Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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MS "cured'

Discussion in 'Other Health News and Research' started by ScottTriGuy, Dec 18, 2015.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    http://www.ottawacitizen.com/health/Health/8189161/story.html

    A team of Ottawa doctors is preparing to publish a full report on its breakthrough multiple sclerosis treatment study that has so far eliminated the disease in those treated.
    The experimental study began about 13 years ago as a last resort for patients who fail to improve on drug therapy and who suffer severe symptoms of MS. Snippets of the results have been published “here and there,” said, neurologist Dr. Mark Freedman, one of the leads of the program at The Ottawa Hospital, but its never been published in its entirety.

    No specific date has been set for its release, but the team’s findings are far from secret. With MS not returning in any of the 24 participants, patient success stories appear in news media across the country. Since the original study’s completion, about another dozen patients have been treated with all of them showing the same results.

    Eliminating MS completely and watching patients improve surprised both Freedman and Dr. Harold Atkins, a bone-marrow transplant expert, who started the study. The two originally set out to monitor the development of the disease and find a way to treat it. Their theory was this: Wipe out the entire immune system, reboot it with a transplant of the patient’s own bone marrow and wait for MS to regenerate.

    “We thought we might be able to intercept one of the signals that initiates the disease and that would then give us a clue on how to treat it,” Freedman said. He jokes that they “had, in effect, failed because the disease never came back. No one expected to see zero disease activity after the transplant.”
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A friend was in a similar study done at MD Anderson. I think that there were 20 subjects. My friend and the others also had a great outcome that lasted for about 5 years....but then this last year the MS symptoms came back.
     
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  3. alex3619

    alex3619 Senior Member

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    I have been talking about these studies for years. I think there is an old thread on this. I recall there was a huge death rate though, a reason they were not keen to push this too hard at the time.
     
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  4. Kati

    Kati Patient in training

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    This group was about to be published some 2years ago. i know because I emailed my doc about it at that time.

    The mortality rate for autologous stem cell transplant is about 5%, or at least was when I worked last in the field. It is not negligible, indeed. The cost for this procedure, in America would tally over 100 grands, easily.
     
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  5. msf

    msf Senior Member

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    Hopefully now that they know how to get rid of MS they can come up with less dangerous ways to achieve the same end.
     
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  6. Jammy88

    Jammy88 Senior Member

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    :(

    Has at least the disease activity level diminished ?
     
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He had improvement and no progression at all for about 5 years. Now it seems to be active again and he is seeking more experimental treatment. I posted a video he made about his initial success here--sometime back.
     
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  8. viggster

    viggster Senior Member

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    High-dose chemotherapy + bone marrow rescue (transplant) is being studied at U of Washington, Northwestern, and in Israel. Patients have been traveling to get the procedure in Russia and elsewhere. Early results look good for people with secondary progressive MS but the procedure is grueling and there is something like a 1% death rate. It is also expensive.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  10. Jammy88

    Jammy88 Senior Member

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    I would be down to risk death… I wouldn't care. This might also be kind of a cure for CFS, too - given that MS and CFS are pretty similar.
     
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  11. cph13

    cph13 Senior Member

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    Ya just gotta keep pluggin' away.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, he won this battle--which is totally great. But his MS is relapsing again. :(
     
  13. Kati

    Kati Patient in training

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    There is also long term risks of cancers from the high dose chemo. It is not benign.
     
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  14. anciendaze

    anciendaze Senior Member

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    It isn't always necessary to destroy the entire immune system, which certainly gets rid of misbehaving immune cells. There is also Michael Pender's work on adoptive immunotherapy targeting very specific classes of immune cells. This has less serious problems, if done correctly, but requires a better understanding of what you are doing.

    The "bigger hammer" approach of replacing an entire immune system is merely proof that something is wrong with some part of that system, not exactly late-breaking news. Adoptive immunotherapy is a much more precise targeting, but won't be widely available for most patients until we have a better idea of what is going on in the cells targeted. (Any millionaires with MS might be interested in trying this approach now. There is some risk, but current treatments are also risky. So is leaving the disease untreated.)

    What seems obvious to me is that we now have the chance for far more meaningful research than just randomly trying to damage immune systems, or large portions of them, as we have been doing. Adoptive immunotherapy removes immune cells from patients, then stimulates them in vitro and cultures the ones desired to perform precise tasks when returned to the patient. Using flow cytometry to sort cells is part of the process. At this stage we can't guarantee that the approach will work, but it is less likely to kill patients. This also means there will be samples of sorted cells available for research on exactly what was going on in those targeted cells when the procedure is successful.

    This offers a potentially unique insight into fundamental immunology as well as giving research patients a chance at a cure from a life-threatening disease. In some types of cancer adoptive immunotherapy has worked like magic. I'm at a loss to explain why this approach remains obscure, while a risky "bigger hammer" gets widespread publicity, and standard practice is often described as "worse than the disease" for mild cases.

    Perhaps the problem is that the targeted immune cells in a number of examples are infected with EBV. In that case we have the usual official concerns about setting off a panic concerning a virus which infects about 95% of adults. I'm not convinced that all EBV is created equal, even after accounting for major strains. It would be handy to know what is different about pathological cases. In the case of HPV and cervical cancer you can show that over 80 strains do not cause cancer, which is a long way from showing that HPV is harmless.
     
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  15. cph13

    cph13 Senior Member

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    He is such an inspiration. I am sorry to hear that he is relapsing.
     
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