1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Stem Cells

Discussion in 'General Treatment' started by deb obrien, Aug 13, 2009.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    hi hubcap_halo, and welcome to the forums.

    Molly - I echo hh's thanks for the on-going info. And agree that stats are important.

    I love hh's idea of perhaps getting a grant. Great info re the Gates Fdn grant section. I'd like to post that info on its own thread so that more people are aware of it. There's a great looking documentary - see the UK doc What about ME thread - that needs more funding too.
  2. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    174
    Victoria, BC
    Stem-Kine

    Hi--this thread has me all agog--despite my age! I have made a start by ordering some Stem-Kine, though CFS since 1998's info that it is mostly Vit D, beta glucans, and ellagic acid has me wondering whether taking D, eating oats and mushrooms, and drinking pomegranate juice might not work just as well. If and when I have taken some will report back. Meanwhile, I have to get my passport renewed! Best, Chris
  3. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    You have a fan club Mary...and what a great idea about Mr Gates.
  4. Molly29

    Molly29

    Messages:
    42
    Likes:
    0
    Stem Kine WORKS

    Chris
    Let us know if it works for you too...I am on Stem Kine and so are most of the patients I know who have had Stem Cell infusions in Costa Rica and Panama!

    Molly
  5. JanisB

    JanisB Senior Member

    Messages:
    223
    Likes:
    12
    Central Ohio
    Joey, now we know why you have such a good appetite! (Sorry, I just couldn't resist)
  6. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    Mary email me when you stop twirling from a clear head.
    Al
  7. Andrew7

    Andrew7 Guest

    "Today one medical technology that does possess great promise but is not yet ready for prime time is stem cell therapy. Legitimate scientists involved in stem cell research are almost giddy about the possibilities. Early applications are possibly just around the corner, and only time will tell what the full potential of this technology is. But right now there are no legitimate stem cell therapies outside of research protocols. It is therefore not surprising that the con artists of today are exploiting the tremendous hype of stem cells. The most direct exploitation are clinics that claim to have stem cell therapies today for terminal or debilitating diseases."
    "Also be wary of amazing treatment claims that are peppered with the latest scientific buzz words but, but are either vague or seem out of place. Take the time to research such claims by checking to see what legitimate organizations have to say about it before you invest time, hope, money, and your health in what could very well be a scam."
    http://www.sciencebasedmedicine.org/?p=73

    People have heard about stem cells. They believe they can just inject stem cells and wave them around and get miraculous cures, said Dr. Jack Kessler, a stem cell specialist at Northwestern University. But its going to be years before we have any kinds of cures for MS, Parkinsons or diabetes.
    "Last month fetal stem cell injections into the brain of an Israeli boy caused a tumor in his brain.
    Patients, please beware, Dr. John Gearhart, a stem cell scientist at the University of Pennsylvania who wasnt involved in the boys care, told The Associated Press.
    Cells are not drugs. They can misbehave in so many different ways. It just is going to take a good deal of time to prove how best to pursue the potential therapy, Gearhart said."
    http://64.233.163.132/search?q=cach... Gearhart overseas clinics&cd=3&hl=en&ct=clnk

    " * first, please remember that the medical charlatan knows exactly how desperate and frightened you are: that is precisely the reason he targets people with MS (or motor neurone disease, or any disorder which currently cannot be cured by conventional medicines). He depends on your desperation - and, frankly, also uses it as a basis for calculating his price;
    * second, remember these clinics are set up in Central America or China or wherever for a reason: because the regulatory systems would not allow them to function in Western Europe or the US. They are outside regulation. This doesn't just mean they avoid boring Health and Safety inspections and the minimum wage. It means that you can have no idea at all what is in the pink fluid in the syringe about to be injected into you. It could be coloured water (which at least would be safe). It could be cancer-forming embryonic stem cells. Tumour formation is not just a theoretical risk: the first case of a child, treated in Russia with embryonic cells and later developing tumours formed by the stem cells, has now been reported in the literature: others must surely follow.
    * third, despite everything you might read on the internet, including accounts allegedly written by patients themselves, remember that clinics like these have now been running for well over a decade. Over this time hundreds - thousands - of desperate patients will have handed over their 30,000 or more for their miracle cure. If, in all this experience, a single patient with motor neurone disease had been cured of their illness, or a single patient with definite and progressive MS had thrown away their wheelchair and run a three hour marathon, or even had an MRI scan that had returned to normal, be in no doubt that the medical journals would have been buzzing with red hot case reports, time and time again ever since this started. They are not. There is not a single corroborated report of an MS 'cure'."
    http://www.mstrust.org.uk/information/opendoor/articles/0908_08_09.jsp

    http://www.alsforums.com/forum/gene...912-going-costa-rica-stem-cell-therapy-2.html
  8. JanisB

    JanisB Senior Member

    Messages:
    223
    Likes:
    12
    Central Ohio
    First, no one uses embryonic stem cells because they cause teratomas; this has been known for over a decade.
    Second whoever wrote this is super naive. My friend Elaine FULLY RECOVERED from MS. She wrote a book about it called From Hell to Well fully documenting everything she did. Do you think that a single MD paid attention? Do you think the medical profession cares? If a single person recovers, or even if 20 people recover from a chronic illness, it is called 'spontaneous remission'. No one bothers to examine what really happens and worse, doctors tell new patients that recover is impossible without referring them to the protocols and books of others who have healed.

    Similar experience with Barbara Allen, a friend of a friend who wrote about her complete recovery from debilitating (wheelchair bound) rheumatoid arthritis by identifying food allergies and eliminating them. Have rheumatologists seriously looked into this? Has her recovery made the medical journals? No, they give drugs to block the immune system response instead and continue to tell people that the disease is a life sentence.

    I was told I've had to get thyroid ablation when I had Grave's disease and a goiter in 1983. Instead, I explored homeopathy and mind-body medicine, and a decade later, when I was hypothyroid, replacement hormone, GF diet and acupuncture. Today, my thyroid is not perfect, but it works within the normal range without any medication. I've had numerous doctors palpate my thyroid but not a single one has ever asked how I recovered.

    I am sure stem cells will help thousands of people before the author of this article acknowledges their potential!
    And by the way, there are clinics doing stem cell therapies in Germany. They use bone marrow derived stem cells, a technique used for decades in Western medicine, and well documented with fluorescent dyes as responsible for regeneration of cardiac, vacular, hepatic, and neural tissues.
  9. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    The article is pure drivel as the author does not distinguish between embryonic stem cells and other types of stem cells. Hematopoietic stem cells have been used in the United States for decades. Their use in an immune deficiency such as CFS is logical as these cells are the direct precursors to blood cells and lymphocytes.
  10. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    I agree, Janis. There's a big difference between using embryological stem cells and either the person's own stem cells from their bone marrow or stem cells from the placenta or umbilical cord of a newborn, both in terms of the moral or religious issues as well as how well they work. As I understand it, the pharmaceutical companies are pushing the embryological stem cells approach because they hope to be able to patent the techniques and thus have a monopoly and raise the price. It isn't possible to patent a person's own stem cells. It's hard to imagine how large the impact would be on drug sales if the stem cell treatments being used today in Mexico, Panama and Costa Rica were allowed to be done widely within the U.S. I think we can expect very strong resistance to this from certain economic interests.

    Here's a report I received from a friend of my family last week (I've removed the names for privacy):


    Dear family, friends, and loved ones;

    -------- and I left for Mexico December 31st, 2009, and ------ (my caregiver) came mid January, and after being there for 2 1/2 months, I was declining quickly. I was in stage 5 Parkinson's I couldn't take a step or exercise, or even feed myself, my energy level was dismal. We decided to take the leap and go forth with the stem cell transplant. We heard through some friends it may give us hope. We met with Dr. Morales who leads the team. We met with him on March 17 and by the 18th, I was already receiving the cell booster injections. The procedure to harvest the stem cells from my hip bone marrow began on the 21st late afternoon at the hospital. For the following 24 hours Dr.Morales and his team separated the healthy stem cells in a petri dish from the damaged cells and multiplied them and prepped them for reinsertion on Monday morning. They injected 200 cc's in my left brain, 200 cc's in my right brain, around my eyes, and major facial muscles, as well as my spinal cord and legs. I was awake during this procedure and stayed overnight until the morning of the 23rd. I was released and on a plane by 2:00pm heading home. I was worried at first as I was sluggish and not really responsive, until ------ remembered he had given me a sleep cocktail for the plane. By Wednesday my sciatica pain was completely gone and I began to notice my toes were beginning to separate. By Thursday I was standing unassisted and straight and took three little steps unassisted. My voice was becoming louder and stronger. By Friday I was able to walk straighter and my knees were no longer touching, I was able to maintain my energy level through out the day, still no pain, I was able to feed myself and my tremors were gone when I go to grab things. I can take my meds myself and I started my exercise program again. I am feeling much stronger, happier, and excited for the future. I am told by Dr.Morales I will keep improving for up to a year. Thank you all for your kind thoughts and loving prayers and support through this whole battle. I am hopeful and excited for where this journey will take me and I am hoping it takes me back to the beach in PV and where ever else I wish to go. We have a long way to go but we expect to get there! (Now I am handing this off to ------....... When ------ speaks her whole face lights up when she talks those big blue eyes of hers are so expressive and now her face follows. She is laughing most of the day and her body is doing now what it couldn't do before almost as it was always meant to be. She is reaching for things and her whole body moves, she can readjust her position and she is lively unto the wee hours of the night with a strong loud voice and plenty of energy. I was nervous and first not sure what the turnout would be but every day many times she is doing things she just couldn't do before. This is a great blessing.)

    Monday night ------ brought a bottle of champagne to the hospital and we toasted with Dr.Morales and a few friends so salute!!!!


    Love,
    ------
  11. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    I understand your concern Andrew, but there are some other factors to be taken into account as well.

    1) Your first article might be considered out of date, as it is dated 2008, and things are changing fast in this field.

    2) As other posters have pointed out, the type of stem cell used needs to be considered. Here is a pretty good primer, also a little out of date: http://www.mstrust.org.uk/information/publications/factsheets/stem_cells.jsp

    3) I would be just as wary of blanket condemnation of "foreign" clinics as I would blind faith in American or European ones. One reason: The US healthcare system ranks 37 in the world, according to WHO, and Costa Rica's ranks 36.

    This is important because the stem cell treatments being discussed in this thread are mainly about the clinic in Costa Rica and an associated one in Panama. There are many reasons to think a patient might be able to trust a clinic such as this. One is that the American doctor, Dr Cheney, no quack or charlatan, is sending some of his patients to the CR clinic. He reports some of those results on his website. Cheney, if you didn't know, has been treating CFIDS for decades.

    Another reason to be wary of what the Americans say is that there is blatent bias in favor of the nonsense that the US has the best medical care in the world...as CFIDS sufferers, we know it hasn't been that great. And many of the doctors in those "foreign" clinics trained in the US.

    3) One reason the US is behind the rest of the world in stem cell research has been the religious politics surrounding it; this has just now been countered by Obama lifting the research bans put in place by the Bush agenda. One reason such research and treatment went elsewhere was that those who were working in that field had the rug pulled from beneath them when religious politics superceded science in the US.

    4) I've seen that report about the Israeli boy who supposedly got brain cancer from a stem cell treatment, but I haven't seen anything to prove that the treatment is the reason he got cancer. When we apply the standard of proving a treatment works as it is said to, we also need to apply the same standard when a treatment seems to have had a negative outcome.

    5) One of your article quotes: "Take the time to research such claims by checking to see what legitimate organizations have to say about it..."

    Good advice.

    I think that is exactly what we are doing here. These studies are mentioned in the above referenced link (all involve MS patients):
    European Group for Blood and Marrow Transplantation

    In 2002, the European Group for Blood and Marrow Transplantation carried out a comprehensive analysis of 85 patients who had received stem cell transplants for MS [1]. Because this analysis looks at results from several different trials, the method for suppressing the immune system and infusing the stem cells was not the same for all 85 people.
    The analysis showed that the transplantation of haematopoietic stem cells was a potentially useful treatment for some people with MS. Following treatment an anti-inflammatory effect was seen, as measured by MRI. However, the effect on stabilising symptoms and disease progression was less clear. It was also observed that in high-risk cases such as the over-45s, those with a high disability score or people who had undergone a more intensive immunosuppressive treatment, the procedure was associated with a 5% risk of transplant-related mortality.
    The European Group for Blood and Marrow Transplantation is currently carrying out a phase III trial comparing autologous stem cell treatment to the immune suppressing drug mitoxantrone. This trial is called the ASTIMS (Autologous Stem Cell Transplantation International MS) trial. The results of this trial are not expected until at least 2010-2011.
    Italian Group for Bone Marrow Transplantation

    Results of a phase II trial carried out by the Italian Group for Bone Marrow Transplantation were reported in December 2005 [2]. This trial involved 21 participants with MS who were beginning to have difficulty walking (with a score in the range 5.0-6.5 on the EDSS scale, a standard measure of disability in MS), and were rapidly deteriorating. Participants received stem cells harvested from their own blood. Following treatment 20 people had stabilised or improved. The remaining participant also improved initially, but began to deteriorate nine months after the procedure. To date, participants have been followed up for 66 months.

    5) Some of the quotes in your linked articles have amusing statements about how expensive these foreign clinics are! Compared to what? Medical tourism got its start because of how expensive medical treatments of all kinds are in the US! If a stem cell treatment at the cost of $20,000 worked for someone like me, it would save the US government/SSA that amount in two years of disability payments, and I could once again pay taxes! Not to mention the value of an end to the decades of suffering and poverty and the reclaiming of what's left of my life. Also compare that cost with drug treatments, also unproven and with known side affects, that are costing upwards of $800/week.

    So, I'm grateful that someone has the money and the guts to be the guinea pig/pioneer in trying out what may turn out to be the most valuable treatment for CFIDS/ME yet. And I'm grateful that those "foreign" clinics didn't let US politics stop them from advancing the science.

    Thanks for joining the conversation, Andrew, and welcome to the forum. Do continue to post if/when you find other information on this topic, ok?
  12. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    3
    Wholeheartedly agree! BIG TIME:Retro smile:
  13. bluebonnet

    bluebonnet

    Messages:
    41
    Likes:
    0
    http://health.groups.yahoo.com/group/CFSFMExperimental/message/129054
  14. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    Hi bluebonnet.
    I'm not a member of that group either and echo what Mr Kite has asked.
  15. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Mr. Kite.

    The patient is a friend of a person in my family. The patient interacted with me by email over three years ago when she first became aware that she had Parkinson's disease, and she was looking for information on supplements, such as Co Q-10, which have been somewhat helpful in Parkinson's. Her condition worsened during the past three plus years. Since I know some of the history on this case, I believe that it is an honest report. I don't feel that I can report other details because of privacy considerations.

    Rich
  16. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Don't lose hope on the stem cell treatment for CFS

    Hi, Mr. Kite and the group,

    I can certainly understand how the experience of having spent a lot of money on things that didn't really help much or at all can make a person very leery of reports of something new that supposedly works very well.

    As you know, I am a proponent of lifting the methylation cycle block for the treatment of CFS, and I am not involved with the stem cell treatment. The methylation treatment has helped a lot of people, perhaps two-thirds of those who have tried it. For some, it has helped a great deal, and a few have been able to return to full-time work. There are others who are helped some, but are still not recovered. Some don't experience any improvement at all. I continue to believe that this treatment is an important component of the treatment of CFS, and I continue to study those who have not had a response to try to understand why. The point is, I'm still focusing on methylation, and I think it can make a big contribution to helping many people with CFS.

    However, I'm also keeping my mind open to other possibilities, and a couple of them are the neural therapy approaches that some people are trying now, and the stem cell treatment. I want to urge you not to lose hope on the stem cell treatment for CFS. It is very early to reach conclusions on it, but the reports I have been reading sound very good at this stage. I'm not free to share everything I've been hearing because of patient privacy rights, but I think Dr. Cheney has shared some results publicly on his website, and some of his patients have also been posting to CFS groups. In addition, Dr. David Steenblock has been doing stem cell treatments for people with neurological disorders for several years now, and I've read good reports in his newsletter and on his website in the past.

    I don't think anyone understands all the mechanisms involved in causing the improvements that have been reported, but I believe that these people are telling the truth about what has been going on with the patients that have been treated. Again, this has not been going on for very long in CFS (of the order of some months), and we need to reserve conclusions until there is more experience, in my opinion. But I am certainly rooting for the doctors and patients who are trying this, because I think it is a very hopeful possibility for a lot of people.

    How it's going to relate to XMRV, I don't know, and I don't think anyone knows that yet.

    Please hang in there!

    Rich
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,853
    Likes:
    747
    Concord, NH
    Posted by Organix:

    3) I would be just as wary of blanket condemnation of "foreign" clinics as I would blind faith in American or European ones. One reason: The US healthcare system ranks 37 in the world, according to WHO, and Costa Rica's ranks 36.

    I have read that this ranking is partially based on "fairness" so socialist countries get better ratings. I do not put much confidence in what WHO says because they are under the UN and what have they accomplished?
  18. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Rich,

    I very much appreciate the spirit in which you post, and your commitment to finding what will help us even if that means changing your ideas. I read once where you said you don't want to leave anyone with chronic fatigue syndrome behind (at least that's how I remember it). Your clarity and your openness are refreshing. Thank you.

    gracenote
  19. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    What has "socialist" got to do with anything? (Costa Rica, for the record, is not a "socialist" country. It does have universal health care, as do most of the civilized countries on the planet.) As for what WHO has accomplished, I leave it to you to search that out. It is considerable.

    Have you been to Costa Rica or any of the foreign clinics? Dr Cheney has and he found them to be excellent. I go to Costa Rica twice a year and find it to be more advanced than some US states. People from the US come to Nicaragua, Costa Rica and Panama yearly and get dentistry and other medical procedures done here because the treatment is equivalent but the cost is 1/4th or 1/3rd of what it is in the US.

    As others have pointed out, it is the thought of money leaving the US that gets some of those anti-foreigners frothing at the mouth, not their desire to save us from substandard health care. And I could tell you stories of the substandard health care I've had in the US, but that's another thread. Similar stories are scattered all over this forum.
  20. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Mr.Kite.

    I think your plan to run the methylation pathways panel is a good one. Before the lab move, it was offered for $300. I don't know if the price will be the same in the future. You could phone them at (732) 721-1234 and ask. They are on Eastern time. They expect to be back up completely in about another week.

    Rich

See more popular forum discussions.

Share This Page