FAQ - Social Security Disability & CFS

This is a companion to Ten Steps To Winning A Social Security Claim For Chronic Fatigue Syndrome.

In case you are extra curious and the ten steps are not enough, here's where you can read or ask more. It is a work in progress. Input/corrections/additional questions welcome.

What is this list & where does it come from?

I have been slowly gathering and putting together this list based on stories from other people who applied, articles from disability lawyers, and endless wanderings through the deep, dark, cryptic annals of social security policy manuals.

This is a work-in-progress list of things you can do to improve your application and up your chances. I am open to more ideas and would love to hear your experiences. Please send me your thoughts, suggestions and lessons learned. Your story can help others.

Are these steps the same for both SSI and SSDI?

Yes, the application is exactly the same for both programs, and you apply the exact same way. The only difference is one financial form. If you are applying for SSI you will need to fill out a financial form and have a phone interview about your finances. Here's what you need to know about SSI and finances.

Are these steps the same for Long Term Disability through my employer?

No. Unfortunately, I do not know a lot about LTD regulations. I have been told that having a supportive doctor and great doctor visits is really important for LTD. Please take a look at steps two and three above, they will help. I cannot comment with confidence on the other steps (input is welcome!). Here's some great links I got from someone who won his claim. Here's A great blog by an LTD whistleblower! (She used to work for an LTD company). Here's A really interesting website with videos and stories about each different LTD company. Here's A great story about someone who won his LTD claim by ditching his doctor and getting a better one

Why are you calling it CFS? Are you in the dark ages?

“Chronic Fatigue Syndrome” is what Social Security calls it. This is just my opinion: I would suggest writing this on your application materials and encouraging your doctor to do the same. This may irritate you, but believe me it will irritate you more if your claim is denied because your Claims Examiner is confused.

Someone at Social Security told me I can’t get on for CFS or it’s nearly impossible to get on or CFS doesn’t exist or I am not eligible to apply

Let it go. People at Social Security say weird things all the time. The Social Security policies are very complex and confusing, and even people who are well-meaning and trying to help often give out the wrong information.

They may be nice people who are really encouraging and supportive, or they may be mean people who dismiss your concerns, or they may distracted people who are just really busy. Either way, means nothing.

Just put together the best possible application, and your claim will be approved. Eyes on the prize.

Where can I learn more about the Social Security ruling on CFS?

Here’s a link to the ruling. Be warned, it is going to make your head hurt.

I have also put together this written-in-plain-English list with just the Medical Signs & Symptoms from the ruling.

There is a great article on explaining more details of this ruling at the Massachusetts CFIDS website. Unfortunately, they have left out the section on diagnostic symptoms. I am sure this was just an editing mistake. I have sent them an email so hopefully they can add this back in (or maybe it will already be back in by the time you read this). Other than that, there are lots of good suggestions here.

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