A long, technical support letter helped me to win my SSDI case for ME/CFS!

Note – this blog is geared toward an American audience as it only applies to federal disability in the United States. I am certainly no expert on disability and the thoughts below reflect my experience only, while acknowledging that there are many ways to approach disability benefits. 

I will admit to bumbling through my Social Security Disability Insurance (SSDI) case. No matter how many Facebook (FB) threads and informative blogs I read from the Sleepy Girl’s Guide to Disability – a terrific resource if you have not discovered it yet – I always felt rather befuddled and a little uneasy, worrying that I was missing something important. I have so much gratitude to the many knowledgeable people on Facebook who helped me with my case and want to repay such kindness in any way I can. 

I’ll jump to the chase: by some stroke of luck, I won my case without even having to go to the hearing. The supporting letter from my ME specialist played a big role.

One of the issues that kept coming up for me were letters from my doctors. When is the best time to submit them? Is it better to have a brief letter or one that goes into great detail about how my disease – ME/CFS – impacts my function? Should it be directed to a lay audience or hit the science hard? I read several of The Sleepy Girls posts about support letters and saw some dazzling ones, but I still felt uncertain about what the right course was for me.

Initial SSDI application and reconsideration

In my initial application, I included a letter from my GP and husband, but not my ME specialists. I don’t exactly recall why I made this decision, but it likely had to do with my ME docs telling me that I should wait until I was denied and submit letters before my hearing. Not saying this is recommended, but it is how I did things. The benefit of this approach is that you will have a fresh letter just before your hearing, with all additional medical evidence you may have accrued since applying.

I was denied within two weeks of applying as if someone rubber-stamped my applications. I quickly retained Shook and Stone (a large law firm serving Nevada) but doubted if that was the right decision. Would I be better off with a smaller firm with experience arguing ME cases? Should I have gone with the firm my LTD company offered to me? I am usually not a worrywart but I found myself second-guessing all of my decisions. Would the letter from my ME doc have circumvented the quick denial? It is hard to say. 

Within a week of S&S filing for reconsideration on my behalf, I was denied, again, with the same rubber stamp. S&S told me to hang tight and wait for my hearing date, which would take more than a year to receive. True to form, one year later I was told that I would be assigned a hearing date as soon as one was available. Turns out I would have to wait another half year (a full two years after I first applied). Meanwhile, I was told to wait until the date approached to finally speak to an attorney. Once again, I felt like I was flying blind. 

Soliciting letters from my specialist

About three months before my hearing date, I told my ME doctor it was finally time: I was ready for that letter. She invited me to work collaboratively and take a stab at a first draft (in hopes of saving a little money). She informed me that her letters were largely successful and that most of her patients won their cases.

I used the RFC form specific to ME/CFS to help structure my contributions to the letter. I imported the questions into a word document and started writing. This helped me to focus on how my illness affects my function, which is what really matters to the Social Security Administration (SSA).

My doctor returned the letter with her parts, providing some of the science and evidence to back up the limitations I wrote about. She also included items from my case that I had not thought of. It is easy to lose sight of the bigger picture when lost in the medical weeds much of the time.

The letter clocked in at 12-pages (!) when it was complete, again, calling into question whether a long and highly technical letter was the way to go. When I inquired with friends on FB about appropriate length and content, those with extensive experience with SSA said that a longer letter be an advantage, especially given that a medical expert was being called to my hearing. Still, I felt a little uneasy but I submitted it anyway.

It is important to mention that I have been ill for a long time and have amassed a lot of information on my case. I am also extremely fortunate to have some excellent doctors who left no stone unturned. I have been extensively poked and prodded over the years and I realize that not everyone has this level of information to inform their case. For those of you who may not have a lot of testing, just remember that SSA cares most about how your illness impacts your function. 

In the absence of a lot of testing and data, be sure to tie your case and medical findings to SSA’s guidance for evaluating cases involving chronic fatigue syndrome (I know, crappy name, but this is the name SSA uses). Not a lot of testing is required to meet the case definition. It is also worth looking into the concept of “equalling” a listing, especially if you have co-morbidities that fall under SSA’s listings (sadly, CFS is not included).

Finally, I get to speak to my lawyer!

Three weeks before my scheduled hearing, I finally got to speak with my lawyer, who was superb! The first thing she said to me was, “Wow! Your letter is the best one I’ve ever seen! I learned so much about ME/CFS!” She said it was a huge asset, especially given the fact that the medical examiner would have to address any questions the judge had about the contents of the letter. We spoke at length, and at some point, my lawyer asked if she could go away to digest our conversation and call back with more questions. I felt so validated.

She told me I had a slam-dunk case and that I am more disabled than I think. I am at about 20-40% of my former function and somehow I thought that the fact that I had the odd decent day and could drive shorter distances would be problematic. It wasn’t, though the administrative law judge (ALJ) did grumble a little about my somewhat limited ability to drive is inconsistent with all that was written about me. 

A surprise!

The call came the next morning when my attorney informed me that the ALJ granted me a favorable on the record (OTR) decision and that the hearing was not necessary! I was overjoyed about not having to do a hearing by phone (COVID protocol) and stumble over questions from the judge at 8:00 in the morning! 

Less than two weeks later, the ALJ’s decision arrived in my mailbox. He placed a lot of weight on the fact that all of my letters converged on the same points, and that it was consistent with my testimony. My age (52) also likely factored in as did the fact that he ruled that my acquired job skills do not transfer to other occupations within my residual functional capacity. Based on all of these factors, he ruled that there are no jobs that exist in significant numbers in the national economy that I could perform. Whew.

I wanted to share the letter that my doctor wrote for me (with some of my help) as it has some excellent boiler-plate language about ME that might be helpful to others. At least in my case, a more detailed and science-rich letter paid off!

Best of luck to all of you who are still going through the SSDI process! 

PS – I realize that the heavy reliance on SEID criteria will make some people bristle (those who advocate for use of ME-ICC criteria), but my doctor built her letter around the case definition used by SSA for ME/CFS. 

In case you missed it, Kantor & Kantor Law hosted an excellent disability benefits chat with Dr. Chris Snell (from Workwell Foundation), Andrew Kantor (an expert on ERISA law, which covers long-term disability benefits), Moselle Leland (SSDI lawyer), and Dr. Theresa Dowell (ME/CFS practitioner). If you are looking for an ERISA lawyer, Andrew Kantor knows ME better than most medical professionals. 

For those interested, click here to see a copy of the redacted letter from my doctor. I benefitted so much from seeing other letters.

2 thoughts on “A long, technical support letter helped me to win my SSDI case for ME/CFS!

  1. Caroline… THANK YOU for this post! I am right now in the midst of trying to finish my Affidavit for my ERISA case with Hartford Insurance… and then SSDI will be next. I’ve been working on it for 3 weeks and am almost done (maybe) I hit a PEM wall and had to take the morning off and as soon as I finish this post, back to the “disability letter salt mine.” I can eventually write well (writing papers used to be a breeze and a joy before this), but it is monumentally harder and slower than it was prior to becoming ill and takes me an insane amount of time now. I feel like I’m on draft 100 of this document, as my cognitive function is so different now.

    I was just taking a “brain break” (I get PEM from cognitive exertion as much as physical so can only write in short spurts crazy stuff this ME/CFS.). And, I “accidentally” came across your post. I don’t believe that’s “coincidence.”

    It was a beautiful encouragement to read your post. Your history has many similarities to mine. Thank you for taking your time to share so much useful information!! It is greatly appreciated!!!

    ~ Dawn


    1. Ug! Disability is such a stressor and takes so much work and executive function! Are you still in the salt mines (lol)? Your description of your writing process sums up mine as well. Eventually…I can string a few sentences together that make sense. I hope you are happy with your letter and that it wins you your cases! Best of luck to you!


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