81 Comments

  1. Mel Gibson has been very vocal against embryonic stem cell research. There is a fair amount of promoting stem cell treatments to undermine any research using embryonic stem cells. With Mel Gibson’s history I would suspect you are right and this is more a promotion video than informational.

    • Tell that to 2 MS patients who are symptom free at present after treatment. Insofar as more scientific a/o academic scrutiny, especially regarding the FDA, I have numerous proven FUBARs to highlight the zero trust I have for our current R&D pathways.

      • @Shane,
        Are you referring to 2 MS patients treated within a clinical trial such as at NW University or at a clinic?
        Also, tell us more about these “FUBARs” please.
        Best,
        Paul

  2. We can respectfully agree to disagree as we always have. We come from very different worlds. I am a no option patient who exhausted all FDA approved treatments living with a chronic disease. Most of the people seeking this treatment are in the exact same situation.

    The newly enacted right to try movement was monumental in the fact that it gave patients back their voice. It gave them back their constitutional right to life. Our right to medical freedom.

    The current FDA Commissioner in his June 4, 2018 press release stated the need for greater use of real-world evidence. We represent a group of over 2,000 patients safely and effectively treated by adult stem cells. With all do respect, your work is in the lab. You don’t treat patients. Your work in the lab is greatly important, but cannot consistently ignore real-world evidence.

    A few facts in your opinion piece that were omitted. The indisputable fact that Mr. Gibson’s father was 91 and given only a short time to live due to multiple issues. He received adult stem cell therapy in Panama and just celebrated his 100th birthday. Those are facts. Facts that cannot be disputed and can be backed up with medical records.

    The 2,000 plus patients in our group are living, walking examples of the safety and efficacy of this treatment. Many who do not have to fight for their lives, maybe unintentionally, tend to make a mockery of patients that chose to fight, and won, by seeking an adult stem cell treatment.

    I think it is easily forgotten that these are predominantly no option patients who are exercising their constitutional right to life by seeking alternative treatments. Shouldn’t we be happy for those who using whatever means succeeded in conquering their diseases? At the end of the day this is all about the patients. We need to see and hear them and stop speaking about them as if they do not exist. After all, patients are the ultimate stake holders.

    This treatment is not for everyone and many successfully manage their disease using other means. However, when you lose all options why is it so bad to succeed using this means?

    So, an infomercial or a patient success story? A beautiful ending for a man who was given a death sentence and not only survived, but lived to celebrate his 100th birthday. Isn’t that what it’s all about?

    Respectfully,

    Tracy Thompson
    Co-Founder patientsforstemcells.org

    • Thanks for the comment, Tracy. I respect the fact that as much as we disagree on a number of things, you are passionate about your cause and your comment is constructive.

      • You mean to accept the fact that your article references someone failing Not doing the EXACT same thing as in Panama Maybe if you showed a failed study here that Does follow what panama’s procedures is doing people would believe you…. Otherwise i am safe to side with the 91 year old that was pretty much on his deathbed train who beat the problems thanks to the panama office When i see studies that do it and test the exact way it is done in panama and FAIL at that point this can be discredited then… Not with this article frankly i am sorry please try again.

    • Hi everyone. M new here in this blog. My boyfriend has been diagnosed w/ a very a rare illness w/ no treatment to date. We are of course interested in going to Panama to try but short of financial resources. Any thoughts where we can get help.

  3. That’s just your opinion that this is a promotional video. Every time a patient tells of their success with adult stem cell therapy, doesn’t mean they want to promote a certain clinic or doctor. It has much more to do with telling their story. I’ve been treated by more than one doctor/clinic. I’ve been interviewed on TV, radio, quoted in articles etc. just like you. I’m not trying to promote a certain clinic! I’m trying to give patients with no voice a voice and a right to medical freedom with the use of adult stem cells. With that being said a patient has every right to tell the story of success or failures with adult stem cells. Patient voices have been squelched for way too long. Trust me Dr. Riordan does not need to put himself out there like that to drum up business. Assumptions are often very wrong. If a future patient was able to share their story of a successful treatment with iPC cells, would you automatically consider that only for promotional reasons? If only everyone had a patient wellbeing 1st and foremost on their minds. Approved drugs damage and kill, yet that’s ok? As a successfully treated adult stem cell patient for MS and ACL repair, this is just the same discussion we’ve been having since 2012, just a different day.

    Do you believe Mel Gibson, doesn’t have a right to tell his story or his fathers? As a patient, does he not have a right to have the scientist, PHD, beside him who made this all possible? I’d surly want Dr. Riordan beside me explaining the science behind all this. I understand a lot, but I don’t understand the actual science like he does. I’m not a scientist. I’m a patient. Medical Freedom means something in Panama, and in Texas. My disease, my body, my right to seek medical freedom, especially for ‘no option’ terminal or chronic patients. It’s a very democratic point of view. (and I’m not referring to a political party)

    • @Jennifer,
      Did you watch this episode?
      I ask because you focus in your comment on patients telling their storing but this video is to a large extent not focused on a patient telling their experience of what they see as a success (or even of Mel conveying his father’s experience).

      There’s some of that, but a lot of the video is instead Riordan being given a platform to pitch his stem cell business, his books, etc. It seems pretty naive to claim that someone being in a video with 1.8 million views on YouTube where you can talk about your business wouldn’t help drum up more business.

      Joe was not really asking any even moderately probing questions and there are some balanced questions that could have been asked and/or pushed on more by Joe. If he just did a GoogleNews search on “stem cells” he could see a lot of stories that could be the basis for fair, but probing questions.

      In my opinion overall it instead came across as mostly a marketing thing rather than an opportunity for patient stories. Maybe others feel differently.
      Paul

      • Yes, I did watch the video when it 1st came out. I’m sure it did drum up more business, but the motivation behind this is not for someone to speculate on. You had a book that you promoted vigorously if I remember correctly. Wouldn’t you have loved to go on Joe Rogan and talked about it? I imagine Joe isn’t a scientist or a patient so that may reflect his interview style. Kudos to him for having an actual stem cell scientist and a patient on the show. That doesn’t happen very often. (I’d never even heard of The Joe Rogan Show before this interview)

        • ALSO, I love how this is always an issue when mentioning Rogan, he’s a comedian…he’s not advertising his podcast as an expert interview on ANYTHING. He’s not bringing people on to debate them (unless that’s the direction the podcast decides to go in), Rogan states over and over again “I’m no expert, I’m not condoning anything specific, I just like talking about things that interest ME”. That’s his repeated disclaimer. Your whole article is anecdotal and self serving to your point of view and agenda. And that’s YOUR prerogative as the originator of THIS website article. Kettle, this is pot, you’re black.

        • Because of Mel Gibson’s incredible video I am desperate to take my mother and want to try the umbilical stem cell in Panama badly. The problem is, I can’t find anyone else that has benefited. If anyone can direct me I would so appreciate it. I’ve seen a couple MS videos but no frailty of aging and chronic illness stories. Wouldn’t there be thousands of testimonies or at least a dozen? wouldn’t there be months or years of a wait list? Wouldn’t the rich and famous be flocking there? Please, I really want to be directed to find these testimonies. If anyone can direct me I’d be very grateful. Did Mel Gibson get free treatment to promote this. I just think he’s the greatest and the video gave us hope but we don’t want to be duped.

          • Sorry the diagnosis is immune deficiency disease, chronic fatigue, chronic pain, bedridden, loss of quality of life. 58 years old. Epstein bar. She was turned down under all of these but got accepted when we applied under: frailty of life. Again, looking for people that went to Panama, and got their life back. We’d gladly go if it was 70% success rate but would assume there would be evidence backing this up. Did ask the schedule person for any referrals of patients to talk to but he could give us none.

          • @Chris,
            I don’t know concrete facts of any potential monetary side of that video, but we’ve certainly seen many celebrities receive something of value in exchange for doing promotion of stem cell clinics over the years so it’s at least possible here.

            Most recently we saw William Shatner reportedly get free stem cell injections (which would have been very costly) for doing an ad on Twitter for a clinic/associated business. https://ipscell.com/2019/06/about-that-captain-kirk-stem-cell-treatment/. At least Shatner was upfront about it, which was good on that level.

            I get the feeling that you are looking for hope which totally makes sense, but that you are feeling some concerns or skepticism. I think you are right to ask a lot of questions and be careful.

            My sense overall is that the idea of stem cells for aging and/or frailty is only an unproven idea at this point. There always will be risks too of some kind.

            More generally, a number of people have contacted me after going to various stem cell clinics in the US to tell me that they believe that they got duped. Admittedly some other people are happy with the clinics, but I think much of it is placebo effect that only lasts a month or a few months. Even some of the top fans of stem cell clinics end up getting injections over and over again because even in their view of things the positive effect does not last. If you start multiplying $5K or $10K by injection after injection after injection, the cost can easily get to $50K or $100K or more.

            I have no direct interest in the clinics or competitors of them or anything. This is just my educated opinion as a stem cell biologist (not a physician) who has been doing this blog for almost 10 years and talked to many people on different sides. My best to you. Paul

      • I, my wife and son all had MSC stem cells 12-10-2018 from Predicrice Biotech and it fixed me of my ankle pain I’ve had for years. My wife of her knee pain she has had for several mouths and my 4 son with Autistim keeps showing improvements daily!
        Panama is a good place to use too!

    • about a person who said that some of theses drugs can harm , this is cwhat happened to me with synthroid. I have kidney disease and diabetes so I’m hoping to go to Panama, just hope it can help. these drugs are horrible. I was so healthy before I went to this man , ge even George church at Harvard says he can reverse aging and all sorts of things .these
      medicines are horrible.

  4. It seems you have missed a very important point here. 1st the concept of a screening process that selectively builds up the highly reactive stem cells they call “golden” embryonic cells that secrete specific chemistry.

    And the most important point is that they have recognized that it is not the presence of the “golden” cells but the secretions of these cells that promote restoration of function and healing,

    This is a major advance in understanding process and the pharmaceutical industry is going to be all over it.

    Much of life/research is about asking the right question and this research team has done so.

    • @Lorin,
      I did hear the mention of “golden” cells in the video, but to me the use of that kind of non-scientific adjective to describe cells seems questionable and immediate raises a red (or should I say “ruby”) flag.
      I also noted the claim that the “golden” cells secrete factors, but if the cells only hang around a short time, I still don’t see they can have any lasting, meaningful benefit.
      Bottom line — If there’s real benefit and it’s safe, prove it in a properly controlled, blinded study that is large enough to really figure things out. And do this before charging people.

      • Your starting to seem Questionable “admin” hard to attach truth to “admin” Maybe a name Like Joe Rogan? or Mel Gibson or James R Johnston III? can’t stand people who are afraid to talk there mind and hide behind a curtain 😛 Dont preach to me nixon about your ideals they are selfish in nature. You know in the USA it is Illegal to do the research sooooo that’s why people leave the country if they are desperate enough to work on medicine where there is less regulation. Should not be Surprised this is how we ended up with the China Problem…

      • In reference to the “golden cells,” Dr. Riordan was speaking in laymen’s terms for a podcast whose audience is not made up of academics or researchers. This is from the Cellmedicine website:

        Dr. Riordan on the Umbilical Cord Selection Process at Stem Cell Institute
        “Through retrospective analysis of our cases, we’ve identified proteins and genes that allow us to screen several hundred umbilical cord donations to find the ones that we know are most effective. We only use these cells and we call them ‘golden cells’.

        We go through a very high throughput screening process to find cells that we know have the best anti-inflammatory activity, the best immune modulating capacity, and the best ability to stimulate regeneration.”

        That sound fairly scientific to me.

  5. Paul,

    I rarely ever see a positive post on your site about what someone or clinic has done or achieved for their patients. Most times you talk down at what ever treatment they have offered or what the patient has had or said. I agree 100% with Tracey Thompson comments. I am sure anyone watching the video would have enough sense to realise that part of it maybe showing off Dr. Riordan and his clinic but at the end of the day the well being of the patient is the most important fact and outcome. For Mr. Gibson’s father it certainly seems to have allowed him another 9+ years with his family. I have not seen you out there offering or giving any treatment to patients who are asking for an alternative such as a stem cell treatment but you are happy to poke fingers at anyone that does. I am not saying what you do in your laboratory is not very important but so is allowing those patients that do want to look at alternatives treatments a right to do so and a voice to say how the treatment worked for them.

    You suggest there should have been more probing questions asked then why don’t you set up a video meeting with Dr Riordan or some other well known stem cell person and you ask the questions so we can see the answers or is it easier to pick someone else’s to bits? I am very sure we would all be very interested in watching such a video and see the answers to your probing questions.

    On another side even what you put out via this (your) web site is a some what promotional information channel about Paul Knoepfler, his thoughts, feelings and what he does. Some may say it is very one side towards you and your work and may be somewhat bias because of that.

    There is also a TEDx video done for Dr Shapiro– She went Panama Stem Cell Institute and had treatment on herself using Umbilical Cord Tissue. https://www.youtube.com/watch?v=OkTERUQUvpA Is this a promotional video or is she telling her story?

    David

    • @David, I might email Riordan to propose an email Q&A.
      My blog is by its nature going to reflect my views and background and in some ways include information about me. However, I’m not promoting injecting people and especially kids with unproven stem cells to make a profit.

      • Thank you Paul for reply and as I said in my post, I and many others would be very interested in seeing the answers to your probing questions with Dr Riordan. Hopefully what you put to him will be easy to answer yes – no type questions and that will help patients to make up their own minds if they wish to proceed with treatment.

  6. @admin Regarding “golden cells”, Riordan explains them in his book. Have you read it? Also, Joe Rogan has had stem cell therapy and stated on his show that it helped him. Perhaps that’s why he had Mel Gibson and Riordan on. Because it’s Joe’s personal experience as well. Good luck with your not-so-veiled attempt at trying to get yourself or one of your cohorts onto Joe’s show (for the ratings of course) to poo-poo everything not FDA-approved… The needle on my jealousy meter is pegging right now.

    • No, I haven’t read that book and probably won’t.
      You might be right about his motivation for that show being in part curiosity. But I think in the video there was something said about Mel asking Joe to do a show like this too and it seems Joe really respects Mel.
      Hey, if Joe wants to really get broader views about stem cells why not bring on someone like a professor or biotech leader with a different perspective who thinks real clinical trials are the key? Maybe like Jan Nolta my amazing colleague from here at UC Davis who is Editor-In-Chief of the journal Stem Cells and works on all kinds of stem cells including MSCs, Shinya Yamanaka, Sally Temple, George Daley, Robert Lanza, Jeanne Loring, etc.

      • I don’t think the country is in any danger of your perspective not getting out. A cursory google search shows that you receive plenty of exposure.

        Here’s a short list:

        HealthNewsReview.org
        Heathline
        LA Times
        KQED
        Sacramento Bee
        Forbes
        STAT
        Philly.com
        Medscape
        San Diego Union Tribune
        Consumer Reports
        Wired
        Nature
        Huffington Post
        Scientific American
        Washington Post
        New York Post
        The Verge
        Capitol Weekly
        Seattle Times
        The New York Times

      • Paul, you may consider reading Dr. Riordan’s more scientific book called ‘MSC’s.” (The other book is called Stem Cell Therapy A Rising Tide and is written in laymen’s terms so someone like me can understand) I haven’t read the MSC’s book, as it’s waaaaay above my head, but not your’s. May I ask why you wouldn’t consider reading it? It contains 800 clinical trials from around the world that show safety and efficacy of treating a large variety of conditions with adult stem cells. Also the FDA approved studies Dr. Riordan has done for Duchenne’s Muscular Dystrophy are quite astounding. One sweet young man from Indiana has been treated since he was 3 and will never progress like other patients who haven’t been treated! Ryan Benton was granted a “compassionate care,’ so Dr. Riordan treated him making him the 1st young man to be treated in the U.S. for Duchenne’s. Here’s a touching article about when Ryan Benton and 8 year old Issac meeting for the 1st time. These treatments were FDA approved until The FDA’s exemption ran out in the Fall of 2017. Here’s a quote from the article written by, “Coming Together For A Cure,” started by Ryan Benton Family.

        “After the first year of Ryan’s FDA exemption, Dr. Riordan petitioned the FDA to allow for Isaac to be granted the same exemption. Once again, thanks to the proven success of Ryan’s treatment’s and Isaacs sustained success from his treatments, the FDA granted Isaac the green light allowing him to receive six treatments over the course of the three years at Riley Hospital for Children in Indianapolis. This was an enormous blessing as by having the treatments available in their own backyard, the would not have to deal with the numerous complications of traveling out of the United States. Ryan’s FDA exemption expired in fall of 2017 and Isaacs shortly after. This left both families no other choice than to make the long arduous trip to Panama for each of their next necessary rounds of adult stem cell treatments.”

        Here’s a link to the full article. It’s well worth the read, as other patients because of the success Ryan and Isaac have had, have also received the benefit of adult stem cell therapy for Duchenne’s overseas.

        http://www.ctfac.net/fda-exemptions-expired-first-two-duchenne-muscular-dystrophy-patients-successfully-treated-adult-stem-cell-therapy-meet-first-time/

        Many in the industry argue it is unfair to charge patients thousands of dollars for these types of treatments. What you don’t know, because of the humbleness of many kind physicians only wanting to help patients regain quality of life, many patients aren’t charged a dime by their doctors. Patients who do incur costs, have the money raised for them. We just had a fundraiser for a close family friend of mine and raised 73K in one evening! It will allow my friend to pay off medical bills, receive the much needed cataract surgery which resulted as side effect from the FDA approved drugs he was taking AND receive 2 adult stem cell treatments out of the country for Wegner’s disease, an autoimmune condition. My friend finds himself in the unique position as a, ‘No Option’ patient at the ripe old age of only 32. He has been on a chemo drug, steroids and a variety of other drugs that have severely damaged his body for the past 2 years. Most patients don’t pay a dime out of their own pocket. Why do I know this? I’m in touch with thousands of patients who’ve done just the same! Where there’s a will theres a way! I foresee organization stepping up and helpingalleviate costs for patients who do have to travel out of the country until this is available in the U.S., and covered by insurance.

        I can really relate in a small way to what Ryan and Issac are going through having to travel out of the country now to receive this life saving therapy. As you know I was treated in Houston, in 2012 for Multiple Sclerosis, dxd 2004, and received only 1/3 of a treatment before the FDA shut this IRB study down. Can you imagine having the rug literally ripped out from under you? It’s emotionally and physically wrecking. I have since had to fly out of the country to Panama. Granted I have no mobility issues, thanks to the treatments I’ve had, so this isn’t as arduous journey for me as it is for patients like Ryan Benton. And that’s why we/PFSC fight as hard as we can to make this accessible. The point is thousands of chronically ill patients, where travel is extremely taxing, are having to become medical tourists in other countries, to receive an IV and some injections! Quite literally this could be taken care of in the comfort of their own fully capable physicians office in their own hometowns.

        In a perfect world all the brilliant scientists, doctors, industry and patients in America would collaborate, learn from each other, work together, all in the name of helping patients regain quality of life. If that would happen, America would be THE leader in cell therapies.

        Thank you for letting all voices be heard on your blog!

        Jennifer Ziegler
        Founding Member Patients For Stem Cells

        • jennifer
          im new to the stem cell debate and my 12 yr old son has Duchenne’; which is why we are listening very closely.
          we are researching and it is very helpful to hear from others experiences.

          I thank all of you for the dialog. Especially you Jennifer.

          p.s i do like the poking of Admin “Paul”, how did you guys know his name. Awesome bust out.

          scott

  7. This had more of a sale pitch feel than an interview. This showed Joe being used as a tool unwittingly or not. Why he couldn’t simply ask what percent of Kids dont respond to stem cells therapy and the reason for it?

  8. Many of these comments are unfair to Paul, and to the rest of us scientists who are trying to teach people enough science so they don’t get scammed by unscrupulous marketing. We don’t get any benefits from this effort.

    If you like to watch shows, watch Dr. Sally Temple explaining what stem cells can and can’t do when she was on the Oz show. Check it out: http://neuralsci.org/video-dr-temple-dr-oz-show

    “Exposing Experimental Stem Cell Treatments Originally aired on 2/14/2017
    Investigative reporter Elisabeth Leamy goes undercover to find out the truth about experimental stem cell treatments and what medical professionals and clinics are doing to scam vulnerable patients.
    GUESTS: Nancy Grace , Amber Frey , Elisabeth Leamy , Montel Williams , Dr. Sally Temple”

  9. A reminder to people submitting comments to check out our blog’s comment policy first. For instance, comments that include personal attacks against individuals generally won’t be posted. Comments promoting unproven, potentially dangerous “treatments” from clinics or elsewhere generally won’t be posted.

  10. Yes this came off as salesy. Getting Mel on a long form interview style podcast also proves to be effective clickbait (as people think there might be some hard hitting questions about his past behavior.)

    You need to remove the reference to the Duke Trial (this was cord blood not UC-MSCs). Conflating this trial to what the Stem Cell Institute do is not appropriate.

    You can say what you want about the evidence lacking, but the reality is a variety of medications are given in mainstream medicine without Cohrane review endorsement. Clinicians who have sick patients looking at them in the eye understand they might have to do some risk reward calculations to determine if something might be worth a trial.

    Until you have skin in the game i think you have to be very careful talking about the ethics of providing a service (being a stem cell scientist doesn’t classify as having skin in the game imo). I think a lot of the comments above reflect people recognising this intuitively.

    And what’s with the laser beam focus on needing to understand the mechanism?

    One of the major problems with clinical trials (and medicine more generally) is focusing on surrogate end points and reducing (“risk factors”) to increase NNT. I understand the need to understand the mechanism but I think you are getting hung up on it in the case of MSCs.

  11. I studied a lot before ( not all people can do it for them it’s even more complicated) I can read and speak in 3 languages ( English /French and Russian) and I read but not that book of dr Riordan you mentioned but this one: « MSC (Mesenchymal Stem Cells): Clinical Evidence Leading Medicine’s Next Frontier »

    so I do my best to find out real scientific informations… my son had cardiac arrest
    ….. (acsident anoxic cardiac arrest at the age of 4 years and 2 months) 9 January 2016.

    List of universities all over the world doing real clinical trails for stem cells for children’s but you see what I thinks about mainstream medicine : Not satisfied not even a word strong enough to describe feeling that i have for our experience with French hospital care….
    April 2016 we were sent back home from hospital : in wheelchair badly adapted to Marc and parents (yes yes we bend to 2 to push My husband is 1m93 and I am 1 m70 cuffs been too low Even for me) …..my son was recognized 80% disabled !!!

    So naw he is not may be 20% rest ( he still has a bit balance problems) he is walking / talking and going to normal school
    Is it because if mainstream medicine ?

    No not exactly tins because of science science is always 10-15 years ahead of medicine….

    So Panama : I did and it gave a lot of gaines to my son event in school they’re noticed. He is starting to read (6 years old) he was struggling before to remember event letters.

    So in Panama we can find more parents testimonials on fb pages and with and good results…. not enough scientific proof for you? Parents testimonials ?

    But scientific proof is not always the reality !
    I live in France we have different medical system that USA and I can tell you haw many families do medical tourism in France :

    every year around 3000 families from France with desaibled children’s go abroad for therapies ! We organized association of parents /We contacted our new president Macron we contacted our different gouverneurs as well as local administrations in order to make changes in our medical system with all the lists of therapies parents use abroad and see : I participated actively in all actions 1 year ago just before elections of our president we got a lot of «  promises » but nothing was done in reality….

    So that what I thinks about mainstream medecin and mainstream doctors :

    I know
    Not all mainstream doctors are bad we have a lot of researcher doctors as well

    For example :
    My son had 5 heart operations ( it’s ablation of his WPW) wolf Parkinson’s wight syndrome it’s mainstream operation but in France 2 docors can’t made this operation sucsessfuly they did 3 operations here in France

    I had to find best doctor in world ( in Italy) he is professor and researcher in this domain : Rythmologie and his heart hospital have other technic 5 cateters ablation ( his name « Pappone ablation technique ») so he did finally successfull!

    Dr Park ( in USA) doing revolutionary technique of SDR operation for CP it’s literally changes life’s if cp children’s… and he is mainstream but researcher doctor….

    Dr Kurtzberg in Duke university doing just exceptional research for stem cells for CP children’s and for autism as well as dr Riordan doing research and treatments for deseases not juged treatable by FDA in USA ( si he established clinic outside USA because of legislation in USA so he is respected USA laws lol even if we can be not agreed with laws we have to respect them or change the country 😉

    Yuri Danilov in Wilsconine university doing fda tests and exceptional research fir PONS device cranial nerve non invasive neuromodulation.

    I can continue lol about LLLT research
    And much more 😉

    Dr Efrati fir example is a mainstream doctor 😉 he is working fir hospital but it’s the only case I think that hbot for neurological conditions started by him studying in hospital and with low pressures

    Others ( like dr Harch is privat hbot centers usually….)
    so why hbot is not taken seriously by mainstream doctors but naw only it’s started to change ?😉 mainstream hospital doctors from hbot started to make trails for neurology ( yes we have one such doctor in hospital in nice in france dr Gamain he did one trial for adults after stroke…. hopefully it will be recognized in 10-15 years ?????

    So I have to wait 10-15 years for hbot therapies and stem cells therapies will be approved before trying it?

    Who has to decide for child health gouvernement or his parents ?

  12. So this is enoth neutral ? And haw about freedom of speech ? It’s the roule For blogger

    So here pure my testimonials without links ok?

    • Ok, yes, this comment is more in line with the comment policy of this blog than your previous one that I did not post that contained false attacks, etc.

  13. To all of theses comments I say it’s easy to form opinions based on nothing you personally experience . For me and my Autistic daughter Panama stem cell institute has been a game changer . I am recovering my daughter from being trapped within herself and it is largely because she has had stem cell treatment .

    When she was diagnosed at 2.5 years old I started looking into the Stem cell idea but at the time there was very little information and few clinics offering the treatments . I was terrified to take my daughter out of the country without much information . Fast forward 4.5 years later , I happens across a medicalsimunar in Texas in which Dr Riordan was speaking about Stem cell treatment . After attending I decided to risk trying the treatment on my little girl . I was at a point where my concerns for her future were growing because Autism had a firm grasp on her in all aspects of all our lives . We book treatment and went 4 months later , and I’ve nevet regretted that decision and continue to treat her yearly as her results have been astounding.

    It’s irresponbile of you to speak on this subject without any first hand knowledge of what it can do for children . Parents are doing desperate things to change the path of their children’s future and stem cells and the Treatments Neil Riordan are preforming are nothing short of miraculous.

    My daughter at seven was largely trapped within herself . She could only speak 3-4 word utterances that we’re limited to her basic needs
    ie. I’m hungry , I need Potty , want an apple etc .
    She was extremely sensory and wore earphone to block out any loud sounds . Her diet consisted about 10 foods that didn’t cause her to vomit at the site or smell . And she was having bipolar outbursts that would last 45 minutes , of alternating laughing and fits of crying. At the onset of those fits I knew I needed to do something and stem cells made the most sense to me based on all the research I had done for the past 4.5 years .

    Only Days into the treatment Lexi responded to the stem cells . She woke up speaking to me in full sentences. We had our first real dialogue exchange in a hotel room in Panama and if it were only for that alone I would have been eternally greatful for choosing the treatment .
    Things for her improved at a rapid pace , she started responding to our facial expressions , and became more aware of her surroundings , she opened up to the world and took interest in actively participating in activists she would never do , ( boating, fishing , kayaking , tubing ) . She took her earphones off and has all but stopped covering her ears ( except when a baby cries ) .
    She started sampeling food off our plates and asking to try new things , She will now eat almost anything I put in front of her . She is excelling I’m school , has made friends and social connections and is developing skills which will allow her more self reliance . Her ATEC scores have dropped 53 points in the 3 years we have been having treatments . She is capable of expressing herself and her thoughts and feelings , something all children should have the ability to do .
    Lexis progress was so profound that we also took my non verbal Nephew for a treatment and within a few months he developed language and potty trained ( at 5.5yrs old ) . Both children have had life altering improvements based solely on the treatments they received at The Oanama stem cell Institute .
    Your comments about Neil Riordan and the Stem cell Institute are based on nothing but your need to fill up your blog page. Parents are desperate to help their children and your comments could easily deter them . Hope is all we have and many of us would give our own life for the hope of any future for our children .

    I refer every person I come in contact with that has a family member with Autism to the clinic . And to be completely honest , I don’t care what the reports say when they are released , it has been a huge success for 2 children in my life . I can see first hand and live the results .
    My little girl is now capable of saying “ I love you Mommy “ and having the emotional connection that goes along with it . We have hope that she will have a real and meaningful future after autism stole it .

    Neil Riordan is a man changing lives and I have the utmost respect and gratitude for him and his treatments .

    • @Loreaa,
      Thanks for sharing your experience.
      If you are comfortable, can you provide more details about the treatment please? Were the stem cells given IV into the bloodstream? Did the institute say how they think they work to give a benefit? Did they mention any risks? How much did you have to pay?

  14. Admin on pro panama SCT page is encouraging parents to post postive comments here about panama. My conceren are for this parents that had regression or no gains after getting sct in panama, Who is speaking out for those kids?

    • @Fred,
      Thanks for the important heads up. Do you have a link to that pro panama SCT page?
      Good question re: the kids who didn’t have good, lasting outcomes.

  15. Indeed SCT has helped some kids but it’s odd that that admin of “stem cells therapy for autism” facebook page is asking parents to post postive experiences with panama clinic here. Why kids that did not respond to SCT are neglected? What is Safety/efficacy rate of SCT in Panama and what subtypes that it helps the most would be most critical information for any parent considering SCT for their kids. How come Dr. Roidern doesn’t address the efficay rate of SCT for autism in his book?

  16. My child has been to this clinic twice and went great severe non-verbal Autism to verbal with moderate Autism. He had major gains. It was worth every penny. His immune system lab results gave improved immensely as a result.

  17. This post from last year explains my skepticism about stem cells for autism generally.
    https://ipscell.com/2017/09/still-skeptical-stem-cells-autism/
    In a lot of ways it just doesn’t make sense to me that the for-profit approaches being sold out there both in the U.S. and elsewhere would really work.
    Maybe I’m wrong about this, but as far as I know there’s no good, rigorous medical proof that this work and I don’t believe in selling an unproven treatment, especially in the context of experimenting on kids.
    Paul

    • The Stem Cell Institutes stem cell product has been approved for use by the FDA for clinical trials involving spinal cord injury and for compassionate use.

    • I took my son there for 2 treatments. Non-verbal autism…or mosty non-verbal….He speaks now. Last year I had the first ever conversation with my 8 year old son…..I asked a question… and he answered me. Before he never answered. Before he couldn’t stand to be touched or hugged for more than a minute or two, Before he almost never made eye contact, Before He always seemed in his own world and unreachable. He sits on my lap now, cuddles, He speaks in sentences, He watches shows and movies on tv and understands theres a story being told there….
      I don’t need a medical paper with a stamp on it to prove it works…I see the results every day.
      One year…..His whole life has gotten better, he can communicate better to the world, he is present in reality, he is understanding concepts and asking questions and even making funny comments….
      You want to see proof…I’ll send you the before and after video of my son.
      And it does work, and more and more kids are recovering from autism….and soon enough people will see and experience the results, there won’t be any more doubt.
      I can’t tell you how it works exactly, but I can tell you that 100% it did.

  18. I’ll spare you reading the whole history of Laetrile, but this quote from the website that summarizes its history is worth reading in the context of the stem cell phenomenon. It will seem familiar. Those who don’t know history are doomed to repeat it.

    “As long as there remain crippling and fatal diseases, there will undoubtedly be individuals eager to offer “alternatives” to scientific treatment and large numbers of desperate individuals willing to purchase them. The Laetrile phenomenon started with a pharmacist-physician who developed one concoction after another for the treatment of serious diseases, especially cancer. It continued with his son, a self-imagined scientist, who spent many years in college but failed to earn any graduate degree. A man who earned his fortune from gun-running and a catholic newspaper columnist promoted it as a persecuted drug that cured cancer. A cadre of John Birch Society members saw the repression of Laetrile as a sinister plot against their basic freedoms. After it was dubbed “vitamin B-17,” an army of health food devotees promoted Laetrile, along with vitamins and diet, as nature’s answer to cancer.

    After peaking in the late 1970s, the “Laetrile Movement” ran out of steam in the wake of the Supreme Court decision, the NCI study, the death of Steve McQueen, and other unfavorable publicity. But as the Laetrile fantasy faded, its prime movers added many other “miracle cures” to their arsenal and added AIDS, arthritis, cardiovascular disease, and multiple sclerosis to the list of diseases they claim to treat. Although they appear to speak with sincerity, they still fail to sponsor the type of research which could persuade the scientific world that anything they offer is effective.”

  19. But many American researchers, he said, “seemed more interested in carefully studying the mechanism of how H. pylori produced stomach damage rather than driving straight in to treat people.”

    “The opposition we got from the drug industry was basically inertia,” said Dr. Barry J. Marshall of the University of Western Australia, the other Nobel winner, and “because the makers of H2 blockers funded much of the ulcer research at the time, all they had to do was ignore the Helicobacter discovery.”

    “If the drug companies were truly into discovery, they would have gone straight after the Helicobacter,” Dr. Marshall said, but they did not because of the success with H2 blockers.

    “Had these drugs not existed, the drug companies would have jumped on our findings,” he added.

    and from: http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery

    How did you get the word out about your discovery?
    I presented that work at the annual meeting of the Royal Australasian College of Physicians in Perth. That was my first experience of people being totally skeptical. To gastroenterologists, the concept of a germ causing ulcers was like saying that the Earth is flat. After that I realized my paper was going to have difficulty being accepted. You think, “It’s science; it’s got to be accepted.” But it’s not an absolute given. The idea was too weird.

    Then you and Robin Warren wrote letters to The Lancet.
    Robin’s letter described the bacteria and the fact that they were quite common in people. My letter described the history of these bacteria over the past 100 years. We both knew that we were standing at the edge of a fantastic discovery. At the bottom of my letter I said the bacteria were candidates for the cause of ulcers and stomach cancer.

    That letter must have provoked an uproar.
    It didn’t. In fact, our letters were so weird that they almost didn’t get published. By then I was working at a hospital in Fremantle, biopsying every patient who came through the door. I was getting all these patients and couldn’t keep tabs on them, so I tapped all the drug companies to request research funding for a computer. They all wrote back saying how difficult times were and they didn’t have any research money. But they were making a billion dollars a year for the antacid drug Zantac and another billion for Tagamet. You could make a patient feel better by removing the acid. Treated, most patients didn’t die from their ulcer and didn’t need surgery, so it was worth $100 a month per patient, a hell of a lot of money in those days. In America in the 1980s, 2 to 4 percent of the population had Tagamet tablets in their pocket. There was no incentive to find a cure.

    You published a synthesis of this work in The Medical Journal of Australia in 1985. Then did people change their thinking?
    No, it sat there as a hypothesis for another 10 years. Some patients heard about it, but gastroenterologists still would not treat them with antibiotics. Instead, they would focus on the possible complications of antibiotics. By 1985 I could cure just about everybody, and patients were coming to me in secret—for instance, airline pilots who didn’t want to let anyone know that they had an ulcer.

  20. Unfortunately ancedotal stories of improvement do not count as any kind of “proof” that unproven for-profit stem cell therapies are effective. That’s not how science works. Any doctor worth their weight who truly believes they have found an effective treatment for a disease will find a way to do a double blinded clinical study. If a doctor makes big claims, and fails to do this then I can only assume they are not to be trusted.

    • @Maggie

      “Unfortunately ancedotal stories of improvement”.
      correction! Clinical observed metrics recording imrovement are not “anecdotal stories”, words do have meaning

      “. That’s not how science works.”
      Science is about falsification based on observable clinical evidence, we dont call them “anecdotal stories”

      “will find a way to do a double blinded clinical study”

      Internationally recognized “Helsinki protocol” outlines the procudure of performing clinical falsification when giving sugar/placebo to near death patient is widely consideren unethical. The orthodoxy of “double blind” is to support falsification, not the other way around.

      Historical example: to test the efficacy of Aids medication the Helsinki protocol was observed, as it would be quite unethical just to select a group of terminal patients and give them sugar solution because orthodoxy demands it as proper double blind study.

      the Helsinky protocol was clearly observed by Neil Riordan.

      https://en.wikipedia.org/wiki/Declaration_of_Helsinki

  21. Dr. Knoepfler,
    I’m puzzled by the way that you always mention that various stem cell clinics are “for profit”, as if this in itself makes them scientifically or ethically suspect. The vast majority of medical care in the US is for profit. Virtually all medical providers “want your money”, from your primary care doctor to university medical centers.
    And while I agree with you that we need more rigorous qualitative evaluation of different stem cell approaches, your assumption that only double blind research can do so overlooks that fact that it is often nearly impossible to find funding for double blind research if the subject is not one which can be patented, to guarantee a financial return if testing is successful. I think it would be rather difficult to patent an individual’s own cells, leaving stem cells in a situation somewhat analogous to orphan drugs. It would be more helpful if the federal government monitored the success (or failure) of existing clinics rather than shutting them down or driving them overseas.

    • @Oliver,
      To clarify, my concern is not so much just the for profit aspect all by itself, but rather the clinics injecting unproven and non-FDA approved stem cell-related products into patients on a for-profit basis. Make sense? There is no reasonable expectation of benefit and there are definite risks. To me such a practice is unethical. Maybe more importantly from a practical point of view some of it is probably illegal based on FDA regulations.

      As to your last statement, I disagree. Beyond the economic harm to patients and harm from false hope, a number of U.S. clinics and suppliers still operating have seriously harmed patients.

      In my opinion, at a minimum the riskiest operations really need to be shut down and quickly. As for the other hundreds of clinics, I’m not sure what the FDA will do or practically can do.

      Paul

      • I agree that stem cells that are not regulated by a federal or national standard should not be administering stem cell treatment. (that would include all US clinics that are doing so, because there is no safeguard or safety standard/ regulation that is required of the material.

        However, Panama stem cell institute gets their stem cells a lab called Medistem (Medistem Panama operates an 8000 sq. ft. Panama Ministry of Health-licensed laboratory)
        so there is some oversight. they aren’t operating in a vacuum like some of the US clinics.

        But i can testify that it worked for my son, the treatment he got in Panama, It’s not false hope at all…..
        But you know what kind of hope I had for my son recovering before I discovered the Stem Cell Treatment and seeing the results and hearing about the results and recovery other kids were making.
        I would have welcomed false hope….because before I knew there was a treatment that could help him…
        I had no hope. I was terrified for his future, and even more terrified for the future he would have after I passed on…I can’t live forever. He couldh’t talk…..He didn’t understand what was going on around him most of the time.
        It was not a situation I would wish on anyone, the worries that me and my family had for a future with no hope of recovery…..we were told it’s incurable…..and it isn’t.

        And no family should feel that hopelessness about the future of their child. Because there is hope. And there are real results. 🙂

  22. These people arguing against stem cells are bought and paid for by big pharma. Or brainwashed MDs that think its healthy to abide by the current FDAs model of consuming more grains than vegetables.
    Don’t waste your time debating. We all know the benefits. They can do their best trying to refute the testimonials, but we see the results.

  23. I stumbled onto Joe’s podcasts a few weeks ago when I was surfing YouTube. I know a little about him as an MMA commentator and comedian. I then watched podcasts from time to time, and discovered this one. I am 65 years old and have SLE (systemic lupus), fibromyalgia, holes in both lungs from the SLE, constant pain in my legs from the fibro (or something else, gawd knows what), osteoporosis-arthritis in both hips, chronic fatigue, and not much of a savings safety net or monthly retirement income. BUT, this video made my very curious about stem-cell therapy, which targets inflammation-related illness and problems. Traditional medication offers me Gabapentin and Plaquenil, both of which have possible serious negative side effects. (And thankfully I am not hooked on narcotics). As a result of watching the video, I’m looking into the option of setting up an evaluation for their treatment, and going there.

      • They have hundreds of peer reviewed studies. I am concerned that you are quite clear in your desire to omit evidence that contradicts skepticism I would agree is always warranted. If this doesn’t make the cut due to the blog policy, I hear you, and, it’s your blog. However, it does seem a bit sad to ignore so much you are fine claiming is not there that is there. As far as published papers and real evidence. I don’t even like Joe Rogan or Mel Gibson or people. But, unless you are the very thing you claim to detest: snake oil / frauds….I am curious after reading your post and every one of your comments here, that your takeaway is a podcast by people who don’t need the money is a glorified ad. Medicine is every changing. We all know the FDA doesn’t keep pace. Even your qualms here are absurd and discussed in the video. In terms of FDA restrictions for testing protocols but it’s a bit different when what is injected is organic and not designed in a lab. All they do is ensure what get’s injected is the best of the best for the stem cells they cultivate. I have no dog in this fight. I’m just concerned and a bit sad that you clearly have biases unrelated to reality, you’re jaded, or, someone is paying you to say the opposite within big Pharma. You will ban or deny this comment. None of this is a personal attack. For being a little read blog, it is a red flag to me how highly this shows up on Google WHILE straight up stating things addressed in the video are not addressed or that what they’re doing is not studied, verified, and real.

        • @Austin,
          You haven’t done your homework actually. For instance, the cells discussed in the video and my article are grown in the lab and they do change. Also, the word “organic” cannot be applied to stem cells.
          And the list goes on of how your comment is inaccurate in many ways.

          • Up in Spokane, Washington I saw a t.v. Commercial saying “Come to our free seminar to see how stem cell therapy can treat your neuralgia” – my sister is getting flyers in her mail too.

  24. I went through the evaluation process and have received a quote from them. My experience so far has been wonderful. They answered all my questions and I was able to speak with a doctor over the phone. What concerns me is that only 75-80% of the patient population sees success with their therapy and some of them need repeat visits. This does not work for 20-25% of the patient population. The cost is significant and I am wondering what my odds are… These stats were provided to me by the stem cell institute. I am very happy that they were honest and upfront about this when asked.

    • @Geeta,
      Thanks for sharing your experience so far. But I would urge caution in proceeding.
      How do you know those figures they shared are accurate? Did they show you actual data?
      How do they define “success” and do they ever use control subjects who get placebos?
      Paul

  25. For normal people like myself suffering from conditions, its always the same thing for alternative/new treatments. There is so many times people are fake/evil out there promoting their product. On the other end, a lot of people swear by these cures, and the placebo effect is real. And often the podcasters/bloggers have affiliate $ incentives so its often all bunk. So its a mess out there!! I once went for “laser treatment for a soft tissue issue that was supposed to be a cure but it didn’t do ANYTHING except drain my pocketpook. Same thing when i bought “mushroom tea” my favorite very well known podcaster at the time said gave him energy all day. Anyway, I am looking forward to this science advancing but researching this in particular, I found this post which scares me related to this same doctor: https://www.reddit.com/r/science/comments/dxq5s/spinal_cord_injury_patient_10_years_after_injury/c13quig/?context=1

    In short, its a waiting game. Currently, I will choose to suffer before I spend $25k on miracle cures make others filthy rich again. Fool me once …

  26. I have been listening to Joe’s podcasts for a long time. I believe he is a man with integrity and does not use his podcast as a platform to create infomercials for his guests in order to get some kind of kick back money. Is it possible that your blog’s success is due to the huge success of that original video? Most people searching for treatment options will also, usually search for a skeptical point of view as well. You are providing that point of view for all of those searches. Do you have any data of anything harmful happening to kids that are getting these treatments? If so, please be specific. Maybe it’s possible that it won’t work for everyone and that someone might waste their money. But there seems to be a growing number of testimonials from people having positive and life changing results. If I had a child that was desperately ill and conventional medicine was failing, I would be more than willing to try something that has some history of success and no real downside. You seemed concerned about kids getting unproven treatments. What would you say the biggest concern is, other than wasting money? I’m interested in what you have to say because I am considering stem cell treatment on my knee that was badly injured in jiu-jitsu. I had 50% of my meniscus removed and damage to surrounding ligaments and cartilage.

    • Hi Ed,
      I like your direct approach.
      Here’s my view. When it comes to clinical studies of new therapies like stem cells, the responsibility is on those offering them to prove in advance that there is a high likelihood of safety and efficacy before they start selling them. Things seem reversed here in my view with the clinics injecting autistic and other kids with unproven stem cells. So the safety here is a big question mark. I hope it’s safe and some data suggests negative outcomes aren’t super common with cord blood cells, but we just don’t know, especially in the longer term what might go wrong. Experiments on children require a higher standard of ethical consideration too.
      On top of that, the “evidence” of possible benefit from cord blood cells for kids consists mostly just of anecdotes, which aren’t really telling us anything we can be sure of.

      So I say to the clinics do the preclinical science and homework first before you start charging people for something that’s still experimental.

      I also like to use the car buying analogy. Imagine you are going out to buy a car and the dealer says “it’s probably safe…we don’t have conclusive data on that yet, but we think it’s safe” and then they say, “The care probably runs pretty good…we don’t have data on that really yet, but trust us.” Would you buy that car from that dealer?

      To be clear, clinics injecting children with unproven stem cells is far more serious and potentially dangerous than the car-buying experience, but the point is that there needs to be a good dose of healthy skepticism from consumers on the stem cell front. There’s a ton of hype out there and in my opinion the Joe video no this was full of hype. Best, Paul

  27. Are there any procedures using stem cells for orthopedic pain resulting in limited range of motion that you believe are viable, worthy treatments? If so, please elaborate.

    I am asking for someone I know who is a former athlete in his mid 50’s having continual issues with all of the following: Shoulder, elbow, hips, knees, ankles. He’s had surgeries on all mentioned, except the hips. He even had an ankle replacement surgery approx.10 yrs. ago, using a cadaver ankle bone (thank you all past & future donors out there, it’s not just organs that are of use). His choice was to undergo a fusion or try the replacement. Luckily, despite only 50/50 odd’s of success, his was successful. Now the other ankle is showing similar signs of degeneration, as well as other mentioned body parts with constant pain and limited ROM.

    As you can imagine, he is willing to consider any and all options for treatment which led him to a “seminar” on stem cell replacement treatment through injections, put on by a DC. Like others have mentioned I have nothing against chiropractic treatment per se, but the type of provider who was promoting this particular treatment, gave me pause.

    Thank you for any information you can provide on the viable use of stem cell treatment for above mentioned conditions.

  28. You said “I hope it’s safe and some data suggests negative outcomes aren’t super common with cord blood cells, but we just don’t know, especially in the longer term what might go wrong.” Will you please share with us a few of the worst “negative outcomes” that you are referring to? And with any of those negative outcomes, are any of them specifically caused by the stem cells themselves? In other words, anytime the skin is penetrated, for any reason at all, there are general risks like infection, etc. that have nothing to do with the stem cells themselves. There have been a ton of clinics doing stem cell injections for years now. I just want to know what problems the stem cells, themselves, have cause so far. I am asking because I am thinking of getting stem cell injections on my knee. I am a jiu jitsu practitioner of 12 years and my knee has seen lots of trauma. I have had about 50% of my meniscus removed through surgery on my knee. I am actually considering paying $20,000 to get this procedure done. Actually, it is estimated to cost around $30,000 with all of the travel expenses. So that is the cost of the premium umbilical cord stem cells that they would use. I have also been evaluated at a local clinic that says that they can do adipose stem cell injections for about $6,000 to $8,000 per treatment. So, through all of the stem cell injections that have been going on through the last several years, what is the worst outcome, that you know of, that was caused specifically from the stem cells?

  29. Sour Grapes- The medical community in this country is decades behind what is happening in the real world. Perhaps that is why the biggest cause of death in America is medical malpractice.You people are assholes!

  30. I’m currently on the fence.
    I personally know two people that have had success with treatment (U.S.) for injury related arthritis.
    The curious thing to me……the part that keeps me hanging onto the fence is that I have yet to hear or see any evidence other than subjective opinions. Even my two friends can’t produce before and after Xrays. I do believe they feel better. Why, if it’s said to be so successful, aren’t these clinics proving it? For an arthritic joint that has been treated and fixed it would seem like a no brainer.
    I’ve had thirteen orthopedic surgeries with two being total joint replacements. I’m 56 and beat myself up. I recently
    was told I needed a total shoulder replacement and am really wishing to see any proof other than opinions. I would do the treatment tomorrow if there was.

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