I don't think a court will care if ME is classed as a disease, a disorder or a disability. Disability is based upon personal functional capacity.
With ME you can do a 2 day CPET, and a qEEG, that might show enough of a problem. However while the qEEG can be cheap, and the primary problem is getting there and back, a 2 day CPET also runs the risk of severe relapse. An alternative I have been wanting Workwell to look at is simple metabolic gas testing. I think the CPET problems may show up in a simple gas analysis on more severe patients. That would be hard objective evidence of functional capacity.
Its very important to have a symptom diary you can show a judge. They want to know how everything effects you. Statements from careworkers, close relatives, friends and doctors might also help. Be as well armed as possible. In particular highlight how many times you have collapsed, and in what circumstances. Highlight how many important medical appointments you cannot attend. Highlight what you cannot do.
This is a murky area. Most who do well in such cases have legal advice from specialist legal teams.
The critical point is probably, in my view, to use your knowledge of ME to find specific disabling symptoms which you can document, or better yet can measure using tests. These exist for some issues. Tilt table test results for example. Whether or not PEM is due to a discrete disease entity like ME is not an issue if you can document and even measure PEM and its effects.
Where you cannot measure, at least document things. A daily diary for some months, in book that wont be lost and without dates (add your own dates as you might need more than a page), with not just problems but severity mentioned. If you have to fill it in for past days you were too sick to do so, make a note of that.
If I think of anything else I will add it later.
Thanks, that's part of the issue Alex, they have even refused to take a look at ANY of my test abnormalities. When I tried to give the disability service my medical file with all all the abnormal tests to try to prove Ive got a lot wrong, they go "we dont look at medical tests as we are not doctors" "we are not interested in them".
So even if I had a 2 day CPET they would refuse to aknowledge it (and they ignore the doctors letters cause they are convinced ME/CFS is a psycholocial disorder.. a mental health "sickness" I guess). I dont even know if that test can be done in this backwards state???..
The Royal Adelaide Hospital and the Flinders Medical Centre (the two biggest hospitals in this state, dont even have a tilt table. The RAH I was told got rid of theirs as they werent using it!! (they obviously didnt know when it should be even used). As far as I know, the only tilt table in this whole state is at the Repat. Hospital and they dont even know much about how to do these tests!! (their lack of knowledge when I went to an appointment re doing that was astounding).
Then the other hospital out my way is testing dysautonomic disorders with only a ONE MINUTE STANDING TEST. They tried to kick me out of hospital one time after only one bag of IV saline (I always need two after a bad collapse where I cant get back up) based on that I was okay with a 1min test and threatened to have me removed from the hospital by security when I told them I was still to sick to leave.
(On that ocassion after being forced to leave the hospital bed, I hardly made it out of the ward before I was collapse on the hospital floor again. That doctor who had threatened me with security, ended up having to give me the second bag of saline IV!!).
SA is very backwards with all this stuff. I still cant get heating and cooling rebate here like they do where you are etc etc even thou we have it here for those who have issues with heat (and I can become unconscious in heat, Ive ended up in hospital with heat). They refuse to accept the conditions POTS and ME/CFS here.
I dont think there is an issue proving Im disabled (no matter what the disability service says there) seeing how often I end up being ambulanced to hospital due to collapses etc. I cant shop without being pushed in a wheelchair and lots of people can back that up. I had THREE different doctors support me getting a wheelchair. The thing will be.. if the court accepts ME/CFS is a "disability".
I collapsed today. I cant get taken out without a wheechair without usually collapsing.
I don't think a court will care if ME is classed as a disease, a disorder or a disability. Disability is based upon personal functional capacity.
Other services are supposed to help those who have "sicknesses" I think eg hospital services... so classification becomes important when it comes to who is responsible for my care. But yeah, I really do hope the court will just base on personal functional capacity esp since ME/CFS patients here cant get other services.
The disability service has also been on about how I should be being treated by the hospital (and hence the hospital should be providing my transport).. They actually believe the hospital should be FIXING me. (sighs, I assume they think ME/CFS is fixable by just some GET and CBT!!). So they dont see themselves as responsible as I should just get fixed. (umm I wonder how the court hearings are going to go when all that stuff comes up.. "Why isnt she getting CBT and GET?").
daily diary for some months, in book that wont be lost and without dates (add your own dates as you might need more than a page), with not just problems but severity mentioned.
My low baseline is constant, it doesnt change (only gets a little worst over time). I do not at all have days where I can do much more then the very low level. Im highly restricted in what I can do every single day and it varies from very bad to points where I cant even crawl or sit or even speak.
eg today I walked 100m throu a small seated crowd before I collapsed (I sat and rested at about the 50m mark .. at this point two people had to hold me up either side to help me get back to a car (another disabled persons support worker jumped up to check if I was okay when I fell down, so ended up having to help my family member who'd taken me out get me back to car)... \
and of cause Im not doing anything else today after that fall down incident except sit legs up. No dinner tonight, I need to remain laying or seated. That's typical.
A typical week diary should probably be enough to show how severely limited I are if the fact I have wheelchair isnt enough. (as people can say anything, the fact I do use a wheelchair to go out probably shows more). My week is paced out in the same manner most weeks. I need a strict routine otherwise I other do and end up in trouble (like today.. if family member hadnt been there an ambulance would of been called. I can not go out alone).
It was the first time that family member had taken me to an event , he didnt want to go to it alone and didnt have another family member to go with so he came and got me. (He's only once before ever taken me out and that was just to a food place to eat) so I guess seeing me collapse for the first time was quite an eye opener for him. (he took me to the tour down under with the bike racing. We werent going to get out of the car, we were going to park somewhere we could see them go by but we ended up getting out the car).