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.

Is it all about the poo?

My brother sent me on this podcast http://feedproxy.google.com/~r/freakonomicsradio/~5/VZ-2GFkkQrU/freakonomics_podcast030211.mp3  from freakonomics radio about how a man with MS was "cured" by getting a fecal transplant.  Apparently, if we have bad germs in our guts, we can get some good germs from someone else's poo and allow them to inhabit our guts.  This will remove the harmful bacteria that live there and therefore return us to health. Assuming they beat up our bacteria and take over.

It's an interesting point.  If we are, as described in the podcast, 10% us and 90% bacteria, there's something to be said about reorganizing our friendly colonists (pun intended) to be more friendly. And, after all, that discovery of H. Pylori and ulcer causation revolutionized the treatment of ulcers.

And, truth be told, there is much research to indicate that MS is probably infection-related, given that it involves an autoimmune response that must be triggered somehow.

I'm not sure about having a poo transplant, though. There's a lot of nasty stuff in poo, much of it I would not want to visit.  Montezuma's revenge, cholera, who knows what else. I'm reminded of the rabbits of Australia - brought on for hunting, reproduced like mad, then they had to treat the rabbit problem, and lost control of that, too.

And I can't help but wonder if some of the same magic thinking is going on here that hangs around those in support of cleanses. Our digestive tract is full of little creatures that change and reproduce and wriggle about depending on what environment we give them. I think they'd be hard to manage long term.

The fellow they interviewed said that he was all better after his treatment, but time will tell. Relapsing-remitting MS is a trickster that way - you can think you have it beaten and then it sneaks up on you from behind (har har). I hope he stays well. But it's another tale of anecdote not making scientific proof.

I'm not signing up for the randomized controlled trial, though.
Ewwww.

CCSVI and the terrible temptations

Ah, CCSVI. The solution to MS, the advertising-ready "Liberation procedure", the legions of fanatic followers racing all over the planet for treatment.

Sounds suspiciously like the stem cell tourists of 6 months ago....

I really no longer know what to think about CCSVI. Initially, I thought it sounded sensible, like an explanation for the initial start of MS. Why wouldn't it be reasonable that iron deposits from stenosis led to inflammation led to MS?

But I'm a scientist at heart - degrees in epidemiology, etc. And the study by Zamboni left me scratching my head. I wanted more info. I wanted a bigger study. I wanted double blind stuff. And I wanted to see the results after more than a few months. MS, unpredictable disease that it is, can look good for a while no matter what one does, or doesn't do, about it.

And I knew from my work in health care that we just didn't have the resources here in Canada to take it on. We don't have enough trained technologists to run the MRI machines, or radiologists to analyze the results. Heavens, we don't even have the right MRI machines, or enough of them.

I met with some of the local advocates for CCSVI here, who were banging the drum for research to be done here, now, treatment to be done here, now, and the MS Society needs to be pistol whipped for not changing all research funding over to this, now.

It was unreasonable, and childish, and overwhelmingly selfish. Look, I'm not going to push someone with cancer out of the MRI tube just so I can have it. Most of my family died of cancer - and it was horrible - and I could never say that my existence, trying as it often is, is worse than what they suffered.

What stunned me was that some of these people were the same ones who were abusing the docs for not doing stem cell treatments on them, now, right now, not six months previous.

Has it occurred to any of these folks that there are others in need? Or that there are good reasons not to rush into treatment?

I suggested that advocacy regarding increasing the numbers of MRI machines and technicians and radiologists might be a good place to start, and that perhaps by partnering with the Cancer society or the ALS society or the Alzheimer's society, we might have a stronger voice.

But no. We want it all for US, only us. Sharing might mean waiting.

And then we complain about being guinea pigs.

What the hell do we want?

Occasionally, I want a cure, too. And I get tempted to cash in my savings and go for CCSVI treatment, too. But what if I do, use up all my money, and it doesn't help - I live in greater poverty....

For a balanced review from the MS Society http://www.msanswers.ca/

For a webcast: MS Society: April 7th