Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Help for disability appeal (Australia) - ruled not fully treated

Discussion in 'Finances, Work, and Disability' started by purrsian, Jun 23, 2017.

  1. purrsian

    purrsian Senior Member

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    On Thursday, I had my job capacity assessment with an occupational therapist. It went pretty ok. My mum came in and actually got a little teary as I described how little I can actually do, plus I looked super pale and tired cos I did feel sick. This morning (Centrelink only took 2 days...are we in an alternate dimension or something?!) they called to say my condition had been ruled not fully treated for three reasons.

    1. I haven't seen a rheumatologist. I explained I haven't because I don't have problems with pain and a doctor had never recommended it. Is there any point in seeing a rheumatologist if you have no problems with pain?

    2. I haven't seen an exercise physiologist. I explained that we couldn't find one who was knowledgeable about CFS, as exercise can be harmful if I saw someone who was not knowledgeable in my condition. Also, I didn't say this but I don't really want to see one anyway as I think it would be a waste of money and be harmful. Every time I try to exercise at home (yes very tiny tiny amounts), it just takes away from what other stuff I can do.

    3. I haven't had CBT. I said I had done a self guided course online though. My doctor has suggested it, but I honestly see it as a waste of money too. I learned some stuff in the self guided course which helped me adjust to my limitations, but as we all know being happier with our lives doesn't make us better in any way.

    Does anyone know any good links or studies that explain why GET and CBT are not helpful and can be harmful? I was also thinking I could mention some of the new research that is proving this is a very physical disease - no other physical disease would required CBT because obviously, thinking about something in a better way is not going to cure them!

    Does anyone have any other advice or information that might be helpful? My brain hasn't been working great lately, so any assistance is greatly appreciated!
     
  2. Esther12

    Esther12 Senior Member

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    Sorry to hear about this.

    Maybe Jonathan Edward's paper is a good intro to the fundamental problem which undermines so many of the claims about CBT/GET being 'evidence based'?: http://journals.sagepub.com/doi/full/10.1177/1359105317700886

    Also, cases like yours are something that patients have been raising concerns about to those making misleading claims about the value of CBT/GET. It could be helpful for you to make any documents you have about this available to advocates (removing any personal details you want to keep private). It is a very unfair situation.
     
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  3. Alvin2

    Alvin2 If humans were rational...

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    Is there an appeal process at your disposal? Is legal help available?
    Can your doc write a letter saying exercise would be harmful in their opinion?
    I would go to the rheumatologist if you can handle the appts, for appeasement mostly, though make sure your seeing someone who specializes in ME/CFS so you don't get a report saying you don't have it.
    The CBT won't work obviously, and i'm hesitant to say do it for appeasement, because of the load and when you don't improve you will be blamed for it instead of the reality that this is a physical malady. If they believed cancer was caused by bad thinking they would still write a report saying patient is non compliant because CBT didn't cure their cancer [facepalm]
     
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  4. purrsian

    purrsian Senior Member

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    Thank you for the link, I haven't fully read it yet but I believe this will help and have already spotted a few quotes that are particularly helpful.

    It does bother me that the misleading claims about these treatments have led to this issue. The definition of "fully treated and stabilised" for Centrelink is...
    "Reasonable treatment is defined as treatment that is of a type regularly undertaken, reasonably accessible, at a reasonable cost, low risk, with a high success rate and where substantial improvement in functional capacity can be reliably expected. A treatment may not be considered reasonable if there is a medical or compelling reason for the patient not to pursue that treatment (which can include religious/cultural beliefs, genuine fear/lack of insight or the ability to make appropriate judgements due to a medical condition where the person is unlikely to comply with treatment)."

    I don't believe that GET or CBT could possibly provide a high success rate or substantial improvement in functional capacity reliably. GET also probably isn't low risk.

    I don't really have any documents about this yet, as someone called me this morning and just told me about it all. I'm hoping to get it in writing though, so it will be easier for me to ensure I appeal all the correct things.

    There is an appeal process which I definitely indeed to use. I probably don't need legal help yet - I'll see how my first appeal goes, but it is available.

    I definitely agree about them saying non-compliant patient if you aren't cured by CBT. Thinking about things in a better way might make one feel happier, but it's not really going to fix the whole "my body can't produce enough cellular energy to function" thing! I've opposed getting CBT because I feel I'm already pretty well-adjusted considering the circumstances and I don't have the energy or money to be going to extra appointments.

    I'm still unsure about the rheumatologist, mainly because I just don't know if there's anything to discuss with them at all. I'm in the subset of ME/CFS patients that don't get pain or joint issues. Is there anything aside from pain/joint issues that a rheumatologist would deal with for an ME/CFS patient?
     
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  5. Esther12

    Esther12 Senior Member

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    Alvin's advice might be more practical than my plan to fight to overthrow the whole system.
    I agree with you. Hard to see how they can claim a high success rate or that a substantial improvement in functional capacity can be reliably expected. Would be good if you could get them to put this stuff in writing - sounds like they're beng really unreasonable. Sorry you're having to deal with it.

    There's plenty of other papers criticsing claims made about CBT/GET at the moment, and hopefully more to come. When you have a firmer idea of what you're responding to I could try to find you some other suitable pieces too.
     
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  6. Alvin2

    Alvin2 If humans were rational...

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    I've been here so i ask you to believe me that you should get legal assistance now, they know how these processes work and will work in your favour in ways you can't because you don't have the experience of working the system and the training they have in dealing with these kinds of denials.
    They like to label you non compliant because it gets them off the hook while shaming you. So you have to approach it strategically, they want to stack the deck against you, so in order to succeed you have to play the game better then they do. Thats why i say go to the rheumatologist, as long as its someone who treats ME/CFS legitimately, you are then compliant and you get an extra piece of evidence in your favour. However its critical you go to someone who is legitimate and not a denier or GET/CBT pusher.
    This is also why i advise against CBT, they believe lies and don't want to acknowledge reality and will use reality denial against you, so don't give them that ammunition
    Third, this is why i say get a letter saying exercise will likely cause harm, more evidence in your favour and explains away their objection. They may try to ignore it, which is why you want legal help, they work to make sure evidence against you is not cherry picked.
    You want to make your case airtight and give them no ins because this is what they are trying to bludgeon you with. You should take every step possible at your disposal to make sure you are victorious. If you need to present research showing their therapies are a bust it may be a good strategy, it may also make them dig in harder or they might reject it because they claim its about you and not the condition (split the baby as it were). This is also why you should use legal help, they can navigate this.
     
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  7. purrsian

    purrsian Senior Member

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    I did just find this article:
    "A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS)"
    https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf
    While it is from 2009 (so nothing about how terrible PACE was), it is a massive review of all the reasons why those treatments are ineffective and why GET can be harmful. So that's gotta have some great references in there for my needs!

    "Since only a few randomized controlled trials for CBT/GET can be identified and most of these trials, as a result of the selection criteria, excluded many ME/CFS patients and/or included non-ME/CFS patients, the evidence-based claim for proven effectiveness of CBT/ GET for ME/CFS cannot be substantiated."

    "Large-scaled patient surveys and clinical practice show that CBT/GET often induces a deterioration of the clinical status of ME/CFS patients and is harmful for many patients."
     
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  8. purrsian

    purrsian Senior Member

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    Ok I'll start looking into legal help, I found something earlier about disability advocacy and legal help in my state.
     
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  9. Alvin2

    Alvin2 If humans were rational...

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    Cool :thumbsup:
    Sorry if i'm being too forceful, it just boils my blood to see lies trumping reality :bang-head::bang-head::bang-head:

    Also run everything i've said past your legal counsel, i'm not infallible either
     
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  10. purrsian

    purrsian Senior Member

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    You aren't, it's all good :) I agree, it's so frustrating that despite how far the science has come and despite how disabled many of us are, our illness is still treated with such disdain.
     
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  11. Alvin2

    Alvin2 If humans were rational...

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    Yeah i agree, i hope a disease mechanism is discovered soon, will make a world of difference.

    Not sure if you saw my edit to my last post, Also run everything i've said past your legal counsel, i'm not infallible either

    One last thing, make sure you like and respect your legal counsel (and ask lots of questions about everything from strategy to evidence and compliance). If you don't have faith in them after meeting with them and working with them request someone else, your looking for someone who believes in your case and that you work well with so they will do their best work on your behalf, and not just their legally mandated minimum.
     
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  12. Sea

    Sea Senior Member

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    This is a useful document from American government (so should carry some weight) showing that recommending CBT and GET is outdated.
    https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf

    This is a blog about it
    https://www.healthrising.org/blog/2...e-cbtget-work-chronic-fatigue-syndrome-mecfs/

    ...and the ME Association's commentary
    http://www.meassociation.org.uk/201...bt-and-get-occupy-m-e-website-16-august-2016/

    Also from the ME Association is the document No decisions about ME without ME which contains a ton of info from patient surveys
    http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf
     
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  13. Sea

    Sea Senior Member

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    I would ask for Centrelink's basis for those 3 reasons they gave you. It would be good to know where they get their information from to be able to counter it more effectively. To have made the decision so quickly on those grounds it sounds like either the OT who assessed you or Centrelink in general has adopted the approach that CBT and GET should be tried.
     
  14. knackers323

    knackers323 Senior Member

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    Not much help to you sorry. But if these people think this get, cbt and any other crap they recommend you/we try is effective then then it should be in their shoulders to prove it works. Not the other way around.

    Ive dealt with clink. The only way through it us to see the drs/fools they recommend then tell them it didn't help. Or better yet. The truth that it made you worse, mentally, emotionally and physically. Its really the only way they can follow their piece of paper and tick off all their boxes for you.

    Problem is your dealing with people that are not up to date with findings, have no personal experience with the condition and sadly dont know what they are talking about in regards to the subject.

    Good luck
     
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  15. Hutan

    Hutan Senior Member

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    What state are you in @purrsian? Emerge, that patient support group based in Victoria, may be able to help. I went to one of their conferences where a lawyer, I think from Maurice Blackburn spoke. The lawyer seemed good and clearly had experience working for people with ME. I got the impression that he probably could give some initial guidance for free.

    Bloody PACE >> Bloody Cochrane >> Bloody Royal College for General Practitioners Australia. All have a lot to answer for.

    I'm not sure if anyone has mentioned the AHRQ Review? See this thread http://forums.phoenixrising.me/inde...ew-changes-its-conclusions.46229/#post-752219
     
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  16. Alvin2

    Alvin2 If humans were rational...

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    Thank you :)
    I see it this way, theres an expression; think globally act locally. The OP needs to make sure their claim is successful. After thats done plotting world domination, i mean changing the medical mindset is fine to fight for :thumbsup:
     
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  17. purrsian

    purrsian Senior Member

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    Thanks for the links Sea, I think they'll be very helpful. I think that the OT was asking questions off a list, so it's probably Centrelink as a whole. I'm hoping to argue that these treatments don't fit into their "fully treated" definition due to GET not being low risk and neither being able to provide a high success rate or reliably provide substantial improvement to CFS sufferers.

    I have considered just going ahead and doing the treatments, but I honestly fear GET would be harmful for my long term health. And I worry that, as someone mentioned above, they'll rule me non-compliant or something if I don't magically improve with CBT. It's also money and energy to attend appointments that is hard to come by. I'm wanting to get back to my part time studies next semester, won't be able to if I try these treatments. But I may need to try them, I'll see how my appeal goes.

    I'm in QLD. I'll contact Emerge and see if they have any advice or assistance they can provide. And I agree, they do have a lot to answer for! Thanks for that link, very helpful!

    I definitely hope to ensure it's successful!

    Can you imagine a world run by CFS sufferers? I don't think a lot would get done lol It would be nice to be in charge of our own destiny though!
     
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  18. Alvin2

    Alvin2 If humans were rational...

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    It would be efficient, automated, likely a guaranteed minimum income, and a much bigger medical research budget :D
     
  19. purrsian

    purrsian Senior Member

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    I like the sounds of that! Free electric wheelchairs for everyone with CFS so we can zoom around with freedom!
     
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  20. kangaSue

    kangaSue Senior Member

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    Give serious thought to seeing a Rheumatologist, CFS often turns out to be something else down the track, or includes having something else as a co-morbidity and Centrelink DSP works on a points basis so when you make an appeal, list every medical diagnoses that you have as it can help bump up your overall score.

    There's a bit more helpful info in this thread;
    http://forums.phoenixrising.me/inde...ng-disability-in-australia.48218/#post-792507
     
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