Friday, June 20, 2014

2014 Changes to Social Security Ruling for ME/CFS

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.

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:
    1. Currently working?
    2. Severe impairment?
    3. Does impairment meet listing? (NO listing currently for ME/CFS)
    4. Can the person do past work?
    5. 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.


  1. Anonymous9:41 AM

    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.

    Eventually, 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....

    1. Sounds familiar! As I see it, we have 2 HUGE problems with our disability system now:

      1 - 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.

    2. Sounds like the first Judge really needs to be smashed in the face. What a jerk.