1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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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. jackie

    jackie Senior Member

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    I think I LOVE you Spindrift! (and a CALIFORNIAN, to boot!) All WE need is a side-car (a SIDE CAR CAR...not a side-car DRINK!) for your scooter, and I'm with you all the way! Let's get the good Dr. SPRUNG! (THEN we cause some Mischief at the "HOME"!) The way I feel tonight...NOBODY would be safe there! (spent all day "advocating" for me/cfs awareness day on fb...and my friend Dr. Yes is being jerked around by AS*****S!) j
  2. spindrift

    spindrift Plays With Voodoo Dollies

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    Hang in there doc, Jackie and I are coming to rescue you, in the meanwhile keep a fly swat next to your bed for selfdefense.

    *spindrift 'runs' to the garage to build a side-car for the scooter*
  3. leaves

    leaves Senior Member

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    Dr Yes,
    i am so sorry you of all people have to go through this. Wanted to let you know that I am thinking of you. Lets Hope this xmrv thing is accepted soon and that you will not be dependent on these awful and ignorant people anymore.
  4. Dreambirdie

    Dreambirdie work in progress

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    I am so sorry you have to go through this kind of KRAP. :(:(:(
    Unfortunately there are FAR TOO MANY doctors like that clueless jackass idiot. :Retro mad:

    I hope we can all put our heads together to help you get the help you need.
    Please let us know what we can do.
  5. vdt33

    vdt33

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    Geez, that place sounds like a prison. :eek: I think your doctors have several clones and I've been to all of them! :eek: :eek:

    But to be at the mercy of those sadists night and day just sounds awful!! There must be something PWME/CFS can do to get the medical system to HEAR US!! Maybe if we all go stand in front of the CDC, White House, and NIH (or the UK, Norway, etc. equivalents) -- in the NUDE! -- we would get somebody's attention. If they got a look at my body, they would *run* toward the research lab!

    It worked for some women in Africa who were protesting the oil companies, I think.

    But first we have to figure out how to get out of bed and then how to stay *standing*. :tear:

    Seriously, I am so angry that you or anyone would ever have to be in your situation.

    I wish you better days. Thank God we all have the Internet and places like this Forum to go to.

    vdt
  6. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Geez Doc i was gonna suggest we hire the Hell's Angels to do some convincing but it looks like PR has it covered. We need jackets with PR colors! Darn, i hope those doctors start to listen to you - a miracle but i am hoping. S
  7. Robin

    Robin Guest

    Dr. Yes, I am so sorry this is happening to you. I relate to how severely afflicted you are, and coping with a hostile environment on top of the suffering and discomfort of illness must be insufferable. Those of us ill enough to be dependent on others could easily be in your situation. I wonder how many are out there in nursing homes or adult care facilities dealing doubt, verbal abuse, and physical abuse (by virtue of being forced to exercise or denied care)? We don't know. This illness is so under studied.

    I think that reaching out to some of the bigger guns is a great idea. Dr. Bell, Dr. Donnica, Dr. Mikovits -- maybe someone can help.
  8. jackie

    jackie Senior Member

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    Lost...spindrift is in the garage building a side-car for the scooter...i see no reason not to build two.

    Are you up for a little "trip"?

    Our "gang" sporting some new PR leathers, carrying cattle-prods and cat'o'nine-tails (just in case "somebody" needs some "convincing", as you say), driving a scooter, with two side cars, pulling a u-haul trailer, loaded with the Dr.Yes, towing the bound and gagged carcass of the stubby, spiky-haired be-spectacled know-it-all House Doc.

    I say we unload him in, hmmmm El Centro? (with a bottle of water and some stale cookies, of course) and proceed to the California coastline for some R&R! How about it?....j:cool:
  9. shrewsbury

    shrewsbury member

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    oh Dr. Yes [​IMG]

    What imperfect irony of timing. What a difficult challenge. I had a very much milder situation where a doctor who had power over me told me that CFS does not exist . And me, normally the 'white knight', ready to fight any injustice, didn't fight as it could have caused me even greater trouble. And I still haven't fought as still am afraid. What a bloody nightmare.

    Now I want to white knight again - trying to figure out how we can ride in on our white horses and carry you away.

    Boy - if I had any money I'd set up a sanatorium.

    Does anyone know if there are any good medical advocates who help people with ME/CFS deal with all the difficulties that can arise from ME/CFS? Is there a local group who provides services? An attorney who does pro-bono work? A medical-advocate? People who are successful, know how to work the system and with people and bring long-term help, and don't bring harm to the patient???

    if❤
  10. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Let's roll! I have not seen the pacific in a long long time.
  11. JT1024

    JT1024 Senior Member

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    I made a comment on WPI's FB page. There is now a link to this thread.

    If anyone has email addresses for Drs. Klimas, Donnica Moore, or anyone else that they think could help Dr. Yes, now is the time to contact them.

    Brain dead here... need sleep...

    Dr. Yes, I hope you're getting rest... We are keeping watch....
  12. spindrift

    spindrift Plays With Voodoo Dollies

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    Thanks for posting that to fb.

    I have PMed Dr. Donnica, but I don't know if she checks in here often. I will call WPI tomorrow and see if I
    can get an alternative contact for.
  13. Tammie

    Tammie Senior Member

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    too wiped out to read all the responses rt now, but I did read the original post, and Dr Yes, I feel so bad for you.....I don't have to words at the moment to really express what i felt reading this, but empathy, sadness for you, and absolute utter fury at the docs who have been treating you are a start......you will definitely be in my thoughts & prayers (not to push my beliefs on you or anything, but I do believe prayer works and I also can't really do anything else to help)
  14. dannybex

    dannybex Senior Member

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    Dr. Moore must have some contacts at ABC News -- this sickening story is ideal for one of their investigative journalism shows like 20/20 or Nightline. These doctors and this system needs to be exposed, and (edited -- to reflect what Dr. Donnica has posted.)...

    Dr. Yes -- I read your story earlier tonight and was just left speechless, and so angry at the same time that I just had to get of the computer. How you manage to post such witty, humorous, kind-hearted, yet always intelligent and insightful posts, while 'living' in an environment surrounded by such disdain and complete disrespect for humanity is a testament to your fine character, and I for one am humbled and very grateful for all you contributions to these forums.

    I am so sorry you are going through this but am so glad you posted your story. We all need to work together to make sure that something good comes out of this.

    Dan
  15. caledonia

    caledonia

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    Dr Yes,
    I had no idea you were in a nursing home.

    I've just been through the nursing home stuff with my dad the past few years. Even for old people with a family fighting for them, it can be hard to get proper care. I think the doctors are mainly there to help old people feel comfortable. Treat urinary tract infections and pneumonia and falls. The dieticians never could figure out not to feed my dad dairy. He had an allergy to dairy and would have horrible all over itching and hives if he got too much. I even had the head nurse tell me he didn't have a dairy allergy. Then there were the aides some of who were wonderful, but some who were incredibly disrespectful.

    I often thought when I was visiting, that there would be no way I could survive in a place like that with CFS. The diet alone would kill me, plus being in an institutional environment. If you don't fit in with the program, then too bad. Not much room for individuality.

    Anyway, I'm very impressed with your ability to talk back to the doc in an intelligent, calm manner even when he was being irrational and pigheaded.

    If lived anywhere near where you are, I'd break you out of there and take you somewhere safe. Maybe we can get something done for you by publicizing this.

    Hang in there!
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    What Fly said.

    Suzy
  17. Cure_ME

    Cure_ME

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    Very sorry to hear about your personal misery at the hand of the ignorant medical profession in the USA. I think what you and your nursing home need is a visit from a "Flashmob". A group of knowledgable ME/CFS sufferers and carers to give moral support and enlighten the poor dumb doctors with regard to the seriousness of this illness.

    Best wishes and good luck.
  18. Mithriel

    Mithriel Senior Member

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    A human face to our suffering would help us all. This is so terrible surely no one could be unmoved.

    Medicine used to start with someone who was unwell and look to see why, not decide that suffering was not there just because there was no test.

    Let's face it, even if they thought it was a psychiatric illness there would be more kindness. It is obvious it is being seen as a kind of malingering, just laziness. :Retro mad:

    :hug:

    Mithriel
  19. JillBohr

    JillBohr Senior Member

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    Dr. Yes, I have no idea what to say. I am at a lost for words. Please know that we all love you over here.
  20. natasa778

    natasa778 Senior Member

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    what Jill just said :(

    beyond belief!

    btw is the room where the conversation took place equiped with a security camera?? if yes any chance to 'preserve' the tape for future generations? or youtube?

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