Long-term Disability Appeal was denied

starlily88

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Disability lawyers work on contingency so being able to afford them shouldn't be an issue. Disability status isn't determined by one's ability to go grocery shopping. Disability means that you can't work any kind of job due to an impairment. One can be able to go grocery shopping for a few hours but still unable to do sedentary work due to cognitive issues or the ability to rest for recovery. When I applied for SSD I told them that the inflammation I was experiencing prevented me from sitting for long periods of time and during the administrative law judge hearing I made sure I got up and moved around periodically to support this claim. Denial of legitimate disability claims by ME patients is a scam insurance companies use to get out of paying claims. This was the reason these companies pressed the National Institutes of Health to classify ME a mental disorder since benefits are cut off at two years for all mental disorders.
But so far NIH has not classified ME as a mental disorder, they view it as a real physiological disease.
Unless something changed......................... Yes, I paid my disability lawyer nothing - it was contingency basis.
 

Pyrrhus

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Anybody pursuing a Long-term Disability (LTD) claim for ME should read these reports on Brian Vastag's case:
https://www.meaction.net/2018/06/04...ntiffs-lawsuit-after-being-denied-disability/
https://www.statnews.com/2018/07/19/chronic-fatigue-syndrome-insurers-disability/

And here is a webinar for LTD lawyers or others interested in how to win an ME case:
https://www.lawline.com/course/long...claims-arising-from-mecfs-vastag-v-prudential

And here is advice for Long Covid patients from Brian Vastag himself ( @viggster ):
Washington Post said:
If you have short-term or long-term disability insurance through your job, take paid leave. Some states, such as California, afford up to a year of short-term disability benefits to all workers. The federal Family and Medical Leave Act also provides 12 weeks of unpaid leave while protecting your job. If you are self-employed, buy an individual long-term disability policy. If you have been unable to work for five months or longer, you can and should apply for Social Security Disability Insurance, as well. (Most long-term disability policies require claimants to apply for SSDI to receive additional private benefits.)
Source: https://www.washingtonpost.com/heal...7c5324-0712-11eb-9be6-cf25fb429f1a_story.html
 

starlily88

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Thanks for this case. I read most of the court case. Brian Vastag went from a Science Reporter at The Washington Post to a temporary, I think, test subject at NIH - I was particularly happy that Mr. Vastag wrote to NIH to tell his story - as NIH gives the least money to research ME/CFS. I am very happy that he won his case against the insurance company thru ERISA. It's exhausting, in my opinion, to get STD/LTD. Thanks.
 

starlily88

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This discussion thread is only about "Long-term Disability Insurance" (LTD), which is a type of insurance provided by employers in the U.S. Not everyone is lucky enough to have LTD through their employer or their spouse's employer.
Thanks for clarifying this point. I was very lucky, as my company was young, and the owners had just gotten LTD due to a few female employees getting ready for a baby and had to take 6 weeks off, so perhaps the STD paid for their leave. When I got ill, it was in place. You are correct in my opinion - because at that time when I had to switch to LTD - as I wasn't getting better, and diagnosed with CFS - I received 60% of my Pay which was terrific.
 
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Finally I feel somewhat lucid, so I’m going to try to post. I’ve been working full time with this illness for the past 7 years, and I’m getting to the point I can’t do it anymore. I’m only able to think clearly for maybe 3-5 hours a day. There are certain conditions that allow me an hour or so more time, but definitely not sustainable.
min 2015 I gave up social contacts and hobbies to be able to keep my job. But now my level of functioning has pretty much destroyed my dreams of a meaningful career.
I’m ok with being self directed, I feel like if I could be granted disability that the reprieve of stress from pretending to be well, and pretending that I’m actually putting in a full day of work would be worth losing my career at age 50.
My doctor classifies me as a mild case, so I don’t know what my prospects would be to get any kind of financial support from ERISA LTD or SSDI. I’ve actually thought about just stopping working, because I’m in pain so much and I just need to sleep, and can’t read or learn. But that doesn’t seem very fair either because I’ve already given up so much.
What the what? I guess any words of support would be appreciated. Could I stick it out, really? I actually don’t think so. This is the third year in a row I’ve taken unpaid part time leave because it’s literally impossible for me to work a full time job.

I guess I should add that I am also losing hope that I can actually get better. It’s been so long, and so many doctors have optimistically tried, and nothing had worked.
 

Judee

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@Bassaur, there is a lawyer on YT name Nancy Cavey. It looks like she handles disability and SSDI cases for ME/CFS patients.

You could also see about going to Workwell if you are near California. They help with disability cases but I would talk to a knowledgeable lawyer first. They do the 2 day cpet though and some people are not able to do that.

Also the website https://howtogeton.wordpress.com/social-security-disability/ has a lot of suggestions.

I know it's discouraging. I got turned down for SSDI all the way to the ALJ level.

From what I can tell it is very hard to get on it if you do not have a doctor working with you and willing to document the ways in which you are disabled. Many of us do not have that unfortunately.

Anyway, talk to the lawyer before doing anything.

There are also very good videos on YT by Jonathan Ginsberg. He is very straightforward about the process. Here's one of his videos <<< about changes to the Social Security process since Covid 19. I haven't watched it but it might help in some way.

I think both of these lawyers handle case in other states as well.
 

SnappingTurtle

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@Bassaur , there are so many possible consequences of changing to part time from full time work or to stopping work altogether. If you can live on your savings or with relatives for a while, there is a remote possibility you might regain functional status and eventually return to work. However, ME/CFS prognosis is not typically that encouraging and the road to marginal improvement is many years long and requires discipline and determination.

I know it is frustrating, but if you really need disability benefits, you should consult with an advocate or lawyer AND have a supportive ME/CFS specialist, just as @Judee suggested, before doing anything else. Without these as foundation, it will be a tough road to obtaining disability. You should also know that applying for and hopefully, being on disability is somewhat like a full-time job, too: lots of paperwork, follow-ups. The medical exams and testing cost money, too.

Stopping work because your body can simply take no more abuse may be the most immediate concern. Think about how much worse you might get, if you continue this way. This was my foremost concern and I was willing to forgo disability, to preserve the little functionality I have left. Not everyone has been lucky to get disability, so I am counting my blessings and hope it continues!
 
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Thank you both so much for your kind words. I really appreciate your thoughts, and I’ll talk with an attorney to learn more. I had been so hopeful that I’d get better and be able to continue to do the work that I loved, but the doctors were wrong in thinking I would get better. I’m sure the attorneys have heard it before, and they may have some helpful suggestions.
 

rel8ted

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There is also such a thing as vocational assessment. A good disability lawyer. Should help you with a professional vocational assessment that evaluates your ability to do ANY job based on your medical records. This is where making sure your doctors have written detailed notes is key!
 
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My doctor classifies me as a mild case, so I don’t know what my prospects would be to get any kind of financial support from ERISA LTD or SSDI.
I worked for decades with mild ME. It didn;t seem mild- but I get now understand how much worse ME can be for some of us.

The last 5 years became quite difficult. What enabled me to somehow get thru it was 1) home office; 2) self directed work; 3) use of federally protected leave...a federal thing that enables one to use one's earned sick leave...that otherwise I couldn't use it without trips to Doctors and Doctors notes. There is another federal thing called reasonable accomodation. Working with you to accomodate the problem.

Doctors notes, like a 5 year old. Ridiculous.

But pushing that last 2 years I think harmed me, and caused a deepening of the illness which then got substantially worse ...so now I'm not mild any longer and have many much more intense symptoms.

I'm wondering if your doctor is using the larger ME ranking systems, or just says your mild because- well your not bedridden.

Well mild can mean- Pretty Debililtated.
 

minimus

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@Bassaur - a couple of thoughts:

First, you have a better shot of getting private disability benefits if you are older than younger. LTD insurers obviously are a bit more willing to pay a claim to a 50-year old than a 30-year old. You just represent a smaller hit to their bottom line.

Second, the fact that you have been sick for ~7 years and have stayed employed works in your favor, especially if there is a paper trail of medical records and doctor's notes showing that you sought treatment but haven't gotten better and kept working anyway. It's not fair to people who have sudden onset severe ME, but lawyers will tell you that it is easier to argue that someone who has been sick for a while has made a "heroic" effort to keep working while dealing with a chronic illness.

Third, speaking from experience, you don't want to keep working if your ME is going from bad to worse -- it's a really dangerous combination. I worked for 20 years full-time with ME, started to head downhill slowly about six years ago, then rapidly three years ago, dragging myself to work in a virtual stupor for about six months. I finally couldn't physically get to work starting in late 2018. I am now housebound with moderate/severe ME -- meaning I am still able to take a shower every day, yay! If I could do it all over again, I would accept the risk of financial stress, even poverty, over being severely ill -- in pain, exhausted, and unable to leave my homes for weeks/months at a time. Working as my ME got worse is probably the biggest mistake I have made in my life.

As far as advice about what steps to take:

First, you need to get a copy of your employer's disability insurance policy contract. This is the document that lays out the definition of disability, what exclusions apply, and what your monthly benefit would be. You don't want the plan summary but the actual contract, which is typically 30-60 pages long.

Second, you are going to want to talk to your doctor to let them know you cannot work any longer, that it is making you increasingly ill, and that you are having real trouble fulfilling your job functions. (Note: you don't want to risk being fired for poor performance, because if that happens you will no longer be covered by your employer's disability policy.) Hopefully, they will be supportive -- because they are going to be tasked with telling the insurance company why they believe you are too disabled to keep working. If they aren't supportive, look for another doctor.

Third, consult with a disability lawyer, one who has handled ME/CFS cases in the past. Don't hire a general private disability lawyer -- you need someone with experience with ME/CFS. A good lawyer will usually review your disability policy and have a free phone consult to review your situation. On the plus side, these lawyers have experience getting benefits for or winning lawsuits on behalf of ME patients. They also know what types of medical evidence (doctor's letters, statements, and notes, as well as testing) will support your disability claim. On the minus side, they can be quite expensive. Also, a lot of lawyers will tell you that a 2-day CPET is mandatory, though this is a grueling test that is ill-advised if you are already sick and heading down hill. One alternative is to get a neuropsychiatric evaluation, which is especially useful if you have cognitive issues, by a psychologist with experience with ME/CFS.

While I agree that it is a lot of work to win a private disability insurance claim, it is less effort than going to work. Also, a good disability lawyer can help with a lot of the administrative tasks, like obtaining medical records, helping you answer questionnaires, and interacting with the insurance company on your behalf.
 

nyanko_the_sane

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One thing that strengthened my case was that everyone was on the same page, friends, family, therapist, and doctors all told a similar story.

It is true that the older you are, the more the rules and laws work in your favor. I didn't have a chance at getting disability when I first became ill.

If your doctor questions how ill you actually are, then you need another doctor. You don't want a doctor stating on record that you are not as sick as you say you are.

I think the Covid situation worked in my favor as the hearing with the ALJ was over the phone. I often look much better than I feel. Having my hearing in my bed was another added bonus.
 

I AM

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Finally I feel somewhat lucid, so I’m going to try to post. I’ve been working full time with this illness for the past 7 years, and I’m getting to the point I can’t do it anymore. I’m only able to think clearly for maybe 3-5 hours a day. There are certain conditions that allow me an hour or so more time, but definitely not sustainable.
min 2015 I gave up social contacts and hobbies to be able to keep my job. But now my level of functioning has pretty much destroyed my dreams of a meaningful career.
I’m ok with being self directed, I feel like if I could be granted disability that the reprieve of stress from pretending to be well, and pretending that I’m actually putting in a full day of work would be worth losing my career at age 50.
My doctor classifies me as a mild case, so I don’t know what my prospects would be to get any kind of financial support from ERISA LTD or SSDI. I’ve actually thought about just stopping working, because I’m in pain so much and I just need to sleep, and can’t read or learn. But that doesn’t seem very fair either because I’ve already given up so much.
What the what? I guess any words of support would be appreciated. Could I stick it out, really? I actually don’t think so. This is the third year in a row I’ve taken unpaid part time leave because it’s literally impossible for me to work a full time job.

I guess I should add that I am also losing hope that I can actually get better. It’s been so long, and so many doctors have optimistically tried, and nothing had worked.
The SSA published a document on getting SSDI when you have ME/CFS. Read that as it’s very helpful.
Absolutely get the 2-day CPET test done. Betsy Kellher at Ithaca College in NY wrote my disability report based on my test results and it was irrefutable. The report takes her about 8 hours to write. It gives the judge the hard evidence that s/he needs to see because it proves you are disabled. It was the most compelling piece of evidence in my hearing. It runs $2-3k. You also will get insights as to your level of unfitness and how you can build your exercise tolerance.
Be sure also to see specialists. My psychiatrist and rheumatologist wrote letters for my attorney about my level of disability. I also got a detailed letter from an ME/CFS specialist that I had to pay for and was worth it. My attorney said the letters were very compelling. I also had a ton of medical records and a great work history before becoming unable to work. I filed for disability the day after I stopped working. Hopefully you can go out on short term disability so that you have an income and then switch over to LTD.
Hire an attorney right out the gate. They are well worth the $6k if you get a good one. I used Friedman Law Firm out of Alabama. They had an attorney in my state of Pennsylvania. Aimee told me she handles cases all over the country. She had prior experience with ME/CFS cases before winning mine.
Consider getting a service dog if you have anxiety. I have trained my dogs myself. It’s not hard.
 

I AM

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Don’t look your best when you go to your hearing. What I mean by that is, we usually would do hair, makeup, jewelry and be very professionally dressed. Don’t do those things because you want the judge to see that you are ill. I didn’t have the energy to do those things anyway. Geez I can’t remember the last time I wore makeup and heels. I went to my hearing with a neck gaiter around my head because I couldn’t style my hair. And the night before I had insomnia so I was not having a good day, which probably was in my favor.
It’s not enough to prove that you can’t do your job. You and your attorney have to prove that you can’t do any job — including being a Walmart greeter.
 
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[QUOTE=" I used Friedman Law Firm out of Alabama. They had an attorney in my state of Pennsylvania. Aimee told me she handles cases all over the country. She had prior experience with ME/CFS cases before winning mine..[/QUOTE]

@I AM would you be willing to share your lawyer's last name? I am on the hunt for a good SSDI attorney
 

I AM

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[QUOTE=" I used Friedman Law Firm out of Alabama. They had an attorney in my state of Pennsylvania. Aimee told me she handles cases all over the country. She had prior experience with ME/CFS cases before winning mine..
@I AM would you be willing to share your lawyer's last name? I am on the hunt for a good SSDI attorney[/QUOTE]

Aimee Dugas