The cost of testing and travel are fairly high, estimated around $8K all in. Question is does she provide more value in a disability/diagnostic situation than any other doc? Lawyer thinks any neuropsyche testing would be adequate.
If you absolutely must do neuropsychological testing, Gudrun Lange may be a good one to do it, as she is close with Benjamin Natelson and reportedly has significant experience with ME patients. But she is definitely not cheap.
But if you're lucky enough to be able to tolerate a CPET, you may get better results from Workwell's EEG test instead:
We did the NPE with Dr. Lange. I was impressed. Her report was solid. Probably a slam dunk for SSI. I am hopeful, but realistic about her private disability plan as those seem like more of a scam thanks to good lobbying.
If the results of a 2-day CPET and a neuropsych test were abnormal enough, you have a decent shot of getting on private disability.
There are a handful of lawyers who specialize in ME/CFS disability cases -- Andrew Kantor, among others -- who will offer a free consult to answer questions and provide some guidance on do's/don'ts in the private disability application process. I would avoid disability lawyers who are not knowledgeable about how disability insurers evaluate ME/CFS applicants.
My only other advice is to make the initial private disability application -- the personal statement, attending physician's letter, test reports -- as convincing as possible. The application needs to clearly document both the objective evidence of physical (not psychiatric) illness and the reason the illness is disabling. The attending physician's statement is particularly important.
Getting the initial app approved is just a lot easier and cheaper than trying to get the insurer to reverse the denial through an administrative appeal or lawsuit.
Does anyone have an example of a well written presentation? We are already in the appeal stage, did not have the CPET or NPE during the fist submission. We did talk to an attorney yesterday we had been consulting with, after sending him the additional evidence we had gathered. We had consulted two other attorneys and the response has been there is not enough $$ available to take this on a contingency basis and both said they would do it on an hourly basis, and both said they would have a hard time recommending that as it is probably uneconomical to do that,
The attorney we talked to yesterday stated that he could do the appeal as well but feels with the CPET, NPE and a report from her ME/CFS doc he probably adds no value. We are paying an additional fee for the ME/CFS doc to write a detailed report that includes education, with footnotes, and how the NPE/CPET tests show disability. With LTD he states it’s a bit unpredictable regardless. The insurance lobby has influenced law and they basically get a get out of jail free card as they conduct their own internal appeal. You can take it to the next level in court, but they know that is uneconomical and would probably be more than anyone with ME/CFS could endure.
Good news is he said this evidence is probably a slam dunk for SSDI and disability she has as a school teacher.
So I will be one writing this appeal, an example of a good one would be helpful. Will also submit my observations of her decline. Her school principal and assistant principal are writing letter, she worked as a teacher for 27 years. Also her attendance record, she basically worked until she could not. We also started with a new PCP who did extensive testing of her pulmonary and cardiovascular systems to eliminate those as a contributing factor, these were done by pulmonologist and cardiologist. One thing is if you need to take them to court, you cannot introduce additional evidence, Private LTD seems to me to be heavily stacked in favor of the insurance company.
@sloopercat - I'm not sure if you are helping your daughter, your mother, another relative, or a friend, but if she worked as a teacher for 27 years until she couldn't anymore due to worsening ME/CFS, she certainly deserves to have her long-term disability application approved. I'm sorry she is in this situation.
Unfortunately, I have not had to go through an appeal myself, so I cannot offer you an example of a successful appeal.
One big advantage of hiring a lawyer for the appeal is the signal it sends to the disability insurer that if it upholds its denial on appeal, you have lawyered up and could file a lawsuit. Though ERISA offers protections to private disability insurers (e.g. no punitive damages, a narrow set of criteria for a federal judge to reverse the denial), those insurers don't want to spend money paying their lawyers to prep for and argue a court case that they are likely to lose. Disability consultant Linda Nee, who writes a regular blog about private disability insurance, strongly recommends hiring a lawyer for the appeals process for this reason, as well as to avoid mistakes.
If you do most of the legwork in terms of collecting letters/reports/records, that will cut down on hourly legal fees. The lawyer's role, then, is just to suggest edits to documents that will strenghten the appeal, and to submit the documents on your behalf.
Off the top of my head, two other suggestions come to mind:
I'm not sure who conducted the 2-day CPET, but if it wasn't Betsy Keller at Ithaca College, you could send her an email (just Google her to find her email address) and ask if she can write a letter that explains in plain language why the CPET results prove both objective physical illness (not deconditioning or a psychiatric problem) and disability. Having a second renowned expert weigh in would increase the strength of the appeal.
You also might try to get in touch with Dr. Richard Podell. He is a retired ME/CFS physician, but as of a couple of years ago, he offered to serve as a consultant, writing letters for disability applicants with ME/CFS after conducting phone interviews and reviewing medical records and test reports. Gudrun Lange knows him, I think, so she might be able to provide you with his contact information if he's still working as a consultant. Having a second physician submit a strongly worded letter would strengthen the appeal.
It’s for my girlfriend of 12 year. We have had three lawyers advise us it is uneconomical for us to hire them for this appeal. The insurance company knows the laws they got enacted make it uneconomical to take them to court. It’s a very high bar to meet in court in order to prove they violated the statutes they basically wrote. I can‘t remember the exact words but it allows them a lot of leeway, the excesses need to be egregious. They are far from frightened of a court battle. We are having her CF doc, Susan Levine, write the second letter.
You may have already seen it, but one resource that my wife found to be helpful in the LTD insurance application process was the blog, "How To Get On" (LINK). All the recommendations should apply to the appeals process as well.
As far as applying for SSDI, it's important to submit as strong an initial application as possible because there are some big advantages to getting the initial SSDI application approved compared to waiting to appeal a denial through a Social Security hearing. The "How To Get On" blog also contains a lot of useful information about how to do this.
Just got Dr. Levine’s report. Solid stuff backed by blood testing and heavily referenced. Hard to imagine with two expert diagnosis, backed by testing, that they can possibly deny the claim. If they do, defending their decision in front of a judge is going to be very difficult.