey to deeply examine the symptoms experienced by people with diseases that are triggered or unmasked by infection, including ME, POTS, hEDS, MCAS, and Long COVID.  At the end of this year, we will close the Adventure with over 1.5 million data points illustrating the connections between these diseases’ symptom presentation, and what makes each disease– and each person living with these conditions– unique.

That’s 1.5M data points for completed surveys only– that is, for individuals who have taken all five survey sections.  In reality, we actually have many, many times that.  That’s just the very best, most complete data.

When we started the Survey our goal was to have 2,000 people complete the survey and currently nearly ~1950 individuals have completed the survey.  We’re aiming for 2,000 or more.  If you’ve taken at least one section of the survey, now is the perfect time to finish up!  Check your email for invites over the next few days and visit the survey landing page, www.meaction.net/epi, to check for updates and receive help if needed.

We’re collecting some very important data with this survey, some of it for the first time!

We’ve been able to survey a diverse group of responders.  This is important because infection-associated chronic illnesses are so under-researched in most populations.  We may be able to learn for the first time if ME is experienced differently by different groups.