Oh CCSVI - why won't you die???? Maybe if we inject you with stem cells....

Every once and awhile, some search engine finds my blog and I get dive bombed by CCSVI protagonists. This time I also got messages from those recommending stem cell transfusions. Which, I must quickly add, have even less science support than CCSVI does, and which have been tied to rather severe side effects, unlike CCSVI overall (though don't get me started about stenting, which seems to have a shockingly high fatality rate, or the rate of restenosing, which also seems unacceptably high)
Strangely, these dive bombings come from places where neither procedure is allowed on the countries' own people.

What does that tell us?

I dunno, but my "sucker alert" becomes activated. You know - that little beeping sound that tells you there are people out there seeking to take advantage of desperate folks with deep pockets - or worse still, desperate folks with shallow pockets, who go broke trying to cure this dratted disorienting disabling disease.

Now, I can understand the desperate people. I've been there. Heck, I already have my suicide plan in place and review it regularly. Not for use now, I add - heck, I can't even decide if I should get rid of my dog. No, it's for later. Just in case.

I don't understand the people on the other side. The ones who seem willing to rip off sick people for unproven and even dangerous therapies (by this I mean stem cell treatments and stenting).

The pro-CCSVI people go on about how big pharma loves we MS endurers cos they make tons of money off of us. Well, follow the money, people. Look at what CCSVI has brought providers. Look at what repeated treatments bring them. Look at how they treat and then send any complications back home where they don't have to pay the costs. Just saying'.

I know, some people say they've had wonderful results from CCSVI. And they may well have. God love 'em. And I'm happy for them. I'm less happy about the paranoid rantings against anyone who raises a question about the procedure - that just makes we MS people sound like crazy people and I have had my care suffer because of this.

Me, I'm waiting for the science. And yes, each and every day I lose a bit. Like sands through an hourglass, as the old soap used to say, my abilities slip endlessly through the narrow neck of no return. I exercise my body and my mind in an attempt to stall the flow. I take my medicines like a good patient, most of the time. But I'm not a pawn of big pharma and I fight taking any extra meds. I do my research and am glad I took the time to study nursing and epidemiology and health policy so that I can, in fact, usually understand what I am reading.

I know the tipping point may be just around the corner, where I can no longer walk dependably. But it's not intolerable yet. I am alone, so must learn to be dependent, and this is killing my soul. Or making it grow. I haven't figured that part out yet.

I'm not yet willing to give some manipulative money grubbing individual my carefully saved thousands of dollars for a treatment that may well not work, only to be left with not enough money to afford the wheelchair I will now need. I've seen far too much of that out there, and it breaks my heart.

If I do eventually succumb to temptation and try out CCSVI, there's no way I'd agree to stents. There's nothing good to say about them.

And I damn well will not give my money to someone who plans to inject me with stem cells - those cells that can turn into ANYTHING and that don't show any promise unless you actually kill off all the regular immune system in your body. Even then, the risk of death is high high high.

Listen to your sucker alert, will you? Let's stay safe out there.

to all those travelling for CCSVI and stem cell treatments

Oh, how I wish you wouldn't. There are so many people just out making a buck off of you. It breaks my heart. And I know about desperation about MS, really. My own life has been destroyed.

Offshore Stem Cell Clinics Sell Hope, Not Science

by RICHARD KNOX

Dr. George Q. Daley sits at his keyboard and types "stem cell treatments." In less than a second he gets 13.4 million Google hits.

"Here's a website where they claim over 1,500 patients treated," says Daley, one of the world's foremost stem cell researchers. "That doesn't mean they've been treated successfully. It's 'buyer beware!'"

But consumers have a hard time sorting out all the stem cell claims out there. Websites often look professional and convincing. Typically they feature distinguished-looking white-coated doctors posed in front of bookcases, technicians holding up flasks with mysterious colored liquids, and happy, healthy-looking clients cavorting on beaches.

Often these clinics are based in the Caribbean, the Ukraine, China, South America. Sometimes it's impossible to tell just where they are; to contact them, you fill out an online form and they get back to you. The US-based websites typically send their clients offshore for treatment not approved by the US Food and Drug Administration.

EnlargeRichard Knox/NPR

Dr. George Daley is one of the world's leading stem cell researchers. He holds a file of letters from desperate people seeking stem cell cures. Daley warns patients not to fall for foreign stem cell clinics which sell unproven treatments at a high price.

False Promise

These days stem cell clinics offer cures for practically everything that ails humans – spinal cord injury, heart disease, multiple sclerosis, Parkinson's. "Everything from A to Z," Daley says.

Unfortunately, Daley says, stem cell therapy is effective for only a few blood disorders, such as leukemias and thalassemia.

"We do about 80 of these a year, and about half the time we can cure the patient," Daley says. "The problem is, if you have diabetes or Lou Gehrig's disease or Parkinson's, stem cell treatments are not the answer today. We hope they will be in the future. But they aren't today."

There are a growing number of legitimate human experiments with stem cells for disorders such as heart failure, spinal cord injury and neurological disease, both in the United States and abroad. Experts say these clinical trials should be labeled as experiments. And prospective volunteers should look for telltale safeguards, such as oversight by ethics boards and approval by governmental regulatory authorities.

Premature claims of stem-cell therapy success is driven by a certain magical aura surrounding stem cells. Under certain laboratory conditions these cells can turn into almost any type of tissue. They promise regeneration. To desperate patients with incurable disorders, that notion is irresistible.

(see the rest of the article by clicking the link)