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Applying for Disability? The Guidelines for CFS Have Changed

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By Toni Marshall • • May 3, 2014

Applying for Disability? The Guidelines for CFS Have Changed
By Toni Marshall

The new CFS disability ruling differs from Social Security Administration's 1999-2p ruling in that the International Consensus Criteria for ME, published 2011, and Canadian Consensus Criteria for CFS, published 2003, were adopted along with the CDC's CFS criteria.

If you are considering applying for disability, I recommend reading the new ruling here.

The new ruling was easier to read than I expected.
  • The tilt table test to establish OI (Neurally Mediated Hypotension) is still considered medical evidence in CFS even though many doctors consider it too symptom-causing in OI patients to recommend it anymore. 

  • EBV titers within certain parameters are still part of medical evidence relevant to CFS. 

  • SSA requires a clinical history of at least 12 months to establish evidence of neurological symptoms of CFS such as memory problems and unrefreshing sleep. 

When I sent in my answers to the daily activities questionnaire (which arrives a few weeks after SSDI application is submitted), I enclosed a copy of the guideiines with a statement of my own letting SSA know in what ways the ruling applied to my case. As a former state auditor, I knew that not every SSA employee with responsibility for reviewing CFS cases would look up the ruling. I won disability soon thereafter. 

With my application, I sent self-obtained copies of doctors' records along with a list relevant to my visits and tests with date and doctor names. Doctors have no obligation to respond to SSA's requests for information about disability in their patients. In fact some doctors you may have seen for relevant symptoms may have no idea you were or had become disabled. Therefore, I thought it important to ask all those doctors with relevant data or relevant records, even from many years ago, before applying for disability.

For example, years before, I had a serious B-12 deficiency which causes great fatigue. After correcting the problem with B-12 shots, I was still extremely exhausted. So I asked another doctor I was seeing for another test to see if I was able to absorb B-12. I had a nuclear test that substantiated adequate B-12 absorption. I didn't apply for disability for 4 more years but those records establishing exhaustion with seemingly no physical reason for it were helpful to my disability case.

For an excellent Q&A about how to apply for SSDI, how to prepare for a hearing, and how to win on your first try, go here.

Toni Marshall is coordinator of the (Northern Virginia) NOVA CFS/ME, FM, & OI Support Group, also welcoming those with IC, MVPS/D, POTS, NMH, Vulvodynia, Chronic Lyme, Post War Syndromes, IBS, and overlapping symptoms and syndromes.
Email Announcement List
Phone: (703) 968-9818 - Elly, 10 am - 6 pm Weekdays or leave message.
(410) 647-7578 - Toni, 11 am - 7 pm, Daily, or leave message.

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