ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!
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Dreambirdie
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WPI/OZ NEWS UPDATE
Hello Out There You Goofy Crew!
I spoke with Frankie (the WPI media coordinator) on the phone just a while ago. She said she had put in a couple calls to the producers at the Dr. Oz show, and hadn't heard back anything yet. She said she would keep trying, and even if they (the WPI folks) can't effect any changes for the coming Friday Oz show, they would attempt to set up something up for a future update on the (XMRV--CFS) issue. She said she was really glad to have gotten "a head's up" about this. I asked her to email me, to let me know what (if anything) happens next, and she said she would.
That's all for now, from me--Chronic Chronkite, over and out, and back to napland. (and not LAPLAND!)
Hello Out There You Goofy Crew!
I spoke with Frankie (the WPI media coordinator) on the phone just a while ago. She said she had put in a couple calls to the producers at the Dr. Oz show, and hadn't heard back anything yet. She said she would keep trying, and even if they (the WPI folks) can't effect any changes for the coming Friday Oz show, they would attempt to set up something up for a future update on the (XMRV--CFS) issue. She said she was really glad to have gotten "a head's up" about this. I asked her to email me, to let me know what (if anything) happens next, and she said she would.
That's all for now, from me--Chronic Chronkite, over and out, and back to napland. (and not LAPLAND!)
That's great the WPI is involved!
I was thinking though - at least if they are going to air this segment with Dr. Teitelbaum it was taped before the XMRV news came out so at least he won't be refuting it as he does on his website. I believe that would be more damaging than just not mentioning it.
I was thinking though - at least if they are going to air this segment with Dr. Teitelbaum it was taped before the XMRV news came out so at least he won't be refuting it as he does on his website. I believe that would be more damaging than just not mentioning it.
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HERE'S MY COMPLAINT TO DR. TEITELBAUM ABOUT HIS VIEW RE: XMRV
Recent news of the WPI research team's discovery of the XMRV virus in two thirds of CFS patients' blood samples tested, and antibodies for the XMRV being found in 95% of these samples is one of the most exciting things that has happened in the CFS community.
I am VERY DISAPPOINTED in Dr. T's rather dismissive and minimizing tone regarding this. As if this discovery just chalks up another in the "virus of the month club..." as if all the "attention" (CHECK OUT JUST A SAMPLING OF ARTICLES below) this remarkable discovery is getting is just part of the "politics" of the media or the drug companies looking for their "CaChing"...
http://www.sciencemag.org/cgi/content/a ... /1179052v1
http://www.scientificamerican.com/artic ... s#comments
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
http://www.nature.com/news/2009/091008/ ... 9.983.html
http://www.sciencenews.org/view/generic ... e_syndrome
http://www.nytimes.com/2009/10/09/healt ... .html?_r=2
http://www.npr.org/templates/story/stor ... =113613955
http://online.wsj.com/article/SB125501227713473525.html
http://www.latimes.com/news/nationworld ... 8993.story
The XMRV virus, according to Dr Nancy Klimas, a definitive authority on CFS, is: "EXTREMELY RARE IN HEALTHY PEOPLE." This makes its discovery in two thirds of CFS patients a VERY BIG DEAL INDEED!
You can watch Dr. Klimas speak about the XMRV discovery here:
http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv
Dr T--Boo on you! I expected more and better from you than this.
Recent news of the WPI research team's discovery of the XMRV virus in two thirds of CFS patients' blood samples tested, and antibodies for the XMRV being found in 95% of these samples is one of the most exciting things that has happened in the CFS community.
I am VERY DISAPPOINTED in Dr. T's rather dismissive and minimizing tone regarding this. As if this discovery just chalks up another in the "virus of the month club..." as if all the "attention" (CHECK OUT JUST A SAMPLING OF ARTICLES below) this remarkable discovery is getting is just part of the "politics" of the media or the drug companies looking for their "CaChing"...
http://www.sciencemag.org/cgi/content/a ... /1179052v1
http://www.scientificamerican.com/artic ... s#comments
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
http://www.nature.com/news/2009/091008/ ... 9.983.html
http://www.sciencenews.org/view/generic ... e_syndrome
http://www.nytimes.com/2009/10/09/healt ... .html?_r=2
http://www.npr.org/templates/story/stor ... =113613955
http://online.wsj.com/article/SB125501227713473525.html
http://www.latimes.com/news/nationworld ... 8993.story
The XMRV virus, according to Dr Nancy Klimas, a definitive authority on CFS, is: "EXTREMELY RARE IN HEALTHY PEOPLE." This makes its discovery in two thirds of CFS patients a VERY BIG DEAL INDEED!
You can watch Dr. Klimas speak about the XMRV discovery here:
http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv
Dr T--Boo on you! I expected more and better from you than this.
Dreambirdie
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HERE'S THE RESPONSE FROM CHERYL ALBERTO--TEITELBAUM'S PROTOCOL COUNSELOR
I can understand your disappointment, but will fill you in on where his response is coming from.
Every few years, a new batch of articles is featured that claims that "THE infection" that causes CFS/FM has been found. EBV, HHV6, and Mycomplasma are among the dozen or so that have popped into the media since I have worked with Dr. T. Sometimes treatment is linked with the articles, sometimes not. The list of references for each new "cause" is a mile long, which gives the perception of irrefutable. If you notice, each of the articles that are referenced in the original post (not bashing, just pointing out a subtlety) refers to the one piece of research. We get a flurry of calls and emails from people each time the new "cause" is revealed, and tell people the same thing: Any given person walking down the street can be infected with any one of these viruses or bacterial infections. What we have found is that each person is affected differently by infection. The majority can live with EBV in their system, and never have a viral symptom. They live perfectly normal, healthy lives. For others who have symptoms, or are debilitated with chronic fatigue, treating the EBV with anti virals can lead to dramatic improvement. In this subset of patients, one may benefit from heparin and famvir, while another has no reponse to this combination. However, they may repond to kutapressin injections. Some will have incredibly high EBV titers, and heavy viral symptoms, but not respond to any anti viral therapy. With the retrovirus, (and I admit that I have not read the full research), how many of the two thirds of those who test positive will actually respond to treatment?
As for the fact that 2/3 of the CFS/FM patients tested were positive for the virus, it is likely that a comparable percentage are positive for EBV as well. I honestly don't think that I have seen more than handful of patients in our office, or whom I have counselled, that did not have EBV antibodies.
A few years ago, Dr. Montoya did a study that had promising results. The named virus was HHV6, and a large percentage of participants in his study responded to Valcyte. This medication cost $7,000-$10,000 out of pocket for those without insurance, but since the research was promising (as is typical-think about it, if the research wasn't promising it wouldn't be published....), people were willing to take out loans or charge or spend their savings to pay for this treatment. Once again, while some patients responded dramatically to treatment, others had no reponse. Some that tried the Valcyte and got debilitated (either by die off or by the Rx itself), did a total 180 turn when he was swithced to heparin and famvir. Interestingly, a second study with Valcyte had much less promising results. The second study seemed to support our clinical findings.
Since viruses of this type can only be suppressed with treatment, symptoms often recurred when medications were stopped. For one woman in particular, she had to make the choice of whether she could afford to pay $7,000 each 6-9 months to do another round of Valcyte in order to maintain her level of wellness. This decision is aside from the considerations concerning the toxicity of the medication.
My understanding of the treatment for the retrovirus is thousands of dollars. Luckily for everyone, this likely means that it will be pushed through the FDA approval process quickly so that the research can be further validated among the general population.
This has been the pattern again and again. Valtrex, Valcyte, kutapressin. All cost hundreds to thousands of dollars a month out of pocket. Insurance often will dismiss expensive medications for "experimental" treatments. Trust me when I tell you that anything that has only recently been published in a study is considered experimental. It is absolutely heartbreaking to watch people realize that they cannot afford a treatment that may be key for their improvement. Most important is the fact that NONE OF THE TREATMENTS WERE THE "CURE" FOR A PATIENT'S CFS/FM. Even when patients had improvement with treatment for infection, they still needed to be treated for the after effects of the infection, such as disordered sleep, hormone imbalance, nutritional deficiencies, etc.
Here is another, very important thing to consider: It is not neccessarily so that everyone with CFS/FM has an infection that needs to be treated. Hmmmmm. A vast majority of people with CFS/FM get better with treatment of sleep, balancing hormones, and so on.
All of the above being said, alot of good definitely comes from the new research that surfaces. As with any component of CFS/FM treatment it simply varies as to whether this new treatment will be helpful or not for the individual. At our office, we have seen so many treatments fly into the CFS/FM circle and then disappear, that we may be a little skeptical. There is no malice intended. It simply is that we hope to avoid the broken hearts of those who pin all of their hopes on a new treatment, only to find it minimally or totally ineffective. Dr. T always says that there will be a "cure" for CFS/FM someday. I can tell you, without a doubt, that he would be thrilled if this latest research and the involved treatment irradicated CFS/FM. Let's just say that in this case he is skeptically optimistic.
_________________
Cheryl Alberto
CFS/FM Protocol Counselor
I can understand your disappointment, but will fill you in on where his response is coming from.
Every few years, a new batch of articles is featured that claims that "THE infection" that causes CFS/FM has been found. EBV, HHV6, and Mycomplasma are among the dozen or so that have popped into the media since I have worked with Dr. T. Sometimes treatment is linked with the articles, sometimes not. The list of references for each new "cause" is a mile long, which gives the perception of irrefutable. If you notice, each of the articles that are referenced in the original post (not bashing, just pointing out a subtlety) refers to the one piece of research. We get a flurry of calls and emails from people each time the new "cause" is revealed, and tell people the same thing: Any given person walking down the street can be infected with any one of these viruses or bacterial infections. What we have found is that each person is affected differently by infection. The majority can live with EBV in their system, and never have a viral symptom. They live perfectly normal, healthy lives. For others who have symptoms, or are debilitated with chronic fatigue, treating the EBV with anti virals can lead to dramatic improvement. In this subset of patients, one may benefit from heparin and famvir, while another has no reponse to this combination. However, they may repond to kutapressin injections. Some will have incredibly high EBV titers, and heavy viral symptoms, but not respond to any anti viral therapy. With the retrovirus, (and I admit that I have not read the full research), how many of the two thirds of those who test positive will actually respond to treatment?
As for the fact that 2/3 of the CFS/FM patients tested were positive for the virus, it is likely that a comparable percentage are positive for EBV as well. I honestly don't think that I have seen more than handful of patients in our office, or whom I have counselled, that did not have EBV antibodies.
A few years ago, Dr. Montoya did a study that had promising results. The named virus was HHV6, and a large percentage of participants in his study responded to Valcyte. This medication cost $7,000-$10,000 out of pocket for those without insurance, but since the research was promising (as is typical-think about it, if the research wasn't promising it wouldn't be published....), people were willing to take out loans or charge or spend their savings to pay for this treatment. Once again, while some patients responded dramatically to treatment, others had no reponse. Some that tried the Valcyte and got debilitated (either by die off or by the Rx itself), did a total 180 turn when he was swithced to heparin and famvir. Interestingly, a second study with Valcyte had much less promising results. The second study seemed to support our clinical findings.
Since viruses of this type can only be suppressed with treatment, symptoms often recurred when medications were stopped. For one woman in particular, she had to make the choice of whether she could afford to pay $7,000 each 6-9 months to do another round of Valcyte in order to maintain her level of wellness. This decision is aside from the considerations concerning the toxicity of the medication.
My understanding of the treatment for the retrovirus is thousands of dollars. Luckily for everyone, this likely means that it will be pushed through the FDA approval process quickly so that the research can be further validated among the general population.
This has been the pattern again and again. Valtrex, Valcyte, kutapressin. All cost hundreds to thousands of dollars a month out of pocket. Insurance often will dismiss expensive medications for "experimental" treatments. Trust me when I tell you that anything that has only recently been published in a study is considered experimental. It is absolutely heartbreaking to watch people realize that they cannot afford a treatment that may be key for their improvement. Most important is the fact that NONE OF THE TREATMENTS WERE THE "CURE" FOR A PATIENT'S CFS/FM. Even when patients had improvement with treatment for infection, they still needed to be treated for the after effects of the infection, such as disordered sleep, hormone imbalance, nutritional deficiencies, etc.
Here is another, very important thing to consider: It is not neccessarily so that everyone with CFS/FM has an infection that needs to be treated. Hmmmmm. A vast majority of people with CFS/FM get better with treatment of sleep, balancing hormones, and so on.
All of the above being said, alot of good definitely comes from the new research that surfaces. As with any component of CFS/FM treatment it simply varies as to whether this new treatment will be helpful or not for the individual. At our office, we have seen so many treatments fly into the CFS/FM circle and then disappear, that we may be a little skeptical. There is no malice intended. It simply is that we hope to avoid the broken hearts of those who pin all of their hopes on a new treatment, only to find it minimally or totally ineffective. Dr. T always says that there will be a "cure" for CFS/FM someday. I can tell you, without a doubt, that he would be thrilled if this latest research and the involved treatment irradicated CFS/FM. Let's just say that in this case he is skeptically optimistic.
_________________
Cheryl Alberto
CFS/FM Protocol Counselor
jenbooks
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This is a completely stupid and uninformed response. How fricken irritating.
1) EBV is universal it infects us all. So bringing up EBV is stupid and I never gave credence to the EBV yuppie flu thing anyway.
2) HHV is pretty much universal too
3) So is mycoplasma.
Here you've got something very different. You've got a retrovirus positively associated with aggressive prostate cancer when there is an r-nase defect similar to some in CFIDS patients. AND you've got a huge disparity in infection rates btw "carriers" (who may indeed be at much higher risk for cancer or other disroders once we do longitudinal studies or retrospective studies on banked blood) and outright CFIDS.
STUPID.
This finding is more comparable to HIV.
Please tell her she's an idiot but politely.
Thanks.
1) EBV is universal it infects us all. So bringing up EBV is stupid and I never gave credence to the EBV yuppie flu thing anyway.
2) HHV is pretty much universal too
3) So is mycoplasma.
Here you've got something very different. You've got a retrovirus positively associated with aggressive prostate cancer when there is an r-nase defect similar to some in CFIDS patients. AND you've got a huge disparity in infection rates btw "carriers" (who may indeed be at much higher risk for cancer or other disroders once we do longitudinal studies or retrospective studies on banked blood) and outright CFIDS.
STUPID.
This finding is more comparable to HIV.
Please tell her she's an idiot but politely.
Thanks.
jenbooks
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PS Dreambirdie send Hillary Johnson's piece to these idiots:
http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=print
And this is why it's not worth contacting them in the first place imo! Harumph.
http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=print
And this is why it's not worth contacting them in the first place imo! Harumph.
Dreambirdie
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Jen--
THis is EXACTLY WHY we want to make sure that the Dr OZ show knows that Teitelbaum is NOT the ultimate authority on CFS.
The Oz show with the CFS segment will air in 2 days, so speak up now or don't bother complaining about it, once it's too late.
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Hi Jen--
I cleaned up your response (took out the STUPIDS) and posted it for Cheryl:
Hi Cheryl--
Here is a response from someone on another forum, who knows much more than I do on this issue:
"This is a very uninformed response.
1) EBV is universal it infects us all.
2) HHV is pretty much universal too
3) So is mycoplasma.
Here you've got something very different. You've got a retrovirus positively associated with aggressive prostate cancer when there is an r-nase defect similar to some in CFIDS patients. AND you've got a huge disparity in infection rates btw "carriers" (who may indeed be at much higher risk for cancer or other disroders once we do longitudinal studies or retrospective studies on banked blood) and outright CFIDS.
This finding is more comparable to HIV."
A great op ed on it here: http://www.nytimes.com/2009/10/21/opinion/21johnson.html
Please educate yourself more on the topic. You are doing CFS sufferers a great disservice with such ignorant disinformation.
Thank you.
So here I go again. (in my predictable role as the rabble rouser.)
And now I'm going back to bed with my cold in tow.
I cleaned up your response (took out the STUPIDS) and posted it for Cheryl:
Hi Cheryl--
Here is a response from someone on another forum, who knows much more than I do on this issue:
"This is a very uninformed response.
1) EBV is universal it infects us all.
2) HHV is pretty much universal too
3) So is mycoplasma.
Here you've got something very different. You've got a retrovirus positively associated with aggressive prostate cancer when there is an r-nase defect similar to some in CFIDS patients. AND you've got a huge disparity in infection rates btw "carriers" (who may indeed be at much higher risk for cancer or other disroders once we do longitudinal studies or retrospective studies on banked blood) and outright CFIDS.
This finding is more comparable to HIV."
A great op ed on it here: http://www.nytimes.com/2009/10/21/opinion/21johnson.html
Please educate yourself more on the topic. You are doing CFS sufferers a great disservice with such ignorant disinformation.
Thank you.
So here I go again. (in my predictable role as the rabble rouser.)
And now I'm going back to bed with my cold in tow.
What Jen said!
Human Herpes Viruses (EBV, HHV...) are ubiquitous and will reactivate in anyone given the right circumstances - cold sores, shingles, genital herpes...
XMRV 3.7%
Three point seven percent!
It's frustrating.
Truth will out.
peace
jenbooks
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DB I will not complain about Teitelbaum. I don't watch Oz. I figure the media mostly has it right now. I don't think Teitelbaum's show on Oz will affect the scientific or national dialogue at all.
I'm inordinately pleased with the media coverage. The NY Times--with Klimas' quotes about she'd rather have HIV in 2009 than CFS, and outright damning the CDC for destroyign DeFreitas' work, career, and others' courage--right in print. Printing Hillary's essay. It's all great.
I seriously, myself don't think the media needs my aid now. They've got the story right, mostly. Even WPI doesn't really need us but they could use any donation we can make. That's the best thing we can do. We're in good hands with Mikovits--the best.
I guarantee you, these alt med practitioners will have no influence on the fate of this finding. The next studies will be KEY KEY KEY. I'm sure those are already underway.
I'm inordinately pleased with the media coverage. The NY Times--with Klimas' quotes about she'd rather have HIV in 2009 than CFS, and outright damning the CDC for destroyign DeFreitas' work, career, and others' courage--right in print. Printing Hillary's essay. It's all great.
I seriously, myself don't think the media needs my aid now. They've got the story right, mostly. Even WPI doesn't really need us but they could use any donation we can make. That's the best thing we can do. We're in good hands with Mikovits--the best.
I guarantee you, these alt med practitioners will have no influence on the fate of this finding. The next studies will be KEY KEY KEY. I'm sure those are already underway.
Very good points, Jen.
I think we speak as much for ourselves, individually, as we do for the cause. We have waited a very long time to be able to state, as we can now, that some people are talking through their hats and there is proof.
I agree with you that the research will continue apace and that the media coverage has been fantastic. It do object to those who spread ignorance and support all efforts to educate them and counter their message.
I'm less concerned about most of these people than I am about Oz. My concern about his upcoming show has little to do with any potential impact it may have on ongoing research. I am more concerned about the influence he has over the opinions of ordinary North Americans.
It is simply unfortunate that, so soon after people may have approached their family and friends with information which may help them finally understand that this is an ordinary illness following ordinary rules, a popular TV show is featuring outdated information. It will appear that the much admired Dr Oz is contributing to this ongoing dialogue by dismissing the research. It will not change anything except, temporarily, the awareness of the public. It's simply a shame to step back when we have just taken a huge collective step forward.
Way too many words, sorry! Used up all ability to express self over past little while.
Peace out,
koan
I think we speak as much for ourselves, individually, as we do for the cause. We have waited a very long time to be able to state, as we can now, that some people are talking through their hats and there is proof.
I agree with you that the research will continue apace and that the media coverage has been fantastic. It do object to those who spread ignorance and support all efforts to educate them and counter their message.
I'm less concerned about most of these people than I am about Oz. My concern about his upcoming show has little to do with any potential impact it may have on ongoing research. I am more concerned about the influence he has over the opinions of ordinary North Americans.
It is simply unfortunate that, so soon after people may have approached their family and friends with information which may help them finally understand that this is an ordinary illness following ordinary rules, a popular TV show is featuring outdated information. It will appear that the much admired Dr Oz is contributing to this ongoing dialogue by dismissing the research. It will not change anything except, temporarily, the awareness of the public. It's simply a shame to step back when we have just taken a huge collective step forward.
Way too many words, sorry! Used up all ability to express self over past little while.
Peace out,
koan
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Hmmm. You may be right Koan. I don't watch t.v. I keep considering giving it up entirely but...if the Yankees go to the World Series I'll watch, and I watched Obama's inaugaration. So I'm totally out of touch with the tv world. Any tv I get is mostly clips on the web put up by the stations a day later.
Dreambirdie
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Thank you Koan. I am too tired to translate things into words right now... or most of the time.
Yes, yes BED... I'm going I'm going.
I wish I didn't watch television!
I keep calling the cable company to let it go and they keep talking me into hanging on by lowering my rates. I have internet, cable and phone from one provider (15% discount for "bundling") and, each time it's renegotiated, keeping a lineup that includes Movie channels and documentaries, costs very little. They have something called a Customer Retention Department.
Since I spend almost all my time in my little apt. alone with my dog, and my connectivity, I can't seem to let it go. The telly has become a window on the world.
I think if I had a window with a view of something other than bricks, I'd find it easier to resist the deals the cable co. comes up with.
It's an addiction, though, no doubt about that. And, of course, I could let it go if I really wanted to.
Your friend,
the addict
PS Birdie: bed!
jenbooks
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Addicted...
Hi Koan. I don't like the noise or commercials and mostly am bored by it. I have liked it less and less over the years. I am however addicted to the internet. Sitting at my desk researching or writing I get restless and I have about seven tabs open at once and click on them, refresh, see what's happening on various sites...google news...message boards. I am definitely addicted to that.
I am also addicted to my iPhone. I am so attached to my beautiful iPhone and how it seems an extension of my mind that if I even misplace it on the wrong side of my bed for a moment I freak out. When I wake in the wee hours which I always do, and go warm up my buckwheat heating pad, I take my iPhone to check emails and groups. It is really hard to resist.
I have no reception without cable so I have the cheapest possible--only network channels. That costs me $25 a month which really makes me mad. That's $300 a year to watch about 3 shows a year. I've been meaning to give up the box which is unecessary and costs $7/month. I think I wouldn't be unhappy ditching the whole tv.
I also like to read.
Hi Koan. I don't like the noise or commercials and mostly am bored by it. I have liked it less and less over the years. I am however addicted to the internet. Sitting at my desk researching or writing I get restless and I have about seven tabs open at once and click on them, refresh, see what's happening on various sites...google news...message boards. I am definitely addicted to that.
I am also addicted to my iPhone. I am so attached to my beautiful iPhone and how it seems an extension of my mind that if I even misplace it on the wrong side of my bed for a moment I freak out. When I wake in the wee hours which I always do, and go warm up my buckwheat heating pad, I take my iPhone to check emails and groups. It is really hard to resist.
I have no reception without cable so I have the cheapest possible--only network channels. That costs me $25 a month which really makes me mad. That's $300 a year to watch about 3 shows a year. I've been meaning to give up the box which is unecessary and costs $7/month. I think I wouldn't be unhappy ditching the whole tv.
I also like to read.