Advice on stem cell therapy for Multiple Sclerosis at Russian clinic
August 17, 2016 3:36 PM Subscribe
A family member who has recently been diagnosed with Primary Progressive MS is interested in Mesenchymal Stem Cell Therapy at a specific clinic in Moscow. Can you advise me about whether this is a good idea?
I won't give the name of the clinic here, but MeMail me if you would like to know it (you may be able to find it online, but please don’t post it here if so). He's been in touch with them by email and has been offered the following 12-day treatment programme at a cost of 25,000 Euros (I've cut the descriptions down):
Heavy metals test.
Hormonal, immunological, inflammation, vitamins and minerals test.
Neuro-metabolic protocols for restoration myelination of nervous fibers.
NeuroMicroNutritional Protocols for antioxidants, amino acids, minerals, vitamins, cytokines, interleukins and growth factors.
Chelation therapy, depending on the result of the heavy metals test.
Deep detoxification.
Intravenous laser and oxygen blood therapy.
Physiotherapy, magnetic field therapy, acupuncture, reflex therapy.
Natural medications.
Special activated Autologous Mesenchymal (bone marrow-derived) Stem Cells Therapy.
Special activated Autologous adipose tissue-derived Stromal Vascular Fraction (includes Mesenchymal stem cells) Therapy.
Umbilical cord-derived stem cells injected intravenously.
Six months' aftercare.
A number of things about this concern me, such as chelation and detoxification, for which I don’t think there is any evidence that they help MS; use of jargon which may not mean much (eg NeuroMicroNutritional Protocols); and the evidence to support stem cell therapy for MS, particularly for Primary Progressive MS, seems meagre at the moment (see MS Society notes); and the clinic has not seen or assessed him before setting out a draft treatment programme.
I am also concerned that the document we have had minimises safety and side effects: "stem cells therapy in [our] Clinics are absolutely safe with no risk of allergic reaction, infections, cancer transformation, incompatibility and rejections". And I wonder if the quoted cost may not turn out to cover everything; and I can't find the specific doctor's name anywhere online, which may mean something or nothing at all.
My family member has requested and been given some data held by the clinic on numbers of patients treated and the success rate (given as 85%+). We plan to ask further questions such as where the clinic is accredited or registered. My family member has mentioned the possibility of stem cell treatment to his UK treatment team, who were apparently non-committal. We hope to be able to explore their views further.
I'm worried I may be being overly negative about this course of treatment. MeFites, what do you think? I guess there are two questions - whether there is evidence that the treatment could help, and whether there is likely to be any danger in the treatment.
Thanks for your help.
I won't give the name of the clinic here, but MeMail me if you would like to know it (you may be able to find it online, but please don’t post it here if so). He's been in touch with them by email and has been offered the following 12-day treatment programme at a cost of 25,000 Euros (I've cut the descriptions down):
Heavy metals test.
Hormonal, immunological, inflammation, vitamins and minerals test.
Neuro-metabolic protocols for restoration myelination of nervous fibers.
NeuroMicroNutritional Protocols for antioxidants, amino acids, minerals, vitamins, cytokines, interleukins and growth factors.
Chelation therapy, depending on the result of the heavy metals test.
Deep detoxification.
Intravenous laser and oxygen blood therapy.
Physiotherapy, magnetic field therapy, acupuncture, reflex therapy.
Natural medications.
Special activated Autologous Mesenchymal (bone marrow-derived) Stem Cells Therapy.
Special activated Autologous adipose tissue-derived Stromal Vascular Fraction (includes Mesenchymal stem cells) Therapy.
Umbilical cord-derived stem cells injected intravenously.
Six months' aftercare.
A number of things about this concern me, such as chelation and detoxification, for which I don’t think there is any evidence that they help MS; use of jargon which may not mean much (eg NeuroMicroNutritional Protocols); and the evidence to support stem cell therapy for MS, particularly for Primary Progressive MS, seems meagre at the moment (see MS Society notes); and the clinic has not seen or assessed him before setting out a draft treatment programme.
I am also concerned that the document we have had minimises safety and side effects: "stem cells therapy in [our] Clinics are absolutely safe with no risk of allergic reaction, infections, cancer transformation, incompatibility and rejections". And I wonder if the quoted cost may not turn out to cover everything; and I can't find the specific doctor's name anywhere online, which may mean something or nothing at all.
My family member has requested and been given some data held by the clinic on numbers of patients treated and the success rate (given as 85%+). We plan to ask further questions such as where the clinic is accredited or registered. My family member has mentioned the possibility of stem cell treatment to his UK treatment team, who were apparently non-committal. We hope to be able to explore their views further.
I'm worried I may be being overly negative about this course of treatment. MeFites, what do you think? I guess there are two questions - whether there is evidence that the treatment could help, and whether there is likely to be any danger in the treatment.
Thanks for your help.
I can't say much about your family member's particular situation, but I can offer one small tidbit of information; a family member of mine did a stem cell procedure here in the US (two, in fact, with two different clinics) for pain. In each case the clinic used the person's own stem cells. The first procedure harvested stem cells from the bone marrow in the hip. The second procedure somehow harvested stem cells from fat tissue. If that is the case in the procedure that your loved one is doing, at least they don't run a risk of disease transmission.
The reason my family member did the procedure was for help with back pain. The first procedure brought them to about 70% pain relief. The second procedure, a couple of years later, brought them to 100% relief from pain. So, anecdotally, it worked. But again, it was for a significantly different ailment.
posted by vignettist at 3:55 PM on August 17, 2016
The reason my family member did the procedure was for help with back pain. The first procedure brought them to about 70% pain relief. The second procedure, a couple of years later, brought them to 100% relief from pain. So, anecdotally, it worked. But again, it was for a significantly different ailment.
posted by vignettist at 3:55 PM on August 17, 2016
Oh and costwise; in California the procedure (a one day, out patient procedure in a surgical center) would have cost $10K. In Texas it was $4K. In Utah it was $3K. And of course all out of pocket, as it is still considered experimental.
posted by vignettist at 3:58 PM on August 17, 2016
posted by vignettist at 3:58 PM on August 17, 2016
Good rule of thumb: anyone advocating for chelation therapy for anything other than actual heavy metal poisoning is a lying liar who lies. It would not surprise me if the clinic uses a provoked urine sample to "prove" that your family member has elevated levels of "toxins" in their blood that can only be removed by chelation. (Which is both expensive and dangerous.)
On that note, anyone talking very generally about "toxins" without identifying the specific substances at play is likely also a snake oil peddler looking to turn a profit.
posted by ActionPopulated at 4:50 PM on August 17, 2016 [21 favorites]
On that note, anyone talking very generally about "toxins" without identifying the specific substances at play is likely also a snake oil peddler looking to turn a profit.
posted by ActionPopulated at 4:50 PM on August 17, 2016 [21 favorites]
The plan for your relative's treatment is all complete garbage. It won't help anything. It might hurt your relative in unpredictable ways, yes. My mother narrowly escaped major harm (to the tune of heart and kidney damage) when she went to a practitioner like this. Her general practitioner had a meltdown when he realized what she was doing - it was that dangerous and useless.
You're not "being negative", you're just correct that it's all sketchy nonsense. But there's likely nothing you can to do talk them out of it.
posted by Coatlicue at 4:53 PM on August 17, 2016 [10 favorites]
You're not "being negative", you're just correct that it's all sketchy nonsense. But there's likely nothing you can to do talk them out of it.
posted by Coatlicue at 4:53 PM on August 17, 2016 [10 favorites]
I do stem cell research and this sounds like utter bullshit.
posted by grouse at 5:01 PM on August 17, 2016 [36 favorites]
posted by grouse at 5:01 PM on August 17, 2016 [36 favorites]
I guess there are two questions - whether there is evidence that the treatment could help, and whether there is likely to be any danger in the treatment.
http://www.ncbi.nlm.nih.gov/pubmed/23906103
It is possible chelation could help. I think the stem cell stuff is crazy talk. Chelation can be dangerous, but I have first hand experience and can direct you to good sources of information, if you are interested. It is possible to do it a lot more cheaply than what this clinic is talking about charging. If it were my relative, I would redirect them to a safer chelation path to divert them from this clinic.
Really sick people get desperate. Sick people who are told there is no hope become willing to do suicidally stupid things because if it kills them, at least their suffering is over. But, then, it may not kill them, per the article in the first answer, which was also discussed on the blue. It may just make things worse.
Your relative is clearly grasping at straws. If you just rain on their parade, the odds are good that not only will they not listen to you, but they will just stop discussing things with you. The more isolated they become with their desperation, the more vulnerable they become to snake oil salesmen.
So, I suggest you try to help them find some sane alternative therapy. This is not it. Being genuinely supportive of their desire to find some kind of hope is the best way to stay involved so they don't just go off the deep end, with no brakes on their choices.
There are a lot of snake oil salesman in this space. But there are also valid chelation protocols that do help some people.
posted by Michele in California at 6:16 PM on August 17, 2016 [1 favorite]
http://www.ncbi.nlm.nih.gov/pubmed/23906103
It is possible chelation could help. I think the stem cell stuff is crazy talk. Chelation can be dangerous, but I have first hand experience and can direct you to good sources of information, if you are interested. It is possible to do it a lot more cheaply than what this clinic is talking about charging. If it were my relative, I would redirect them to a safer chelation path to divert them from this clinic.
Really sick people get desperate. Sick people who are told there is no hope become willing to do suicidally stupid things because if it kills them, at least their suffering is over. But, then, it may not kill them, per the article in the first answer, which was also discussed on the blue. It may just make things worse.
Your relative is clearly grasping at straws. If you just rain on their parade, the odds are good that not only will they not listen to you, but they will just stop discussing things with you. The more isolated they become with their desperation, the more vulnerable they become to snake oil salesmen.
So, I suggest you try to help them find some sane alternative therapy. This is not it. Being genuinely supportive of their desire to find some kind of hope is the best way to stay involved so they don't just go off the deep end, with no brakes on their choices.
There are a lot of snake oil salesman in this space. But there are also valid chelation protocols that do help some people.
posted by Michele in California at 6:16 PM on August 17, 2016 [1 favorite]
But there are also valid chelation protocols that do help some people.
There is no valid use of chelation for multiple sclerosis because there is no evidence of any level of quality that chelation is effective against multiple sclerosis. And yes, it can be dangerous. "Deaths Associated with Hypocalcemia from Chelation Therapy --- Texas, Pennsylvania, and Oregon, 2003--2005" from the CDC's Morbidity and Mortality Weekly Report (MMWR) describes a few cases where chelation probably killed patients.
posted by grouse at 6:41 PM on August 17, 2016 [13 favorites]
There is no valid use of chelation for multiple sclerosis because there is no evidence of any level of quality that chelation is effective against multiple sclerosis. And yes, it can be dangerous. "Deaths Associated with Hypocalcemia from Chelation Therapy --- Texas, Pennsylvania, and Oregon, 2003--2005" from the CDC's Morbidity and Mortality Weekly Report (MMWR) describes a few cases where chelation probably killed patients.
posted by grouse at 6:41 PM on August 17, 2016 [13 favorites]
On behalf of all neuroscientists, I am sorry to say that we cannot remyelinate, or perform 'restorative myelination', on demand. It doesn't exist. If we could, there would be no MS.
But instead, there is all this BS from people who prey on the sick, using BMs (big medicalisms).
Nope out.
posted by Dashy at 7:01 PM on August 17, 2016 [16 favorites]
But instead, there is all this BS from people who prey on the sick, using BMs (big medicalisms).
Nope out.
posted by Dashy at 7:01 PM on August 17, 2016 [16 favorites]
stem cells therapy in [our] Clinics are absolutely safe with no risk
Literally nothing is absolutely safe. I would be extremely wary of anyone trying to claim a therapy is absolutely safe, because they're almost certainly lying.
posted by BungaDunga at 7:10 PM on August 17, 2016 [7 favorites]
Literally nothing is absolutely safe. I would be extremely wary of anyone trying to claim a therapy is absolutely safe, because they're almost certainly lying.
posted by BungaDunga at 7:10 PM on August 17, 2016 [7 favorites]
I am just here to Nth that the only proven effect of these treatments is death. I've had multiple doctors at highly ranked hospitals go out of their way to tell me these treatments kill. And I wasn't asking about them. There is no evidence that they work. Our knowledge isn't good enough to get them to work. And I really desperately want them to work so that my family member doesn't have to suffer.
posted by Kalmya at 7:18 PM on August 17, 2016 [2 favorites]
posted by Kalmya at 7:18 PM on August 17, 2016 [2 favorites]
If there were effective treatments for MS they would be available here in the United States. There is no medical conspiracy to keep a cure hidden. Any treatment that is useful and scientifically proven your relative could get here. Traveling to some unproven treatment is just a scam.
posted by MsMolly at 8:19 PM on August 17, 2016 [2 favorites]
posted by MsMolly at 8:19 PM on August 17, 2016 [2 favorites]
I know of someone through an online forum (not related to MS) who has been on TV here in Australia about having has success with HSCT for Multiple Sclerosis with treatment in Moscow. I don't know if the treatment you're referring to here is that. If you want details, I can see if I can put you in touch if you MeMail me.
posted by ryanbryan at 8:35 PM on August 17, 2016
posted by ryanbryan at 8:35 PM on August 17, 2016
The aggressive stem cell therapy for MS that the medical world is buzzing about involves serious chemo and is NOT what this clinic is offering. Listen, my husband owns a bone-marrow derived stem cell business. This is not a recognized use. The surgeons he works with do LOTS of interesting stuff with bone marrow(that shit is A-Maz-Ing) but MS isn't on the program. This clinic is a scam preying on your relative's fear and desperation.
Husband says: The goal behind any autologous HSCT for MS is to reset the immune system and stop the inflammation that contributes to active relapsing MS. The patient would have to be at the hospital with zero immune function (chemo) and use autologous cells that are culture expanded. There was/is a multi centered 5yr trial (in the US) called HALT MS study. They tested 25 people with active MS that was not controlled by disease modifying medications (funded by NIH) results were presented 6/2016 and suggest that after 5 years 69% percent success rate. Basically it is stem cell transplantation for MS.
posted by PorcineWithMe at 9:15 PM on August 17, 2016 [1 favorite]
Husband says: The goal behind any autologous HSCT for MS is to reset the immune system and stop the inflammation that contributes to active relapsing MS. The patient would have to be at the hospital with zero immune function (chemo) and use autologous cells that are culture expanded. There was/is a multi centered 5yr trial (in the US) called HALT MS study. They tested 25 people with active MS that was not controlled by disease modifying medications (funded by NIH) results were presented 6/2016 and suggest that after 5 years 69% percent success rate. Basically it is stem cell transplantation for MS.
posted by PorcineWithMe at 9:15 PM on August 17, 2016 [1 favorite]
This is not medicine, these are not medical treatments. This is woo specifically designed to prey on people at their most vulnerable and desperate. At best, clinics like this divert resources from evidence-based treatments which have some hope of helping, at worst they do direct harm with their treatments.
The fact that your family member is thinking about giving money to these charlatans shows that they must be really scared and worried about their future. Give support to that for sure. But don't support this clinic or similar, because it's not going to give your family member what they need.
posted by shelleycat at 9:57 PM on August 17, 2016 [3 favorites]
The fact that your family member is thinking about giving money to these charlatans shows that they must be really scared and worried about their future. Give support to that for sure. But don't support this clinic or similar, because it's not going to give your family member what they need.
posted by shelleycat at 9:57 PM on August 17, 2016 [3 favorites]
Have your family member read that NYT article. Sometimes a scary counternarrative (and that one is pure body horror) can get through when panic and desperation have shut down the ability to be rational.
posted by praemunire at 11:01 PM on August 17, 2016
posted by praemunire at 11:01 PM on August 17, 2016
If there were effective treatments for MS they would be available here in the United States... Any treatment that is useful and scientifically proven your relative could get here.
That is absolutely not true and a really bad metric to use when evaluating protocols. New treatments are pioneered in other countries all the time. As an example, my uncle lost 30% of his vision to glaucoma over 10 years. My uncle is a medical researcher in the US. His husband is a doctor. These are not people who are suckers. They have the best possible insurance, access to glaucoma specialists on demand, and access to every low vision service you could wish for.
3 years ago, he started travelling to a university hospital in Berlin every 3 months for a treatment not available in the US, and that treatment has successfully halted the progression of his disease.
However, in the case of the OP, everything promised is transparently bullshit that holds up to no scrutiny at all.
posted by DarlingBri at 5:05 AM on August 18, 2016 [3 favorites]
That is absolutely not true and a really bad metric to use when evaluating protocols. New treatments are pioneered in other countries all the time. As an example, my uncle lost 30% of his vision to glaucoma over 10 years. My uncle is a medical researcher in the US. His husband is a doctor. These are not people who are suckers. They have the best possible insurance, access to glaucoma specialists on demand, and access to every low vision service you could wish for.
3 years ago, he started travelling to a university hospital in Berlin every 3 months for a treatment not available in the US, and that treatment has successfully halted the progression of his disease.
However, in the case of the OP, everything promised is transparently bullshit that holds up to no scrutiny at all.
posted by DarlingBri at 5:05 AM on August 18, 2016 [3 favorites]
Literally nothing is absolutely safe. I would be extremely wary of anyone trying to claim a therapy is absolutely safe, because they're almost certainly lying.
Yes. I recent had a teensy mile removed, a procedure which took literally five minutes and required s single stitch, and even they gave me a big rundown of all the bad things that could happen but probably wouldn't.
posted by showbiz_liz at 7:26 AM on August 18, 2016 [1 favorite]
Yes. I recent had a teensy mile removed, a procedure which took literally five minutes and required s single stitch, and even they gave me a big rundown of all the bad things that could happen but probably wouldn't.
posted by showbiz_liz at 7:26 AM on August 18, 2016 [1 favorite]
Response by poster: Thank you all. I really appreciate your answers - they have helped me respond to my family member. It was particularly helpful where people explained in what ways the treatment plan seems sketchy, so that I could pass on the detail. It was also helpful to have the reminder that we do need to try to make some other suggestions rather than just dismissing this option and therefore giving my family member no hope at all.
posted by paduasoy at 3:46 PM on August 21, 2016 [2 favorites]
posted by paduasoy at 3:46 PM on August 21, 2016 [2 favorites]
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