Stem Cells

[Kati]

Cloud, I don't think autologous stem cell transplant would work in the case of XMRV since the retrovirus inserts itslef in the genome. That would be unless there is some genetic manipulation on the cells prior to reinfusion.

 

[mojoey]

I agree with Kati. Reports from patients doing autologous with moraga have not been nearly as positive as cheneys. They worked wonders for arthritis but not so much for cfs and chronic Lyme patients. Getting re-implanted with xmrv, albeit in potent stem cells, does not bode well.

 

[Cloud]

Sorry to hear of your crash Chris.....hoping the best for you. Keep us in the loop with how your doing.

Kati, Joey....exactly my thoughts on using autologous stem cells for any infectious disease, but especially one involving a retrovirus.

 

[jenbooks]

By the way, the HIV patient got cured by stem cell thearpy because--

1% of Caucasians lack a receptor that allows HIV to get into the cell in the first place. This has nothing to do with their immune system. It's simply a specific receptor that is redundant (its job can also be done by other receptors) so lacking it is not a deficit. However where HIV is concerned it renders you virtually immune, simply because that receptor is where the virus first docks and enters the cell.

The person who received the stem cell transplant had cancer and HIV. They did the typical procedure--of wiping out the immune system and giving stem cells to reconstitute it. They gave him stem cells from a donor with that profile (lacks that receptor--) to see if it would "cure" his HIV. It did, because it created a new immune system populated by cells without the receptor HIV needs.

This really doesn't apply to stem cell therapy for CFIDS, in any way shape or form. In addition, stem cell patients for CFIDS are not getting their immune systems wiped out and reconstituted. It is more akin to experiments they're doing on stem cells in animals and some patients--for instance cardiac--to repair tissue. In a sense, stem cell therapy is repairing tissue and perhaps "repairing" a completely broken immune system. Theoretically if you have an ongoing infection it will slowly break down the system again over time. On the other hand, perhaps with a properly repaired system you could tolerate medications you didn't know about in the beginning, or avoid stress more consciously.

 

[slayadragon]

Jen, in theory, how would this tie in with the mold reactivity or toxicity element of this disease, do you think?

Thanks, Lisa

 

[jenbooks]

Hi Lisa. We should probably go back to Cheney's control points and ask and answer this, as the thread is on stem cells, but briefly, I do think you have a very good point there. Get stem cells, reconstitute, and vigorously avoid mold--if you're a "moldie" as an undecided number of us are--might be curative in some?

 

[mojoey]

Cheney found in some patients post-stem cells, chronic inflammatory markers shifted. Some of these are used by Shoemaker to gauge mold toxicity, but they can also be attributed to the presence of XMRV among other agents.

For confidentiality purposes, unfortunately I can't source that info or go into much more detail.

 

[slayadragon]

>In addition, stem cell patients for CFIDS are not getting their immune systems wiped out and reconstituted. It is more akin to experiments they're doing on stem cells in animals and some patients--for instance cardiac--to repair tissue. In a sense, stem cell therapy is repairing tissue and perhaps "repairing" a completely broken immune system. Theoretically if you have an ongoing infection it will slowly break down the system again over time. On the other hand, perhaps with a properly repaired system you could tolerate medications you didn't know about in the beginning, or avoid stress more consciously.


So does it seem like the stem cell transplants are more decreasing the presence of infections that are causing the inflammation?

Or causing the body to be able to withstand the infections without becoming inflamed?

Or something else?

I wish I understood better how stem cells are hypothesized to work, specifically related to CFS.

I haven't seen much of this explanation on Cheney's web site. Are there other places I should be looking?

I added a new post related to this topic on the "Control Points" thread.

http://www.forums.aboutmecfs.org/sh...s-quot-Approach-to-Address-CFS-Viruses/page13

Best, Lisa

 

[Peggy]

I know autologous stem cells are not seeming as effective as umbilical cord stem cells, but this menstrual blood stem cell banking place:
http://www.celle.com/about.aspx

is much cheaper than (name removed at behest of the company) ? I chatted with the rep online and she said that each "collection" can produce stem cells in the millions. For five hundred bucks plus storage, that's the cheapest stem cell option so far. The rep told me close relatives might also be able to donate to each other, but would need to be an HLA match (not just a blood type match). So it seems possible that some people could obtain stem cells from sisters, daughters, etc.

My question about using one's own cells is this:
Since there seems to be some evidence that some patients *might* seroconvert to XMRV-negative after treatment with cord blood cells, I wonder if those testing XMRV-negative might THEN be able to use their own cells without the same danger of corrupting them? Or would they still get corrupted? In other words, could the patients who traveled to Panama and shelled out big bucks then follow up with using cheaper menstrual blood stem cells, fat stem cells, etc.?

FYI, menstrual blood stem cells performed well in stroke research on rats, suggesting they actually might be contenders in repairing neurological issues.

Thoughts?

Peggy

 

[jenbooks]

There was just a study on autologous stem cells stabilizing MS. So it certainly sounds like something that could help you, at least temporarily.

 

[JanisB]

There was just a study on autologous stem cells stabilizing MS. So it certainly sounds like something that could help you, at least temporarily.

Can you post the abstract or PMID link Jen?

Also Peggy, what is the basis of your statement?

I know autologous stem cells are not seeming as effective as umbilical cord stem cells

n e.g. a research study? reports on CFS patients you know?

 

[jenbooks]

Hi Janis, I don't have a link. I put a google alert on various subjects I'm interested in, for a weekly roundup of news and blogs. "Stem cells" is one of my google alerts and when I skimmed it last week, I saw that study. I think perhaps if you search google news with the search terms you might find it.

 

[Peggy]

Janis,
I was speaking mainly about Dr. Cheney's experience with using fat-derived mesechnymal cells on his patients (which apparently was not as effective as the umbilical cord stem cells) and also the comments on this thread about Moraga.

In terms of other conditions, however, autologous stem cells have a proven track record -- for example with heart failure. With ME/CFS, however, there seems to be a risk that the cells are already corrupted, i.e. by XMRV.

Peggy

 

[undercover707]

Costa Rica/Panama answered my questions regarding safety of treatment

Hi everyone,
In post #227 I told you that I would get in touch with the clinics in Panama/Costa Rica and Germany and ask them about their experience with the umbilical cord derived stem cell treatment. I only asked questions about the safety of the treatment.
The clinic in Germany responded that they only do treatment with stem cells derived from bone marrow. This means that treatment with the clinics in Germany is not an option anymore.


Below you can read what a doctor from the clinics in Costa Rica/Panama responded to my questions.

----------------------
I just wanted to let you know that we have successfuly treated CFS in around 23 patients. The treatment protocol consist on intravenous injections of umbilical cord derived stem cells during four consecutive days.

1. How much follow up data do you have to this point?
   Our company has 5 years experience in stem cell treatment. We have one year experience in treating chronic fatigue patients and so far all of them have seen some kind of improvement. The only side effect they have reported is sleepeness up to 2 months after the treament.
2. Has this treatment or a similar treatment been used in other deseases over a longer period of time?
   Yes, as i told you in the previous question, we have treated other diseases with similar protoocols and we havent experience any side effects so far.
3. What are the side effects, that you have experienced with this treatment so far?
   So far, patients have reported sleepeness, mild fever the day of the injection. The worst that we have seen is that some patients doesnt respond to treatment.
4. Why do you think the treatment is safe?
   So far we dont have any reports of side effects when using umbilical cord derived stem cells. I am attaching a paper that explains the safety of this cells.
5. How is the procedure used in the report below related to the procedure that you are currently using on CFS patients? http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.1000029

This procedures doesnt relates to the one you refered. First of all, we only use adult stem cells in our clinics, the paper you are refering uses embionic or fetal stem cells. The adult stem cells doesnt become other cells, they just work by reparing the damage you might have in different parts of the body, and they will desapear form the body in about 6 months after the therapy. There isnt not even [I think this means: there is not even but I will reassure in my next e-mail] one case of tumors secondary to adult stem cell in the literature.
---------------
They attached this study to their e-mail, so I could learn more about the safety of the treatment:
http://www.cellmedicine.com/doc/CordBloodinRegenerativeMedicine.pdf
I read the study and will discuss my insights in my next post.
It appears to me like the clinics have 5 years experience with autologus stem cell treatment in general, but not as long with umbilical cord blood stem cell treatment. I will reassure for how long they have been doing treatment with umbilical cord blood derived stem cells.

 

[undercover707]

reading article "Cord blood in regenerative medicine: do we need immune suppr...

I studied this scientific article (Publishing date: 30 January 2007), that I received from a doctor of the Costa Rica/Panama Clinics.
From reading the article, I get the impression that treatment with cord blood derived stem cells is very likely to be safe.
Cord blood has already been used as a stem cell source for the treatment of other deseases in the field of oncology for a long time. The new and unknown aspect of the treatment currently used by the Costa Rica/Panama clinics to treat CFS/ME is the use of cord blood derived stem cells without myoablative conditioning of the host.
The authors of the paper discuss in their article reasons, why cord blood derived stem cells could be used without myoablation of the host. They are mainly talking about the risk of graft versus host desease and find a lot of good evidence that suggest that GVHD will not be a problem.
They also talk about other interesting points of stem cell treatment which makes this a very interesting article. I took the following notes:
My notes

• page 3
  • cord blood derived CD34+ cells seem to have higher hematopoietic activity then bone marrow cells
    Mesenchymal stem cells from cord blood expand 20-fold and mesemchymal cells derived from bone marrow only 5 times
• page 4
  • clinical experience (n=541) with cord blood transplants showed no graft versus host desease
  • patients with depleted t-cells through myoablation get GVHD.
• page 5
  • the graft might be cleared from the host over time but might still have therapeutic effects until then.
    there might be a view graft cells remaining in the host which might continue tho show therapeutic effect.
    Mesemchymal stem cells do not need myeloablation for efficacy as proven in phase I-III clinical studies with bone marrow derived mesemchymal stem cells for crohn's desease. There is no such evidence for cord blood derived mesemchymal stem cells but these cells may be even
    more efficient because of their proliferative potential.
    there have been only 3 published reports of non-conditioned recipients receiving cord blood cells for regenerative purposes
    • some regenerative activity was observed
    • no GVHD was observed
• page 6
  • Authors give suggestions for Strategies for clinical implementation
    • Cord blood together with stem cell activators
    • Cord blood plus natural chemoattractant
    • De-immunogenized cord blood graft.
  • Conclusion
    • positive

I also wrote down some questions, which I think will be helpful to you only after reading the article. If somebody else feels like studying this article too, I can send him/her my questions and we can discuss them. I don't think the article is a must read, but if you want to understand more about this treatment, reading the article might help.

 

[undercover707]

Some of my current considerations regarding the treatment

I feel like this stem cell treatment is right for me. However, for two reasons I will wait for a view month or a year or so until I try it:

1. I want to wait until Dr. Cheney offers a detailed report of his 1 year follow up with the patients that he sent down there. I have learned from my past experiences that usually new discoveries in the field of CFS/ME don't hold what they promise. Maybe the treatment is not as helpful as people dream about right now.
2. I heard about this only 2 month ago and do not want to rush into it.

I am not sharing the concern of some of the posters on this thread who are worried about the risk of reinfection with XRMV. I would just do the treatment again, if my body got reinfected with XMRV.
From what I know until this point in time, I think there is very little risk for side effects with this treatment. Cord blood derived stem cells have been used in oncology for a long time. The only thing that is really new about Costa Rica/Panama clinics stem cell treatment is that they don't do myoablation prior to treatment. The biggest risk associated with this innovation in stem cell therapy was graft versus host desease and Costa Rica/Pnama clinics as well has Dr. Cheney do not report a single case of GVHD in their patients.
There has not been reports on side effects so far, but what if their is side effects later in time? I think the risk for delayed side effects is little, because most therapeutic stem cells are cleared from the host after a year. I don't know of a drug that caused side effects in people after they where not taking it anymore. Please tell me about it, if there is such a drug.
Yes there is a risk, although it is small. People who are doing this treatment are doing it based on case reports and not based on clinical studies. There must be a reason, why drugs only get approved after their effects and safety where proven in Phase I-III clinical studies.
I think the risk is small enough, so that it is worth a try.

 

[oerganix]

Thanks for the research David. I agree, the stem cell picture looks pretty good, as far as we know, especially compared to the possibility of antiretroviral drugs and all the damage they are capable of doing.

I, too, await Dr Cheney's summer report on the patients he has sent for this treatment.

And since the paper you linked to above is over 3 years old, there may be newer information out there somewhere. Thanks for posting.

 

[oerganix]

See this thread for stem cell treatment of something docs in Australia are calling a "new disease", which sounds just like ME/CFS.

http://www.forums.aboutmecfs.org/sh...octors-identify-new-disease&p=81842#post81842

 

[JanisB]

Re: the risks of cord cell transplant
I've been thinking about this for awhile, since I'm still weighing the choice between autologous v cord cells.

Even though the stem cells disappear from the body in 6 months, I think the new cells made out of the stem cells have the donor's DNA. What are the long term risks of having someone else's genetic material in your body? Might it predispose you to other diseases? Will you inherit some different personality characteristics the way hosts of heart transplants develop a new personality, new emotions, or new cravings?

Dr. Vind drew my attention to a study showing that strands of DNA find others that are like each other; he thought this could have relevance to the energetic reaction of the body to a foreign DNA.

On the other side, I worry that autologous cells won't be effective enough, either because the numbers are insufficient, or because we need someone else's cells to reset the immune system.

I'm waiting for more information from the (Name removed at request of the company. PM individual for more info)study. In the meantime, the group price for treatment (if we have 10) in Panama -- which Molly plans to post soon -- is unbeatable, and that could sway me.

 

[JanisB]

Janis,
I was speaking mainly about Dr. Cheney's experience with using fat-derived mesechnymal cells on his patients (which apparently was not as effective as the umbilical cord stem cells) and also the comments on this thread about Moraga.

In terms of other conditions, however, autologous stem cells have a proven track record -- for example with heart failure. With ME/CFS, however, there seems to be a risk that the cells are already corrupted, i.e. by XMRV.

Peggy

A few things I'd like to find out (this as a bookmark): how were the fat-derived mesenchymal cells treated before injection/infusion? Why fat-derived instead of blood derived?
Now that blood screening is being developed for XMRV, it might soon be possible to learn if stem cells isolated from our blood are infected with XMRV.... (Guess that's likely to be more than a year away)
Janis