We conducted a short 5-question survey during the month of April, 2018, and publicized it within the U.S. ME/CFS community. We asked respondents to briefly describe their experience with their (U.S.) commercial health insurance provider, identify the insurance provider, and rate their overall experience on a scale of 1 to 5 from very positive to very negative. We also asked if they had received a diagnosis of ME, CFS, or ME/CFS. We received 187 responses. Results were tallied by hand. 95% of respondents had a diagnosis of ME/CFS, or ME/CFS. 22% reported very positive or positive experiences, 16% neutral, and 62% negative or very negative.


The purpose of this survey was to get a sense of the main issues that ME/CFS patients have when interacting with commercial health insurers. Although we stated that this was not including disability insurance, we did receive a few responses about disability insurance issues. We are excluding these responses in this summary. We also excluded Medicare, which covers a lot of ME/CFS patients, as it is not within our scope of commercial insurers.

This is not a scientific survey. We just wanted to pick up the main issues. We understand that people with negative experiences are more likely to respond to a survey like this. So the actual percentages at best may be useful as an indication of the relative frequency of the most problematic issues.

In general, the issues fall into two broad categories – access to care and cost of care. We will show these below. The statistics do not in any way capture the emotional content of the responses. Of particular concern is the comment made by several of the respondents that they had become so discouraged or traumatized by their experiences with the health care system that they had stopped seeking medical care completely, even for routine screenings or needed medical tests. In our mind, this represents a catastrophic failure of the health care system.


Access to care:

  • 40% of respondents cited no access to providers who know about ME/CFS.
  • Nearly 30% stated that stigma about ME/CFS had negatively affected their care.
  • Over 1/3 reported difficulty obtaining or paying for prescribed drugs.

Cost of care:

  • More than a quarter of respondents say cost of coverage is a very significant burden
  • “Alternative” treatments/supplements are not covered
  • 38% are generally satisfied with their coverage but many noted that costs are very high

View chart with details and comments.