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Dr. Komaroff say's CFIDS/ME is neurological.

Discussion in 'General ME/CFS News' started by V99, Jun 5, 2010.

  1. V99

    V99 *****

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    This was posted on the ESME facebook page.
    http://www.facebook.com/pages/ESME-European-Society-for-ME/326113349124?created

    Original article here http://www.masscfids.org/news-a-events/2/221

    Video is here http://www.masscfids.org/videofiles/Komaroff/Komaroff.html

    Video of Q&A here
    http://www.masscfids.org/videofiles/Questions/Questions.html
     
  2. SeaShel

    SeaShel Senior Member

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    Too many years ago now, I remember posting on whichever support board I was on at the time something to the effect of 'oh boy, aren't all those God complex neurologists gonna have a fit when all of us PWC's start filling their waiting rooms'. (whew, run on sentence, sorry).

    I think that's when the info came out that we have the extra proteins in the cerebrospinal fluid.

    And here we are, still hoping to fill waiting rooms *someplace*. I'm just waiting for the news that WPI is taking appointments, what a great day that will be.

    Shelley
     
  3. V99

    V99 *****

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    SeaShel

    I know what you mean.
     
  4. camas

    camas Senior Member

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    Thank you for the link to the video. I've been waiting for him to weigh in on XMRV and it appears that he does. Off it watch it now!
     
  5. Thank you for this information V99, you find some great information for us!
     
  6. V99

    V99 *****

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    I cheat by checking other great websites, with better info finders than me.
     
  7. Sing

    Sing Senior Member

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    Thank you, V99. That is a very clear, helpful presentation pitched at just the right level of complexity/simplicity for me.

    Sometimes when we get talking on these threads, the scientific members run away with the ball and I can't follow them. So I have been giving up, in many cases, and just waiting for a thread or article which will tell me something new, but say it clearly--giving me the jist without a host of complicated little details and sidetracks. We can't all cope with that.

    Sing
     
  8. V99

    V99 *****

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    Sing, he is very clear isn't he.

    Here is a quote from him on XMRV.
    Not sure where he is point to.
     
  9. kit

    kit

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    V99
    Thanks for transcribing that quote. It's very encouraging to hear him speak on this, and give his opinion on the three non-replication studies.
     
  10. Stone

    Stone Senior Member

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    Fantastic videos! Thanks so much for that. The did a very good job on this presentation. I love how Dr. K gives a good overview from the very basics to the current state of the science in a way that laypersons as well as healthcare providers can easily take in, since his presentation was so well organized and coherent. Many thanks again.
     
  11. shiso

    shiso Senior Member

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    I'm glad Dr. Komaroff is still involved in the field. The mere fact that he is employed by Harvard gives credibility vis a vis the rest of the world as to the biological basis of the disease. It's a shame there haven't been more like him in the past 30 years.
     
  12. V99

    V99 *****

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    The thing I found interesting is that his talk reminded me of a lot of the Invest in ME conference. They are all talking about the same area's of interest, persistent viral infection, enterovirus's, gene expression, XMRV, etc.
     
  13. Sing

    Sing Senior Member

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    One of Dr. Komaroff's points was that ME/CFS doesn't have a steady downward course. He said that what he had seen was that patients were typically worse off in the first year than in subsequent years. He said that some even had periods of remission but that these were almost always followed by a relapse. So he implied that ME/CFS appears to be a sustained condition which follows either an even or a slowly failing course.....He used hand gestures to try to outline this.

    I wanted to add onto his findings with my experience. My worst period was the first 3 years before any treatment and before I had worked out what I needed to for self care (diet, rest, pacing, etc.) But then, with medications for some of my symptoms and increasing self care, I improved--my quality of life improved for a while. However, HOWEVER, aging and other physical issues not only took their usual tolls, but they also have combined with my ME/CFS to impact my system considerably more and sometimes differently than would be expected in a healthy person. For example, the aging brain or the aging digestive system or the aging energy picture will not be at all the same for someone with ME/CFS. So I would see that steady or gradually descending line of functioning going definitely downhill at the time when aging or any other forms of debility or challenge comes into the picture.

    Sing
     
  14. LaurelB

    LaurelB Senior Member

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    I thought this was an excellent presentation! He summarized they biophysical studies and findings and CFS so clearly and directly. I wish all med students would be required to watch this. ;-)
    The only thing I saw that was missing was the Peckerman study. That study gets glossed over a lot, it seems.

    Regarding his comment that he's never seen a patient's illness progressively worsen over the years... I guess that makes me an extreme minority. I was bedbound for a few weeks when I first came down with mono, then was (with difficulty) eventually able to return to work full time, even though I was still sick. I pushed to the extreme working for 3 years until I finally collapsed and ended up homebound. Months later, still pushing, I ended up bedridden and unable to speak above a whisper. I've been going downhill since. So, this illness can progress and worsen over time, particiluarly if caution is not taken in the early years. I went from a mild/moderate case to an extreme/serious case. So, I'd have to disagree with him on that.

    Of course, he was talking about his patients only, and I'm not his patient. I wish I were (I first got sick in Boston), but the doctors I had told me to push past it. And so here I am.
     
  15. hvs

    hvs Senior Member

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    This could very well be, but then I suspect it's a lynchpin which, if eliminated (suppressed), will cause the disorder to unravel. You then go attack secondary infections one-by-one and, god willing, you get better and stay better.
     
  16. Cort

    Cort Phoenix Rising Founder

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    My experience with CFS was that it was much worse in the beginning but I agree that things are beginning to slip out. Dr. Maes believes that long-duration CFS patients look more like IBS patients and long-duration IBS patients look more like CFS patients; ie the gut problems increase over time in CFS. Certainly I didn't have any chemical sensitivities for a long time with CFS. The patient data repository we're getting together should be illuminate what happens to patients as they age with this disorder.
     
  17. Cort

    Cort Phoenix Rising Founder

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    What a good question that is about the Peckerman study! After we got moved to the ORWH funding for cardio stuff completely stopped. Peckerman announced at a conference even more dramatic study results - but the study was never published. What a shame the NIH refused to fund that work anymore particularly in light of Dr. Lerner's findings with EBV.

    I think there's probably a pretty hefty subset of people who relapsed very badly over time or got really ill in the beginning and never got better. I was lucky that I always had enough energy to remain 'active' and never experienced that complete draining of energy - although I glimpsed it from time to time. For me physical activity simply meant pain and more pain not debilitation - I was lucky in that way.
     
  18. I was most disappointed in Dr Komaroff's comments that CFS never gets worse.

    We all know as patients:

    CFS gets better
    CFS stays the same
    CFS gets worse
    (All in differing percentage rates)

    For Komaroff to not say this means 3 things:

    1) His cohort of patients aren't ever severely affected - probable as severe patients rarely get out of the home.
    2) He is unaware of the history of prognosis in CFS - most unlikely as he is very well informed.
    3) He is pushing a pro CDC agenda - most likely, because his statement is utterly false that no one gets worse.

    Anyone visiting the CFIDS Association of America website is free to read the following:

    .

    Source: http://www.cfids.org/resources/newly-diagnosed-faq.asp
     
  19. Cort

    Cort Phoenix Rising Founder

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    Ouch! I don't know if he said that nobody gets worse but I 'm not worried about him pushing a CDC agenda. Did you see the video? He was all about documenting brain problems, immune problems, pathogen problems legitimizing CFS as a physiological disorder...he even said he thinks mitochondrial problems are important - that's a big step for a pretty conservative CFS researcher. I don't see the CDC calling for more pathogen studies or saying that active HHV-6 infection is a problem or even hinting at the possibility of mitochondrial problems. I would not put him in their category at all; they have quite different viewpoints. He may be conservative in some areas and he may make a mistake at times - but that presentation was what I wanted to see.

    ( I hope this thread doesn't come to be about his one mistake (I would note that I'm still not sure exactly what he said).

    Personally I was struck by his enthusiasm for all the interesting efforts going on right now in CFS and his belief that things will improve quickly for us over the next couple of years. I hope he's right. When you think how little funding CFS gets the amount of innovative and interesting research that's going on is pretty impressive.
     
  20. alex3619

    alex3619 Senior Member

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    Hi DysautonomiaXMRV

    I agree with you that many patients get worse over time. I am one of them. First I had subclincal CFS, then mild CFS, then moderate CFS, then severe CFS that matches tha Canadian definition of ME. Now I have improved to moderate/severe, but there are signs that things are getting worse again. By the way, how I rate severe would make it impossible for a very severe/extreme patient (like I was at my worst) to use these forums.

    However, Dr. Komaroff has been involved for a very long time. It may be that his practice is a specific subset of patients such as the Incline village epicemic patients. It is also possible that he is selective in who he treats for some reason, and is not seeing what you and I see in his patients. Without more information, we are only guessing.

    Bye
    Alex


     

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