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.
Adjudicator Considers:
- Symptoms
- Lab Results
- Medical Signs
Sources for the revised ruling included:
- CCC (Canadian Consensus Criteria)
- ICC (International Consensus Criteria)
- CDC’s criteria (1994)
- Past SSA experience
Symptoms (from CDC 94):
- Profound fatigue 6 mos or more – persistent or relapsing
- Memory or concentration problems
- Sore throat/swollen glands
- Muscle or joint pain
- Unrefreshing sleep
- PEM
Look for add’l symptoms (some of these are new):
- Muscle weakness
- Disturbed sleep patterns
- Visual difficulties
- Orthostatic Intolerance (OI)
- Respiratory difficulties
- Cardiac abnormalities
- GI symptoms
- Urinary or bladder problems
Require objective medical evidence to support doctor’s
diagnosis:
Medical signs:
- Swollen lymph nodes/sore throat
- Tender points (from FM)
- Frequent viral infections with prolonged recovery (new)
- Sinusitis (new)
- Extreme pallor (new)
- Weight changes (new)
Laboratory Findings:
- 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:
- FM
- TMJ
- IBS
- IC
- Raynaud’s
- Migraines
- Myofacial pain syndrome
- Sjogren’s Syndrome
- Chronic lymphocytic thyroiditis
- New 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.
Q&A
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.
The judge is SUPPOSED to consider symptoms; mine dismissed all of them as "exaggeration" and "imaginary hypochondria". When I got a C-Reactive Protein test 10x normal to prove there was something very wrong physically, he refused to acknowledge it -- I think he was hoping that one sheet of paper would get lost in the foot-high pile and Court of Appeal wouldn't see it and would continue to accept his pronouncements of "you don't look sick" as proof that I'm faking.
ReplyDeleteEventually, we were assigned a different judge, who had been a disability lawyer and thus knew how his clients were affected by CFS. Finally it wasn't an uphill battle of first having to prove CFS exists, that it's not "another name for depression", that it can be severely disabling....
Sounds familiar! As I see it, we have 2 HUGE problems with our disability system now:
Delete1 - There is a presumption of fraud and the responsibility is on the sick person to prove they are sick (vs. our justice system which is based on innocent until proven guilty) - our disability system is based on never letting a fraudalent claim get thru vs. never letting a disabled person go without support - again, opposite of the justice system.
2 - EVERYTHING comes down to which judge you get and they are very subjective! I happen to live in a state that is among the worst in the nation for SSDI approval rates, and 3 of our 5 SS judges rate among the bottom 15% in the entire nation in approvals.
Thanks for sharing your story.