Girl's cord blood helps her recover from CP

[barbara]

Thank you to Dr. Payne for supplying this information for us. I also want to make sure that everyone understands that Drs. Payne, Steenblock and Ramirez were well out in front when it comes to this treatment which is now touted as cutting edge and newly discovered.


Video news story: Girl's cord blood helps her recover from cerebral palsy


http://cosmos.bcst.yahoo.com/up/player/popup/?rn=4226712&cl=10001455&src=news


One of the head Duke researchers -- Dr. Joanne Kurtzberg, director of pediatrics at the blood and marrow transplant program at Duke University Medical Center in Durham, N.C., -- publicly discredited what Drs. Steenblock & Ramirez and I wrote and said back in 2005 about the merits of cord blood stem cells for CP (She argued that subcutaneous use of stem cells was useless and only IV was of merit -- see excerpts from a June 2005 article below. She did not even think about the possibility of growth factor synthesis by fat tissue stimulated by subcutaneously injected cord cells, something posited in a paper of mine that was published during 2005 http://www.journal-mhr.com/PDF_Files/vol_2_3/2_3_PDFs/2_3_6.pdf Also, she did not bother to research Dr. Ramirez -- the program she was discrediting -- for if she had she would have discovered that Dr. Ramirez had been doing IV infusions of cord stem cells on children since 2004 -- something published widely in various articles and easy to turn up with a simple Google search)..

http://www.cerebral-palsy-web.org/news/news-0023.htm

"It sounds like snake oil," said Dr. Evan Snyder, a stem-cell biologist and director of the stem-cell and regeneration program at the Burnham Institute in La Jolla, Calif.


"It's a total sham, the whole thing," Kurtzberg said of Ramirez's procedure. Kurtzberg said the cells must be given intravenously or injected into the fluid around the brain to be effective on brain damage. "Giving them under the skin is useless," she said.

2005 pilot study -- Cord Stem Cells injected subcutaneously & CP: http://www.journal-mhr.com/PDF_Files/vol_3_2/3_2_PDFs/3_2_2.pdf

[barbara]

Due to an inquiry by a member, I asked Dr. Payne, to please clarify what he sent me to be posted. Thank you again to Dr. Payne who always takes time to help us here on our forum. Here is his reply:


At the time I wrote the original e-mail that was posted to stemcellpioneers.com, I was rushed and did not flesh it out as I would have liked. In light of the e-memo you received, I have gone back and tried to fill in the blanks. Mind you, I am under the gun right now in terms of ramping up a clinical research program that involves 4 countries, so what I have written is done while between distractions. Hopefully I managed to do justice to the task at-hand. ~Anthony G. Payne, Ph.D.

__________________________________________________ ________________________


Video news story: Girl's cord blood helps her recover from cerebral palsy


http://cosmos.bcst.yahoo.com/up/play...01455&src=news


One of the head Duke researchers -- Dr. Joanne Kurtzberg, director of pediatrics at the blood and marrow transplant program at Duke University Medical Center in Durham, N.C., -- publicly discredited what Drs. Steenblock & Ramirez and I wrote and said back in 2005 about the merits of cord blood stem cells for CP (She argued that subcutaneous use of stem cells was useless and only IV was of merit -- see excerpts from a June 2005 article below. She did not even considered the possibility of growth factor synthesis by fat tissue stimulated by subcutaneously injected cord cells, something posited in a paper of mine that was published during 2005 http://www.journal-mhr.com/PDF_Files...PDFs/2_3_6.pdf As is reflected in an article of mine titled ?Is Something Amiss??, a scientists should not be quick to dismiss an occurrence or phenomena that is repeatedly observed just because it challenges traditional understanding or models, provided the occurrence or phenomena does not violate the known laws of physics or chemistry, etc. Consider this from my op-ed piece, ?Is Something Amiss??--



In the world of biomedicine, the question of whether a particular drug or procedure is effective or not is settled in the arena of science ? namely, well designed and executed clinical studies. One doesn?t dismiss a treatment or procedure that has a rational foundation (i.e., doesn?t violate established scientific laws or principles) a priori ? which is to say, before conducting tests. But this has been exactly what many experts in stem cell biology have done when it comes to the observations and data collected and reported by SRI. Rather than suggest the need for controlled studies to determine whether or not the clinically significant improvements reported in scores of patients treated with purified cord blood stem cells in Mexico for non-blood maladies pan out, many of these scientists have dismissed the entire treatment as ?a scam?.

This is not the kind or degree of informed open-mindedness one would expect of highly placed researchers in major institutes and universities.



Also, Dr. Kurtzberg did not bother to research Dr. Ramirez ? the research-oriented medical program she was discrediting -- for if she had she would have discovered that Dr. Ramirez was also doing IV infusions of cord stem cells on children --- since 2004 -- something published widely in various articles and easy to turn up with a simple Google search)..

http://www.cerebral-palsy-web.org/news/news-0023.htm



This fact makes it clear that Dr. Ramirez and his team were experimenting with various methods of administering stem cells to influence the brain, both ?tried and true? (IV) and highly experimental (Subcutaneous). Had Kurtzberg availed herself of this information, maybe she would have come to realize that ? well, maybe, just maybe ? the doctors involved were using several different ways to deliver stem cells, and were comparing them. Granted, this was not spelled out in the papers that appeared concerning the effects being noted after children were given subcutaneous injections, and perhaps I am being overly demanding in terms of expecting Dr. Kurtzberg to have done some digging that would have revealed this, before delivering a learned opinion to a reporter.

But would it have been too great a stretch for her to contact Dr. Ramirez before she tendered her opinion? Did it occur to her that maybe an effect was being observed and reported that, while running somewhat contrary to conventional thinking, was nonetheless valid?

What I see occurring in many instances in which mainstream scientists and doctors are called on to comment on something that runs contrary to what their training and experience tells them, is an almost kneejerk dismissal or condemnation. Most of the time, IMO, this kind of response arises (in part) because an expert cannot conceive of a mechanism to explain or account for the phenomenon or observance in question. When something occurs medically that seems to lack a discernible physiological basis or mechanism, many are quick to leap to the conclusion that the effect observed doesn?t exist at all or is the end result of mistaken thinking, the placebo effect, delusion or intent to defraud (?It?s a scam?). I would remind those who can?t conceive of how something works? and who then dismiss what is reported as a ?scam? or such ? that we didn?t know the mechanism behind how aspirin worked its pain-relieving magic for over 100 years after its discovery, but this in no way invalidated the reality of its medical effects, utility or use.

Perhaps if those who were so critical of Dr. Ramirez?s work had approached what was being reported concerning the salutary effects of subcutaneously injected umbilical cord stem cells on neurologic function ? done a little cursory research or inquiry ? asked a few questions ? there would have been less dismissive statements made about what was being reported.

Am I expecting too much of busy scientists to do this kind of legwork before opening their mouths to the press? Perhaps. But then again, when a comment from an acknowledged expert can damage a science or medical professional?s reputation and his or her body of research, perhaps going the extra mile is in order. IMO, anything less risks not only doing an injustice to a legitimate line of scientific inquiry ? one that is faithfully reporting a genuine (and in the case of Dr. Ramirez?s work recurring) phenomenon, e.g., neurologic improvements in children following a subcutaneous injection of purified CD34+/AC133 umbilical cord stem cells near the umbilicus ? but by so going runs contrary to the nature of the scientific enterprise and to the very progress it seeks to produce or spawn.

Instead of this:


"It sounds like snake oil," said Dr. Evan Snyder, a stem-cell biologist and director of the stem-cell and regeneration program at the Burnham Institute in La Jolla, Calif.


"It's a total sham, the whole thing," Kurtzberg said of Ramirez's procedure. Kurtzberg said the cells must be given intravenously or injected into the fluid around the brain to be effective on brain damage. "Giving them under the skin is useless," she said.



Why not say something skewed a little more towards open-mindedness and also decidedly more diplomatic or gracious? Had a simple query been made to Dr. Ramirez by his critics?and mind you he never received a single e-mail or call from any of the scientists quoted by the press with regard to his ongoing clinical research -- one of these experts might have actually been inclined to say something along this line concerning the effects of subcutaneously injected human umbilical cord blood stem cells:



?Well, injecting stem cells subcutaneously and having the cells or their influence locally produce benefits in the brain is something not supported by any other line of animal or human research I am aware of. This is not to say that the improvements Dr. Ramirez and his team are reporting are illusory or the end result of the placebo effect. This well may be true in some instances, but perhaps not others. Dr. Ramirez shared with me 3 cases of blind children with optic nerve hypoplasia beginning to see within 4 to 6 months of their treatment, something that appears to far exceed what can be pulled off medically by patient belief or expectation.

The bottom line, in my opinion, is that more research is needed. This is, after all, how we in science determine whether something is working or is genuinely present or not. And so, it is only by carrying out double-blind, placebo controlled studies that we will be able to determine whether subcutaneously injected cord stem cells produce statistically significant results; which is to say, determine whether the effects reported by Dr. Ramirez and his team are genuine and pan out. ?


2005 pilot study -- Cord Stem Cells injected subcutaneously & CP: http://www.journal-mhr.com/PDF_Files...PDFs/3_2_2.pdf

[hegy]

hear hear!!! well said barbara,as is all too often the case if a person doesn't play by established & proved methology, then according to the "experts" it cannot work & if it did it was a fluke.

[barbara]

I agree completely Hegy. These are Dr. Payne's words and a sad reminder how some doctors as he points out very well, have what I would call tunnel vision or better yet no vision.

[paigie]

Hi i have just received an email from a relative, reading this blog it sound familiary what he is saying. I dont no what to reply back. Can anyone guide me as i am still new to stem cell. I dont no all the answers.?

As for "offshore treatment clinics", well, there's quite a few people in new zealand who went overseas for various treatments and then returned with nothing to show for the exercise health-wise, and poverty to add to their ailment once the clinic had sucked every last cent out of them. So to pretty much anybody other than you I would say "don't be so bloody stupid" but you've done such an amazing job of managing Paige's conditions that you have earned a lot more respect than that.

So the question is, how do you tell the snake oil from the good stuff; and how do you know if the clinic is performing a dangerous experiment or a proven safe procedure ? How do you know if the person handling Paige is a competent and capable operator or a dangerous quack ? And are they operating in a place where there is at least some chance of holding them to account for their actions, or somewhere where they can quickly disappear when their treatments turn out to be toxic ?

[barbara]

Paigie - One of the purposes of this forum is to try to weed out the good from the bad. There are no treatments available in the U.S. (do we call the U.S. in shore?) for most diseases using stem cells. A person who wants to try stem cells is forced to seek treatment outside the U.S. and I believe New Zealand is the same way.

What do we do then? We try to gather as much information as we can about the clinics or doctors that interest us. Read the testimonials, but do not use them as your sole source of decision making. Consider the cost. Consider what type of treatment is offered and then do all you can to see if it even makes sense. Do you feel pressured to make a decision (always a bad sign if you ask me)? Are all your questions being answered to your satisfaction? Are you fairly asking the same questions of all the doctors you speak to so that you can compare the answers? What about follow up if there are problems or more questions or additional treatments needed? How long has the company or doctor been treating patients? Does the company change locations frequently? Do they seem overly friendly in an effort to not dwell on the medical part of the interview? Do they offer cures, success for almost everyone, no drawbacks,etc?

These are all things to consider. No one has a cure using stem cells for anything right now. Some are having better success than others, however.
Be leery of any company that says they have multiple locations and then when it comes down to treatment, they really only have one. Some websites I have seen are just plain full of lies. Cellulogix International comes to mind as one of these companies.

I think most people on this forum will be glad to help answer your questions and hopefully, reduce your worries and fears. The science is there, so the term snake oil is really not applicable.