- Messages
- 83
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?
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, 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.
lung capacity test
A CPET (CardioPulmonary Exercise Test) is pretty much the gold standard in proving disability.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?
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.@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?
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.
A CPET (CardioPulmonary Exercise Test) is pretty much the gold standard in proving disability.
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.
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.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.
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.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?
@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?
U.S. for SSDI. Thanks guys.
You'd be in trouble without white matter - it consists of the nerve fibres (axons) connecting neurons!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.