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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Stem Cell Therapy

Discussion in 'General ME/CFS Discussion' started by Tbug, Sep 11, 2016.

  1. Tbug

    Tbug

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    I've only just joined this group. I've had CFS since 2003 diagnosis. 13 yrs. I've was bedridden in the beginning but now able to do a lot of things if I plan carefully and rest after. I'm still very much in an all our nothing predicament but I'd assume that's more to do with my personality. I throw myself into everything then crash.
    I'm considering my own stem cell transplant later this year. I'm in Sydney Australia it will cost 11000 to remove and store and initial implant. Then 1000 every 3 months up to 8 times after as necessary.
    Does anyone have any feedback on stem cell?
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I do not personally have feedback re: stem cells but am tagging two people who have some knowledge on this issue and hope they do not mind @trickthefox and @Justin30.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    If you do searches here you will find a lot on patients' experience with this. A few years ago Dr. Cheney was taking groups of patients to a hospital in Panama where they received infusions of their own stem cells. Most initially had improvements, but, as I remember, they all regressed after a few months. Some went back for multiple infusions but still finally regressed. I don't think anyone had as many as 8 infusions, so who knows! Good luck with this.
     
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  4. cman89

    cman89 Senior Member

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    Stem cells to treat what? Blood plasma? Injection into muscle? Nerves???
     
  5. cman89

    cman89 Senior Member

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    I have heard of this used for MS treatment with success.....of course, thats not ME, but sometimes those things parallel.
     
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  6. Justin30

    Justin30 Senior Member

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    Ive done quite a bit of research and have heard many mixed reviews in this treatment for ME.

    I think Chenney brought down 40 patients or more with only 1 to 2 recieving long term benefit from the treament.

    I know of a few others that have had short term benefit from it.

    My interest in stems cells is associated to neurnal stem cells and Induced Plurepotent stem cells or IPSCs.

    They have never been used in ME but if you think that ME is a true Limbic Encephalopathy like Dr Jay Golstein and Dr Byron Hyde than the stem cells I mentioned may be a viable treatment in the future.

    Im not a Dr so just my 2 cents. And because we dont know what ME is its hard to say.

    Some Drs are using AST cells in patients with POTS or Dyautonomia.
     
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  7. IreneF

    IreneF Senior Member

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    I was just reading about the risk of cancer and cancer-like growths from stem cell therapy. You don't know where these cells will end up.
     
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  8. Justin30

    Justin30 Senior Member

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    Yes I have read about this as well.

    This area of research seems to need more funding.

    It is such a promising treatment methodology and I truly think that it really needs to be expanded into many diseases and tested. Especially those with substantial quality of life impacts.

    These stem cells have been around for years and yet so little it seems gets used or experimented with. The funding just doesnt seem to be there.

    Wish there were more clinical trials and use in patients suffering from grave illness.
     
  9. IreneF

    IreneF Senior Member

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    Stem cell therapy has been oversold. The researchers always want more money, so they say things like, "This has the potential to cure [horrible-disease-no-one-wants-to-get]." What people hear is, "This will cure my disease." Plus there was all the hoo-haw about embryonic stem cells during the Bush administration here in the US, so researchers had to puff it up as much as possible. Not that I blame them.

    The stem cell clinics are usually in countries that have lax regulatory oversight. I think there have been some treatments here--or maybe just trials--but the problem of cells occasionally getting out of control once they are in the body has not been solved.
     
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  10. Justin30

    Justin30 Senior Member

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    Whats being talked about now in the field seems to be specific cells developed to heal the damaged parts of the body for example neurnal stem cells that only work on dopamine receptors etc.

    As well as specific cells that heal the damage in kidneys is another example.

    This is the kind of cells that I would see fit to heal the body as they are targeted and identical to what has been damaged.

    What needs to be determined other than the Mito Hypothesis...is wheher this is:

    A true encephalopathy or encephalomylietis

    A autoimmune issue like that with autoantibodies

    A Mito Downregulation as per Naviaux

    The issue with all the autoantibodies popping up is what is really an area of focus that needs to be addressed as once the autoantibody pops up even if in the beginning the Mito issue was present and persisted but now u are in a state of autoimmunity....this area meaning autoimmunity has so few effective treatments as it relates to the brain and spinal cord...and Rituximab only seems to work in one third of patients.

    Its like they need a way of cleansing the blood to stop the autoantibodies like maybe similar to PP.

    irregarless for ppl more severely affected a very a stepwise approach will be needed to get them back to health if it is possible.

    What really needs to happen so that everyone stops spening their lives savings is that the government and health agencies need to create centers all around the world to meet the demand of the millions afflicted with no answers.

    Evrerytime I think about it has to be the most inhumane treatment of people in Westernized Countries....makes me sick
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Tbug,
    There is no such thing as stem cell therapy. There is something called haematopoietic stem cell rescue - which is giving people back their own blood stem cells to keep them alive after lethal chemotherapy. Any other claim of 'stem cell therapy' is bogus, at least at present. You would have to know which cell type these were supposed to be stem cells for and whether anybody knows if there are such things as stem cells for that type. Most talk of stem cells is a way of getting money out of research committees or out of gullible patients. It sounds good but means nothing.
     
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  12. Tbug

    Tbug

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  13. Tbug

    Tbug

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    From what I understand the out of control risk and cancer risk is more so with embryonic stem cells rather than adult stemcell
     
  14. trickthefox

    trickthefox Senior Member

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    Afraid I disagree with you there, ive followed and witnessed people who went to the clinic I attended go from housebound to living full lives (lyme treatment). While we may not understand why autalogous adipose stem cells work, they do
     
  15. trickthefox

    trickthefox Senior Member

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    Also do your own reserach and you will see tremendous recorded benefits for things like diabetes, chrons, M.S, organ regeneration, tissue repair, the list goes on. These are benefits derrived from Mesemchymal stem cells.
     
  16. Tbug

    Tbug

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  17. Tbug

    Tbug

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    I do understand there is little research on the typical. However, the Dr I was seeing had seen amazing results using adult stem cells take from stomach fat. Injecting it into a 95 year old man for his osteoarthritis in his knee and watched his Parkinson's symptoms completely disappear. Also he had treated half a dozen CFS patients intravenously with their own stem cells and doesn't claim to know why or how but their quality of life has improved dramatically. He doesn't promise anything. He is willing to try it if his patients want. He clearly states it is a treatment not a cure.
     
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  18. trickthefox

    trickthefox Senior Member

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    Agreed, there is so much we don't know, so the word 'bogus' is a bit heavy, so is calling patients gullible, stem cells are doing rather miraculous things, yes there is alot of hype, but in some areas, it is justified. Research won't move as quickly because it is an expensive procedure that cant be put into a little pill that will make people rich. Medicine which isnt instantly and easily profitable allways takes a while to progress. Sad truth
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Trickthefox,
    I was a professional working in this area. I was a member of the UCL Stem Cell Research Centre - at least they made me a member and I kept trying to unsubscribe from their email list. There is no stem cell treatment out there I am afraid. The list of speculations is endless. The list of treatments is zero. People get better for all sorts of reasons. I hate to see people waste thousands of dollars on pseudoscience.
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The doctor sounds as if he saw amazing increases in his bank account from randomly taking bits of people and putting them back. It is just not credible that stomach fat stuck in a knee would have an effect on Parkinson's. after all the cells were already there in the stomach fat so why should it make any difference putting them a bit further away from the brain in a knee where they will die. Why would anyone put it down to that. Maybe the patient had adjusted his medication.

    Sorry folks, but stem cell therapy does not exist.
     
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