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Nancy Klimas Opening ME/CFS Clinic Next Month

Discussion in 'General ME/CFS News' started by Cort, Sep 14, 2009.

  1. calzy

    calzy Senior Member

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    And...she is still with the University of Miami, with a access to research labs.
  2. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
  3. Cort

    Cort Phoenix Rising Founder

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    I talked with Dr. Klimas briefly at the CFSAC meeting. She said the clinic had actually been delayed for a year because of a conflict between a potential investor and herself. It turned out that a friend of hers had a friend who provided some money for the clinic; after he did that he expected that she would create a product line and sell supplements (ie FFC) and on and on and she said that was exactly what she didn't want to do and it took over a full year apparently to extricate herself legally from that situation - she said it was a real learning experience.

    She seems to be one of the most if not the most respected people in the field. She is also hooked in everywhere. I don't know how good at treating ME/CFS she is - she has not been a full-time physician for a long time (if ever?) - she does too many things for that but I think her intentions are really pretty good.

    On the other hand I've never gone to a clinic where the vast majority of my time wasn't spent with the doctor themselves. I don't know how the nurse practitioner thing is going to go over. Its a hurdle for sure. If there's anyone I trust in this field is Dr. Klimas - she has given so much in so many ways to chronic fatigue syndrome. She's been in every advisory position you can imagine. She was the volunteer President of the IACFS/ME. Now she's on the CFSAC panel.

    She is going to train the physicians herself - which is very good. I think one of the problems with the FFC Centers is that it's difficult to train people in how to deal with this illness. If you think you're better at treating people than the normal MD and you want to really make an impact you really need to be able to train people. I'll bet the Nurse practitioner thing is her way to reduce costs while expanding treatment.

    Its too bad that medicine in general is so darn expensive. What a mess our system is!
  4. Cort

    Cort Phoenix Rising Founder

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    in a followSeeing Dr. Cheney is horrendously expensive. Yes they do try to keep patients time with him to a minimum if asked but it never seems to really work out. My experience was that I was always amazed at how much talking to him cost.

    He probably isn't getting extremely wealthy with his practice but the way he manages it pretty much insures that you have to either have good financial resources or sink deeply into debt (or bankruptcy in my case) to see him.

    The problem is that his need to talk overrides any real concern he has over a patients finances. He just loves to talk - $600 an hour listening to him talk was a painful experience. I pretty quickly learn not to ask him any questions at all.

    There's no doubt about his commitment to this illness that's for sure but his Clinic is managed to accommodate his particular style - which is sitting back and ruminating on a subject.

    I grew to think of him as a frustrated professor actually. He didn't help me much but I know he does help some people - I was just informed of someone that did very well at his clinic. I' m sure that he probably helps most people at least to some extent. All in all seeing Dr. Cheney was, however, a frustrating experience for me.
  5. calzy

    calzy Senior Member

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    Perfect explaination of Cheney Cort! Klimas is a great physician, (she is mine)just isnt accessable due to her obligations to UM. I always see an intern prior to seeing her, they get all of the mundane info and she spends a long time with me, trying her best to tweek symptom control. Now, since XMRV she may change her protocal. I see her Dec 3rd and will share any new treatment tests.etc.
  6. Nielk

    Nielk

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    I see Dr. Derek Enlander in New York and he accepts my medicare and many other insurances. He is DEFINITELY not doing this for the money. His care is excellent. What would Dr. Klimas' clinic do for me that Dr. Enlander cannot do?

    Nielk
  7. shrewsbury

    shrewsbury member

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    hi calzy

    Aren't you fortunate to be a patient of hers! And aren't we fortunate that you're willing to report back after your Dec 3rd meeting with her!:D

    Will be interesting to see if there are any changes in her protocol.

    Has she asked her patients to test for xmrv?

    islandfinn:)
  8. calzy

    calzy Senior Member

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    Hi there,
    As I mentioned, she is not accessible prior to an appointment, so I wont know until I see her. Im sure she is testing:confused:
    Readers, I am not a patient to her new practice, this may have to change, Im not sure what she has going on with the UM.
    And yes, I know how lucky I am to have her for a doc. Still cant remember how I did it? lol...memory loss
    I will be happy to share with all of you.

    MJ
  9. Marylib

    Marylib Senior Member

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    Dr Klimas

    The best medical care I ever during one period of my life (pre ME) was from a nurse-practitioner.
    So I am all for Dr K's project -- get the nurse practitioner's trained in to assess, etc. Get more doctors trained in ....get clinics opened in new places...ones that don't sell "SHINE" supplements (oh the specter of Dr T)
    It all costs money and may somehow the government can get educated and fund them.
    I can dream, can't I?


    Would be great if people shared with us how all these appt's go with Dr K and with Dr P and all the few other stalwarts!
  10. Marylib

    Marylib Senior Member

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    For Nielk

    Say Nielk,

    Would you be willing to post about your experiences with Dr. E...treatments, etc?
  11. BEG

    BEG Senior Member

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    It's Chronic Fatigue SYNDROME.

    I'm disappointed, too, gracenote, and somewhat astonished that a doctor of her stature in the Chronic Fatigue SYNDROME community would drop the most important word in the disease. Chronic Fatigue is a negative connotation, and smacks of the "I'm tired, too," variety of responses we so often hear. Chronic Fatigue is defined in the Empirical Definition. Maybe she is going after those 4 million patients instead of the 1 million genuine Chronic Fatigue Syndrome patients. I hope it can be corrected.
  12. calzy

    calzy Senior Member

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    actually its CFIDS, and she refers to it that way when I speak with her.
    and I agree that I get better care from a nurse practioner in my gp's office.
  13. Warbler512

    Warbler512

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    Suggestions

    It's great to air out our concerns here. The site has a contact e-mail; better yet to use it and write the clinic. Some here have done that. I spent considerable time doing so yesterday, and appreciated people posting here.

    Beyond the name, a concern of mine is what the bill will be spent on. The summary .pdf of Canadian Consensus is copywritten by Carruthers and another, but the full deal is in the Journal of CFS that Klimas helped start. Some form of it, for patient and doctor education, should be up there.

    Ten years ago, my first Dx of "CFS"/CFIDS came out of a pediatrician with quite a waiting list. His office had sent a list of tests they wanted you to try to get done before seeing him - mostly immune oriented, little that an HMO did not cover, actually (Sed Rate, CD4/CD8, EBV titers, CMV antibodies, etc.). I got a Dx on visit #1. I think Klimas' clinic should offer a similar list.

    Now, infection PCR tests, that's different, especially if it's not a regular lab like LabCorp, Quest, Specialty, etc. That's where I forked over the bucks in ensuing years, even on a PPO. But we don't know what Klimas' lab expects beforehand and what they will test for.

    My biggest beef is the referral-in-writing bit, and I asked them why.

    This is a toughie. I could not understand, once I moved to Virginia, why every freakin' specialist was acting as a "consultant" and needed a referral. I was on a PPO: why did it matter? A chatty, Cheney-like neuropsych' explained the changes going on in the last couple of years. The government-medical-insurance industry is moving toward a system where all your records, in fact your entire medical history, can be accessed electronically. He was concerned about breach of privacy. We both agreed that the independence a PPO provides of choosing your own doc' is compromised. The "system" requires that all spokes lead back to a treatment hub, a central PCP who knows what's going on. Thus, all specialists want at least a PCP's National Identifier Number and perhaps a wink-and-a-nod.

    Whether this has to be in writing - Klimas' instructions are the first I see this. Tell your PCP you want to see an infectious disease specialist, that's one thing. Ask them to write a letter to a specific doctor at a "Chronic Fatigue" clinic - if they'll even do it, they're going to wonder what on earth for, what Klimas vice someone they know is going to do.

    Anyway, if you have concerns, voice them to the clinic. I think Klimas' heart is in the right place, though she's taken a lot of **** for striding the political fence. Unfortunately, some people who affect change have to do this for a long time 'til the circumstances allow, even though they know it's costing others tremendously.
  14. August59

    August59 Daughters High School Graduation

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    I wish these clinics and doctors would have been available to me $40,000 ago. I might have $40 to give them now. At least I can watch some of you hopefully be cured. My prayers would be that all of you are cured.
  15. Chris

    Chris Senior Member

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    those fees

    Hi, guys, I wonder if you are not being a bit unrealistic about what it costs to run a clinic (last I heard rental was not cheap in Florida), staff it, buy equipment for doing diagnostic tests, and have a bit left over to pay Nancy a salary--she can't work for ever for nothing! If we want her to keep working on our disease--and I think we do--she needs to make a decent living, and you don't get paid for writing research papers--in fact, most journals these days charge by the page. Compared with Cheney's fees, this is very low. I would hope she makes a decent living, but I don't think what she is doing is the highway to quick obscene wealth. Best, Chris
  16. Nielk

    Nielk

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    those fees

    It might very well be that she needs to charge those astronomical amounts to keep the clinic afloat. But, realistically, how many of us can really afford those fees?

    Especially considering that at this time, there is no cure for our disease. I feel in a way, it's giving false hope for patients. What treatment can she offer that we don't know about at this time? Are her current patients getting cured at a higher or faster rate than the rest of us?

    Nielk
  17. Marylib

    Marylib Senior Member

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    Dr Klimas

    I think we can all relax about Nancy Klimas.

    She is not claiming her patients are getting better than other doctor's patients. She is not in competition with anyone. She is one of the good guys. It costs big bucks to set up clinics in the USA. That is a wretched truth. And nurse practitioners are a wonderful way of getting more and more people trained into how to treat us. And perhaps to treat us at a more reasonable cost.

    Perhaps she is left the "Syndrome" off the title of the clinic because it will be one less word to tear down when it is time to replace it with "XAND"..:D..if we are 'lucky' and xmrv is causative.

    (Just a wee joke...I understand why it hurts to see that fatigue-word up in lights)
  18. andreamarie

    andreamarie Senior Member

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    Cort, she was a practicing physician. My aunt was her patient. My aunt, like me, had a dx of Sjogren's syndrome, but I suspected she had CFS and since she was living in Fla part of the year, told her to see her. Unfortunately, once she started the Ampligen trials, she was totally inaccessible to my aunt, and left her with a dx of a severe anemia, but could not be reached. I know, because I tried for weeks. Because my aunt was living in Western New York for part of the year, Dr. Klimas referred her to Dr. Bell. After my experience with him, I discouraged her. Also, it was a three hr drive.

    I am hoping that she wil share her testing,etc. with other legitimate docs who see CFS patients. When I was dx fifteen years ago, I had two insurance policies and told the doc I saw to do everything he wanted. I had labs sent all over the country, saw multiple specialists and it didn't cost me a thing.

    The following year I saw the doc I wanted to see originally. She continued to treat me, tried various things that somehow we got covered by insurance. She has a brilliant reputation,is an academic i.d. specialist and I'm hoping she'll find out what Dr. Klimas is doing. I have an appt with her close to Xmas. I also saw one of the big names in i.d. internationally a few years ago. He told me he'd stopped seeing CFS patients but would be available to me. (He was a bit of a lech and I was having a very good hair day.) I'm sure Dr. Klimas would take a call from him.

    I could go to Fla but it would bleed the little money I have left and I would want to see if her clinic has any success. I'm on Medicare and it would be all out of pocket because even though I have excellent supplemental insurance through a retirement fund, if a doc doesn't accept Medicare, the supplemtal insurance won't pick up any expenses. I have not had trouble seeing specialists but that's because of the type of insurance I have and my multiple dx. Crohn's alone has twelve extraintestinal manifestations (the patient of the week on "House" this week had several.)
  19. calzy

    calzy Senior Member

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    ;)I second what you say Marylib!

    MJ
  20. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Nancy Klimas Clinic

    Hopefully this can get on its feet quickly. I have insurance, so I am not going to spend a lot of money out of pocket!:eek:

    Perhaps I wll make an appt with Dr. Derek Enlander in NY City?!:eek::confused::rolleyes:

    I believe I emailed his office some time ago, but never heard anything back.

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