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CFS Not SSDI Worthy?

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

  1. LiveAgain

    LiveAgain

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    August59 and taniaaust1 like this.
  2. Nielk

    Nielk

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    Every time I think that we have progressed some as far as awareness, an article like this comes along.:mad:

     
  3. caledonia

    caledonia

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    Yep, we're like the Rodney Dangerfield of diseases - can't get no respect.

    I supposed they're picking on depression because they feel it can be cured with a pill, and that there shouldn't be people who don't tolerate the pills or get relief from them.

    These are just blanket assumptions and pretty ignorant at that.

    As far as SSDI being bankrupt in 2016 - I've heard of this before, although I've never heard that it would reduce payments to 80%. I assumed it meant they would cut off payments entirely. My game plan is still to be cured by then, either that, or live in a cardboard box under a bridge.
     
    ggingues likes this.
  4. Shell

    Shell Senior Member

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    Putting aside the stupid view that people with serious chronic CFS (ME) or depression aren't disabled, I can't help wondering if the reason benefit systems for seriously sick and disabled people are going belly up is because there are so many more seriously sick and disabled people.
    We know that autoimmune diseases - which can leave you flattened - are on the increase massively. We also know, in the UK at least, that NHS care is hitting the wall and so people are left sicker for longer thanks to lack of care.
    In America chronics are more likely to need medicaid as insurance runs out and medicaid has just been heavily stripped of funding so again the vicious circle.
    The fragmentation of families means the safety net has holes big enough for school of blue whales to fall through.

    A brief look at history will tell us that in these conditions someone has to be the scapegoat or sin eater and that, folks, is us. How reassuring.
     
  5. Nielk

    Nielk

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    The advent and success of new treatments for all kind of ailments is the reason that people live longer. We don't necessarily have cures for all illnesses but, with some treatment we are living longer. This might be the reason why there is such an increase in people with disability benefits.

    In the above article though, they are putting CFS and depression like a same breath. It just perpetuates and compounds our image problem.
     
    taniaaust1 and Shell like this.
  6. LiveAgain

    LiveAgain

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    I know I'm about to state the obvious. It's the dumb name. I'm sure the article writer has no idea what the symptoms of ME/CFS are... other than "fatigue" of course. If one doesn't dig deeper (and why would you if you don't have the illness yourself or a loved one with it or haven't been exposed to it through the media) chronically fatigued describes most people and I can see why they would be annoyed by this. Although a journalist really should look it up before commenting on it! Anyyway, the illness really needs a better name that captures how awful it is.
     
    jeffrez, SOC and Valentijn like this.
  7. Firestormm

    Firestormm Guest

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    Errr... it's late so forgive me... but haven't the FDA flagged CFS as a 'serious condition' with an 'unmet medical need'. Pretty sure they have seeing as I've been transcribing that conference and helping with an article about it! These people who write such drivel! Honestly. Wish I'd stayed in bed! :)
     
  8. JayS

    JayS

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    The mindset of the people who write this sort of thing about ME/CFS is likely one that would tend to consider what the FDA had to say about the condition to be drivel. And since most people know someone with the diagnosis that they feel are not really sick/are probably benefit scroungers, they are all too happy to reinforce their own biases. And while it seems obvious that the name is a problem, even calling it Myalgic Encephalomyelitis doesn't add much credibility in the UK, now, does it? If someone thinks one of us isn't really all that sick, or are best treated with CBT & GET (if they even know that much about it), I wonder how much it matters. That said, the case that ME is not CFS is a good one to make--it just has to be done coherently, as some tend to go overboard on this point.

    Skeptics and people who think that there shouldn't even be a disability benefits system are not likely to ever change their minds, unless something fairly drastic enters the picture. Like a virus, especially a retrovirus. That would shift opinion--but there are lots of people who think spending on money on HIV research and treatment is wasteful, since they tend to view AIDS as a disease acquired by lifestyle choice. Fortunately for us this seems to be a minority opinion.

    I'm not sure it's easy to make a case that Empirical CFS is a condition that should be viewed as being disabling enough to qualify for SSDI. And the CDC has never said this criteria should be ignored, and those cohorts were said to contain a large percentage of people who were well enough to work (I think the average was 48 hours, on average, between work and chores, per patient), and most of them weren't aware they were even sick. So...you do the math.
     
    taniaaust1 likes this.
  9. LiveAgain

    LiveAgain

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    I agree that a name change doesn't solve all the problems of ME/CFS, but a horrible sounding name might at least keep writers like this at bay. I doubt this person is going to dig into disease criteria and definitions etc. It would be a start anyway in revamping our image. If government and Doctors won't back us on a proper name or continue to refuse to adopt more accurate criteria how will we ever seem credible? I don't know much about the politics of this, but some of this seems so obvious I don't understand why they (whoever THEY is) refuse to do what's right.
     
    Valentijn likes this.
  10. Firestormm

    Firestormm Guest

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    Morning :)

    I have skimmed the article and I don't believe the thinking behind it. Was it a blog or an actual article btw? Anyway, I sincerely doubt if more disability claims have been made for our condition as a result of the economic downturn - not in the UK anyway. Might be something you'd cynically expect I suppose - but in this country you'd have to be terminal with certificates to get past the gestapo and into the gas chamber of 'welfare'.

    Seriously, it's damned hard to even get the initial application accepted. A large majority are simply put off even before then I would imagine. Getting a doctor to now say you are as disabled as you need to be in order for him/her to support your application; well that's a hurdle too high right there.

    Anyone who does obtain a disability benefit - well at least I think that can feel they are 'government-approved' disabled and not a fraud. Trouble is there are a great many who for wholly ambiguous and crap reasons 'don't make the grade' and this is what the author should be focusing on.

    The unfairness of the system. Which is what increasingly I think the UK media have finally realised.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is why the name needs to be changed to something more serious sounding like ME.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Look at england thou, it is called ME there and those there with this are one of the most badly treated groups in the world. That's evidence that just a name change will not solve our issue and the issue of ME being trivalised.

    The only thing which can change things is to make ME distinct from CFS and separate the often more severe ME group from the CFS one (in which many of those can actually still work, those severe sick CFS ones who dont have ME, I personally believe are usually wrongly diagnosed and need to keep seeking to try to find what is wrong).
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    Does anyone know what the email address is for that sen. Tom Coburn? I'd like to email him to tell him how bad my ME/CFS is. People in high up places with views like this are in serious need of education and if the patient group dont try to educate people like this..who will.

    (maybe there is a complaints place to complain of public untruthful statements like this too?). Could such people be forced to retract wrong suggestions eg that ME/CFS isnt a serious condition.
     
  14. Valentijn

    Valentijn Activity Level: 3

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    He's a republican from Oklahoma. As far he's concerned, all taxes are probably bad (unless he benefits from them), and he's opposed to universal health care in the US (except for people who can afford it).

    He won't criticize all benefits spending, because social security for the geezers is considered somewhat sacred, especially by those on the verge of becoming geezers themselves, and would lose him a lot of votes. But the mentality is generally that people should be able to get by due to their own efforts, and will be helped by their communities and churches if they deserve it.

    He really wouldn't care about sick adults, especially ones from outside of his state.
     
  15. August59

    August59 Daughters High School Graduation

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    My senator helped me get my SSDI and Medicare. We ended up breaking CFS down into some of it's worst symptoms designating the physical and mental limitations, Severe muscle pain, completely uncontrollable sleep and the severe anxiety and depression that these caused.

    Out of the 10 or 12 diagnosis that I had down, the ones above were the only ones mentioned in my "Fully Favorable" approval letter. My lawyer and the judge had briefly discussed a change in the rulings a few years back that allowed the cumulative effects of physical and mental diagnosis can be combined to come up with a "favorable" decision. So, I more or less received my SSDI based on multiple diagnosis. CFS was listed on my application, but it was actually 3 to 4 symptoms of CFS that got my SSDI.
     
    SickOfSickness likes this.
  16. peggy-sue

    peggy-sue

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    It's not just the denigration of folk with ME - it's serious denigration of folk with depression. :(
    Mental illness is often far more serious than physical injury.
    I'd rather a broken leg than depression, any day.
     
    justinreilly and Shell like this.
  17. peggy-sue

    peggy-sue

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    I'd actually go even further than that.

    I'd rather be an amputee than be somebody who has to continually battle depression throughout life.
     
    Shell likes this.
  18. taniaaust1

    taniaaust1 Senior Member

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    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.
     
    August59 likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Where I are, ones with chronic depression were getting disability pension far easier then I did with severe ME, the fact I didnt have depression worked completely against me. I had to go throu 3 appeals (and then got it on their points system)
     
  20. HowToEscape?

    HowToEscape? Senior Member

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    Re depression: Persistent depression is not simply a poor state of mind, though that can be a curiously reinforcing part of it. I believe, with a tad of evidence, that it stems from physical disorders which are not yet understood. But due to the legacy of psychobabble, where meaningless treatment for vague diagnoses was the style for some time and everyone fancied themselves an fine psychologist, anything described with psychological sounding words came to be regarded as BS.
    -
    I have a hunch that what's going on with depression are several types of disease leading to similar symptoms; immune system issues, physical brain defects, CNS inflammation, as well as the neurotransmitter issues targeted by drugs. There are ways to target the symptoms varying from exercise (best thing if you can use it), smacking the system with drugs, more sleep, more light, or (slowly) changing the immune, endocrine and other systems via thoughts and habits. Whether or not we can measure them, thoughts and habits have a physical existence in your body; they're not floating out in space.
     
    alex3619 likes this.

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