• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Any testing to prove CFS for disability

Messages
42
I have applied for disability and am currently waiting for my adjudication hearing. The only thing in my medical records that shows I have CFS is a tilt table test from the Cleveland Clinic but they aren't using that record because it was 8 years ago. I have waited 13 months already for a hearing but I haven't worked since May of 2013 so I'm trying to make sure that I don't go into this without any evidence. Does anyone know of any test that could confirm CFS that I should request when I go to my Dr in a few days? Thanks!
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Here is the current SSDI advisory on CFS:
https://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

A person can establish that he or she has an MDI of CFS by providing appropriate evidence from an acceptable medical source.[19] A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence. We cannot rely upon the physician's diagnosis alone. The evidence must document that the physician reviewed the person's medical history and conducted a physical exam. We will review the physician's treatment notes to see if they are consistent with the diagnosis of CFS; determine whether the person's symptoms have improved, worsened, or remained stable; and establish the physician's assessment of the person's physical strength and functional abilities.
So you must have a doctor who not only understands what you tell them, but also writes it down.

Laboratory findings. At this time, we cannot identify specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude our reliance upon certain laboratory findings to establish the existence of an MDI in people with CFS.
They list some possibles, then go on to say,

Any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record (for example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record)

These might help establish "medically accepted clinical practice" and could give some options for finding something that makes sense in your particular case.
http://www.guideline.gov/content.aspx?id=38316
http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

This is of course for SSDI. Private insurance may be slightly different.
 

geraldt52

Senior Member
Messages
602
Bear in mind, Cshell, that you don't qualify for SSDI just by "proving" that you have CFS...CFS is not one of the conditions which automatically qualifies you for disability.

A doctor diagnosing you with CFS isn't likely to be enough. You have to prove that your symptoms make you unable to work. You really need the help of a doctor and lawyer knowledgeable in the Social Security requirements, because Social Security will bend over backwards to deny a claim based on CFS.
 

Gingergrrl

Senior Member
Messages
16,171
Bear in mind, Cshell, that you don't qualify for SSDI just by "proving" that you have CFS...CFS is not one of the conditions which automatically qualifies you for disability.

I totally agree and my case is purely based on the symptoms that render me disabled in my daily life let alone working. I don't even think the CFS label is being used (in my case) although I am leaving it up to my atty to do what he thinks is best. But my functional symptoms are the same regardless of the label and something I can and will swear on a bible in court if it goes that far. So am not sure how important the label is but I could be wrong?
 
Messages
42
I do have an attorney now but I've only spoken to the legal assistant, never met with the attorney. I did a horrible job filling out the papers on my own. I was having such a rough time thinking that I put quick answers.
 

Gingergrrl

Senior Member
Messages
16,171
I do have an attorney now but I've only spoken to the legal assistant, never met with the attorney. I did a horrible job filling out the papers on my own. I was having such a rough time thinking that I put quick answers.

@Cshell My atty filled out all papers, and most of them I never even saw, and we did them together on the phone (often with a legal assistant as you said.) My atty is not in my state so have not met them either. Do you know why your atty is having you do the papers yourself?
 
Messages
42
At first I didn't have an Atty and I filled them out on my own. But the legal assistant sends me things and tells me to fill them out and I don't ever have help from them. This attorney has a good success rate but I feel a little panicked because there isn't much in my recent records and I don't know what I even said on the papers. I know I did a horrible job of explaining myself because I had the worst brain fog ever then.
 

Gingergrrl

Senior Member
Messages
16,171
At first I didn't have an Atty and I filled them out on my own. But the legal assistant sends me things and tells me to fill them out and I don't ever have help from them. This attorney has a good success rate but I feel a little panicked because there isn't much in my recent records and I don't know what I even said on the papers. I know I did a horrible job of explaining myself because I had the worst brain fog ever then.

Did you xerox a copy or does the atty have a copy so that you can see what you wrote? Do you have ongoing doctors assessing you? I have two new doctors in addition to the two doctors from when I initially filed my case (plus two hospitalizations) so the information at the beginning is different than the current info but as long as there are doctors who have documented your symptoms and limitations, it would think it should be okay. My atty said to prepare to be denied twice and then go to court.
 

Gingergrrl

Senior Member
Messages
16,171
You can also get checked for autonomic dysfunction which may be easier to prove on disability papers.

Agreed and the day I went to the medical exam for disability, my BP was 98/80 with a PP of only 18! It was abnormal even for me and my BP usually more like 85/55 but I was glad it got captured for the doctor to see. Plus all my other documentation and every doc I have seen agrees I have autonomic dysfunction (at least ten people at this point) vs. not every doc agrees I have CFS.
 

geraldt52

Senior Member
Messages
602
... My atty said to prepare to be denied twice and then go to court.

Well, kangaroo court.

After the first two Social Security denials you will get a hearing before an Administrative Law Judge (ALJ)...who is employed by Social Security and works exclusively for Social Security. Don't expect that "judge" to be unbiased, and your success at that stage will be largely the luck of the draw as to which ALJ you are assigned to. There are still plenty of ALJs who think CFS is a made up condition for freeloaders to live off disability.

There are either 2 or 3 more appeals with Soc Sec after the ALJ hearing, then you'll end up in a real court. Hope that it doesn't come to that, because many years will pass before you get a hearing before a real judge in a real court...and the Social Security rules that limit your lawyer's fees will no longer apply.
 
Messages
42
Did you xerox a copy or does the atty have a copy so that you can see what you wrote? Do you have ongoing doctors assessing you? I have two new doctors in addition to the two doctors from when I initially filed my case (plus two hospitalizations) so the information at the beginning is different than the current info but as long as there are doctors who have documented your symptoms and limitations, it would think it should be okay. My atty said to prepare to be denied twice and then go to court.
I did copy some but I don't know what I did with the copy. The attorney probably has access to all of that. I do have ongoing appointments with my Dr and he is now referring me to a rheumatologist. I was denied twice and now am waiting my court hearing, which they said would take 12 months but now they say 15 mos.
 
Messages
42
Well, kangaroo court.

After the first two Social Security denials you will get a hearing before an Administrative Law Judge (ALJ)...who is employed by Social Security and works exclusively for Social Security. Don't expect that "judge" to be unbiased, and your success at that stage will be largely the luck of the draw as to which ALJ you are assigned to. There are still plenty of ALJs who think CFS is a made up condition for freeloaders to live off disability.

There are either 2 or 3 more appeals with Soc Sec after the ALJ hearing, then you'll end up in a real court. Hope that it doesn't come to that, because many years will pass before you get a hearing before a real judge in a real court...and the Social Security rules that limit your lawyer's fees will no longer apply.
This is where I am now. Waiting to get in front of the judge. I have waited so long. I really had no idea it would take so long or be so hard. I pray that I have a favorable judge because I don't know what I'll do financially if this stretches out any longer.
 

Gingergrrl

Senior Member
Messages
16,171
I was denied twice and now am waiting my court hearing, which they said would take 12 months but now they say 15 mos.

Wow, I didn't realize it took that long from the second denial. That is good to know. I am still in the initial process and waiting for the first denial.
 

geraldt52

Senior Member
Messages
602
Wow, I didn't realize it took that long from the second denial. That is good to know. I am still in the initial process and waiting for the first denial.

12-15 months between each level of appeal has been the norm for decades. Remember, it isn't to anyone's benefit but yours that it be settled quickly...everyone else in the system is making quite a good living passing paper around. I went through every level, and it was more than 6 years before it got to Federal Court, 7 years before I got my first check. I'm saying this not to be unduly negative, but people need to be prepared for what might be before them...and plan as best they can.