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Calling all activists to help make a change

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This topic contains 7 replies, has 3 voices, and was last updated by  uprising 4 years, 8 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #37781

    Copy_cat
    Participant

    The NAMI web page on ADHD and Coexisting Conditions states:

    ” Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder and conduct disorder.”

    That here: http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/ADHD/ADHD_and_Coexisting_Conditions.htm

    I called NAMI , told them I was reading their page on “ADHD and Coexisting Conditions” and asked :

    Antipsychotic medications and mood stabilizers have been proven to be effective on ODD by who ?

    Does the FDA approve of these drugs for ODD ? (the correct answer is no)

    Are you telling parents to use these drugs off label ??

    Did you know that off label promotion of psychiatric drugs is illegal ?

    I want that statement off their webpage .

    Want to help ?

    I was told to write [email protected] for the questions above and my complaints.

    Please help by doing the same and by posting any ideas for getting them to remove that fraudulent information used to push pills on kids.

    “oppositional defiant disorder” ODD = lack of father disorder , I told NAMI that.

    I said the f word wile speaking to a male rep and he said “I don’t appreciate the profanity”

    I replied “I will tell you what the ultimate fucking profanity is, it’s you people lying to parents pushing these drugs on kids”

    Anyway write [email protected]

    ADHD and Coexisting Conditions

    Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder BY WHO ???

    #37782

    Copy_cat
    Participant

    My letter,

    Me
    To [email protected]
    Today at 1:46 PM

    The NAMI web page on ADHD and Coexisting Conditions states:
    ” Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder and conduct disorder.”
    Thats here: http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/ADHD/ADHD_and_Coexisting_Conditions.htm

    Antipsychotic medications and mood stabilizers have been proven to be effective on ODD by who ?

    That is my question, thank you.

    #37784

    Copy_cat
    Participant

    NAMI risperdal

    This has to stop.

    #37817

    Steve McCrea
    Keymaster

    Are you getting any response? I have not found national NAMI to give a crap about facts or what anyone thinks, including their own constituency. Local NAMIs are different sometimes, but national NAMI doesn’t seem to even provide space for comments or feedback. They’re so bought off, I wonder if there is any way to make an impact? I’ll be interested to hear if you get a reply.

    — Steve

    #37841

    Copy_cat
    Participant

    Are you getting any response? I have not found national NAMI to give a crap about facts or what anyone thinks, including their own constituency. Local NAMIs are different sometimes, but national NAMI doesn’t seem to even provide space for comments or feedback. They’re so bought off, I wonder if there is any way to make an impact? I’ll be interested to hear if you get a reply.

    — Steve

    Here it is.

    Sir,

    We recently spoke on the phone regarding some of our information on oppositional defiant disorder (ODD) and you are correct. We are updating the wording on our webpage on “ADHD and Coexisting Conditions” (www.nami.org/Template.cfm?Section=ADHD&Template=/ContentManagement/ContentDisplay.cfm&ContentID=106383) to reflect the conclusions of the American Academy of Child and Adolescent Psychiatry (AACAP).

    On its webpage on oppositional defiant disorder (ODD) at http://www.aacap.org/AACAP/Families_and_Youth/Resource_Centers/Oppositional_Defiant_Disorder_Resource_Center/FAQ.aspx#ODDFAQ3 , the AACAP states:

    · “Throughout all ages, medication may be a useful component of treatment to help address specific symptoms or to treat co-existing conditions (e.g., depression, ADHD, or anxiety disorders), although there is no single medication which specifically treats ODD. There is also limited research data on the safety and efficacy of medications in the treatment of ODD.”

    Thank you for pointing out this error to us.

    ____________

    It is not changed yet , I will keep checking.

    They have been pushing antipsychotics for so called “ODD” for a long time.

    see:

    “Risperidone for Adolescent Aggression”

    Medical Focus, Winter 1996

    http://web.archive.org/web/19961221104126/http://www.nami.org/

    #37842

    Copy_cat
    Participant

    It is not changed yet, http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/ADHD/ADHD_and_Coexisting_Conditions.htm

    NAMI can be reached by calling 1 (800) 950-NAMI (6264), Monday through Friday, 10 a.m.- 6 p.m., EST. Business callers, including those seeking particular NAMI staff members, should call 1 (703)524-7600.

    [email protected]

    #47196

    Copy_cat
    Participant

    Are you getting any response? I have not found national NAMI to give a crap about facts or what anyone thinks, including their own constituency. Local NAMIs are different sometimes, but national NAMI doesn’t seem to even provide space for comments or feedback. They’re so bought off, I wonder if there is any way to make an impact? I’ll be interested to hear if you get a reply.

    — Steve

    Got a reply,

    This started some time around January 14, 2014 and today the page was changed, the scary statement ” Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder and conduct disorder.” has been removed.

    I must have called 20 times since then complaining and yesterday I posted about it here https://www.madinamerica.com/2014/09/psychrights-seeking-plaintiffs-sue-physicians-label-prescribing-children/ and posted the NAMI phone number.

    I kept saying “not FDA approved” over and over and after my phone call today (and I suspect some calls from others who saw the post) that scary statement was removed.

    Feels good, we can make a difference.

    • This reply was modified 4 years, 8 months ago by  Copy_cat.
    • This reply was modified 4 years, 8 months ago by  Copy_cat.
    #47199

    uprising
    Participant

    Way to go, Copy_cat! Thanks!

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