Stem Cells

[dipic]

Lucky day. I just got up after sleeping 12 straight hours (a rarity; fluke; probably only get 2 tonight. Sic vita est.) Anyway, let me try to give you my feelings on the current state of affairs while I have energy.

Let me just start out by saying that I'm still adamant about going, despite any doubts or reservations I may have (especially now with news of the CR clinic closing). That is indeed a little disturbing. As is the lack of data and first hand experiences being shared on the web.

I want to address that though; ponder this for a moment - how many ME/CFS patients are there estimated to be in the world? I'll just go by the latest "WHAT ABOUT ME?" documentary trailer since I literally just finished watching it several minutes ago. They stated "17 million." Don't know where they got that number from or if it matches up with other estimates; don't care, it's accuracy is mostly irrelevant to my argument. Now, we have heard that 1/4 of ME/CFS sufferers are either housebound or bedbound (again, see previous point on exact statistics.) This I am just noting for perspective.

Okay, so of all these people, how many actively use the internet to research or engage in discussion about their illness? Well, let's just look at our forum here - Phoenix Rising. I don't know if this is the biggest CFS/ME forum around (I believe it is; or at least the largest of those of quality.) Now look at how many members we have here. At the bottom of the forum index under "Chronic Fatigue Syndrome Forums (ME/CFS Forums) at the PHOENIX RISING Statistics" - "Members: 2,084" Of those, how many does it show are active? "Active Members: 773"

773 members out of an estimated 17 million suffers actively post on this forum. Some of those members may not even be sick (though I doubt that number is anything but extremely small, could be family members, whatever.)

We've had what, 30 people go for Stem Cells under Cheney now? And I believe 10 were just in the last month in a half (don't quote me.) Now how many of those people do you think used internet forums to discuss the illness? Who knows. But I think you can probably see the point I'm trying to make.

Let me give you some info the medical director of the SCI in Panama, Dr. Jorge Paz Rodriguez, gave me when I spoke to him a week ago (from what I can recall, anyway.) He said younger patients typically respond better. We know this. This has been confirmed be various sources. He said of all the CFS patients that went to the clinic, only two had absolutely no response whatsoever. Though I do believe he told me, I do not remember their age or level of disability. He said most people that have went are "older". 40's+?

Dr.Cheney uses an adapted form of a scale called the "Karnofsky Performance Score (KPS)"... scale. It is "used to asses stem cell effects on function (as opposed to symptoms) in CFS." I would post the scale, however it part of Cheney's paid subscription newsletter and I cannot find the version (perhaps it's his own proprietary, as I said, adapted version of the scale.)

Basically, though, it's labeled from a KPS of a 10, basically meaning you're in intensive care, all the way to a KPS or 100 meaning you can do anything any other fully functional, healthy person should be able to do.

Dr.Paz said the majority see a boost of 10-20 KPS on the scale, others more and as I noted, 2 nothing at all.

The following from Cheney's site I believe can be posted because you do not have to be a paid subscriber to view it. It is part of a slightly longer article that goes into the detail of the KPS scale:

We are now close to 20 CFS patients who have received stem cell transfusions primarily in Panama at SCI and coming up on 8 with 12-18 months of follow-up in June. We have three functional cures (KPS of 75-80) both clinically and by ETM, all under 36 years of age (N=3). A KPS of 75 means they can work full time with accommodation and 80 means they can work full time without accommodation in their job of choice. All three started at KPS’s of 50(2) to 60(1). Two of these functional cures have been sick for almost 20 years, one for 8 years, two are male and one is female. By summer, I hope to be in a position to publish the overall results at one year of follow-up. The early effects following stem cell transfusions are not that impressive functionally until about three to six months out, earlier for those under 40 and later for those over 40. All, however, show significant...

Sorry, that's where it cuts off. Please go to his site to at least give it hits so I don't feel guilty about posting this (even though it's freely open to the public). http://www.cheneyresearch.com/category/subscribers

Hope that gives some a little more insight than they may not previously have had.

--------------

In any case, as stated in the beginning of this post, I will still be leaving to the SCI in Panama on the 26th. And as Mr.Kite stated, you have my that I will be utterly (and brutally if need be) honest and give you every speck of detail I can think of to the best of my abilities about the whole experience once I come back, assuming of course that I'm not a drooling vegetable. (I'm joking... for the most part... I apologize if anyone finds that a little crude. I know my Mom gets upset when I say similar things, even in jest.)

Anyway, think I'll go collapse now.

Take care all,

Ben

(Wow. You guys posted a bunch while I was slowly working at this post. Dang. Well, for context, since some of this discussion is outdated, I had started it after Mr.Kite's first post on this page. Oh, and joey, I've been slowly working on a reply back to your PM over the past couple days when I had energy. Just want you to know I got it and I will get my reply to you soon... despite it taking so long though, don't expect it to be terribly deep or insightful. Sorry. Still, you brought up some interesting points that I wanted to at least respond to, if not add anything profound.)

 

[jeffrez]

No feel free to ask questions. I'm just saying your apparent wits could go a lot further by talking to the clinic doctors yourself: I don't have the energy to be a conduit.

Hey leave my feelings out of this. They don't like mixing with highbrow types

I plan to talk to the clinic doctors, absolutely. dipic told me they didn't really want to be talked to until you fill out an application, and then they contact you. I haven't filled out an application yet, so I haven't talked to them yet. But I plan to talk to the doctors, of course. That goes without saying, I would hope.

In the meantime, other questions tend to arise. That's only natural. We want to get as much information as we can. People who are legitimate don't mind questions, any and all. It's only people who have something to hide or are trying to pull a scam who don't like questions. Are you saying Molly and/or the clinic have something to hide or are not legitimate?

 

[mojoey]

I think everyone else but you knows what I'm saying. Sorry I only play mind-games with my girlfriend

Good day sir.

 

[mojoey]

Hey Ben,

Thanks again for posting. Great point about the infinitesimal chance that a Cheney patient would post here, in arguably the most used CFS forum on the internet.

We're all thankful that another non-Cheney patient is going and is therefore not susceptible to silencing. You're definitely a de facto pioneer by posting honestly about your experience, and I think you'll help a lot of patients here that don't have the cognitive abilities to do their own research understand the ins and outs of the process and whether this treatment can help someone who is relatively young but still on the severe end of the disability scale.

I look forward to reading all about it.

-j

 

[jeffrez]

I think everyone else but you knows what I'm saying. Sorry I only play mind-games with my girlfriend

Good day sir.

I'm not really sure anyone knows what you're saying, because you've just been throwing around innuendo about "verbal stoning" and "backchannel" messages, implying that people shouldn't be questioning any and all aspects of this process. My allegiance is to myself (and my bank account). I'll ask and continue to ask any questions I see fit. If people are legitimate, they aren't going to mind. Sorry again if you don't like it.

 

[dipic]

The majority getting 10 to 20 points doesn't sound like a whole lot to me, my impression was that the results were mostly a little better than that. But if you are starting at say a 40 or 50 and get 20, that might just edge you into the "work with accommodations" level. Even that would be an improvement. But it does add more perspective on what your x thousands is potentially buying. Man, this illness sucks!!

Please don't quote me on that though. All this info was acquired when I talked to Dr.Paz, probably two weeks ago now? I talked and listened to him on speaker phone through my Dad's piece of crap cell phone, and then processed what I could of it through my illness impaired piece of crap brain. :Retro tongue:

So anything that I said Dr.Paz said, don't take for fact. The numbers may have been higher. I know they were low for some people, others did better. I should have emphasized this more in my post rather than state it sort of matter of factly. Sorry, tired brain here.

Anyway, what I (and I'm sure you and everyone else invested in this) REALLY want is exact data; exact numbers of every patient: Their age, their KPS before and after treatment. Length of benefit (or period of time it took to start noticing any.) Number of cells injected. etc. "I want a full list, dammit!" Alas.

Cheney says in his the newsletter I quoted in my previous post that "By summer, I hope to be in a position to publish the overall results at one year of follow-up."

What that means and entails, exactly, I don't know. It's not clear in the context of his post.

Would love to have more info. But again, for me anyway, I have decided not to wait (god only knows how long we'd have to wait to get what we really want anyway.)

Peace,
Ben

 

[mojoey]

"If people are legitimate, they aren't going to mind (accusations about their character and legitimacy)"

Huh? Let's not speak for others Mr.Saint.

Also, this is the last time I'm gonna repeat myself: no one ever told you to stop asking questions about the treatment and patient outcomes.

 

[jeffrez]

"If people are legitimate, they aren't going to mind (accusations about their character and legitimacy)"

Huh? Let's not speak for others Mr.Saint.

Also, this is the last time I'm gonna repeat myself: no one ever told you to stop asking questions about the treatment and patient outcomes.

Accusations? I didn't know Molly from Jane Doe. I don't know who this random person is showing up on a message board to tell me about an expensive and controversial therapy she CLAIMED to have gotten, one for which it's not uncommon to get scammed, as Dr. Cheney himself even strongly warns about. Of course I'm going to question who this person is. Anyone with a brain would do that. The ones who don't end up like those folks on 60 Minutes bilked out of their life savings.

And for the record, when I actually SPOKE to Molly, she completely understood my concerns 100 percent, said it was a non-issue and not to worry about it in the least. She is not offended about anything at all. All that was even weeks and weeks ago, water long gone under the bridge. So you are really out of line, in my opinion.

 

[mojoey]

My whole point for bringing up the treatment Molly has gotten was to use it as an explanation for why recovered patients oftentimes don't post. They don't want to deal with it, and you can't tell me they really have a moral prerogative to do it if they're gonna be sniffed out in such fashion. I understand both sides; I was just delineating some subtleties of human nature.

My second point was providing the rationale for why the cost is a relative bargain.

Nowhere in or in between the lines did I suggest patients should not do their homework; in fact I suggested the exact opposite.

I think we'd be doing everyone a favor by putting this to rest.

 

[jeffrez]

My whole point for bringing up the treatment Molly has gotten was to use it as an explanation for why recovered patients oftentimes don't post. They don't want to deal with it, and you can't tell me they really have a moral prerogative to do it if they're gonna be sniffed out in such fashion. I understand both sides; I was just delineating some subtleties of human nature.

My second point was providing the rationale for why the cost is a relative bargain.

Nowhere in or in between the lines did I suggest patients should not do their homework; in fact I suggested the exact opposite.

I think we'd be doing everyone a favor by putting this to rest.

I think it was "resting" just fine until you introduced all your rhetoric about "verbal stoning" and the rest of it.

If you think a person who comes on a CFS forum saying they got XYZ treatment or ABC supplement and in effect it basically "cured" them, and that people hearing that aren't going to ask questions about who they are, where they went, what they did, and a million other things, I don't know what to tell you. Especially when that treatment costs many thousands of dollars. You'd have to be out of your mind to not question that person. If I posted to a CFS forum that I was "cured" from protocol X -- which by the way will only cost you $XX thousands of dollars and there is no official research on it, only hearsay -- I would expect people to question that, absolutely. Are you kidding? I would expect them to dissect every last word under a microscope.

 

[Misfit Toy]

I heard that there was a lot of drama on here recently and over differing opinions. It's not right and yet here it is again. I said that it is a lot of money and to mOJoey..... it is a lot of money for those without money. We don't need to argue about "my" finances. Not everybody wants to spend $10,000 on something that might not work. I don't want to come on here, another forum, and feel like I can't say that. IT's a fact, and as you say, anyone with a "rational mind would consider it a steal"...excuse me, are you saying I am not rational or those that question this aren't rational? Watch your tongue or your typing and keep your righteous opinions to yourself.

Your opinion is not the only one that matters and if you differ in opinions to others, no problem, but no need to act supreme to all of us on here including Mr. Kite. And calling anyone who doesn't think like you, irrational. No thanks.

No one is asking anyone to be a conduit. If you are choosing to do that, that is your choice. No one can "make" anyone do anything.

I am sorry that Molly has been picked on or that people are stoning her off of speaking. It is a sad day for those of us who are literally dying to know how those on this protocol are doing. I am glad she risked her neck and sad for her at the same time. Hopefully the moderators will catch what is going on here.

PEACE.

 

[jeffrez]

I heard that there was a lot of drama on here recently and over differing opinions. It's not right and yet here it is again. I said that it is a lot of money and to mOJoey..... it is a lot of money for those without money. We don't need to argue about "my" finances. Not everybody wants to spend $10,000 on something that might not work. I don't want to come on here, another forum, and feel like I can't say that. IT's a fact, and as you say, anyone with a "rational mind would consider it a steal"...excuse me, are you saying I am not rational or those that question this aren't rational? Watch your tongue or your typing and keep your righteous opinions to yourself.

Your opinion is not the only one that matters and if you differ in opinions to others, no problem, but no need to act supreme to all of us on here including Mr. Kite. And calling anyone who doesn't think like you, irrational. No thanks.

No one is asking anyone to be a conduit. If you are choosing to do that, that is your choice. No one can "make" anyone do anything.

I am sorry that Molly has been picked on or that people are stoning her off of speaking. It is a sad day for those of us who are literally dying to know how those on this protocol are doing. I am glad she risked her neck and sad for her at the same time. Hopefully the moderators will catch what is going on here.

PEACE.

Thanks Spitfire, but no need for the moderators, I think. ;-) We just have a difference of opinion. mjoey seems to believe we should take the word at face value of anyone who logs on here and says they were essentially cured, massively improved, etc. - however you want to say it, from a treatment they said they had. While on the other hand, I believe it's important to "Trust, but verify." mj0ey seems to want to characterize the process of questioning a person's legitimacy as "verbally stoning" and "accusing" them, while I just see it as a natural question you would ask about anything like this. No one has "accused" anyone of anything, we're just trying to get informed fwiw to be able to make rational and intelligent decisions.

Like I said, I had spoken to Molly weeks ago (is it weeks by now? I lose track of time ) and all that is water under the bridge a long time ago anyway. So why it's even coming up now I have no idea. I have other questions as we go along in this, as I'm sure a lot of us do, but I'm confident those will also be answered in time. There's only so much you can get to in a day, so as things unfold we find out more, like from dipic's recent post. That's fine.

So I'm sorry mj0ey that I guess I'm just not as much of a trusting person at heart as apparently you want me to be, but after spending close to $100,000 already with NO results to me this now is a lot of money. Probably literally the difference between life and death, and I am taking NO ONE'S word at face value. I don't even entirely trust Cheney, to be honest. But whatever. Too tired now really to continue, sorry.

 

[mojoey]

Spitfire--

No I don't think you are irrational Spitfire, and I apologize for the way that came out. I will change my wording. We are all free to express our opinions here. I outlined my opinion of why this isn't that much money compared to how much we already spent on therapies that obviously have not helped us much. Feel free to agree of disagree. I never told you or anyone else to keep your opinions to yourself.

I already knew what kind of response I would get when I made the cost-vs-benefit argument of 10k in light of how much many of us already spend to get well a year. I read that you were considering ampligen and stem cells, so obviously you're in the business of truly trying to get well just as I am. I acknowledged that finances are always a sensitive subject for CFS patients and it is for me too, but I still stick to my opinion that I would take out a loan if I had to. Once again, feel free to agree or disagree, but I don't think I said anything out of line. I admit I did state an opinion that many people probably do not want to hear. If moderation is necessary in this instance, so be it.

 

[mojoey]

Mr.Kite--

I believe that if you'd actually read what I wrote carefully, this would be over:

My whole point for bringing up the treatment Molly has gotten was to use it as an explanation for why recovered patients oftentimes don't post. They don't want to deal with it, and you can't tell me they really have a moral prerogative to do it if they're gonna be sniffed out in such fashion. I understand both sides; I was just delineating some subtleties of human nature.

 

[jeffrez]

Mr.Kite--

I believe that if you'd actually read what I wrote carefully, this would be over:

So you never said anything about "verbally stoning," "accusing," "flak," etc.? Okay, sorry, I guess I did misread you.

 

[mojoey]

Yes but that doesn't contradict my point at all. Anyway I'm tired myself, so you can pay selective attention to words or you can take my entire points for what they are. I can't decide for you.

This is my final correspondence with you. I want this thread to get back on track. Hopefully you're in agreement.

 

[Cort]

Moderator - This thread has gotten a little argumentative - I think mOJoey and Mr. Kite have made their perspectives clear on their issue - please no more correspondence on it; lets move on to other aspects of Stem Cells. Thanks

Good luck dipic on your treatment!

Excuse me for a question that may have already been answered - has Dr. Cheney commented publicly on the Costa Rica Clinic closing? Did many of his patients go there?

 

[kcleejackson]

Moderator - This thread has gotten a little argumentative - I think mOJoey and Mr. Kite have made their perspectives clear on their issue - please no more correspondence on it; lets move on to other aspects of Stem Cells. Thanks

Good luck dipic on your treatment!

Excuse me for a question that may have already been answered - has Dr. Cheney commented publicly on the Costa Rica Clinic closing? Did many of his patients go there?

This is what I found regarding the stem cell office closing....

http://www.advfn.com/news_Costa-Rican-Stem-Cell-Treatment-Facility-to-Close_43107314.html

http://www.tmcnet.com/usubmit/2010/06/04/4827264.htm

 

[dipic]

I'm very confused here. The first article states in the first couple lines:

The largest stem cell treatment clinic in Costa Rica has shut its doors, citing a letter from the Health Ministry prohibiting treatment using embryonic cells.

The Institute of Cellular Medicine said it would move all operations to Panama to continue to "promote the therapeutic science of embryonic cells.

Then the very last line:

Avila said the clinic could have continued operations using adult stem cells, but "the only thing they can't do is use embryonic stem cells as a form of treatment because the health ministry prohibits it."

Uh, what? I thought neither the ICM nor the SCI in Panama used embryonic stem cells. That's what they promote on their site (the use of only adult stem cells) and even what the clinic docs told me.

Even their site FAQ states:

What about the ethical issues involved with stem cell therapy?
According to several religious denominations, adult stem cells are not encumbered by any ethical or moral dilemmas. Those ethical issues which apply to fetal and embryonic stem cells do not apply to adult stem cells.

Again, on their site they promote:

The Stem Cell Institute is a cutting edge medical clinic that uses adult stem cells to treat chronic diseases for which there are inadequate standard therapies

So, what's going on here?


edit: I'm sorry, that info was from their Panama site: http://www.cellmedicine.com/

I can't seem to find their Costa Rica site on google any longer. I remember the layout of both sites were practically identical. Perhaps that didn't apply to the content. Maybe it was an assumption on my part that the CR and Panama clinics worked exactly the same, the only difference being the location? Does anyone know for certain if the ICM in CR used embryonic stem cells for treatment? Hm... again, apologies for the mix up with the sites.

 

[dhearns90]

Dipic - I am pretty sure the article is just wrong.