1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Survey sent to me from Dr. Komaroff

Discussion in 'ME/CFS Doctors' started by soxfan, Mar 3, 2014.

  1. soxfan

    soxfan Senior Member

    Messages:
    685
    Likes:
    238
    North Carolina
    I was a patient of Dr. Komaroff briefly in 2011. Somehow I thought I had hit the jackpot when I had written him a letter and he accepted me as a patient. Anyway...he seemed very nice and caring...did a physical exam and took a lot of blood.

    About a week later I received a letter from him with my test results and an explanation of his findings on my exam. He stated he could not positively diagnose me with CFS although I had many of the symptoms. He really gave me no helpful hints or any type of treatments but gave me a follow up appt. for 4 months later.

    When I saw him 4 months later he spent a total of maybe 5 minutes with me. Wrote me out a prescription for Florinef and gave me another appt. for 4 months. He again offered nothing else in the way of treatments.

    I never went back to the 3rd appointment as I felt he wouldn't have anything more to offer. Well I just received in the mail a survey from him about my symptoms etc. and questions on improvements or new problems. It seems kind of strange to me that I would get this from a doctor I only saw twice...3 years ago...and who offered me no support....treatments...or other testing to try and figure out what was going on with me.

    Why would anything have changed since then if he wasn't treating me? I did fill out the survey in order to hopefully help others with this illness but still feel it was a strange thing to appear in my mailbox at this time. I do think he is very active in his research for CFS but also feel that he is not patient friendly. Maybe if I had gone back for another appt. something would have changed but since he did say I didn't fit the CDC criteria for CFS I am not sure what would have been different....

    I just wish he would have dug deeper into why I have the symptoms I still have and maybe done some other testing other than the standard blood work....

    I am not writing this to criticize him in anyway but I am just curious as to why I would have received this.....when I am not even a patient anymore...or really never seemed to be.
     
  2. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    65
    Likes:
    45
    argentina
    surelly he must be and idiot, and that mail you received was sent automatically to a list of emails in his database, Clearly he doesn't cares about you nor any other patients, like it happens with most doctors
     
  3. dsdmom

    dsdmom Senior Member

    Messages:
    390
    Likes:
    45
    It's my impression that he is simply a researcher. Which means zilch when it comes to clinical help.
     
  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,327
    Likes:
    1,512
    Left Coast
    I agree you're just on an email list. I still get emails from a dentist I saw in 2009 for a few months for one specific thing.

    It was nice of you to fill out the survey. I hope you included a note about how disappointing your experience with him was.
     
    peggy-sue likes this.
  5. soxfan

    soxfan Senior Member

    Messages:
    685
    Likes:
    238
    North Carolina
    It actually came with a type written letter....I guess they had sent the survey last fall and I either lost it or never received it. They wanted me to fill out the new one and send it back. I am sure I am still in the data base and he has no clue he hasn't seen me in 3 years.

    He should never take on patients if he doesn't intend to treat them or at least try to relieve the symptoms or help us cope better. I actually ended up sending an email after the fact to his assistant because I left out some information I wanted them to know and yes...indicated I was clearly disappointed in my experience with him....not that it will do much good.
     
  6. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,208
    Sth Australia
    So many CFS specialists are in their own little words just focusing on something or another within this illness and if you dont have whatever is the thing they are into, you are left out in the cold one could say. Others (all mine are frustrating like this).. tend to just focus on one or two things at the most per visit so I can walk out with a prescription for Florinef but none of my other issues were addressed!! (for the trouble it takes to possibly get me to an appointment.. its disheartening).
     
    peggy-sue likes this.
  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,327
    Likes:
    1,512
    Left Coast
    I find saying my peace is more for me. Having expectations that it might help isn't even in my thoughts.
     
  8. WillowJ

    WillowJ Senior Member

    Messages:
    3,135
    Likes:
    2,824
    WA, USA
    all my doctors are like that. They just don't have time at an appointment to go over more things, and if they take more time they don't typically get paid for it. This makes it difficult for us, because I just can't make it to many appointments, yet I have many issues to discuss. However my PCP will chat by email all I like, which helps.
     
    Valentijn and SOC like this.
  9. Andrew

    Andrew Senior Member

    Messages:
    1,977
    Likes:
    1,267
    Los Angeles, USA
    Florinef is a commonly used drug in CFS. Many CFS sufferers have low blood volume, and when they stand they experience orthostatic intolerance. Florinef increase blood pressure and some patients finds this helps.
     
    Valentijn and WillowJ like this.
  10. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    In the US, at least, this is certainly the case. Insurance will only pay for a specific length of time per appointment, so it's established practice to only deal with as many symptoms as they can in that time, usually 2-3 at most. You're expected to make another appointment, which is difficult for most of us.
    I suspect this is why some of our ME/CFS specialists will do phone consults. We have far too many issues, and not nearly enough time during face-to-face visits. My PCP, on the other hand, is far to high-and-mighty to consult with patients by email or phone. If I'm lucky, I can email a very simple question to my PCP's nurse and maybe get an answer. :rolleyes:
     
    WillowJ likes this.
  11. soxfan

    soxfan Senior Member

    Messages:
    685
    Likes:
    238
    North Carolina
    I really have no idea why I was even given florinef as I didn't say I had any problems with OI. I think he just assumed it would help me in some way. But as I stated in my post...he actually wrote in his summary to me that he couldn't make an absolutely definite diagnosis of CFS.

    Maybe because he was a well known CFS doctor from Boston I just assumed he would be able to help me. I usually am able to make my appointments but driving into Boston...parking...then waiting for the appt. takes many hours and to just spend 5 minutes with me was totally inappropriate. I realize these doctors are busy but I never in my life have I ever only had that short of time spent with me. Also these doctors should understand how difficult it is for us to tolerate long...stressful days.

    I have to say my Lyme doctor did do phone consults in between the time of face to face appts. and they didn't charge as much...it worked out well.
     
  12. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    65
    Likes:
    45
    argentina
    5 minutes! how insulting! that's no doctor, that's a common businessman. you know what? things like what you describe, and worse, have happened to me dozens of times. Because of that, sometimes I fantasize that there's a global CFS pandemic affecting every human on earth... have any of you ever though about it? it sounds mean, but I'm so fed up of being mistreated and insulted
     
    soxfan likes this.
  13. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    65
    Likes:
    45
    argentina
    now that I think about it, correct me if I'm wrong, viruses have appeared out of the blue before, like HIV... it would be certainly possible for a virus to appear that would cause a non deadly infection which symptoms were fatigue, postexertional malaise, pain, cognitive problems, etc... in such an escenario we would rule the world, being already prepared to live in such circumstanced... like in that movie where all the world became blind, the ones that where already blind, where like superheroes compared to the new ones... just a nasty though, don't pay much attention to me
     
  14. beaverfury

    beaverfury beaverfury

    Messages:
    457
    Likes:
    463
    West Australia
    With any luck, a pilot study that Dr Komaroff is putting together with Michael VanElzakker on vagal nerve infection in me/cfs will go ahead soon.

    There's a possibility that Dr Komaroff will use such survey results for studies like these, though i'm only guessing.

    Let's be nice to anyone who is looking to get some answers for this research unfriendly disease. These are the people that can potentially ease our suffering.

    Unfortunately, bedside manner is often a casualty in movers and shakers. Jesus could be pretty blunt as well.
     
    usedtobeperkytina likes this.
  15. soxfan

    soxfan Senior Member

    Messages:
    685
    Likes:
    238
    North Carolina
    I am not criticizing Dr. K or the work he does. I was just telling my side of the story of the disappointment it was being a patient of his. It took me almost a year just to get in to see him and I really had high hopes that he could give me some answers since he surely is an expert in this illness.

    I don't exactly understand how he can find answers by sending out surveys. How are people being helped when no treatments are being offered. Maybe I am the only patient of his that ever had this experience but I think it is fair to write about our experiences with doctors.

    I stated I thought he was a great researcher and I know has done a lot of work for this illness...I am sure that anyone who goes to see him as a patient would have high hopes of at least some answers...or even some testing to find out why we have certain symptoms....
     
    GalaxiiGrl likes this.
  16. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    65
    Likes:
    45
    argentina

    good deeds doesn't wipe past bad ones; as a whole, this doctor is, in my humble opinion not a very good person
     
    soxfan likes this.

See more popular forum discussions.

Share This Page