Research Findings
Below are resources and materials created from the survey data. There is a content warning for the resources and materials as they discuss experiences with ME/CFS and PEM and may cause emotional distress.
Additionally, please note that some materials were based on preliminary data and do not fully represent findings from the final dataset.
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ME/CFS
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DISABILITY JUSTICE
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REST
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CARE
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ADVOCACY
✳︎ ME/CFS ✳︎ DISABILITY JUSTICE ✳︎ REST ✳︎ CARE ✳︎ ADVOCACY
To my peers, the ME/CFS community, and all others who may stumble upon this:
In 2022 my life was upended by ME/CFS. I lost my job, most of my relationships, my housing, my ability to walk, my ability to eat most foods, and even temporarily lost my ability to speak for two years. In 2023 I was so ill from trying to exercise my way out of this illness, that I had to get airlifted across the country.
People with ME/CFS are experiencing dire consequences from medical abandonment, including what can only be described as physiological torment. Medical and societal neglect is killing us. The current mainstream “treatments” that are being offered to people with ME/CFS are not treatments at all; they are shoddy bare-minimum attempts at concealing rampant institutional and systemic neglect. In consequence, we continue to suffer. This study helps elucidate some of the experiences of over 500 people with ME/CFS.
- Dr. V— Participant with ME/CFS