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CFS Not SSDI Worthy?

Discussion in 'Action Alerts and Advocacy' started by LiveAgain, Jun 16, 2013.

  1. alex3619

    alex3619 Senior Member

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    Logan, Queensland, 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.

    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.
     
  2. taniaaust1

    taniaaust1

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    Sth Australia
    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..
     
    WillowJ likes this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    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.
     
  4. alex3619

    alex3619 Senior Member

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    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.
     

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