Did you hire an attorney for your initial filing?
No. My GP was more than willing to help and friends helped pay for all the testing since my insurance company would not always do so. My family did nothing to help me at the time although they eventually believed that I had a disease and wasn't just depressed.
Did you hire an attorney for your appeals?
Yes, I finally had no choice. I went through the best attorney in the area. He was appalled. He said I should have gotten benefits on my first filing because my medical records were so detailed and consistent over a long period of time.
Did you win your claim?
Yes, just barely. When I got to my adjudication my attorney was late so they showed me my file less than five minutes before I went before the judge. Over half of the documentation I had given the SSA was missing - and my copies were at home. We were given two extra weeks to prove my case.
How long did the entire process take?
How I Prepared
I got my initial diagnosis and some testing (qEEG) from a CFS expert, but my own doctor took it from there. I went in every three months and I kept a loose journal of symptoms. I showed her the SSA's SR-99 and she helped me get appointments for tilt table testing with a cardiologist who did a thorough work up. I couldn't even pass the treadmill testing. I was also seeing a therapist to deal with the grief of losing my entire life and he also filled out paperwork, but said I had no psych disorders. When some experts falsified my testing because it wasn't consistent with their idea of CFS, my doctor threw the tests out.
The Filing & Appeals Process
The most frustrating part of the appeals process was the psychiatric consults - some of whom had never even met me. They consistently wrote reports that directly conflicted with the evidence gathered by my doctor - I often wondered if they even bothered to read my file. I took to bringing an independent witness with me at all times and it still happened once or twice.
Even worse there was no formal way to make a complaint to the SSA so the consultants knew they could get away with doing whatever they wanted.
At the adjudication hearing, when my records were missing, the person responsible for finding jobs I could do suggested bookkeeping yet testing showed I had adult onset acalculia and couldn't do calculations. Not to mention that I had no bookkeeping skills or experience and it was extremely unlikely that I could walk out and get a bookkeeping job.
I intellectually understood the process, but at the same time in practice it was very nonsensical and surreal.
The judge was sympathetic, but said he'd never heard of neurological damage in CFS - apparently no one had ever gotten documentation to show him before. But, it was the neurological testing that won my case. Objective evidence of brain deficits trumped SSA consultants who fabricated reports saying I had no cognitive issues when the testing they had done also clearly showed I did.
One of the issues was finding honest and ethical doctors and consultants. When I filed a formal complaint with the APA in one case, it turned out that the neuropsychologist who falsified my cognitive testing was on the ethics panel for the local APA. And he never would release my testing records to me even though I went through the all the required procedures and paid for them - twice. I finally gave up because I didn't have the energy to keep fighting him.
For me it was a matter of throwing out falsified reports and getting testing from honest practitioners - a very expensive process my insurance wouldn't always pay for.
- Always have a witness and don't be afraid to walk out if you are treated badly.
- If your doctor won't work for you 100% run and find another who will. Consider seeing an expert CFS clinician for referrals to professionals who do testing and have experience with CFS patients so the correct testing is done.
- I'll say it again. Follow the SR-99 ruling. Make sure you have objective testing such as tilt testing, EBV titers, qEEG documenting your deficits.
- If you have no family or friends to help you with the massive paperwork consider hiring a lawyer. But get the testing first.
- Keep multiple copies of your file