Saturday, February 21, 2015

Survey on Access & Quality of Healthcare for ME/CFS

Leonard Jason, renowned ME/CFS researcher at DePaul University is conducting an online survey of ME/CFS patients on their access to healthcare and the quality of that care, specific to knowledge of how to treat ME/CFS.

This is a very important survey, so I urge you to participate at this link. It only took me less than 10 minutes to complete the survey.

Our family has been fortunate in this area for 3 reasons:
  • I happened to stumble upon a local family doctor one year into my "mystery illness" who immediately recognized that I had ME/CFS, after a full year of seeing all kinds of doctors and searching for a diagnosis. She not only diagnosed my illness but knew the basics of how to treat it and was open to trying new things whenever I brought the latest study results to her. I know now, from other ME/CFS patients, just how unusual this is.
  • We have the means to seek out top ME/CFS doctors and travel to see them. My husband has a stable job, and we have been fortunate to see Dr. David Bell before he retired and now see Dr. Susan Levine in NYC. I spent a lot of time and energy finding these doctors and making arrangements for me and the kids to see them. Granted, most of our money goes toward medical expenses and there is not much left over, but I am grateful we have it to begin with.
  • We have excellent health insurance through my husband's job, including out-of-network coverage.
I am well aware that we are lucky in these respects and that the situation is not nearly so positive for most patients with ME/CFS.

That is why it's so important for you to take a few minutes to fill out this survey and make it known just how scarce good quality healthcare for ME/CFS really is.

1 comment:

  1. Thank you for the link to this survey. It barely took me ten minutes.

    ReplyDelete