Getting Social Security Disability/Supplemental Income (SSD/SSI) can be a lifeline for financially beleaguered people with CFS (ME/CFS) but the application process is often lengthy and difficult. Anecdotal reports from physicians and patients suggest getting disability may be more difficult for CFS patients yet documentation of success rates is lacking and little hard data exists on what works best in the disability process.
We’re attempting to rectify some of those problems in this online survey of people with ME/CFS who have applied for Social Security Disability and/or Supplemental Income Security (SSI).
Some of our goals include getting an idea of success rates and if they’ve changed over time, what kinds of tests successful applicants use, what kind of diagnoses work best, how long the process usually takes, how important using CFS professionals are to success, and more.
While this online survey is not representative of the ME/CFS community at large it does give us a snapshot of an important part of the community. We’ll use the information gathered to provide a report to the federal advisory committee on CFS (the CFSAC) and the Social Security Administration on the “State of the Social Security Disability Process in the Online CFS Community” and to inform future disability applicants of factors that might help them be more successful. Please answer the survey before April 25th to allow us to present the report to the CFSAC.
If you’re not well enough to do the survey on your own, feel free to ask someone to do it for you. (You can also do the survey in multiple passes by saving and returning.). Only one survey per computer, though –if multiple members of your household have gone through the disability process you’ll need to use more than one computer.
All personal information such as name and email address (if you chose to provide them) will be kept confidential. We hope you will encourage others who may not have heard about the survey to take it.
Denise Lopez-Majano (Speak Up About ME)
Cort Johnson – (Phoenix Rising An NEID Corp)