Chronic Illness Survey Adventure Finishing this Month!

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.

Here is some interesting data on who responded to the survey regarding which diagnoses they had from a clinician.

  • 554 people had mast cell activation disorder (MCAS)
  • 2763 said they’d been diagnosed with chronic fatigue syndrome (CFS); 2579 said they’d been diagnosed with ME/CFS; and 1271 said they’d been diagnosed with myalgic encephalomyelitis.
  • ~700 had a diagnosis of Ehlers-Danlos syndrome(s)
  • 1349 had a POTS diagnosis
  • 1400 had a diagnosis of fibromyalgia

If you’ve already taken at least one section of the survey, keep an eye out for your invites this month!  

If you are interested in starting the survey, which is in five parts, you can sign up here: www.meaction.net/epi/quiet.  Then, you can check your email for an invite with a link to begin!

We’re looking forward to doing a deep dive into this data starting in the new year.  Thank you for your participation and all your help along the way!

Sincerely,
Jaime Seltzer
Scientific Director

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