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

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

During the question-and-answer period of his recent lecture given to the Massachusetts CFIDS/ME & FM Association, Dr. Anthony Komaroff was asked whether he would consider CFS to be a neurological illness. This was his answer:

"I would certainly say that there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness.

"That makes it neurological. That's why I think it makes sense, as Dr. Gurwitz said, to call it Myalgic Ecephalomyelitis or Encephalopathy, because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case."

Dr. Komaroff is Simcox/Clifford/Higby Professor of Medicine at Harvard Medical School, Senior Physician at Brigham and Women's Hospital in Boston, and Editor-in-Chief of Harvard Health Publications. He was a co-author on both the Holmes (1988) and the Fukuda (1994) definitions of CFS.

For more from a fascinating lecture and question-answer session, go to the Massachusetts CFIDS/ME & FM Association website:

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

Mary Schweitzer
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
 

SeaShel

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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
 

camas

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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!
 
D

DysautonomiaXMRV

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Thank you for this information V99, you find some great information for us!
 

Sing

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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
 
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Sing, he is very clear isn't he.

Here is a quote from him on XMRV.
But the question is, could other groups around the world repeat these results. Well other groups actually haven't even tried, at least published yet, having tried to look at three of these four things that the first group did. They have only tried to repeat this part.
Not sure where he is point to.
and three groups have found that there are unable to confirm these results. So there is a sort of provisional judgement right now amongst many infectious disease experts that maybe there was just something wrong with this study and maybe it wasn't right. I will give you my judgement, which is that as I read the three papers that have failed to confirm this result. Although they were done by very skilled people and were solid work in many respects, there is one problem with all of them that could have undermined there ability to find what they were looking for. So it is my judgement that the dust has not yet settled on this controversy, and I would say we still don't know if this retrovirus is associated with CFS, but I don't believe we can now dismiss that at all.
 
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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.
 

Stone

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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.
 

shiso

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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.
 
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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.
 

Sing

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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
 

LaurelB

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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.
 

hvs

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He sees XMRV's role as a co-facter - perhaps a pathogen that works in concert with other pathogens to cause the symptoms of the disorder.
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.
 

Cort

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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
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.
 

Cort

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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.
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.
 
D

DysautonomiaXMRV

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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:

How long will it take to recover?

A. It is not possible to predict recovery. About one-third of persons with CFS recover almost fully, but no one knows why. Some people recover in small to moderate degrees, while others recover minimally, if at all. Still others have progressively worse symptoms over time.
.

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

Cort

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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.
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.
 

alex3619

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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


I was most disappointed in Dr Komaroff's comments that CFS never gets worse.