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A Doctor's Wake-Up Call on "Awareness" Day

Discussion in 'Action Alerts and Advocacy' started by Dr. Yes, May 12, 2010.

  1. Min

    Min Senior Member

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    This isn't care, it's institutionalised abuse that the Nazis would have been proud of.

    You can't even have a member of staff to push your wheelchair! I'm so very sorry you are experiencing this living hell on top of your debilitating illness.:hug:

    When did doctors stop believing that physical illnesses which have no current diagnostic tests are real?

    hang in there Dr Yes
  2. Robin

    Robin Guest

    Perhaps we could fundraise to hire an advocate? A good social worker could help Dr. Y (or should I say King Yes of Castle Nursing Home? /eyeroll) but apparently the one on staff at the nursing home hasn't been helpful. I'm unsure what profession such an advocate would have -- attorney? public health professional? physician? Would anyone have any ideas?
  3. JT1024

    JT1024 Senior Member

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    Massachusetts
    Does anyone know if Dr. Yes is from Long Island? Does he have any family close to where he lives?

    Just trying to think of factors when finding a nursing home...
  4. shrewsbury

    shrewsbury member

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    Calling all people with knowledge of the NY area health system and nursing homes

    I'm so glad to see the outpouring of care for Dr Yes, and how so many want to help.

    I can only reiterate that I think we have to be very careful. We don't want to do anything that will bring harm to Dr Yes; We do want solutions that lead to a fairly quick improvement in his situation.

    Does anyone know:

    • how to find a competent medical advocate in the NY area?

    • any contacts with the local ME/CFS groups who can help?

    • any effective people within the medical system who will only make things better for him and not worse

    • anything about any alternative living situations for Dr Yes - negative info being as important as positive
  5. _Kim_

    _Kim_ Guest

    Let me say that again:

    Dr. Yes, you are loved!!


    maybe one more time:

    Dr. Yes, you are loved!!


    I want to point out that Dr. Yes posted his story for us. I truly hope some help comes out of his telling it, but the intention was to offer evidence that this kind of mistreatment is happening to someone with ME/CFS on International Awareness day in New York, USA in 2010. Here. Now. This kind of mistreatment is happening.

    Can we help Dr. Yes find a better home? I'm hopeful that we can do this. But what about the next Dr. Yes? This isn't an isolated case, with one isolated jerkoff doctor who doesn't believe in ME/CFS. This is happening elsewhere. And soon may be happening more. Many in our population are being cared for by elderly parents. Where will they go when their parents are too old or ill to care for them?
  6. outofstep

    outofstep

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  7. _Kim_

    _Kim_ Guest

    SPWC seeks bed in NY nursing home. Must be within one hour from Manhattan (or better yet, in Manhattan). Urban area preferred. Private room essential (allergies). Good and abundant food a must.
  8. rebecca1995

    rebecca1995 Apple, anyone?

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    Northeastern US
    Excellent summary, Kim. To this I would add:

    -Nursing home must have good HVAC system, essential for people with allergies
    -Must provide aides to push residents' wheelchairs, or at least make an exception in special cases

    Dr. Yes wrote that his nursing home won't get people to push his manual wheelchair outside. Wouldn't it be great if he could have an electric wheelchair, then? But insurance companies won't pay for power chairs for people in nursing hiomes. Why? Because they assume that wheelchair assistance is being provided! It's another one of those crazy Catch-22s that seem to define the lives of PWME!

    Keep the faith, Dr. Y. :hug:
  9. jackie

    jackie Senior Member

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    Just one of many ideas to throw into this brain-storming mix.....IF we can't relocate him (and he MUST stay in that hell-hole indefinitely) can we "fund-raise" for assistive devices to make his life easier? (of course we have to determine - with his help - what those would be) What about a "hoveround" chair-thingy (the tv commercial shows that they train you in using them)...don't know the details but could easily find out. Also...need to know the "rules" at the hell-hole about bringing in "outside" gadgets etc. - maybe a true electric wheelchair would be better...just some crazy ideas....to help our most "humane" of friends...feel human! j


    (Jerry...I may be in the "State of Confusion"...but I thought you said you LIKED that excessive flagellation? oh - that wasn't YOU, that said that?)
  10. Andrew

    Andrew Senior Member

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    This is horrible. I am so angry I can hardly type.

    Some States have an ombudsman group that helps people in nursing homes who are being mistreated. A problem you will face it that the ombudsman group might be anti-CFS too. I guess if I were to try to present my case to a third party, I would not get stuck in the details. The CDC says it's a physical illness. You have citations from journals backing up with the CDC says. The doctor refuses to respond to a legitimate illness that is recognized by the CDC and supported by research. This is abandonment of patient. And if they don't like something that is Canadian, there is also the New Jersey manual.
  11. dannybex

    dannybex Senior Member

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    Seattle
    I very much agree in general, but Dr. Moore did offer to help him find other media connections, as long as she can get his name, number, and contact info -- and those connections could possibly help really protect him, and might have other resources/connections to advocacy options.

    But you're right -- he needs some sort of advocate ASAP to help him put all these things together -- and watch out for him at the same time.

    Isn't there a way the moderators or Cort could send him an email? I'm sure he's completely drained after writing out his story (and just going through that hell!), but I'm very concerned if he's okay...
  12. Gerwyn

    Gerwyn Guest

    This is why i get so angry at people repeating psychobabble.This is the result a bigotted uninformed doctor who has been brainwashed by the psycho lobby and a defenceless sufferer of our illness being abused as a result
  13. Orla

    Orla Senior Member

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    Danny, I would say better not as he might be getting overwhelmed with messages he might never be able to reply to (though I am the pot calling the kettle black here as I PM'd him myself) . I got a message from him this morning. He is wrecked from sleep deprivation so might not be able to respond here for a while.

    Yes, me too Gerwyn. One of the main reasons I do some work around awareness (as much as I can) is that I want to get out there that this is a physical organic medical condition, and that research has shown this to be so.

    Edit: Sorry, I didn't really mean to put people off sending him messages, it is not up to me. I just meant that if people do he might not be able to respond, or respond for a while.

    Orla
  14. _Kim_

    _Kim_ Guest

    He's okay. Wiped out, but okay.
  15. sunlady

    sunlady Guest

    Have been watching PR for a while now but have felt too unwell to post before.

    Can someone contact Marly Silverman of PANDORA ? She is a great advocate for sufferers of ME. If anyone can help she can.
  16. shrewsbury

    shrewsbury member

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    thanks for the idea sunlady. Welcome to the forum.

    I just emailed Marly, but think she's on holiday. If anyone has a personal relationship with her, or with any advocate experienced in the NY area, could you please write as well? thx if / sb
  17. Dreambirdie

    Dreambirdie work in progress

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    N. California
    Hi Sunlady-- I emailed Pandora a note, with a link to this thread. Hopefully they will be in touch. Thanks for the good idea.

    ETA: Hey IF great minds think alike!
  18. Melodie

    Melodie Guest

    Quote "jackie

    Just one of many ideas to throw into this brain-storming mix.....IF we can't relocate him (and he MUST stay in that hell-hole indefinitely) can we "fund-raise" for assistive devices to make his life easier? (of course we have to determine - with his help - what those would be) What about a "hoveround" chair-thingy (the tv commercial shows that they train you in using them)...don't know the details but could easily find out. Also...need to know the "rules" at the hell-hole about bringing in "outside" gadgets etc. - maybe a true electric wheelchair would be better...just some crazy ideas....to help our most "humane" of friends...feel human! j"

    If the Doc wants an electric wheelchair and it is do-able I think it's a great idea to fund raise for it.
  19. Robin

    Robin Guest

    I don't think Dr. Y would mind if I shared that I just spoke to him and he's OK. He's going to respond when he feels a little better; he's just really tired. He has read the thread though and all of the good thoughts and love cheered him up! :)
  20. flybro

    flybro Senior Member

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    pluto
    Hey Doc,

    LUBS YA LOADS
    LUBS YA
    LUBS YA
    LUBS YA
    LUBS YA
    LUBS YA




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