Lecture by Dr. Komaroff April 24, 2010 Hosted by Mass. CFIDS/ME & FM Association

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Alan Gurwitt <agurcp@verizon.net> posted this to CO-CURE today

Mass. CFIDS/ME & FM Association to Host Lecture by Dr. Komaroff April 24, 2010

The Massachusetts CFIDS/ME & FM Association is pleased to announce the first of a new series of free educational forums.

ANTHONY KOMAROFF, M.D., Professor of Medicine at Harvard Medical School and
Editor-in Chief of Harvard Health Publications, will speak on
"The Latest Research on Chronic Fatigue Syndrome"
Dr. Komaroff will discuss the latest research on viruses, the immune system, the brain and energy metabolism in CFS

This talk will occur at 2 PM on April 24 at the Nangeroni Education Center of the Milton Hospital, Milton, MA, USA
(199 Reedsdale Rd.). For directions please visit:
www.miltonhospital.org/directions.htm

This lecture and discussion will be preceded at 1 PM by events honoring our 25th anniversary as well as one of our founders, Bonnie Gorman, and several senior volunteers

If you can attend please pre-register at: www.masscfids.org
 

*GG*

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I attended and did not get much from it, although I dragged along my sister which delayed me by nearly 1/2 hour. As paddygirl says, they will post it on their website.
 

paddygirl

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I attended and did not get much from it, although I dragged along my sister which delayed me by nearly 1/2 hour. As paddygirl says, they will post it on their website.
I just remembered an excellent article by Dr Komaroff which you can access through the front page of cfids.org. Its in the Pain Practitioner and just so clear. I sent off copies to a few friends who don't get time to research. I'm very tempted to send it to the Neurosurgeon (English - sorry no disrespect to our UK neighbours- but he was big on denial) who threw his head back and laughed out loud when I said my hand pain was not neck injury from a car accident but Fibro. And then said "oh whats that other thing? ME? Doesn't exist."

Saddest thing was, A young med student was sitting in on the consult.

I swallowed hard and said what about MS and all the other undiagnosed 'hysterical diseases'.
He said that MS has been acknowledged for 100 years. Not so, a nurse friend told me that older colleagues of hers had been told when training 30-40 years ago to 'ignore' the psychosomatic MS patients as they didn't need anything and there was nothing wrong with them. Have a look at Dr Yes's awful post, about his experience in a nursing home. It beggars belief, but we have all had a little taste of it at some point.
 

paddygirl

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Ooops

I just remembered an excellent article by Dr Komaroff which you can access through the front page of cfids.org. Its in the Pain Practitioner and just so clear. I sent off copies to a few friends who don't get time to research. I'm very tempted to send it to the Neurosurgeon (English - sorry no disrespect to our UK neighbours- but he was big on denial) who threw his head back and laughed out loud when I said my hand pain was not neck injury from a car accident but Fibro. And then said "oh whats that other thing? ME? Doesn't exist."

Saddest thing was, A young med student was sitting in on the consult.

I swallowed hard and said what about MS and all the other undiagnosed 'hysterical diseases'.
He said that MS has been acknowledged for 100 years. Not so, a nurse friend told me that older colleagues of hers had been told when training 30-40 years ago to 'ignore' the psychosomatic MS patients as they didn't need anything and there was nothing wrong with them. Have a look at Dr Yes's awful post, about his experience in a nursing home. It beggars belief, but we have all had a little taste of it at some point.
Oh dear, suffering from information overload, the article has some bits in from Komaroff, but its by McCleary and Vernon. x x
 
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Lecture and Q&A by Dr. Anthony Komaroff

Co-Cure Moderator to CO-CURE today

Submitted by Alan Gurwitt <agurcp@verizon.net>:


The Massachusetts CFS/ME and FM Association has just posted the lecture and Q&A by Dr. Anthony Komaroff, Professor of Medicine and Editor-in-chief of Harvard Health Publications. This lecture, posted on our website, was given on April 24th at the Milton Hospital. It can be seen at: www.masscfids.org http://www.masscfids.org

The lecture is 55 minutes long; it can be viewed in segments. The Q&A is 22 minutes long.
Alan Gurwitt
 
K

_Kim_

Guest
I said, "oh boy" when Komaroff started quoting numbers from a 2004 CDC Study, but he actually used the numbers to make a memorable point:
As a result, this illness is damaging the society, the greater society, beyond just the people and their families who are affected. A survey conducted by the CDC of patients with this illness, a large number of patients, found that there was a 37% decline in productivity in the ability to function around the household. A larger reduction in ability to function in the labor force. And estimated that the total cost to the United States each year from the productivity losses caused by this illness - not included in these costs are the actual medical costs of caring for the illness - just the loss of productivity of people who cant work, or cant work full time anymore - was 9.1 billion dollars a year, which, at the time that they did this study was greater than the bottom line of the biggest company in the world, which is Walmart.

Komaroff CDC stud&.JPG
Can someone tell Dr. K that these are not the easiest slides for PWC to look at!
:eek: The glare :eek:

 

Kati

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Komaroff seems to be "in bed" with the CDC, he defends them, says they have published the most papers, yadda yadda. Unfortunately, there is still the sexual abuse correlation study on the website and they are still planning to do follow up studies with the Wichita cohort, the one that cost 10 000$ for each patient interviewed. Maybe Dr Komaroff has some conflict of interest disclosure to do?
 

gracenote

All shall be well . . .
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I just watched Komaroff's presentation. I think it is excellent. He spells out the medical evidence, he takes the Science article seriously, and he is optimistic that things are moving in the right direction.

He doesn't think the Science study was a perfect study, but then said that he himself has never done a perfect study.

(I had a hard time taking these notes, so if any one catches an error, please let me know.)

I will give you my judgment. As I read the three papers that 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 their ability to find what they were looking for.
There are ways of looking at whether it's [XMRV] a cause. The most obvious of which would be to use medication that at least in the test tube kills the virus. If that kind of medication led to lower levels of the virus in the body and to people feeling a lot better, that would be pretty good evidence that it was a cause, but we're not there yet. We don't know if this virus is associated, we don't know yet if it's a causal agent.
Wish I could transcribe the whole thing. I really didn't see him giving the CDC much credit. He definitely doesn't give any support to any psychological explanations.
 

gracenote

All shall be well . . .
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Okay, I just watched the Q and A. Question 19 is about the CDC. I thought he gave a fair answer. It makes me want to take another look at their (other) studies I think he said there were 50 in the last 5 years? He does say that the CDC will not recommend treatment based on only one study and they need to wait for confirmation from other studies.

But . . . When I think of CDC studies, the only two studies that come to mind are the ones on genes and childhood trauma. They are the studies that got all the media coverage. There has been no attempt by the CDC to change that perception as far as I can tell. And the CDC is so tainted even with Reeves gone that . . . Sigh . . . I would have loved to have heard a little distaste for them.

However, I think the Q and A is very worth watching.

I loved how professional and organized this whole presentation was. You could watch Dr. Komaroff speak AND see the slides at the same time along with a list of each slide clearly visible.

Sorry Kim that the color of the slides bothered you. Love your new avatar.
 
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I loved this one. He is very conservative in his claims and answers.

I wish he had emphasized the difference in a retrovirus possibly affecting the immune system so other viruses could become numerous. He said "working together" or "activate other viruses" but he didn't emphasize enough the history of retroviruses making the person more susceptible to other viruses.

I do think his approach is slightly different that he is putting XMRV on equal footing with other viruses and bacteria as possible causes... along with possibly genes, etc.

I also understand what he is saying about CDC not promoting test or treatment until even their studies are verified independently. But, I don't buy it. I think if CDC believed wholeheartedly in their findings in these studies Komaroff referred to, they would find a way for an independent lab to run the same test. I do agree with him though, CDC has not taken a firm stand that CFS is psychological at this time, but seems they are exploring psychological and physiological. They see the studies as very confusing, and I think their own studies seem to show they are confused about whether their own diagnostic criteria is correct, since they decided to include the emotional questions. And they see the mind and body as connected, so from their view, the physiological could be caused by psychological, just as depression causes "fatigue" and some other problems. But their recent studies have started to show difference with CFSers compared to depression folks. The CDC Web site states it is not the same illness. It seems there are some good ideas at CDC, just funding is not flowing freely to take these studies and have them produce something verified so doctors can use it.

While I don't think CDC is as bad as many here believe, I still think they are a cog in the wheel of CFS progress.

Back to Komaroff, I have sent the link to his speech to my mom. I also have called the nurse for my doctor to see if I can send it to my doctor. My doctor is not very knowledgeable about CFS, but is open and mentioned to me she had someone else she thought has it. I think she would find this summary of research very interesting.

Tina