Stem cell clinic social media shenanigans exposed

Over at ScienceBlogs, Orac has put up an excellent post on the disturbing stem cell situation in Italy. This is a great, probing piece and I highly recommend it.

But there’s more going on there too that is worth taking a look at!

One of the other intriguing things about this piece is the extremely energetic discussion ongoing in the comments section on the piece.

A couple specific comments caught my eye in particular.

Comment #76 is from Dr. Javier Lopez, President of the Regenerative Medicine Institute (RMI) in Mexico:

My name is Dr. Javier Lopez, President of the Regenerative Medicine Institute in Mexico, all bloggers are more than welcome to ask any questions regarding the validity of our program. It is said when people use these forums to cite certain information that they cannot back up in any way shape or form. RMI complies with all Mexican Health Code as well as FDA Regulations regarding stem cell research. I wish we all do our due diligence before posting false accusations. http://clinicaltrials.gov/ct2/results?term=stem+cells+and+ageless

That’s not particularly unusual, but what happened next in the comments is certainly fascinating and revealing I think.

Immediately after Lopez’s comment, at comment #77 is a comment from one Dana George, who self-identifies as a “freelance writer” and “professional writer for 25 years” who says she has undertaken a two year, seemingly independent investigation of sorts of RMI in Mexico.

She also says, “I sincerely undertook this assignment with the critical eye of a longtime reporter.…”

What she found, she reports, is very positive about RMI and she is critical of Orac’s article and the “hocus pocus” discussion going on in the comments section.

She adds that amongst the patients treated there, “People who should have been dead years ago are thriving.”

Big claim, huh?

Then at comment #79 is something quite exceptional in the way of bringing clarity to a situation. Sort of like seeing a meteor streak across the night sky in fact.

Narad comment

We have a commenter, Narad, whose comment (see above) indicates that s/he has discovered that Dana George (according to George’s own LinkedIn Profile–see below) is in fact an employee of RMI.

Dana George stem cells

Wow.

Lesson?

Be careful of “independent” voices about for-profit stem cell clinics.

Verify whether they really are independent voices and lack major COIs.

Orac calls this behavior in the comments, “astroturfing”.

28 thoughts on “Stem cell clinic social media shenanigans exposed


  1. I moderate a stem cell clinical trails group on Linkedin and the question that is asked re these stories of miracles is where are the supporting data/images?. Specifically, when regeneration of nerves, cartilage or muscle is claimed, MRI images/data supporting these claims would help quiet the skeptics. That said, the images could also be doctored (pun intended).


  2. So Paul, Is this really big news? I can’t tell you the number of times I’ve read articles where sources aren’t vetted, disclosures not made. Why the constant criticism? Why don’t you take the time here to vet Orac?
    The smoking gun about Ms. George that you have presented states she is self employed. I know several writers who also do free lance work writing press releases for companies and other promotional pieces. So what?
    In this instance, she was making a comment on a blog, not writing a story. If you insist that she should have made disclosures, then why not insist that Orac should do the same as well as anyone else who commented on this “excellent post” as you describe it.
    Why don’t you contact Dr. Lopez and learn about his work? I know some time ago he invited you to visit his clinic or speak with him and got no response from you. Is there a reason you would not want to talk to him?


    • You mix multiple points together.

      I know exactly who Orac is and he is highly credible w/o conflicts of interest (COI) related to stem cell clinics in my opinion. I’m not sure why you are implying, as you seem to be, that Orac has a COI. If you do not have any facts in that regard, I would suggest that you do not imply it.

      The focus of my blog post was a real (rather than imagined or simply implied) instance of an undisclosed, direct COI about a stem cell clinic in my opinion. Undisclosed, direct COIs have the potential to be very harmful to patients and I would have thought that you’d take them more seriously than just “so what?” as your reaction. Also, just because some people more generally fail to make disclosures does not make it OK.

      I’d be happy to interview Dr. Lopez about RMI. Please have him contact me if he is interested.


    • I know several writers who also do free lance work writing press releases for companies and other promotional pieces.

      Ms. George is a bit more than that. She writes their blog and runs their Facebook page. (Their Twitter and YouTube accounts are moribund.) She is, to all appearances, in charge of their social-media presence.


      • Thanks for the info, Narad.
        More generally, stem cell ops frequently use more sophisticated, covert efforts to attract customers including paid patient testimonials, fake patients, embedding videos of legit, famous stem cell researchers on the clinic website even though the researcher has no connection to them, having anonymous identities attack critics on the Internet, and so forth. It’s a jungle out there.


        • having anonymous identities attack critics on the Internet

          Dana has been perfectly willing to attack Doug Sipp right on the RMI blog (making the offer of free transportation for a visit to someone that you’ve declared a liar a tad disingenuous) and, less obliquely, here, although there is little doubt the “truck driver” trope is sourced from the likes of sipper2.blogspot.com and sctmonitored.blogspot.com.

          Indeed, I’d be quite surprised if the Barbara posting here weren’t half of the Hanson-Richardson dubious-supplement operation SeaChange Therapeutics.


          • Narad – Can you please explain what is dubious about the SeaChange site that Ms. Richardson and I have? I’m not trying to hide anything whatsoever. We use our small webstore to support our forums. We do not market intensively and have never even taken a salary. It’s hardly a dubious operation unless you consider supplements in general to be dubious. Is there some reason for your comment or for you using the name Narad instead of identifying yourself more completely as you seem to be all about transparency.


  3. This is a formal invitation for Dr. Knoepfler to visit our program at the Regenerative Medicine Institute in Mexico this way he can personally verify that our claim that we are a fully complaint program is true. If necessary we can provide airline tickets for up to 2 persons from Sacramento to San Diego and back. This offer was also made to Mr. Doug Sipp several months a go, even though we did not get a response the offer still stands.


    • I also conveyed your invitation to Paul in October, 2012, however, it did not include 2 airline tickets. This seems like an offer that I hope Paul will take advantage of. I believe it would be very helpful to have him see what you do first hand rather than rely on someone like Orac who I am sure has never been to your clinic or reviewed your work. Orac’s statement that you do not even use stem cells is truly outrageous.


    • Thank you, Dr. Lopez, for the invitation. It’s very generous.
      Unfortunately rules dictate that I am not allowed to accept tickets.
      Would you be willing to do an email-based question and answer interview?


      • Dear Dr. Knoepfler, I understand your situation, I would love to sit down with you and share our experiences, as a matter of fact I will by UC Davis in the very near future and can make time to visit with you if at all possible.

        Sincerely,

        Dr. Lopez


  4. This whole back and forth about whether this clinic or doctor is on the up and up, whether the FDA does or doesn’t have patients best interest at heart, whether scientists, researchers, medical industry etc. has COI’s or not, is disheartening to patients to say the least. In the last 8mo. since I entered into this discussion, with the hopes of adding patient perspective to the dialogue, not one thing has changed. NO “gaps have been bridged” what I do see in relation to adult stem cells, is the immature bickering and finger pointing has gotten even worse! I feel like I’m watching a bunch of Jr. High kids in a school yard brawl. Maybe that’s the plan….get everybody to fight about it, point fingers at each other, confuse all the information, and then “the powers that be” can sit back LOL and say they “stalled this out all on their own!” Is this what professional behavior in the biological drug/science industry has been reduced to? Patients are suffering, while you all struggle to reach some kind of meeting of the minds. Do you think visiting the clinic in Mexico would help “bridge gaps?”


    • Completely agree Jennifer. The hard core stem cell scientists are aggravated by the use of the words ‘stem cells’ to describe these therapies as it implies regeneration rather then endogenous protection, which is a valid argument. There are animal studies which show these ‘stromal cell therapies’ to be beneficial to a wide range of diseases, not due to regeneration but due to immune and inflammatory regulation. There are no human clinical trials to say these therapies work in humans but equally no studies to say they don’t. The development of regulation of the industry is essential for ensuring the safety and efficacy of these treatments. As it seems many governments are not enforcing this regulation the industry needs to self regulate and ensure data based evidence collection through clinical trials. Willingness of the industry to self regulate would demonstrate their desire to run an ethical industry and protect their patients. Would also weed out the cowboys, which do infact exist in all industries….


      • Heather, you make some really good, common sense points in your comment. Any industry is going to have dangerous cowboys and even a single company can have a mixed record of doing good and bad things. One of my favorite companies, Apple, nonetheless has a very mixed record on outsourcing jobs and using questionable overseas operations. Can we admit that the stem cell field has many good citizens, but also some that highly questionable? I won’t mention the latter, but the former includes Mesoblast, Athersys, and NeuralStem just to mention three.

        However, I disagree with you on self-regulation. Just as the computer industry cannot self-regulate, neither can the stem cell industry. In fact, the stem cell field has already tried self-regulation and it hasn’t worked. The current organization, ICMS, which is in large part an effort at self-regulation, has shown that it cannot (at least without major change) handle the exploding stem cell industry. Outside the US, as you rightly indicate, other governments generally do a poor job of regulating the stem cell industry, but I see no indication that self-regulation will work there either.

        I want to stress how much overall I appreciate your comment even if we do not agree 100% on everything.


        • Thanks ‘admin’ ;)

          Unfortunately in countries like Australia self regulation seems to be the only way forward for MD’s using ‘medical exemption’ clauses. When I say the industry, in no way do I refer to the ‘stem cell’ industry. I myself am an embryonic stem cell researcher and oppose the use of the words ‘stem cells’ for these therapies. Though it is likely that stromal cell preparations contain stem cells there is no evidence to say ‘stem cell’ behaviour (self renewal or differentiation) contributes to therapies and definately no data of a regenerative nature based on stem cell integration.

          We are working together with Australian so called ‘stem cell’ clinics to develop self regulation. At least in Australia these clinics are investing their own money to ensure the development of clinical trials and harnessing of cowboys. While nothing is guaranteed lets agree that it is great news that our clinics are pursuing transparency and ethical practice and that it is worth trying self regulation, keeping in mind the failures thus far ;)


          • Hi Heather,
            Thanks for commenting and sharing your thoughts. In the long run both governmental and self-regulation together would bet he most effective in my opinion. There are no guarantees, but an important first step by commercial outfits is to make a good faith effort at protecting their patients and embracing transparency.


  5. The statement that Orac made, “Of course, EmCell is far from alone; it’s just one of the older and slicker “stem cell” clinics. There are many others, such as the Stem Cell Institute in Panama, the Bio-Cellular Research Organization in Ireland, the Regenerative Medicine Institute in Tijuana, among many others. Astute readers might have noticed that I use scare quotes when I discuss stem cells in the context of these clinics. That’s because it’s very much in doubt in most of these clinics whether what is being administered actually consists of stem cells. That’s where the need for regulation comes in most acutely. It’s also why what is going on in Italy right now is of great concern” does warrant a response from Dr. Lopez in my opinion.
    Paul calls it a “great probing piece”. How so? Where is there any proof whatsoever that RMI or other clinics’ treatments do not actually consist of stem cells? Orac pulled the idea out of thin air evidently or “probed” somewhere else that I won’t mention. Great research Orac! A statement like that would make me want to contact an attorney rather than offer someone 2 tickets and a visit to my clinic. Dr. Lopez, however, is someone who is very proud of the work he is doing. I know him and his invitation to Paul is genuine.
    Jennifer, You are right on about the filabustering and name calling that’s going on. It’s pathetic, childish and unprofessional.


  6. What surprises me most in the comments on this post from patients is that they cannot seem to bring themselves to say even one critical word about issues of clinic shenanigans that should be very troubling to patients such as behavior that one generously might call deceptive paid advertising in the guise of independent voices.

    How in the world can that be helpful to patients? It can’t.

    Calling people out for those kinds of actions is important and promotes transparency.


    • Absolutely clinical shenanigans would be very upsetting to me as a patient, but that has NOT been my experience. My patient experience is the only voice I have in this debate. I can’t speak to the fact that they go on in other clinics because I have NO direct knowledge of that. I expect that shenanigans DO go on in the stem cell clinical industry just like they do in any industry as you pointed out with your Apple example. You speak very vaguely on “deceptive paid advertising in guise of independent voices, and that NOT being helpful to patients” I agree 100%. You know fully well through our sharing of personal information with you that this is 100% NOT the case with Tracy and I. So for you even to slightly infer that we may be involved in something like this is taking a jab at already vulnerable patients. I’m all for transparency, but relating to each other in this manner is hurtful to say the least. ps for clarity’s sake, I DO think that their are patients out there that are paid by clinics to do recruiting using personal experience, but I can assure you Tracy and I are not involved a scenario like that. Would admin ever admit that there are clinics overseas that are doing an amazing job at offering cell therapy to “chronic no option patients” allowing them to come home and lead much improved lives with their families? Or does admin believe ALL overseas stem cells clinics harmful, and all improvements are placebo effect. I bet you don’t believe in total absolutes any more than I do.


    • Jeannine and I have called out numerous clinics on our SCP forum. Many patients only have the experience of dealing with one clinic. How would you expect them to evaluate others? Our forum encourages members to post about their experiences so others can learn from them. We do a fair share of calling out I believe. We also support good doctors. We have a section just for PR and company promotions which makes it quite clear that this is something emanating from the company itself and not an independent source. Even the ISSCR uses a PR firm. It’s common practice nowadays, but it can also be misleading to those that believe it is independent news.


  7. Paul,

    What surprises me most is as patients we cannot believe that you as a patient advocate will not recognize in any way shape or form the improvements that adult stem cell therapy has brought to our lives. We have never stood firm in support of one specific clinic. We stand firm on our own personal journey which has given us incredible life changing results. Why is this so hard to understand? It’s not about a specific clinic, it’s about being able to treat our own disease when all other options fail. The negative banter about “shenanigans” seems to be a smoke screen to deflect from the patients real life experience. After interacting for 8 months now, we have clearly not only been dismissed, but made to be invisible. Very disheartening! Where is your transparency? Do you only advocate for patients who hold your identical views? Bottom line, people have and continue to see health improvements by the very clinics you condemn. Academic opinion and patient experience do not add up. Why can we not bridge a single gap?


  8. Paul,
    Your zeal to relentlessly focus on criticizing every single overseas clinic or countries moving quicker than the US in a blanket statement as being harmful, unproven and avoided is really unscientific and non-evidence based. Then you go further in accusing patients that never criticize overseas clinics as being promoters or beneficiaries of these clinics. You’re really missing the point of patients’ prime objective in the U.S. – we want the rights to our own stem cells. It is really simple. We want the rights as patients to be treated here in the U.S., and we want the stem cell treatments here as medical procedures like thousands of other more venturesome medical treatments regulated by state medical boards. Yes, in your mind it is all unproven and unsafe; however evidence and publications would prove otherwise.
    Who really has more of an objective to promote or protect something? When was that last time you defended the practice of any overseas clinic as being legit? You will not even take the invitation, because you would hate to find yourself in a position that contradicts your beliefs. Take the trip, and come back with your findings. I would love to hear your feedback.


      • No Paul, like I said, based on your actions, you already have made up your mind regardless of any proof presented. However, with that being said, I will try to convey your message to the 30,000+ patients that have taken the so called, “harmful, unproven, and life threatening treatments.” Besides, I asked you first a very long time ago to show us publications on autologous stem cells done properly being harmful, and I am still waiting?
        Oh that is right, because it is a drug – you must prove first that it is not harmful. It is like being guilty first then proven innocent. You’re a researcher and not a medical doctor, so your research protocol does not take into account the terminally ill, the suffering, and disabled. My argument still remains – I will not justify stem cells in our own bodies being categorized as a drug. It is like fitting a square peg into a round hole – it is ridiculous. Again, patients want the rights to their own stem cells, and they do not want the limitations to being treated overseas. The drug category shoves them into that direction. They want it here in the U.S. as medical procedure compared to the thousands of more venturesome medical procedures that seem to work fine under the medical state board regulations.


        • Albert, you said “Besides, I asked you first a very long time ago to show us publications on autologous stem cells done properly being harmful, and I am still waiting?” but you miss the point entirely.

          When someone is selling a new biomedical technique like non-compliant stem cell interventions to patients, it is the seller who must prove it is safe. They should do this BEFORE selling it to patients. It is not up to the concerned citizens such as me to prove it is unsafe.

          You’ve got it backwards.


        • I see your point Albert but as researchers we want evidence. If you have treated over 30,000 people you have made a lot of money! All we ask for is a clinical trial. Regardless of drug or cells, without the clinical trial you may as well be selling homeopathy…..but homeopathy does work for some people ;) It astounds me the number of people that pay for ‘unproven’ treatments. This is a desperation that we as researchers do not face every day so can not begin to understand but yes, as you suggest, we need to understand this and ‘together’ address the problem. The problem with your ‘guilty’ status is that you guys are the only ones who can prove yourself innocent (clinical trial) but with the thousands of people being treated around the world it has not been done yet? The only reason this one slipped through in Australia at least is because of the medical exemption but as a medical doctor you have equal responsibility as a researcher to prove the efficacy of treatments for you patients whether provided at free or cost. I wish you all the best in moving this forwards :)


  9. Paul – I see you’re spreading your nastiness once again. I grow tired of your negativity toward what Barb and I do for ZERO pay. We have probably helped more people in one month than you have in your entire life as a curmudgeon-ny pessimist about stem cells. I figure everyone I knew who had COPD and didn’t get stem cell treatments are now DEAD while I am better now than I was 4 years ago. What else could be the reason?
    If you feel the need to disprove the treatments that is one thing but to continue to accuse Barbara and I of nefarious practices without a “single iota” of proof other than what you invent in your own mind has gone on long enough. Besides, what business is it of yours if we sell supplements and make a million dollars?

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