By Steve Krafchick and Suzanne D. Vernon
In April 1999, the Social Security Administration (SSA) published Social Security Ruling (SSR) 99-2p “Policy Interpretation Ruling titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)”. This was a very important ruling that provided disability compensation for patients suffering with ME/CFS. However, this ruling was not without limitations and controversy. SSR 99-2p was based on 1994 case definition criteria that described the symptoms complex. The SSA cannot make disability decisions on symptoms alone and requires objective evidence to establish a person has a medically determinable impairment (MDI) of ME/CFS. An MDI must result from an anatomical, physiological or psychological abnormality demonstrated by medically acceptable clinical and laboratory diagnostic techniques. This boils down to medical evidence = signs, symptoms and laboratory findings
Social Security replaced the 1999 ruling on April 3, 2014 with SSR 14-1p “Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)”. This ruling still requires objective evidence to demonstrate MDI of ME/CFS. But this ruling uses adapted 1994 criteria and considers to some extent both the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC). Consideration of the CCC and ICC in SSR 14-1p added some important aspects to this ruling. Post-exertional malaise is now listed as common diagnostic symptom (this was not present in the SSR 99-2p). Additional medical signs (e.g., frequent viral infections with prolonged recovery, sinusitis, ataxia) and co-occurring conditions (e.g., sensitivities to foods, odors, chemicals, medications, noise) can now be considered as evidence in establishing MDI for ME/CFS. A CPET (Cardiopulmonary Exercise Test) performed over two consecutive days and a positive tilt table test can provide objective evidence of disability that the SSA will find credible.
If you are applying for Social Security disability, it is very important that you be as proactive as possible in order to document and obtain the required evidence. Please review SSR 14-1p carefully. Read it HERE. It is relatively self-explanatory but one of the things to keep in mind is that the evidence needs to come from a licensed medical or osteopathic doctor. Also your doctor must document medical signs (there are things that be objectively measured) for at least 6 consecutive months in order to use these as evidence.
The presentations by the FDAs Dr. Sandra Kweder reminded us of the lack of consensus and confusion regarding ME/CFS definition and the need to define the core signs, symptoms and decrements in specific functioning. It is apparent from this revised ruling that the important clinical observations included in the CCC and ICC are helping to clarify these core signs and symptoms. The timing of this ruling may also be helpful to the work of the IOM committee as these experts determine what are the clinical diagnostic criteria for ME/CFS.