Full report click 2025_Community_Survey_Report

This report, conceived and commissioned by four BC organizations, presents the results of an on-line survey of ME, FM, Lyme and Long COVID patients in BC conducted during the winter of 2024-25. The survey asked people to give their perspectives on strengths and weaknesses of the existing health care system and to identify opportunities for improvement. Just over 1,000 people in BC participated in the survey.

The survey shows that respondents have had some good and many bad experiences in the health system. Bad experiences included being dismissed, disrespected or disbelieved, getting wrong diagnoses or harmful treatments, and receiving little help with financial applications. It is notable how appreciative the respondents were of good experiences, even when the experience was as basic as being believed.

Here are three specific take-aways from the survey:

·       Despite all their bad experiences, the respondents said that they want one-on-one care from doctors. People understand that they need individualized, on-going, informed medical care

·       The health system has a role to play in helping patients access financial and social programs. For some patients, this is very important.

·       Emergency rooms can be very difficult for these patients.