Stem Cells

[Daffodil]

hi cfs since. i cannot remember the name but i dont think that was it..what does AHCC stand for? i remember one bottle having the words "reishi" and "chaga" on it.

 

[Diva55]

I don't know if this has been posted already or whether it's appropriate to post it here.

The UK newspaper - The Daily Mail- has an article on stem cell research and trials on stroke patients. It goes on to say that it could be used for a wide variety of patients and even mentions the C (cure) word.

http://www.dailymail.co.uk/news/art...ed-power--catastrophic-surge-cell-growth.html

 

[Cort]

It is a little disturbing that there are so few reports. Cheney supposedly brought 20 people down originally, and I believe there have been more since then - where are all these people? So far, I think I have heard from or about 4, maybe 5 people, including Molly. One of them, a guy on the CFS yahoo list, reports absolutely no benefit. But if you had a tremendous benefit, wouldn't you tell anyone with CFS who you knew? I can understand "getting on with your life," but there isn't time for a 10 minute post to a newsgroup or a forum?

Hopefully at least we will have dipic's report in a few weeks to add to the database. Other than his report soon I hope, and what we have heard from Molly, the only other first hand account I have read other than the guy who got no benefit is the "water skiing" lady (that's what I call her - don't remember her name) on the CFS experimental list. It just seems odd - does cheney swear these people to secrecy or something? Or does it just not work for most people, with Molly being one of the apparent exceptions?

Hopefully with his website Cheney will share more - I'm sure he will. I remember, though, after his big whey protein discovery when he found 4 of 7 or whatever it was of his patients improved dramatically that he never provided any numbers after that. I kept waiting for his larger 'study' and it never did.

 

[dipic]

Hopefully with his website Cheney will share more - I'm sure he will.

Sure would be nice. At $50 a month he's only updated his website once since we've subscribed (back in April!) One of the articles being on how certain natural waters might benefit CFS patients. Good grief.

I have been trying to cancel our sub for the last several days but his customer support AND sign in pages keep giving me 404 errors. Wonderful.

Wonderful waste of money, that is.

hi cfs since. i cannot remember the name but i dont think that was it..what does AHCC stand for? i remember one bottle having the words "reishi" and "chaga" on it.

Hi Daffodil. AHCC stands for Active Hexose Correlated Compound.

 

[mojoey]

Hey Dipic,

I believe the issue with 2 websites is that they've been changing web masters in the last few days, but they should be back online now.

I've heard reports that Cheney is now thinking that multiple infusions may be necessary for CFS patients with stem cells because of difficulty resolving the retrovirus (XMRV, HGRV, whatever it turns out to be). My personal belief is that you won't see this stem cell study published until there is testing available to track the effect of stem cells on XMRV. There is always the chance that he publishes a study based on patient improvement with his ETM, IVRT testing, and other parameters, but the fact remains that 3 out of anywhere from 30-50 of his patients on stem cells have achieved a functional cure, and their pre-stem cell XMRV status is unclear.

 

[Chris]

Hi; I remind folks that Rockt posted a summary of the results Cheney has recorded for his stem cell patients in #798 of this thread; I think Rockt was repeating a summary I posted somewhere from the data on a slide he prepared but did not get around to using in his talk at the Invest in ME 2010--it is available in the PDF files on the 4th disc of the DVD set. Overall the results (expressed in Karnofsky scale figures) are not overwhelming, though one patient did move very radically. I may take a shot at capturing and posting the slide, but my computer skills may not be up to the task. Best, Chris

 

[mojoey]

Hey Chris,

Although the move from 50-90 is very impressive regardless of age, I still think it's imperative to know the pre-stem cell XMRV status of that person, not the least because Cheney actually believes the retrovirus is the case of true CFS cases. Otherwise it's just a bunch of numbers from a heterogeneous group of patients that received a CFS diagnosis. There are plenty of ME/CFS patients at my current doctor's office, but for some reason I'm the only that turned out positive for XMRV (based on available testing of course).

Just like hemispherx is doing retrospective analysis to find out if ampligen worked better on XMRV-pos patients, I think cheney and riordhan should go down that route to find out if a certain subset of patients benefits more from stem cells.

 

[Chris]

Joey, I agree--I am not seriously considering spending serious money on a stem cell treatment until I know whether I am XMRV pos, and we have a report on how XMRV status interacts with that.

It would be nice if Cheney were more forthcoming with info, but have to report some concern about him--he seems thinner and less energetic in the 2010 Invest in ME presentations than in the 2009 Oxygen DVD--he is not young, and maybe that transplant heart is beginning to cause problems? I have no evidence for that, but just an intuitive feeling that all may not be quite well with him--I hope I am wrong, because though he may be quirky, he is undoubtedly very smart, digs out all kinds of interesting possibilities, and is without question one of the long term heroes of our common quest for health. Best, Chris

 

[mojoey]

Hey Chris,

Just based on what I've read about you, your concerns and your mentality, I know you're not the type to jump on a bandwagon, so I hope you don't think I'm trying to lecture you or anything I'm just trying balance out the earlier hype about stem cells, esp the positive sentiment spurred by the group discount (7k less = less risk, so the risk/reward ratio automatically becomes smaller without any new evidence), with recent findings.

Cheney works tirelessly and is up there in age, and I think his all-cylinders approach does not help. He is acting both as researcher (still on the cutting edge of therapies), advocate (he is in constant dialogue with WPI), and physician. Peterson took a big step back from the research side despite all the XMRV noise, but Cheney is intimately involved in the politics. I just hope he can keep this up, take a half glass full approach, or head to Panama for an infusion and become Cheney Junior.

 

[Chris]

Joey, no problem--I think we are in basic agreement that at this moment, with major news about to break (we hope and assume) on both testing and status for XMRV, and with doubts lingering over its relationship with stem cell treatments, a little more waiting is in order. In the meantime, if Stem-Kine and AHCC can do some clean-up work, well and good--and of course if in 6 months I find myself much better, well....

I like your idea of Cheney going off for stem cells and reemerging as Cheney Junior--we could use more of him, and more like him. Best, Chris

 

[undercover707]

Dr. Cheney's preliminary experience with stem cell treatment available!

Hi everyone,
Ann Cavan and I have sent an email to Dr. Cheney telling him about our interest in his stem cell research. We asked him for a summary of his knowledge to date about stem cell treatment and also about the results of his follow up to date with his patients who received stem cell treatment.
After a couple of weeks he responded with an extremely informative e-mail in which he told us about his preliminary experience to date with stem cell treatment.

For Copyright reasons, I think it is not appropriate to post the e-mail in this forum, but I would be happy to forward Dr. Cheney's email to anyone who sends me an email asking for it. Because Ann and I mentioned in our e-mail to Cheney, that we where asking on behalf of the members of the Phoenix Rising Forum, I think forwarding his e-mail should be OK for Dr. Cheney.

Also, together with Ann's and Marty's help, I was also able to get Gordon Medical Associates interested in collecting stem cell treatment follow up data. I will tell you more about this in my next post.
Best,
a.k.a. David Herre

 

[undercover707]

Stem Cell study for CFS!!!

Hi everyone,
To give you summary of what happened so far, I will quote what we wrote to the patients of the August 23rd Panama stem cell group, asking for their participation in the study:

Dear Future Panama Stem Cell Treatment Patient,
I am delighted to report that a researcher has expressed interest in our Phoenix Rising Stem Cell forum, and in patients seeking stem cell treatment in Panama. They have offered to provide a member of their research staff to benchmark your current health, and make systematic follow-ups on your response to stem cell treatment. The objective is to both get the attention of the wider scientific community through published research, and to provide more detailed, definitive information for patients in their stem cell decision making process.
How did this come to be?
David and Ann Cavanagh had the chance to attend the California Institute of Regenerative Medicine Townhall meeting on Stem Cells in San Francisco this June. We spoke with a member of their expert panel about how stem cell treatment has shown positive results in CFS patients. We discussed the need for recognition, and to get the attention of the wider scientific community. Dr. Douglas Sipp explained simply that the way to raise attention is through published research.
Why this researcher [name removed]?
After contacting multiple CFS specialists, including Dr. Cheney, [name removed] were the best fit – CFS expertise, a research director ready and available, and deep relationships in the CFS community (Dr. Cheney, Dr. Mikovitz, amongst others). [name removed] has assigned his research director, [name removed], to this project and committed to publishing should the results be promising.
The following e-mail contains further information about the details of the study. We tried to include everybody of the August 23rd Panama group, but only a view where able to participate. This is, why [name removed] and [name removed] had the idea to include patients who receive other Stem Cell Therapies in other clinics.

To give you further details, I quote an email, that I received from [name removed]:

[FONT=Arial, sans-serif]
[/FONT]
-------- Original-Message--------
subject:
Re: [Fwd: Re: ALL EMAILS HAVE BEEN SENT OUT.....]
date:
Wed, 28 Jul 2010 17:24:37 -0700
from:
[name removed]

(...) here is where we are currently. We will track people who are doing any type of stem cell treatment, whether it is the Panama treatment at Riordan's clinic, the [name removed] treatments we do in our own office, or whether it is the treatments in India, as long as people make a commitment to doing what is necessary. We cannot order any labs for people who are not our patients, and we cannot make anyone a patient who does not come in for an initial appointment. We CAN collect data from anyone who has a doctor overseeing their care, and whose doctor is willing to order the minimum of the two tests we will require. We want to track people for two years following treatment, more frequently the first year when we would expect to see the maximum improvements.

We tried to set it up so that the expense to those who want to participate is as low as possible. It will require a fair amount of participation as far as filling out questionnaires, but we will keep the length as short as possible. I'm very sorry that we cannot take anyone who is doing this without a supervising physician, but frankly, we do not feel it is wise for patients to pursue this treatment without a doctor on board. There is still not enough known about potential consequences.

Because we will be tracking our own patients and protocols, as well as the Panama patients, it will be fine if we don't enroll very many from Riordan's clinic. The ones we do get will be a good comparison to the less expensive protocols at [name removed]. We intend to just keep enrolling patients as we find them, though they do have to begin participation before treatment. I will be sending out a more detailed letter to the patients who have replied by tomorrow, after I check to see whether the conversation with Riordan made any changes in our plans. If they can fulfill the requirements, they will be in.

Thank you very much for all of your help. I think this will work out now that we figured out how to include a larger patient group.
(...)

Sincerely,
[FONT=Helvetica, Arial, sans-serif][[/FONT][FONT=Helvetica, Arial, sans-serif]name removed[/FONT][FONT=Helvetica, Arial, sans-serif]][/FONT]

I am very happy about [name removed]'s interest in Stem Cell Therapies. Everybody, that I worked with at [name removed], showed a very apparent intention to help people with CFS.

Organizing this would not have been possible without the big help of Ann and Marty. I want to thank you both, very much.

Working on this project also showed me how many wonderful people are trying to help improving the lives of people with CFS.

If you decide to receive stem cell treatment, your participation in this study would be of great help. You can contact Susan directly at [name removed] about participating.

Best,
David

 

[Rrrr]

David,

Thank you to you and everyone involved with setting this up. This is a big help to the CFS community.

Thank you,
Rrrr

 

[Rrrr]

David,

Can you tell us what the tests are that GMA will do before and after stem cell treatments?

And can you tell us what type of stem cells GMA offers at their clinic, and also at the Mexico clinic?

Rrrr

 

[undercover707]

David,

Can you tell us what the tests are that [name removed] will do before and after stem cell treatments?

And can you tell us what type of stem cells [name removed] offers at their clinic, and also at the Mexico clinic?

Rrrr

I can contact [name removed] for the exact list of tests.

* offers at their clinic [name removed] stem cells. I think they collect them from ones own body fat, send the to [name removed], where they are expanded and reinfuse them in the patient.

I do not know about the Mexico clinic. I think it is a clinic smilar to the one in Panama.

Best,
@David

 

[Rrrr]

Hi David,

If you can ask susan the list of test and also if she can confirm what type of stem cells she offers at each location, that would be great. but if you'd rather not ask her, i can. i just don't know if she wants to communicate with just one of us, or all of us!

warmly,
rrrr

 

[Rrrr]

And, David, I'd be very eager to see Dr. Cheney's email on his stem cell findings. Please send to me in a private message, or I also sent to you, in a private message, my home email address, and you can send it to me there. THANK YOU AGAIN FOR ALL YR HARD WORK. VERY VERY VERY HELPFUL!!!!

rrrr

 

[undercover707]

My Dr. at [name removed] said, that they have been sending some patients for stem cell for up to 6 years. [name removed] said, that 1 out of 5 had an extremely positive results. The other 4 out of the 5 got a little bit better.
He definitely recommended the Panama treatment to me. I think they are working most closely with[name removed], but because Panama is "more tried and true", they recommend Panama at this point in time.

 

[Rrrr]

thanks for this info, david, but unless we know the answers to the following questions, this info does not help us CFS patients too too much.

1. what type of stem cells have their patients been getting for the past 6 yrs?
2. and were these patients people with CFS or other illness?

again, thank you for yr help, david!

 

[Rrrr]

david, can you tell us the date of cheney's email to you? -- best, rrrr

Hi everyone,
Ann Cavan and I have sent an email to Dr. Cheney telling him about our interest in his stem cell research. We asked him for a summary of his knowledge to date about stem cell treatment and also about the results of his follow up to date with his patients who received stem cell treatment.
After a couple of weeks he responded with an extremely informative e-mail in which he told us about his preliminary experience to date with stem cell treatment.

For Copyright reasons, I think it is not appropriate to post the e-mail in this forum, but I would be happy to forward Dr. Cheney's email to anyone who sends me an email asking for it. Because Ann and I mentioned in our e-mail to Cheney, that we where asking on behalf of the members of the Phoenix Rising Forum, I think forwarding his e-mail should be OK for Dr. Cheney.

Also, together with Ann's and Marty's help, I was also able to get Gordon Medical Associates interested in collecting stem cell treatment follow up data. I will tell you more about this in my next post.
Best,
a.k.a. David Herre