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CFS Not SSDI Worthy?

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
SSDI in Australia can work the same way.. on a points system in which various things you have are given so many points and once one reaches a certain number.. the SSDI can be given. Hence its VERY IMPORTANT for anyone going for SSDI here to make sure their doctor doesnt just put CFS on their form , make sure ALL your symptoms are clearly included. This is something Centrelink doesnt like to inform people about, the ones lower down in their office who I'd previously talked too, didnt even know of it but its how I ended up getting on the disability pension.

Using that above system.. one doesnt even have to have their CFS diagnosed to get the pension.

Hmmm, by the time I applied for a pension I had a long list of issues. I should have applied years earlier, but I probably would have been denied.

Here is something people do not get. To qualify for CFS you have to have (depending on definition) a marked decline in functional capacity, or a 50% drop in functional capacity. Lets presume you worked 40 hours per week, did 10 hours of chores, and spent 10 hours driving to and from work. Thats sixty hours functioning. Now halve that. It still takes 10 hours to drive to work, and 10 hours to do chores, leaving just 10 hours to work. Hmmmm, that only two hours per day, minimal part time work ... and that is for a mild patient.

ME has been largely synonymous with all-in-your-head since the 1970s. Name change itself is a pointless debate as if we get what we wish for then nothing much will change. What is important is that the accepted standard for diagnosis in research is very high, as are the standards for ME research methodology. I prefer the name ME to CFS, and not just because the name CFS is misunderstood, but its not worth the bother to fight for simple name change unless it has consequences beyond that. What we really need is to change medical culture and practice so that doctors use ME diagnostic criteria, and not CFS diagnostic criteria; that researchers know how many qualify for ME in their studies, and do subgroup analyses (based on definitions or other criteria), and that a psych diagnosis cannot use the same symptoms as found in ME if the person has an ME diagnosis.

Now with a simple cheap and reliable diagnostic test for ME that any doctor can call for, this may well change. We may then have the leverage. That could happen at any time, a number of tests are being looked at. If it can be shown that CFS diagnoses fail to capture these patients properly, and that ME diagnoses do, then it will be a major step forward. However I think its likely that what we consider to be good ME diagnostic criteria will be obsolete by that time. It will be time for a really new name, one that is backed by hard biomedical evidence, and is not tainted by nearly half a century of psychobabble.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hmmm, by the time I applied for a pension I had a long list of issues. I should have applied years earlier, but I probably would have been denied.

Here is something people do not get. To qualify for CFS you have to have (depending on definition) a marked decline in functional capacity, or a 50% drop in functional capacity. Lets presume you worked 40 hours per week, did 10 hours of chores, and spent 10 hours driving to and from work. Thats sixty hours functioning. Now halve that. It still takes 10 hours to drive to work, and 10 hours to do chores, leaving just 10 hours to work. Hmmmm, that only two hours per day, minimal part time work ... and that is for a mild patient.

You pointed all that out great of just how illogical it is for those with properly diagnosed CFS to be knocked back for pensions. Now we just need someone to educate the Centrelink offices in that and make a note of this illness and these facts in their assessment policies..
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Hmmm, by the time I applied for a pension I had a long list of issues. I should have applied years earlier, but I probably would have been denied.

Here is something people do not get. To qualify for CFS you have to have (depending on definition) a marked decline in functional capacity, or a 50% drop in functional capacity. Lets presume you worked 40 hours per week, did 10 hours of chores, and spent 10 hours driving to and from work. Thats sixty hours functioning. Now halve that. It still takes 10 hours to drive to work, and 10 hours to do chores, leaving just 10 hours to work. Hmmmm, that only two hours per day, minimal part time work ... and that is for a mild patient.

ME has been largely synonymous with all-in-your-head since the 1970s. Name change itself is a pointless debate as if we get what we wish for then nothing much will change. What is important is that the accepted standard for diagnosis in research is very high, as are the standards for ME research methodology. I prefer the name ME to CFS, and not just because the name CFS is misunderstood, but its not worth the bother to fight for simple name change unless it has consequences beyond that. What we really need is to change medical culture and practice so that doctors use ME diagnostic criteria, and not CFS diagnostic criteria; that researchers know how many qualify for ME in their studies, and do subgroup analyses (based on definitions or other criteria), and that a psych diagnosis cannot use the same symptoms as found in ME if the person has an ME diagnosis.

Now with a simple cheap and reliable diagnostic test for ME that any doctor can call for, this may well change. We may then have the leverage. That could happen at any time, a number of tests are being looked at. If it can be shown that CFS diagnoses fail to capture these patients properly, and that ME diagnoses do, then it will be a major step forward. However I think its likely that what we consider to be good ME diagnostic criteria will be obsolete by that time. It will be time for a really new name, one that is backed by hard biomedical evidence, and is not tainted by nearly half a century of psychobabble.

I certainly agree that changing the name to ME by itself is absolutely no panacea for the mire we are in. The change to accurate case definitions and education etc are absolutely necessary. I am just saying that, using "ME" rather than "CFS" probably gets the single biggest bang for the buck of anything we can do. We can do it ourselves at no cost and with almost no effort- just say "ME" instead of "CFS". Of course we need to get all of those other you mentioned done too.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi justinreilly , I already use ME instead of CFS whenever it is appropriate, and have done for some time. However that is not all the time as there are times when I want to talk about CFS and not ME. It also does not get received very well. I had ME on my medical diagnoses list in hospital this year, yet it got changed by persons unknown to CFS. Alex.