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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. Dr. Yes

    Dr. Yes Shame on You

    Reality has a way of being very ironic about the times it chooses to bite you in your privates. Today, on International ME/CFS Awareness Day, I was woken up after four hours of sleep by one of the nursing home doctors who I had been trying to reach for two weeks. I have seen three of this nursing home's doctors, and one at an adult home before this. The doctor at that adult home declared that there was nothing wrong with me, that I was "fit as a fiddle". The first nursing home doctor told me (the day after I returned from a hospitalization with pneumonia, which had been misdiagnosed as "Nothing" by the "fit as a fiddle" guy) that I have to figure out what is really wrong with me, as there is no reason a young guy like me, without a real disease, should be in a nursing home. The second nursing home doctor told me "I don't believe in chronic fatigue syndrome, and I don't believe in global warming." When I offered to give him research papers, books, or other information establishing that it was a real physical disease, he said "No, nothing can change my mind."

    The third nursing home doctor (this is starting to sound like a Grimm fairy tale) had til now never said anything like that, perhaps because I never brought up the subject with him, but I had my suspicions. He is a short, stubby man with small wire rimmed glasses, as well as spiky hair and a ruddy complexion that make him look like he is always angry, which he actually is. He speaks tersely in a thick Eastern European accent of some sort, and constantly interrupts.

    I struggled to sit up and remember what I needed to ask him. I told him to excuse me, I am very groggy and don't have the best memory especially on waking up...While I was trying to fire up the computer that has my "to do list" on it, I mentioned to him that my allergist (outside the nursing home, of course) had ordered a CT scan and that she thinks high dose oral steroids may be necessary to treat whatever is going on.. and that I was concerned that this would be way too risky based on the herpes virus infections I have had, and the crash I suffered after only a week of low dose steroids back in '93. I also mentioned that she ordered a Natural Killer cell test, but I wasn't sure how to arrange it -- and here he interrupted, as this apparently was the last straw for the good doctor.

    "Why a Natural Killer cell test?? what has that got to do with allergies?"
    (I explained that it has to do with immunity problems and is related to CFS, and she was looking into it because of my recurrent local and systemic candida--)
    "Do you know what systemic candida is? Tell me!"
    (I manage to calmly tell him, despite the fact that the above was said like he was scolding a child, that I am not referring to HIV-related invasive Candida but--)

    "I have gotten Candida infections before.. it is caused by things being too moist.. I did not need Natural Killer cell test!

    "Don't you see what is happening here? You see one doctor. He refers you to an infectious disease doctor. An infectious disease doctor refers you to an allergist. An allergist refers you to a pulmonologist. The pulmonologist sends you for a CT scan. Everybody does a test and sends you to another doctor. It is a circle. And all the findings are extremely vague. High IgE.. that just means asthma. Take oral steroids! The CT scan will show nothing. It is a huge waste of money. I have seen higher IgE, as high as 2000."

    (I told him mine was once over 2000).

    "No it was 900, I just checked."

    (I said I would like to see that bloodwork, because the last one was near 2000).

    "The point is you don't need all these tests. Listen to me - Chronic Fatigue Syndrome is not a disease. It is a wastebasket. It is what some doctors tell you you have when they can't figure out what to do with you."

    (I struggled to think of the standard bullet points...Yes, I said, it does have excessively vague definition by that name, but there are more specific ones.. like the Canadian cri-)

    "We are not in Canada."

    (Yes, but it was an international - )

    "Look, there is no such thing. It is not a disease. It is a 'syndrome'."

    (That term is a mistake, it was given by the CDC..)

    "And the CDC are all idiots?"

    (Well, doctor... I would say that it was a political move..)

    "There are no politics. It just doesn't exist."

    (But even the CDC says it is a physical disease, not a psychological one)

    "Look, this is my opinion. Am I not entitled to an opinion?"

    (Well, if it concerns a matter of medical science, I think you have to be open to-)

    "I have made up my mind on this, and I am not going to change it."

    (Would you be willing to read some research or statements from other doctors, specialists in chronic fatigue syndrome, who have published thousands of -)

    "And - still they haven't found it. It is all speculation. I have read about it too, as much as I need to. You can look on the Internet all you want."

    (But researchers have found-)

    "They have found nothing!"

    (Have you heard about XMRV..)

    "So they have another infection, just like the herpes viruses. It is just another thing like that. Everybody has infections. It doesnt explain all of this.

    "You are a young guy, you wake up at one o clock, you don't have to do anything, your food is brought to you, the nurses take care of your every need - you are living like a King!"

    ((I'm used to a lot of crap, but this made even my jaw drop))

    "You get away from here where you live like a King and instead have to look after yourself, and your Chronic Fatigue Syndrome will disappear." [he makes a dramatic hand gesture]

    (Trying not to say much worse, nor to yell, I tell him that is an ignorant and extremely insulting thing to say.)

    "It is the truth."

    (But there have been epidemics of this!)

    "There have been no epidemics!"

    (Yes there have-)

    "No, there have not. Look, I don't want to get irritated, and I don't want to irritate you. This is my opinion. I will order what your allergist requested. But you know what I believe. There is no such thing as chronic fatigue syndrome."

    (Remember, I tell him, multiple sclerosis was derided in the same way, for years doctors denied it existed, said it was psychological - )

    "Multiple sclerosis was understood centuries ago."

    (No, only after they had MRI did they establish..)

    "That is different. With chronic fatigue syndrome there are no symptoms."

    (Of course there are symptoms!)

    "Tell me, what are they?"

    (You're looking at them!)

    "I get tired too. Listen, I wake up in the morning, I do not want to get up. My eyes are tired. I only get up because I have to. I wish I could sleep all day. I feel tired all day. Do I have chronic fatigue syndrome?"

    (No, there are like I said specific criteria and hallmark symptoms..)

    "Like what?? Name one!"

    (Well, there is something called post-exertional malaise...)

    "'Malaise'! Do you know what malaise is? I feel it all the time! I feel malaise right now."

    (No, this is unique.. After some exertion, the entire CFS state worsens, and there are documented changes in cytokines, muscle pH...)

    "Oh, 'muscle pH'! Please!" [Walks out]

    (Yes, wait! They just published a paper..)

    [He ignored me as he left, without another word.]

    I now have no hope that any doctor here can be persuaded to instruct aides to push me around in my wheelchair (which I cannot push myself) so that I can at least leave my room and get some sun (I have Vitamin D insuffiency). The nursing home doctors have, due to state regulations, full authority on all matters concerning my health; they decide whether I go to an emergency room or not, they decide whether I get transport to see an 'outside' doctor, they decide whether I am allowed to take a treatment or get a test done that an outside doctor recommends. Although for now they are not willing to fight with other doctors, and have so far been humoring them about the "chronic fatigue syndrome" nonsense, they technically can put their feet down at any time. Meanwhile the only doctors I have on the 'outside' know little to nothing about CFS themselves and would sooner drop me than fight on my behalf.

    I am in this nursing home in the first place because neither private insurance (ha!) nor even Medicaid will cover extensive home attendent hours for a "CFS" case. If it wasn't for Medicaid, in fact, I would be in a homeless shelter or worse.. and Medicaid too can pull the plug at a moment's notice, since CFS is not considered a worthy disease by government agencies anymore than it is by most doctors I have seen.

    I guess this isn't much an 'advocacy' piece, is it? But the timing - right on Awareness Day - compelled me to post this here. The CFSAC can hold twenty more meetings this year, I could test XMRV positive and we can make this ME/CFS Awareness Month, or Year... None of that will change my current situation. I don't know what can.
  2. Otis

    Otis SeƱor Mumbler

    Dr. Yes,

    I'm speechless. There's nothing I can really say except you're among friends here.

    Hang in there man,
  3. MEKoan

    MEKoan Senior Member

    Dear Doc.,

    I'm so sorry! What a perfectly shitty experience that was! I truly do not know how you cope and stay as positive as you usually are. I really, truly don't! You are one tough fella.

    It will change. It is changing. Small angry tyrants will no longer be allowed to torment you with their erroneous illness beliefs. We won't really be able to believe it was quite as bad as it is. This will come to pass.

    Hang in there Doc!

    You are loved!

  4. citybug

    citybug Senior Member

    You wrote it into a great story. It is a grim fairy tale. Can we forward the letter to other people?
  5. flybro

    flybro Senior Member

    Yes, Dr Yes you truly are experincing the young mans dream, living like a king amongst the elderly, infirm and dieing.

    What a fool you would be to swap that for an independant life, where you can build a life for yourself.

    I posted this earlier else where, but it seems to fit here...

    This is testament to how succesful Reeves and Wessley have been in asserting their OPINION about ME CFS.

    Unfortunately now that they have managed to water down the case definition so effectively, you are also more likely to find an ME patient after an autopsy, then you will from applying either the REEVES CDC criteria, or the OXFORD criteria to a live ME patient.

    Tell me who to smack about and I'm there, I'm not very big, but I got real boney fists.

    Loads of love and hugs DrYes,

    and lots of magic fairy dust.
  6. alice1

    alice1 Senior Member

    how close were you to hitting him?
  7. MEKoan

    MEKoan Senior Member

    What Fly said.
  8. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    I am so sorry Dr. Yes. I can hardly believe this kind of crap is still happening.

    I want to punch that "doctor," or at least report him. What a jerk. Poor guy hates his job; maybe we should help him "retire!"
  9. Kati

    Kati Patient in training

    Dr Yes so so sorry. I am glad you wrote down the way the conversation went on. I would suggest you forward this to Dr Donnica, Annette Whittemore and the NYT. Tis well time to go public about this and embarrass the doctors that don't know any better.

    For each action there need to be a reaction. We can't let this go by. You're too good of a man to do that.
  10. sproggle

    sproggle Jan

    Teesside, England UK
    Oh my goodness I can't imagine what it must be like to be surrounded by such morons and such negativity 24/7. :eek: (I'm unfortunate enough to live with a moron but he works alot, has no power over me &is easy to avoid &ignore! :cool:)

    I have certainly had this experience with doctors but could go home afterwards and rant &lick my wounds. To be at their mercy like you are is such a terrible situation to be in, you are truly brave and strong to continue to try to politely educate them as you do but no matter how positive and assertive you are it must feel like banging your head repeatedly against the wall. :tongue:

    There is simply no talking to people who have already decided they are selectively deaf when your speaking. So angry on your behalf!!!!!! :Retro mad:

    :hug: I know you are very well respected and dearly loved on this forum &I just hope we can all ease your suffering a little by letting you know we care &completely understand you :hug:

    Goes without saying that those Doc's are ignorant, arrogant, self worshipping Bar Stewards!!!!!!!!

    Plus my sig seems particularly relevant to this thread....

    Jan xx ;)
  11. starryeyes

    starryeyes Senior Member

    Bay Area, California
    ((((Dr. Yes))))

    This "doctor" treated you abysmally! What a complete jerk. I'm glad you wrote it here so we can offer you our support and also maybe it will help spread advocacy about CFS.

    The other day Maria said in Chat how humor is "a finely crafted thing" or something to that effect when I asked her how she manages to be so funny in spite of her cirucumstances and I thought of you, Doc. You always keep us laughing and yet you are dealing with so much stress and illness. YOU are a huge inspiration, Dr. Yes.

    Sending you love and support,


  12. sproggle

    sproggle Jan

    Teesside, England UK
    Dr Yes do I have permission to repost your story in full? I know many campaigners/advocates who would blow a gasket over this!! &More importantly people need to be made aware this sort of thing is still happening...

    Jan xx

    P.S. seriously how have you managed not to actually kill anyone?? :innocent1:
  13. Forbin

    Forbin Senior Member

    I probably shouldnt generalize here, but Ive had relatives in nursing homes who were on Medicaid. I dont think all the physicians that they saw were exactly top drawer. Such doctors are paid a pittance from Medicaid, so they are either doing it for altruistic reasons or because they cant find a better gig.

    Once, back in the 1980s, I had a similar experience when my regular doctor was on vacation and I had to see an MD at an HMO who was filling in for him. I described my history and my many attempts to get a diagnosis and this doctor went off on a rant about how, by going to several different doctors and getting several different tests done, I was just being a burden to the insurance industry (*gasp*). He said he would put an end to all my medical confusion by giving mea routine blood test and a chest x-ray. I never saw him again. I recently discovered, however, that he no longer practices medicine and he now owns and administrates a hospice, where he no doubt encourages the terminally ill not to be too much of a burden on the insurance industry.

    On the other hand

    When I showed my current doctor the SCIENCE article a couple of weeks ago he told me that he thought that he had had CFS symptoms in the 1980s, which left him feeling like he had the flu for over six months. He said, So, Im totally open to something like this.

    So, there are good physicians and bad physicians. As the old joke goes:

    Do you know what they call the guy who graduates at the bottom of his medical school class?
    No. What?
  14. Jerry S

    Jerry S Senior Member

    Wait. I thought 90% of doctors understood CFS. The CDC's US Healthcare Provider's survey proves it. Didn't Dr. Unger have that research right up there on her slide at the CFSAC?

    Thanks for bringing us back to reality, Dr. I can't tell you how bad/mad it makes me feel. Nobody should ever be treated like that! It's just a dirty rotten shame.

    Thanks for speaking up, Dr. Lots of folks here care about you. I just don't know what to say anymore....
  15. akrasia

    akrasia Senior Member

    What a horror. Your restraint is miraculous. When Dr. Luttinger suggested I drink a cup of coffee and get on with my life, I realized, to my dismay, I had "Suffer Fools Gladly" disease, though the Gladly part has been extremely difficult to embrace. Now, every time I hear Bach's Coffee Cantata I think of her.

    It's a most appropriate story for "Awareness Day". Just so sorry that you had to go this. See you in Church.
  16. spindrift

    spindrift Plays With Voodoo Dollies

    Have electric scooter, g-suit, seated walking cain and a loaded gun. Will travel.
    Please post geographic coordinates of target.

    OK, now that I have said what I really feel like doing, everyone lets brainstorm
    how we can help.
  17. citybug

    citybug Senior Member

    I have an extra VIP kit I could mail you if you could do it. Or we could ask Dr. Mikovits if she would test you (sending a phlebotomy company would be good!).
  18. JT1024

    JT1024 Senior Member

    Dr. Yes,

    I'm so sorry you've been treated so horrifically and for so long.

    Where you are living in New York and Dr. Donnica Moore is somewhere in that viscinity, perhaps contacting Dr. Donnica would help??? Since she is the spokesperson for WPI now and Annette Whittemore understands the devastation of this illness, bringing your plight to their awareness couldn't hurt.

    You are a great candidate for treatment. You represent many of us on this board and your wit and wisdom has brought us needed comic relief. It's time for us to help you!

    I see Sproggle has asked you repeatedly for permission to repost your story. It would be great to post it to the WPI facebook page today, on Awareness Day, to let others see the tragedy and injustice you have endured.

    You're in my thoughts and prayers ~ JT
  19. spindrift

    spindrift Plays With Voodoo Dollies

    Good one kdp. Doc, are you in any XMRV study yet? If not I am sure Judy would get you in.

    JT1024, maybe just post a link to this thread on WPI facebook with a little explanation of
    what a great forum member doc has been. He is probably resting now after such a crapy
    day. I am not on facebook, so if you kindly would post it there.
  20. Hope123

    Hope123 Senior Member

    Dr. Yes,

    I would suggest you cut and paste what you just wrote juxtaposing it with the abstract of that recent CDC article talking about how MDs know so much about CFS and send it through the CFIDS Association of America recent e-mail advocacy activity today, which was aimed at Dr. Koh, your Congressional Representatives, etc. I also suggest you send it to Dr. Elizabeth Unger.

    Also save for CFSAC testimony in October/ November.

    Having worked in a nursing facility, I know you might be limited by your MD choices. I use to do rounds at facilites and would have patients/ their families begging me to see them because their docs rarely came around or didn't pay much attention to them. (Not that I was spectacular or anything but just because my schedule allowed me to see people regularly.) If your primary won't order the tests, bypass him and get the specialists to order it for you.

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