Symptom Cluster Characterization in Complex Chronic Disease:

 

#MEAction "#MEAction has created a symptom survey for people with complex chronic diseases.

This patient-led study is looking for the symptom-stories of people with hypermobile EDS and hypermobility spectrum disorder, myalgic encephalomyelitis/chronic fatigue syndrome, Long COVID, POTS, MCAS, and healthy allies!  Can you participate in a multi-part survey about your disease experience? 

Sections will be released throughout the year, so we need and want people who will begin this journey and end it with us. Can we count on you?

You can take the survey if:

  • You are 18 or older
    AND
  • You have a diagnosis from your medical provider of hEDS or hypermobility spectrum disorder, ME or ME/CFS, POTS, and/or MCAS
    OR
    You have a suspected diagnosis of Long COVID
    OR
    You are generally healthy, with no chronic diseases or conditions 

People from any country can take the survey.

Additional details on inclusion criteria:

While we recognize there are significant barriers to diagnosis, in order to accurately characterize ME, ME/CFS, POTS, hEDS, and MCAS, we require that people with chronic complex disease have been diagnosed by a medical provider. 

We ask that Long COVID responders have had a positive PCR or antibody test for COVID-19 or met the CDC criteria for suspected COVID-19 infectionand have continued to experience symptoms for 3 months or longer.  Your doctor does not need to have told you that you have a diagnosis of Long COVID (or “PASC”).

Sign up:

www.meaction.net/epi/quiet

Learn more:

Main Page: www.meaction.net/epi

FAQ: www.meaction.net/epi/faq