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who says it takes an average of 5 years to get a cfs diagnosis?

Messages
10
I have seen some claims that it takes an average of 5 years to get a CFS diagnosis. I'm trying to find a 'better than' anecdotal source for this.

In fighting my SSDI claim, there's been a sense that the time between my leaving work, and getting the diagnosis is too long. I'd like to find a somewhat reasonable source for this claim, just so I have something to show in my own defense.
 

AlleyCat

Senior Member
Messages
105
I am having the same problem with SSDI claim and it took me 7 years to get a diagnosis. With 4 of those years unable to work. If you find anything please share.
 

geraldt52

Senior Member
Messages
602
I can't help with the original question, but your date of diagnosis may not be as relevant as you imagine. A CFS diagnosis will not win you a SSDI claim. You must prove that you became, and remain, unable to work because of your symptoms. If you were seeing a doctor during the time in question, making a record of your limitations and symptoms, it does not matter that you had not yet received a CFS diagnosis. If you can't prove "disability", having a CFS diagnosis will accomplish absolutely nothing. You would be wise to consult an attorney who has done a number of CFS claims. They typically will work on a no-win, no-fee basis.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I have seen some claims that it takes an average of 5 years to get a CFS diagnosis. I'm trying to find a 'better than' anecdotal source for this.

In fighting my SSDI claim, there's been a sense that the time between my leaving work, and getting the diagnosis is too long. I'd like to find a somewhat reasonable source for this claim, just so I have something to show in my own defense.

I agree with the post above this one. Getting an attorney experienced with SSDI claims might be something to consider.

I had to get an attorney and he didn't charge me anything until I got a financial settlement. He had experience with SSDI claims and was very good.
 

AlleyCat

Senior Member
Messages
105
I have gotten an attorney and already been denied twice because of the timeline between not being able to work and diagnosis. I am now waiting for a hearing which the attorney said is about 15 months. He believes he can win this for me at hearing. He is one of the ones that doesn't get paid until I do, and only if I do.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I have gotten an attorney and already been denied twice because of the timeline between not being able to work and diagnosis. I am now waiting for a hearing which the attorney said is about 15 months. He believes he can win this for me at hearing. He is one of the ones that doesn't get paid until I do, and only if I do.

I think that's the same thing I had to do. I was denied twice, then had a 15 minute hearing before an administrative law judge.

The judge ruled in my favor after that hearing. I was awarded 10,000 for back SSDI payments. Of which I got 7,000 and my lawyer got about 3,000.
 

AlleyCat

Senior Member
Messages
105
@ljimbo423 I'm a little nervous about a hearing. I had trouble with the questions from the attorney. He was asking me for dates and which drs I saw and when. My brain just doesn't work like it use to. I'm afraid they will think I'm an idiot or something. How did your hearing go?
 

geraldt52

Senior Member
Messages
602
I have gotten an attorney and already been denied twice because of the timeline between not being able to work and diagnosis. I am now waiting for a hearing which the attorney said is about 15 months...

It would be unusual to not be denied twice, unless you have some very obvious condition that is more or less pre- "qualified" by Social Security for disability...which CFS most definitely is not.

The hearing before an Administrative Law Judge is a critical turning point in any case, and I have to tell you it will predominantly be the luck of the draw as to which ALJ hears your case, and what their general opinion of CFS is. If you lose before the ALJ there are still several levels of appeal, but it is an uphill battle. Pray for a sympathetic ALJ. Prepare yourself mentally for the long haul.

My case went 7 years and ended up in Federal Court before my benefits were awarded. Social Security only approved my benefits when they were essentially ordered to do so by a Federal Court.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
@jonn and @AlleyCat
I think if you have records of seeing any types of doctors and/or other practitioners, for your difficulties, during those years between being first unable to work , and getting a dx, that is enough. It would help if you were SEEKing help at that time. (If not , then you could document what you were doing during that time, such as too sick and weak to get up to get meals , and letters from anyone who knows you to state that you were not able to do things, or needed help from others to do things, etc )

And you could prep way before the hearing, to find the dates, of ANY types of medical people OR other professionals, that you saw in those years, OR other respected ppl who could write letters for you, that they knew you were too sick to work at that time....and that you were too sick to attend social events, etc.... that you need and needed help in order to do anything you did....

I would then focus more on the symptoms that kept you from working, and still do. And the severity of those symptoms, and how they keep you from doing normal tasks and from working.

I would make a list of those, you can take your time and add to it as you remember them, or if you have ANY type calendars or notes from the past to remind you.....

At the hearing, it is not necessary for you to remember everything and to appear smart and capable , because that is one of the reasons we cannot work. We cannot rush and get the right answers to questions. We cannot predict how we will be on that day. We cant act smart and capable and great, and that IS fine if it is obvious to the judge.

Our unpredictability and inability to function well, is why we cant work.

SO I would prep the lists, and letters of support, for your lawyer, and try NOT to worry about being "good" at the hearing. If you looked sharp at the hearing, they would doubt your illness . You don't need to .

It took me way too long to remember answers and give them, at one of my evaluations, and I didn't realize, that helped my case, did not hinder it.

And again, I think you should focus on telling the judge your symptoms, and how bad they are, and how they limit what you can do even at home. I wouldn't lean on the diagnosis.
That was my experience.
 
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