I watched the CFS Advisory Committee (CFSAC)'s spring meeting earlier this week online, and one of the presentations I found most informative was about recent changes that have been made the US's Social Security Ruling for ME/CFS. Knowing exactly what is in the ME/CFS ruling will definitely help me when I reapply in a few years (I was awarded partial past benefits last year but nothing ongoing), though much will still depend on which adjucator and which judge you are assigned.
In the interest of being timely, I am going to mostly just paste my notes here that I took while I was watching the presentation, with a bit of extra explanation where needed. Please let me know if anything is unclear or if I got anything wrong. I tried to type my notes as I was listening/watching, so hopefully it is accurate, though I may have missed some points.
CFSAC Mtg 6/17/14
Social Security – New ME/CFS Ruling
Mark Kuhn – Social Security Administration
New ruling was effective April 3, 2104.
Replaces previous ruling – provides guidelines for adjudicators (those who review disability applications).
ME/CFS can constitute a Medically Determinable Impairment (MDI) and can be severe and disabling.
Elevated EBV titers Abnormal MRI scan NMH (new) – [my note: Oddly, they’ve included NMH here but not POTS – potentially a big problem for some patients]Other findings, such as exercise test and sleep study (new)
Adjudicator should consider add’l findings as research continues to advance, for example elevated HHV-6.
Look for co-occurring conditions such as:
FMTMJIBSICRaynaud’sMigrainesMyofacial pain syndromeSjogren’s SyndromeChronic lymphocytic thyroiditisNew allergies or intolerances (new)Sensitivities to noise, odors, chemicals (new)Loss of thermostatic ability – chills, night sweats, intolerance of temps (new)
5-Step Evaluation for all SSD applications:
Currently working?Severe impairment?Does impairment meet listing? (NO listing currently for ME/CFS)Can the person do past work?Can the person do any work?
There is no listing for ME/CFS which means that ALL ME/CFS applications will have to go through steps 4 and 5.…or could meet an existing listing for another condition, such as “undifferentiated or mixed connective tissue disease” under immune disorders listing.
A listing has the weight of law and takes longer to get through the system than this type of ruling. A ruling is binding for adjudicators but is not binding in a court of law.
Could this ruling be a first step toward a listing for ME/CFS?
Maybe someday– need more research and eventually testing that can prove ME/CFS and indicate severity. SS would move forward as soon as there is medical evidence to support a listing.
Numbers for those with ME/CFS who applied for SSDI and those who were approved at various stages?
No current data available. Past data has been presented at CFSAC and should be available on their website.
Is exercise test or neurocognitive testing sufficient to establish disability?
Those would be sufficient to establish MDI, but establishing degree of disability will still rely on steps 4 & 5.