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So difficult to find results from Stem Cell trials !!

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    So difficult to find results from Stem Cell trials !!

    Why is it so difficult to find the particulars and results from Dr. Burt's and Dr. Sadiq's stem cell trials?
    I have been trying and searching for many years. I have read some interviews with both of these researchers but I haven't ever seen a breakdown of patient age, sex and occupation, etc. And there is precious little information on the various outcomes. I am frustrated and agitated. If these trials are done with public funds, shouldn't the results be 'open' to all of the public ?

    #2
    Were they long-term trials? Maybe they aren't completed yet?

    Originally posted by JerryD View Post
    Why is it so difficult to find the particulars and results from Dr. Burt's and Dr. Sadiq's stem cell trials?
    I have been trying and searching for many years. I have read some interviews with both of these researchers but I haven't ever seen a breakdown of patient age, sex and occupation, etc. And there is precious little information on the various outcomes. I am frustrated and agitated. If these trials are done with public funds, shouldn't the results be 'open' to all of the public ?

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      #3
      Is this the one?

      https://www.nationalmssociety.org/Ab...-Marrow-Stem-C

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        #4
        The stem cell direction was one piece of hope we had. It seems studies have not been conclusive so nothing is released. I am no expert but that is what I am gathering.

        What has occurred to me lately is that there really must be a virus involved with this illness. The Epstein-Barr virus in particular.

        Since 1980 we have made HIV almost a non issue there have been so many strides in it. If we can make such progress on one illness in such a short amount of time why is no one even seeking a cure or preventative vaccine for MS? It feels like we donít count or there is this myth that everyone is living this wonderful life because we have DMDs. The worst is that they can say MS isnít fatal so there is no reason to seek a cure. We have been marginalized for too long. Itís time to speak out, write letters, write op-eds and tell everyone in our communities. We have such a short time before we are too incapacitated to be effective. I say, Go for it!

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          #5
          Originally posted by palmtree View Post
          The stem cell direction was one piece of hope we had. It seems studies have not been conclusive so nothing is released. I am no expert but that is what I am gathering.

          What has occurred to me lately is that there really must be a virus involved with this illness. The Epstein-Barr virus in particular.
          Yes, if there had been a homerun the data wouldn't be difficult to find. I have read about EBV but what I don't understand is how can the EBV be a significant implication if 90% of the adult population is estimated to have it?

          Originally posted by palmtree View Post
          It feels like we donít count or there is this myth that everyone is living this wonderful life because we have DMDs. The worst is that they can say MS isnít fatal so there is no reason to seek a cure. We have been marginalized for too long. Itís time to speak out, write letters, write op-eds and tell everyone in our communities. We have such a short time before we are too incapacitated to be effective. I say, Go for it!
          I suspect our own "positive attitudes" have been a hindrance as well as a protective factor. If we are all doing so fine and dandy why would they need to spend money on advances?

          Also what about the genetic implications? Sheesh it seemed as if there was progress in that direction yet lately that has fallen by the wayside. I suspect they are back to telling us to just go ahead and have babies without any consideration of the increased odds of passing this miserable disease along.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

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            #6
            Originally posted by Jules A View Post
            ... I have read about EBV but what I don't understand is how can the EBV be a significant implication if 90% of the adult population is estimated to have it?
            Craig Venter, a prominent researcher involved with the human genome project once stated that the human body kills about 10,000 cancer cells a day. Likely, virtually everyone has cancer cells just as almost everyone has EBV. Although most have both, not everyone gets cancer nor does everyone get MS from EBV, but some do.

            Michael Pender, a researcher in Australia says that people get MS because they have EBV but their bodies do not produce enough killer (CD8) T cells to diminish EBV infected B (CD20) lymphocytes.

            So, Pender took blood from MSers, treated it to enhance the killer T cells, and reinfused it back into the MSers. This treatment has been highly successful in each patient whose B lymphocytes reacted properly to the reinfused T cells. In patients where B cell reactivity was only 1%, there was no response to treatment. But in those whose B cells were affected the response was dramatic improvement.

            Pender is working on why there was not sufficient reactivity in some of his patients. However, for those with B cell reactivity of up to 48%, the results are just amazing. This, or a similar treatment will someday be seen as a cure for MS, IMHO, because it treats the cause for MS.

            Not everyone at the beach for 6 hours on a sunny day gets sunburned; but some may depending on various factors, protection, genetics, etc. Not everyone with cancer cells develops cancer. So yes, I agree with researchers who believe EBV is the cause of MS, even though not everyone with EBV develops MS, in fact, not many do relative to the number with EBV.

            Pender's research has lead to a 60 person trial which is currently recruiting in Philadelphia, Huston, Baton Rouge, and Scottsdale, AZ in the US and 3 locations in Australia that I will soon post about in the Charcot Project thread. I will post about it there because the Charcot Project thread is about the hypothesis of a virus causing the cascade of events which ends up being multiple sclerosis.

            I believe the cause and cure for MS is presently unfolding before our eyes.
            Last edited by Seasha; 04-04-2019, 05:16 PM. Reason: per OP request

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              #7
              There are various genome projects going on as well. I remember reading about one in Ireland last year. They were hoping that since their population is a lot more homogenous than the US, Canada,England and Scotland, that it may help focus in quicker and eliminate extraneous factors that a more heterogenous population would introduce. Hope they are right!
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Hello Jerry!

                Here is an informative post about stem cells. If you click the link and read the article PLEASE do keep scrolling down and read the comments because they contain more worthwhile info.

                STEM CELL THERAPIES FOR MS Ė WHY WE NEED TO GET IT RIGHT
                By Niall MacDougall
                https://multiple-sclerosis-research....-get-it-right/


                Also, I want to mention something which may prove important to anyone who may consider stem cell treatment as possible in their future.

                Please let your neuro know about your interest because he/she will very likely caution you that using Ocrevus, Rituximab, or Lemtrada before having stem cell treatment later appears to add a great deal of additional risk to the procedure and few, if any, legitimate doctors and facilities will do stem cell treatment after someone has used any of those 3 drugs, IMO.

                Be sure to talk about it with your neuro before going on those drugs if you think stem cell treatment MAY be in your future someday.

                Best wishes!

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