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CAA is Listening

Discussion in 'Action Alerts and Advocacy' started by jspotila, Feb 11, 2010.

  1. Doogle

    Doogle Senior Member

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    Hi Jennifer,

    I posted this on your interview by Cort but haven't received an answer so I'm cross posting here also. Thanks.

    Would you please explain what the CAA is doing about ICD-10-CM plans to move CFS to R53: Malaise and fatigue? See http://wp.me/pKrrB-Un

    This has to be stopped as it would be a big step backward in our ability to get proper diagnosis and treatment. If this has already been addressed someone please link to the discussion.
  2. WillowJ

    WillowJ Senior Member

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    I'd like to hear the answer to this, too. Thanks.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  4. Mark

    Mark Acting CEO

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    I've moved those posts as requested...they appear in chronological order in the new thread, mixed up with the other posts there, so I'm not sure that's ideal, but let me know if you want any more posts moving or copying to tidy this up further.
  5. Doogle

    Doogle Senior Member

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    CAA please respond

    Hi Jennifer,

    I posted this previously but haven't seen an answer. Would the CAA please respond? Thanks.

    Would you explain what the CAA is doing about ICD-10-CM plans to move CFS to R53: Malaise and fatigue? See http://wp.me/pKrrB-Un

    This has to be stopped as it would be a big step backward in our ability to get proper diagnosis and treatment. If this has already been addressed someone please link to the discussion.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    anyone home?
  7. asleep

    asleep Senior Member

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    Only if you ask questions the CAA likes...

    Since the CAA is listening, here's another question:

    What concrete steps is the CAA taking to either directly fund the WPI or to ensure that it receives government funding?
  8. jspotila

    jspotila Senior Member

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    Yes, still stuck at home.;) I did not want to answer before I had accurate information from the staff.

    Unfortunately, we have neither the time nor expertise to engage on this issue. We have no clinicians on staff, and no expertise in making the case for how diagnostic codes will have a negative impact on reimbursement. The IACFS/ME or CFSAC might be in a better position with the right expertise.
  9. jspotila

    jspotila Senior Member

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    I do my best to answer questions whether I like them or not, actually.

    The Association expects to issue a new RFA later this year, and WPI is welcome to apply for funding. We will continue to follow our objective grant review procedure for scientific and strategic merit. The NIH review process determines who receives government funding for research.
  10. asleep

    asleep Senior Member

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    Unfortunately, you did not provide an actual answer to my question...

    Though hidden by language designed to deflect and obscure, I believe you meant to say: the CAA is not taking any steps to directly or indirectly help the WPI secure funding.

    You are trying to shield the CAA's negligent inactivity behind a smokescreen of "process" in order to diffuse culpability. The extraordinary finding by the WPI merits extraordinary considerations. To lay blame on a formalized process that the CAA itself controls is both disingenuous and patronizing.

    Yes, but isn't it the CAA's mission to try to influence this process in a way that will most benefit PWC? You cannot just say "it is what it is" when your job is to affect "the way it is."

    We keep hearing from Cort how the CAA is "walking the halls of government" and fulfilling other such empty platitudes. But to what end?

    Take, for example, the recent McClure appointment to SEP that threatened a direct and negative influence on government funding of the WPI. The CAA was eerily silent on this, and if not for the cacophony of outrage from independent patients this detrimental action would have likely gone unchallenged.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    i have no clinicians or insurance experts on staff, but I will be pressing cdc on this issue as will other patients. i really think caa has sufficient knowledge of the issues and subject matter to comment constructively. This is a very important issue and American patients will be screwed for years on end if the current codes are adopted as currently suggested by cdc. this really needs to be taken on by caa as a high priority. cancel low priority items like webinars and spend some resources on this, this is incredibly more important than webinars and the like.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I wouldn't say you are trying to 'obscure' or blaming the process but i have to agree with asleep that we know NIH is responsible for grants, we are asking what you are doing about it. the answer is 'nothing' so just say that.

    my ideal, as i've said would be to see caa represent and advocate for patients. it seems in the past caa has claimed to do so, though i don't think they did a competent job. now it seems caa's mission is simply to stimulate research in ME. i think it should communicate that mission explicitly- indicate on the main page that your only function is to stimulate me research, not address any other aspects of the disease including advocating for or representing patients. I think you should make that clear in all your communications- including to donors, media, patients and the government.

    When cnn calls for comments on PACE trial or some such, tell them you do not represent patients, you just review grants. I think you should refer them for comments to patient orgs. i guess that would be MWPCA, PANDORA and WPI and hopefully others in the future.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Kim McCleary's response on cnn.com to the PACE Trial results bums me out.

    http://www.cnn.com/2011/HEALTH/02/17/chronic.fatigue/

    McCleary's biggest problem with this study is that these great therapies- GET and the evil version of CBT- aren't available in the US! It seems apparent to me now that giving Peter White his own little section in the Spark materials to promote GET as the "only treatment proven effective" was no oversight or accident!

    i did actually hope that caa would shift it's approach when all the criticism settled in and you had more time to reflect on the fact that every aware ME patient knows what you're doing and i would think your revenues are going to continue to slide until there are not enough to support caa at some point in the not too distant future.

    something is really weird here, imo. we know there are evil people out there like Wessely and White. and McCleary is not as bad as them. so the fact that she is continuing in this destructive/ self-destructive path i can comprehend. there are people like that. but why is the board, who are unpaid patients and patients' relatives behind her?? You see her driving caa into the ground, and trying to milk the org for all the cash they can get before it implodes. why are all 15 or how ever many of you there just sitting there and supporting her?? is she hypnotoad? using jedi mind tricks on you? noone can be that charming. Am I missing something??

    I understand she is a hard worker. She seems from your reports and what i have seen that she gets a good amount of work done. It seems from my outside view that she would be a truly excellent executive vice president or chief operations officer, but i am hardly alone in my view that she has shown (over 20 years) that she is a not a good choice for CEO of CAA. She is not leading caa constructively.

    her comments on the PACE trial are a case in point. This isn't some random thing out of left field. This is the PACE trial which we have known about and known the methodology for a long time and of course has been criticised. She should have been prepared and ready to say only four things when media called:

    1. This is a scam
    2. The cardinal feature of ME is PEM
    3. They do this scam by using a fake definition to lie and say tired and depressed people have ME and
    4. These 'therapies' are human rights abuses: lying to patients to tell them they have no disease and to exercise, the exact thing that will make their severe illness even worse.

    George W. Bush was a moron and he could stay 'on message'. She can do this. Once the CAA CEO has mastered this, she can move on to 'freestyling', not before. And until she can deliver messages which benefit patients, she should not speak.

    I would prefer it if CAA would truly represent patients views such as those i've seen expressed on this forum and mecfsforums.org. I think this would benefit both patients and CAA enormously. And I and, I believe, the patient community would really rally behind CAA and we would have true unity! :Sign Please:

    But if CAA's mission is simply to stimulate ME research, but not to represent or advocate for patients, then it should make this explicit to everyone to whom it is communicating and not speak on any issue other than stimulating ME research. If a reporter asks for commentary on other subjects, refer them to an org that explicitly represents patients such as PANDORA, MCWPA or WPI.
  14. leaves

    leaves Senior Member

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    Today the CEO of the caa has lost all it's credibility for me. This was the last drop to make the cup run over.
    The Pace 'study' is criminal, sick making, abuse of patients, and the CEO allows maximal damage to be done. Ugh!

    It is time to look in the mirror. I'm quite sure that if we'd do a poll on the leadership and direction of the CAA that we'd know what the results would be.

    You can try to fire the patients you try to represent, but it is rather ineffective in my opinion.

    I say: let go of the paternalistic stance, respect the will of the people and try to find true ME representatives.

    I'm to tired to go to Tahrir Square, but else... ;)
  15. WillowJ

    WillowJ Senior Member

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    http://dxrevisionwatch.wordpress.com/2010/06/06/us-clinical-modification-icd-10-cm/


    I believe CAA would have had someone at the CFSAC meeting, but if not, the link is available and Dr. Lenny Jason is an impeccable expert to rely upon.


    Please also note:

    http://forums.aboutmecfs.org/showth...to-be-classified-as-seperate-illnesses/page23

    So the USA's CM, as regards CFS, is NOT legal, because it classifies CFS in two places and lists people who have ME (who are labelled with CFS) in another place other than where WHO placed them (our doctors are NOT trained to diagnose ME or PVFS and it is not to be assumed that they will actually use that code without some unexpected action by health authorities to train physician in the diagnosis of ME), so it does NOT conform to WHO conventions.

    CAA could at least publish a statment supporting CFSAC and Jason's existing statments.
  16. WillowJ

    WillowJ Senior Member

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    I agree. Even McCleary's complaint that "It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available" was very weak.

    I find it ironic that CAA can freely discuss treatments, yet doesn't feel qualified to discuss coding.

    If McCleary wanted to speak for us, she ought to have criticised the selection, the methods, the researchers' ties to the insurance industry, and the general failure of CBT/GET studies to assess and record reasons for dropping out of such studies, as well as mentioning the numerous studies (and numerous other surveys) which support the "anecdotal" view opposing the study's conclusions.

    If she was not able to make this kind of a statment, she should have referred the reporter to Dr. Lenny Jason, Dr. Judy Mikovits, Dr. Nancy Klimas, Staci Stevens, Dr. Tony Komaroff, Dr. Martin Lerner, the Drs. Light, or one of the organizations mentioned by Justin.
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Justin, can you provide a link to where this info can be found: "It seems apparent to me now that giving Peter White his own little section in the Spark materials to promote GET as the "only treatment proven effective" was no oversight or accident!"

    This combined with the CEO appearance of being overpaid, they need some new blood I think. "thank" her for her service, but change is good sometimes, and I think it will be worth the gamble?!

    My sister donates to this org, and I think I am going to ask her to stop!

    GG
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm pretty sure this was removed after we brought it up on the "Time for the Big Talk" thread about CAA. That was good, but the fact that it was there in the first place is really bad. They know better. I have edited my post to reflect the fact that it was taken down.

    I definitely encourage you to urge your sister to redirect her donations to WPI! Even if one doesn't have a problem with CAA, i think almost all would agree donations to WPI will do more good than to CAA. Feel free to PM me if you wish to discuss further.
  19. Quilp

    Quilp Senior Member

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    Waiting for the CAA is help us is like waiting for Godot. Yes you might be listening but are you hearing us ?

    Where were you when we needed you most ? If you were on performance related pay, do you think your budget is justified ? Just another brick in the wall, that will soon collapse.
  20. eric_s

    eric_s Senior Member

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    I have to agree that it's hard to understand Kim McCleary's comments.
    http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
    What does this mean? Does she want these services to be available and reimbursable in the USA? I think she should have made herself more clear.
    At best it is very defensive, saying that it does not matter for USA patients as it is not something that's available there. Wheter that is a smart strategy, i don't know.
    I understand an organisation like the CAA can't be very radical and wants to be mainstream, but you can't evade and hide, you have to take a position on something so central, i think. Correct me, if i'm wrong.

    This was on CNN! One of the most important media outlets in the world probably. It matters what you say there. If we want to succeed, we can't fail in such a critical place.

    What about this study of a Fukuda-defined cohort for example?
    http://www.ncbi.nlm.nih.gov/pubmed/21234629

    From the abstract:

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