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I realize there is no ME/CFS blood test but I know some can be used to show abnormality that may help win a disability case. What tests should I have run to help my case?
Which tests are good for a disability claim?
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*GG*
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I've heard our blood sedimentation rate is usually abnormal, but don't think that it helps prove how disabled we are. Not a blood test, but the 2 day in row exercise test might help?
GG
GG
ghosalb
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I used (my nurse did it on her own) lung capacity test, pressing/touching different locations of body to see if I have pain/tenderness, brain MRI for white matter, 3 letters from neighbors/friends who can explain how my life changed since getting CFS, a strong letter from my doctor etc.
Gingergrrl
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@ghosalb Just curious, was your lung capacity test abnormal? Am wondering if you have an ME/CFS diagnosis and also an abnormal PFT? Can you PM me if not comfortable to respond here?
A CPET (CardioPulmonary Exercise Test) is pretty much the gold standard in proving disability.
If you're a mild case, you might need to do the two-day version to show an objective drop in function triggered by the first CPET.
These will almost certainly trigger crashes, however.
ghosalb
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My nurse told me to blow into some tube like instrument and told me that my lung is of a 70 year old even though I was in my 50s then.
Gingergrrl
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@ghosalb Am going to send you a PM to not take this thread off track with a couple more questions. I hope you do not not mind!
caledonia
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Assuming you're talking about Social Security, look at the SS letter on ME/CFS.
https://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html
Provide whatever evidence you have that fits those criteria, plus any other abnormal labs.
However, those are only diagnostic for having the disease and don't prove disability.
To prove disability you need
1) a functional capacity evaluation to show how fatigue and pain keep you from working
2) a neuropsych evaluation to show how concentration/memory problems and any anxiety/depression might keep you from working
3) a record of continuing disability over a long time, which can be documented by going to your doctor every 3 months (while you're waiting for a decision) and reporting that you continue to remain disabled.
My lawyer had a nifty form for #3 and my judge liked this information the best.
Note, skip #2 if you're applying for ERISA long term disability (through your employer). It can be used against you to prove that you only have a mental illness and they will likely cut off benefits after two years (if they ever approve you in the first place).
https://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html
Provide whatever evidence you have that fits those criteria, plus any other abnormal labs.
However, those are only diagnostic for having the disease and don't prove disability.
To prove disability you need
1) a functional capacity evaluation to show how fatigue and pain keep you from working
2) a neuropsych evaluation to show how concentration/memory problems and any anxiety/depression might keep you from working
3) a record of continuing disability over a long time, which can be documented by going to your doctor every 3 months (while you're waiting for a decision) and reporting that you continue to remain disabled.
My lawyer had a nifty form for #3 and my judge liked this information the best.
Note, skip #2 if you're applying for ERISA long term disability (through your employer). It can be used against you to prove that you only have a mental illness and they will likely cut off benefits after two years (if they ever approve you in the first place).
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Is that available in the U.S. never heard of such a thing. What kind of specialist? I thought with CFS we would never be able to complete a test like that.
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My brain MRI came back normal according to my neurologist. Is there a specialist for ME/CFS who would see abnormalities that a regular neurologist wouldn't know to look for?
It's been around for 50-60 years, and is an extremely common test
The duration is until you hit exhaustion, so it might just be a few minutes. But it objectively measures the exchange of gases through a mask, so they can use that data to see if maximal exertion was attained.The state-of-the-art research labs in the US charge quite a lot ($1,000-$2,000?). The ME clinic I go to in Belgium charged around 100 euros I think.
ghosalb
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get a copy of the MRI report and see if it mentions white matter anywhere.....white matter can be present for other reasons also....my neurologist also thought it was no big deal but the judge (probably his assistant) who approved my disability used it as one of the supporting items in his report. So, if white matter is mentioned, use the report.
@sickntired771 - as others have indicated, it depends on what sort of disability case you are referring to and in which country.
Can you share where you live and which sort of disability you are referring to (for example, in the US, there is long-term disability - a private insurance, and SSDI (Social Security Disability Insurance among others) so that we can try to provide more?
Can you share where you live and which sort of disability you are referring to (for example, in the US, there is long-term disability - a private insurance, and SSDI (Social Security Disability Insurance among others) so that we can try to provide more?
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U.S. for SSDI. Thanks guys.
You likely have read the Social Security ruling re evaluating people with this disease.
You may already know that SSDI is not based on a diagnosis but rather on level of function.
I do not know how far along you are in the application process.
Providing documentation of what you could do before, what happens to you now when engaging (or trying to engage) in similar activities (cognitive and/or physical) and how long the repercussions last can be of help in supporting your case.
Similarly - third party reports from family/friends/coworkers about your level or function and repercussions from activities can also help.
Documenting what a typical day is like, or how often you can shower, cook, do laundry, etc but making sure to describe what happens when you do these things (for example, you have to rest for x number of minutes/hours before doing something else or you can no longer figure out how to make only half the amount of the recipe, etc.).
If is emotionally painful to set these things down in writing, but vitally important to do so.
Document how long it takes you to fill out the application forms, how many times you had to save and return (again - be sure to describe why you had to stop, how long you had to wait before being able to resume.....).
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After a 2 day CPET, it is possible you will permanently worsen your health, because any bigger exertion can do that to ME patients. But it may be one of the only ways to show your limited functional capacity. So many ME patients have normal labs and MRIs.
ghosalb
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you can join yahoo group "disinissues" which has lot of info about SSDI
MeSci
ME/CFS since 1995; activity level 6?
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You'd be in trouble without white matter - it consists of the nerve fibres (axons) connecting neurons!