I have moved these two posts from another section.
LLL6521 posted this:
In Ipscell.com or Mr. Paul Knoepfler's blog, he wrote an article titled, ‘ Stem Cell Pioneers ‘ Website Launches Mean-Spirited, Unfounded Attacks on Scientists.'
The article says without reiterating the entire article, Why are the Stem Cell Pioneers folks being so mean-spirited and insulting?
I tried posting a comment to his blog article, but somehow it showed up and then poof gone. However, he implies that he will monitor stem cell pioneers, I don’t know, but I’m looking into it for a second planned blog post on Stem Cell Pioneers, said Knoepfler. Here is part of the comment that was removed. It mentions the first message on this thread, and then continues on with this:
...Dr. Knoepfler, do you currently receive or have received any grants from National Institute of Health and National Science Foundation? And are you attempting to patent any future discoveries? Barbara is not the only one opposing your position on autologous stem cells being a drug. There are many more people, and they are growing in numbers. Believe me, whenever we see another blog or mention that autologous stem cells are unproven and dangerous. We will simply expose your conflict of interests of having these medical procedures progress like any other medical procedure that may hinder your future patents and royalties.
______________________________________________________________
My response:
Barbara
Thanks LLL6521. Mr. Knoepfler and others might want to read this article that I just posted in another section http://www.stemcellpioneers.com/showthread.php?t=6119
The posting from his blog is below my comments.
I don't believe any of the comments are getting more "extreme" as Mr. Knoepfler suggests. I guess he believes that patients should have been high fiving each other and throwing some lavish celebration parties in light of the recent ruling in the Regenerative Sciences case. I guess he also thinks we should like the type of press the ruling got in many cases where the conclusion was that the FDA was victorious and that this was the end of the lawsuit. The truth was not told in most articles I read. This case is far from over Mr. Knoepfler.
There have been attacks on me personally for my support of a patient's rights to use their own stem cells. On LinkedIn, one PhD said I was a zero and that I knew nothing because I did not have a degree in science. Another blog had a link to a disgruntled patient who has made accusations against Regenerative Medicine Institute and Angeles Hospital. On this PhD's blog, this single incident was treated as though it was a major event proving the PhD's theory that stem cell therapy is dangerous.
As for rolling out an article that is years old and citing that as Mr. Knoepfler has done, that proves my point that some scientists are out of touch, unbending and do not like change. The first treatment I had was a disaster. It's why this forum was started. Why go back to the dark ages though when so many improvements have been made and so many solutions other than denying patients their human rights should be open for discussion? I was also misquoted in the Washington Post article and immediately made a comment to that effect. Apparently, Knoepfler chose to ignore that.
This forum is not kind to every operation out there. We acknowledge that there are doctors and clinics that only want our money. We are aware that safety is important. We were one of the only voices railing against X-Cell Center in Germany on a consistent basis. We exposed Casey Nabavi. We have warned about other operations and will continue to do so. That being said, research scientists are not exempt from criticism on this forum especially when the media refuses to vet those quoted as experts or industry spokespeople. The public has a right to know what conflicts of interest these spokespeople have if any. It's simply not good enough for me and hopefully not good enough for others to simply quote that John Doe, PhD. from such and such university states this and therefore it is a true scientific, unbiased fact.
Knoepfler says we are the biggest fans of urging patients to go get stem cell treatment. He says, "What the heck. What changed?" Apparently, Mr. Knoepfler hasn't really read many of the posts on this forum. Nothing has changed Mr. Knoepfler. We still respect science, we simply do not respect scientists who seem to be ecstatic over the court ruling that gave us all so much hope. That was terribly disrespectful of patients Mr. Knoepfler. We also do not respect PhD's who of late seem to somehow believe they are medical doctors. I see a lot of that online and it's something that needs to be challenged. I also don't see a lot of PhD's who have blogs such as yours explaining what your work could mean in the future to you monetarily. I am happy to explain to you what stem cell treatment means to me. It means that I am feeling better than I have in years. It means that I have had a verified increase in lung function. It means I am not declining. It means my quality of life has done that 180 turn you talked about.
You could also do us a favor by dropping the "protection" aspect of your arguments. What on earth are you protecting someone from who has a terminal disease and no quality of life? Prove to us that you aren't protecting your own patents, jobs and funding. And why don't you get it that many patients don't have years? You seem to believe that we should be content to die off willingly for the sake of research that quite honestly does not seem to favor the use of our own stem cells as a practice of medicine with our own physicians.
I honestly am surprised that you didn't contact me directly, but perhaps your motive was more about defending yourself than really wanting to know where I and others on this forum are coming from. If you would like to host Ask the Doctor (we can call it Ask the PhD) and field questions from our membership, then I invite you to do that. Please contact me through this forum.
__________________________________________________ ____________
Here's the info from Paul Knoefler's blog that LLL6521 is talking about.
‘ Stem Cell Pioneers ‘ Website Launches Mean-Spirited, Unfounded Attacks on Scientists https://www.ipscell.com/2012/08/stem-cell-pioneers-website-launches-mean-spirited-unfounded-attacks-on-scientists/
Posted on August 15, 2012
There’s a website out there called Stem Cell Pioneers.
It is very much an advocate for adult stem cell clinics.
More and more these days, the folks running Stem Cell Pioneers have been posting comments on stem cell articles on the Internet. These comments have also been getting more and more extreme of late as well. Angry even. They attack and insult scientists and anyone who questions for-profit stem cell clinics or technology.
If you look at the discussions on the Stem Cell Pioneers website itself as well there are also untrue comments that frequently are insulting and mean-spirited to specific scientists including me.
I have a pretty thick skin after all these years in academia and a couple years as a blogger so I can handle criticism. But I’m puzzled.
Why are they so very angry and mean-spirited?
I don’t get it. Why would a purportedly pro-patient website attack stem cell scientists?
One example of their anger is on a Star Tribune article about stem cell treatments where I was quoted by the reporter, who interviewed me as a stem cell scientist/expert.
The Stem Cell Pioneers founder commented thusly on that article (emphasis mine):
Why does the media not give background information on “experts” that are quoted and the ISSCR? There are conflicts of interest that need to be reported. This is all about the money - BIG MONEY. Patients getting treated with their own stem cells is not profitable to anyone but doctors who administer the treatment. As a patient with a terminal disease & co-founder of the Stem Cell Pioneers forum, I believe I can speak for myself and most other forum members, that we believe that the FDA’s regulation of our own stem cells as drugs is nothing short of a death sentence and a violation of our civil rights. We are also tired of the research community, Big Pharma and the FDA protecting their own interests and the media for failing to really dig deep and understand the conflicts that abound. Space does not permit me to print a list of patents held by current and past presidents of ISSCR, but the list is a long one. This fight is far from over. Patients are tired of being used. Many, like myself, have tried all means of conventional medicine. There are no clinical trials and yet we are told to wait decades for our own “safety”. WE DON’T HAVE THE LUXURY OF TIME. There are safeguards for patients just in the fact that physicians must be licensed and carry malpractice insurance. Stem cell therapy should be a decision a patient makes with his doctor, not with an uncaring scientist or government agency. I am truly disappointed to see yet another story that does not bring to light the conflicts that I mentioned.
So she’s making unsupported, angry accusations of conflicts of interest, a big pharma conspiracy, and scientists being “uncaring”, but providing no evidence for any of this.
None of that is correct.
It looks like all the comments on this article have now been removed, perhaps because some got out of control and potentially libelous against me and other scientists.
I don’t get the anger and accusations.
Why are the Stem Cell Pioneers folks being so mean-spirited and insulting?
It really doesn’t make sense, especially when you look back 4 years and see what these folks were up to.
Indeed, the founders of Stem Cell Pioneers were featured in a Washington Post article 4 years ago that had a distinctly anti-stem cell clinic tone. They were quoted about how they had been hurt by stem cell transplants at a dubious clinic that they were directed to by a website promoting stem cell clinics.
Now, however, the Stem Cell Pioneers folks seem to have done a 180 and are the biggest fans of stem cell treatment clinics out there, urging patients to go to such clinics.
What the heck? What changed?
I don’t know, but I’m looking into it for a second planned blog post on Stem Cell Pioneers.
At the end of that 2008 WaPo article, one of the founders is quoted as follows about stem cell treatments from clinics:
“At the beginning you think, ‘I’m going to be cured for life, I’m going to get better every day,…Well, that isn’t true.”
Wow, how things can get turned on their head in just a few years, huh?
Stem Cell Pioneers founders, if you are reading this, I’d like to talk with you about all this and hopefully have a constructive, respectful dialogue, rather than your angry and insulting accusations against me and other scientists. I have quite a few questions for you as well.
Please email me: knoepfler@ucdavis.edu
LLL6521 posted this:
In Ipscell.com or Mr. Paul Knoepfler's blog, he wrote an article titled, ‘ Stem Cell Pioneers ‘ Website Launches Mean-Spirited, Unfounded Attacks on Scientists.'
The article says without reiterating the entire article, Why are the Stem Cell Pioneers folks being so mean-spirited and insulting?
I tried posting a comment to his blog article, but somehow it showed up and then poof gone. However, he implies that he will monitor stem cell pioneers, I don’t know, but I’m looking into it for a second planned blog post on Stem Cell Pioneers, said Knoepfler. Here is part of the comment that was removed. It mentions the first message on this thread, and then continues on with this:
...Dr. Knoepfler, do you currently receive or have received any grants from National Institute of Health and National Science Foundation? And are you attempting to patent any future discoveries? Barbara is not the only one opposing your position on autologous stem cells being a drug. There are many more people, and they are growing in numbers. Believe me, whenever we see another blog or mention that autologous stem cells are unproven and dangerous. We will simply expose your conflict of interests of having these medical procedures progress like any other medical procedure that may hinder your future patents and royalties.
______________________________________________________________
My response:
Barbara
Thanks LLL6521. Mr. Knoepfler and others might want to read this article that I just posted in another section http://www.stemcellpioneers.com/showthread.php?t=6119
The posting from his blog is below my comments.
I don't believe any of the comments are getting more "extreme" as Mr. Knoepfler suggests. I guess he believes that patients should have been high fiving each other and throwing some lavish celebration parties in light of the recent ruling in the Regenerative Sciences case. I guess he also thinks we should like the type of press the ruling got in many cases where the conclusion was that the FDA was victorious and that this was the end of the lawsuit. The truth was not told in most articles I read. This case is far from over Mr. Knoepfler.
There have been attacks on me personally for my support of a patient's rights to use their own stem cells. On LinkedIn, one PhD said I was a zero and that I knew nothing because I did not have a degree in science. Another blog had a link to a disgruntled patient who has made accusations against Regenerative Medicine Institute and Angeles Hospital. On this PhD's blog, this single incident was treated as though it was a major event proving the PhD's theory that stem cell therapy is dangerous.
As for rolling out an article that is years old and citing that as Mr. Knoepfler has done, that proves my point that some scientists are out of touch, unbending and do not like change. The first treatment I had was a disaster. It's why this forum was started. Why go back to the dark ages though when so many improvements have been made and so many solutions other than denying patients their human rights should be open for discussion? I was also misquoted in the Washington Post article and immediately made a comment to that effect. Apparently, Knoepfler chose to ignore that.
This forum is not kind to every operation out there. We acknowledge that there are doctors and clinics that only want our money. We are aware that safety is important. We were one of the only voices railing against X-Cell Center in Germany on a consistent basis. We exposed Casey Nabavi. We have warned about other operations and will continue to do so. That being said, research scientists are not exempt from criticism on this forum especially when the media refuses to vet those quoted as experts or industry spokespeople. The public has a right to know what conflicts of interest these spokespeople have if any. It's simply not good enough for me and hopefully not good enough for others to simply quote that John Doe, PhD. from such and such university states this and therefore it is a true scientific, unbiased fact.
Knoepfler says we are the biggest fans of urging patients to go get stem cell treatment. He says, "What the heck. What changed?" Apparently, Mr. Knoepfler hasn't really read many of the posts on this forum. Nothing has changed Mr. Knoepfler. We still respect science, we simply do not respect scientists who seem to be ecstatic over the court ruling that gave us all so much hope. That was terribly disrespectful of patients Mr. Knoepfler. We also do not respect PhD's who of late seem to somehow believe they are medical doctors. I see a lot of that online and it's something that needs to be challenged. I also don't see a lot of PhD's who have blogs such as yours explaining what your work could mean in the future to you monetarily. I am happy to explain to you what stem cell treatment means to me. It means that I am feeling better than I have in years. It means that I have had a verified increase in lung function. It means I am not declining. It means my quality of life has done that 180 turn you talked about.
You could also do us a favor by dropping the "protection" aspect of your arguments. What on earth are you protecting someone from who has a terminal disease and no quality of life? Prove to us that you aren't protecting your own patents, jobs and funding. And why don't you get it that many patients don't have years? You seem to believe that we should be content to die off willingly for the sake of research that quite honestly does not seem to favor the use of our own stem cells as a practice of medicine with our own physicians.
I honestly am surprised that you didn't contact me directly, but perhaps your motive was more about defending yourself than really wanting to know where I and others on this forum are coming from. If you would like to host Ask the Doctor (we can call it Ask the PhD) and field questions from our membership, then I invite you to do that. Please contact me through this forum.
__________________________________________________ ____________
Here's the info from Paul Knoefler's blog that LLL6521 is talking about.
‘ Stem Cell Pioneers ‘ Website Launches Mean-Spirited, Unfounded Attacks on Scientists https://www.ipscell.com/2012/08/stem-cell-pioneers-website-launches-mean-spirited-unfounded-attacks-on-scientists/
Posted on August 15, 2012
There’s a website out there called Stem Cell Pioneers.
It is very much an advocate for adult stem cell clinics.
More and more these days, the folks running Stem Cell Pioneers have been posting comments on stem cell articles on the Internet. These comments have also been getting more and more extreme of late as well. Angry even. They attack and insult scientists and anyone who questions for-profit stem cell clinics or technology.
If you look at the discussions on the Stem Cell Pioneers website itself as well there are also untrue comments that frequently are insulting and mean-spirited to specific scientists including me.
I have a pretty thick skin after all these years in academia and a couple years as a blogger so I can handle criticism. But I’m puzzled.
Why are they so very angry and mean-spirited?
I don’t get it. Why would a purportedly pro-patient website attack stem cell scientists?
One example of their anger is on a Star Tribune article about stem cell treatments where I was quoted by the reporter, who interviewed me as a stem cell scientist/expert.
The Stem Cell Pioneers founder commented thusly on that article (emphasis mine):
Why does the media not give background information on “experts” that are quoted and the ISSCR? There are conflicts of interest that need to be reported. This is all about the money - BIG MONEY. Patients getting treated with their own stem cells is not profitable to anyone but doctors who administer the treatment. As a patient with a terminal disease & co-founder of the Stem Cell Pioneers forum, I believe I can speak for myself and most other forum members, that we believe that the FDA’s regulation of our own stem cells as drugs is nothing short of a death sentence and a violation of our civil rights. We are also tired of the research community, Big Pharma and the FDA protecting their own interests and the media for failing to really dig deep and understand the conflicts that abound. Space does not permit me to print a list of patents held by current and past presidents of ISSCR, but the list is a long one. This fight is far from over. Patients are tired of being used. Many, like myself, have tried all means of conventional medicine. There are no clinical trials and yet we are told to wait decades for our own “safety”. WE DON’T HAVE THE LUXURY OF TIME. There are safeguards for patients just in the fact that physicians must be licensed and carry malpractice insurance. Stem cell therapy should be a decision a patient makes with his doctor, not with an uncaring scientist or government agency. I am truly disappointed to see yet another story that does not bring to light the conflicts that I mentioned.
So she’s making unsupported, angry accusations of conflicts of interest, a big pharma conspiracy, and scientists being “uncaring”, but providing no evidence for any of this.
None of that is correct.
It looks like all the comments on this article have now been removed, perhaps because some got out of control and potentially libelous against me and other scientists.
I don’t get the anger and accusations.
Why are the Stem Cell Pioneers folks being so mean-spirited and insulting?
It really doesn’t make sense, especially when you look back 4 years and see what these folks were up to.
Indeed, the founders of Stem Cell Pioneers were featured in a Washington Post article 4 years ago that had a distinctly anti-stem cell clinic tone. They were quoted about how they had been hurt by stem cell transplants at a dubious clinic that they were directed to by a website promoting stem cell clinics.
Now, however, the Stem Cell Pioneers folks seem to have done a 180 and are the biggest fans of stem cell treatment clinics out there, urging patients to go to such clinics.
What the heck? What changed?
I don’t know, but I’m looking into it for a second planned blog post on Stem Cell Pioneers.
At the end of that 2008 WaPo article, one of the founders is quoted as follows about stem cell treatments from clinics:
“At the beginning you think, ‘I’m going to be cured for life, I’m going to get better every day,…Well, that isn’t true.”
Wow, how things can get turned on their head in just a few years, huh?
Stem Cell Pioneers founders, if you are reading this, I’d like to talk with you about all this and hopefully have a constructive, respectful dialogue, rather than your angry and insulting accusations against me and other scientists. I have quite a few questions for you as well.
Please email me: knoepfler@ucdavis.edu