Back in December I posted here and at Daily Kos about CCSVI, or Chronic Cerebrospinal Venous Insufficiency, and how new research is pointing to a strong connection to Multiple Sclerosis. It has been shown via several studies that a large percentage of people with MS have stenosis in the jugular and/or azygous veins. Many patients have been treated in different parts of the world with simple balloon angioplasty or in some cases, stenting. A majority of them are showing improvement. Note that for someone stricken with progressive MS, improvement can simply mean not getting any worse. For others, it's getting up out of their wheelchair and using a walker again for the first time in years. Or regaining enough balance to not only have improved gait, but riding a bike again when the day before your procedure that would have been impossible. You need to understand how much of a miracle these small improvements are when you've been going downhill either steadily or in spurts, and all the drugs they've tried on you have stopped working or you couldn't tolerate the side effects.
When you are diagnosed with MS, what you hear mostly from your neurologist is "We don't know". Truly, they know very little about it. How did I get it? We don't know. Will I get better? We don't know. Will any drugs stop it? 30% chance, and that'll be up to $20,000 per year to try. What triggers the immume response? We don't know. Is it truly an autoimmune disease, or an inflammatory disease, or a virus, or what? We don't know. I heard lately on CTV and the internet that it might actually be connected to a vascular disorder, and researchers have been looking at that theory since the 19th century, and that a simple and common procedure performed by a vascular surgeon is showing to help alleviate symptoms. NOOOOOOOO! It's a hoax!
We all know what happens when powerful and wealthy parties who have a lot on the line get their panties in a bunch because they think someone's trying to eat their lunch. Let the spin begin!
Luanne Metz, an Edmontonbased MS specialist, said the results suggest the vein narrowing could be a risk factor for the disease, but not its cause.
"What it really does is it really warns that people need to be cautious," the neurologist said.
Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital, said he would advise against patients even getting tested.
"There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," he said. "If there is no treatment for this condition, there is no need to detect it."
Both he and Dr. Freedman also suggested that Dr. Ziadinov may be in a conflict of interest, given that his Buffalo Neuroimaging Analysis Center is now offering neck scans to MS patients for fees of $4,500 to $6,000.
Luanne Metz is a big player in big drug studies. I'm just sayin'. Her hackles were up because the day after the original CTV story aired in November, her poor downtrodden office staff had to - get this - field a lot of calls from interested and/or pissed off patients! The horror!
"Many of the callers were very abusive, right from the start," said Dr. Luanne Metz, director of the Foothills Hospital MS clinic in Calgary. "Nasty to the nurses, accusing us of withholding treatment or playing Big Brother and not letting people have what they want, and arguing and arguing and arguing.
I suggest that Dr. Metz look into voicemail. I hear it's the wave of the future. Maybe she can get one of her pharmaceutical contributors to pony up for the $8 monthly expense.
At Dr. Metz's Calgary office, staff were so busy handling anxious Zamboni calls, patients with other, serious concerns had trouble getting through, she said. Some stopped taking their drugs, now convinced the real problem was vein narrowings. Going off one key medication, Tysabri, could have lifelong consequences, as patients who stop and start it again often develop allergies to the drug, Dr. Metz said.
See, here's another thing about Tysabri. Going ON it could very well mean developing a fatal brain infection or significant liver damage.
And then we have Dr. Freedman. He's been a very vocal opponent of Dr. Zamboni's theory, going so far as to call it a hoax.
Most MS neurologists interviewed recently said they welcome the expanded research into Dr. Zamboni's theory, if only to settle the controversy; others lament what they consider a media-driven distraction. "There have been reverberations across the world as a result of that media story," said Dr. Mark Freedman, a neurologist at Ottawa Hospital and a top MS researcher. "I think there are going to be millions of dollars spent now to follow a hoax.... If I thought for one instant there was substance to this, I'd be all over it. But there really is very, very vague backing for the whole theory."
Freedman is ever so concerned about harm being done to MS patients with super weird and exotic balloon angioplasty and stenting. Sure. That's why he's doing UNPROVEN stem cell research in which the patient first receives chemotherapy to obliterate their entire immune system, and then have stem cells implanted. On 18 patients. One of whom died from the chemo.
Dr. Freedman is also ever so concerned about patients spending their money to get testing and angioplasty outside of an almighty blinded 20-yr. clinical trial. Yes I'm sure his very biggest concern is MS patients, not himself or his own research. I mean, it's not just CCSVI he's ever so concerned over, it's other stem cell researchers too.
And what has to be the most hypocritical statement so far of 2009, Dr. Freedman, the one in charge of the stem cell study in Ottawa takes a shot at his foreign counterparts in stem cell research.
Dr. Freedman is concerned that patients are forking over large amounts of money for unproven treatments like this, especially when there is no follow-up care or monitoring when they get home.
"It's dangerous in the wrong hands," he said. "The only reason these places could be in existence is to take people's money and offer them something that's unproven."
That is ridiculous. A doctor who is doing an unproven therapy himself (in which one person died in a small 18 person study), says that stem cell therapy somewhere else is dangerous and offering something that's unproven? Isn't that what you are doing Dr. Freedman? And I'm fairly certain you aren't doing the $4 million dollar study for free. This study is funded by the MS Scientific Research Foundation, I'm guessing this is a mixture of grants from the Canadian government (taxpayers) and donations.
Yes, yes. Everyone in medical research is exploiting desperate patients for their money except Dr. Freedman. And maybe Dr. Metz. Got it.
Another thing Freedman goes on about is proper clinical trials for CCSVI procedure. He says that in order for it to be scientifically sound, you'd have to do a sham procedure on a control group to rule out placebo effect. I wonder if he did that with his chemo/stem cell group of 18? How in the fuck do you give fake chemo to people? Riddle me that, doc. And if you can't, then how can you say your stem cell research is proven over and above the alleged 50% placebo effect? Asshole.
And about that placebo effect. Freedman claims that if you believe strongly in something you'll get better. Yeah, tell that to the dude I recently met with MS who shakes so hard he can barely walk, until he smokes a joint which is the only drug that makes the shaking stop albeit temporarily. Fucker, tell me that guy just doesn't want to get better bad enough. Anyone who thinks people with MS just need to think positively or take a goddam sugar pill and then if they want to bad enough they'll magically get better, a hearty FUCK YOU and a pox upon your house. You can cram your inexplicable placebo effect and/or new-age magical thinking straight up your ass.
Some media here in Canada has been right out in front of this and I have to give a begrudging shout out to CTV and W5 for presenting the most comprehensive and even-handed treatment of this issue. Otherwise, the media is pretty much doing the usual stenographer thing, not questioning statistics quoted by the doctors opposed to CCSVI, not fact checking, etc. People publicly smear a colleague doing legitimate research by calling his work a hoax and nobody questions that. They smear and spin with abandon. They belittle and patronize patients and then out of the other side of their mouths they "feel our pain" and are oh-so compassionate about our suffering. I call bullshit.
Pay attention because this is important. Nobody - and I mean nobody - has died so far from having their stenosised veins fixed. See, these "experts" keep saying that this is dangerous, uncharted territory. Some even repeat the claim that 2 people have died. Or that one person died. Depends on the source, you see, and neither number is true. ONE patient who had a stent put in by Dr. Dake at Stanford had the stent migrate. He required open heart surgery but he did not die. Another of Dr. Dake's patients died of a cerebral brain hemorrage, which her family says is not related to the procedure but to a fatal reaction to blood thinners, due to a genetic condition. Keep in mind also that this was using stents, not balloon angioplasty which is what Dr. Zamboni himself recommends at this time. Stents are however being used by some with great success.
Dr. Freedman's unproven radical treatment killed one person out of 18. And yet he is the one who is awarded millions of dollars to continue his dangerous research. Know what the MS Society has agreed to fork over for CCSVI research? $200,000 per study. It's almost as fucking insulting as Harper's beer and popcorn per child tax credit.
Lest you think that Dr.'s Metz and Freedman are the only people smearing Zamboni and any who dare to take an interest in his fascinating and promising research and potential treatment for MS, I give you self-appointed Zamboni nemesis Colin Rose. Allegedly this man is on the medical school faculty at McGill. He has taken it upon himself to literally stalk any whif of news about CCSVI online and tell the world that Zamboni is a hack, a quack, doing junk science, and is an occultist. Or something. Anything to make you think that HE, the almighty Dr. Rose, blogging cardiologist, knows more about vasculature than, let's say, the director of the Vascular Diseases Center at the University of Ferrara, Italy. Mmmmkay.
Due to the proliferation of “CCSVI” (more than 300,00 hits on Google) since CTVGlobemedia ignited the firestorm of junk science I am forced to add a new blog to reply to the latest outbreaks of hysteria. Our earlier blog comments in general on Zamboni’s fantasy and events before today.
True believers of “CCSVI” had been blogging excitedly about a press conference by a Dr. Zivadinov at the University of Buffalo who somehow managed to fund a Doppler ultrasound study of the neck veins of MS patients and normal volunteers. He may have received funding from Fondazione Hilarescere, a foundation run by Zamboni that doles out money to himself and his friends.
Fantasy, occult, hysteria, accusations of conflict of interest. This is supposedly one doctor talking about another's published research. Rose continually puts the scare quotes around CCSVI, as if it weren't real. Ahem. (bold added)
In another development, an international group of doctors who specialize in disorders of the veins has issued a consensus document on the diagnosis and treatment of these problems, including CCSVI. The International Union of Phlebology officially classified CCSVI as a congenital vascular malformation, outlining official guidelines for diagnosis and treatment.
Dr. James Laredo, a vascular surgeon at Georgetown University Hospital, and one of the authors of the statement, said the members of the group voted unanimously in favour of including CCSVI as a venous malformation.
Mr. Rose thinks this group is an evil cabal of varicoise vein surgeons who are attempting to create a make-work project for their occult brethren. Or something. Anyway, this guy Rose is clearly obsessed with smearing Dr. Zamboni and CCSVI, but you'd be hard pressed to say why. He doesn't have MS, as far as I can tell. He doesn't treat MS patients. His field is cardiology, teaching, and his hobby appears to be taking pictures of art deco stuff and fat people so he can shame them on his blog. Seriously. This man has joined nearly every CCSVI related (and all patient-centred) group on Facebook. He shits all over the comment sections, telling sick people that they're hysterical and that "ccsvi" is a hoax, smears any doctors and researchers in fields that are nowhere near his specialty, and basically upsets and serially harasses a bunch of people who are advised to avoid any kind of stress. Once the administrator of that particular group has had enough and kicks him off, he moves on to the next where he lathers, rinses, and repeats until he's removed. This has been going on ceaselessly since November when the CTV story first came out. Almost any time there's a CCSVI story in the press, you can count on Mr. Rose or sometimes "cardioguy" to show up, pimp his blog, and tell everyone that he knows more about veins and brains than the International Union of Phlebology or any neurologist who is interested in CCSVI.
Here's a good one. I remember reading one comment thread on a Facebook group where it was suggested to Rose that he attend an upcoming Ontario conference where he could confront Dr. Zamboni about his theory in person. His response was that surely Zamboni had read his blog refuting his theory and that he was welcome to come to him to defend it! BWAHAHAHAHAHAHA! Talk about delusions of grandeur, eh? He's openly accused UBC of exploiting CCSVI "hysteria" to raise funds for an upgraded MRI machine. Yeah, they've designed a fake study because they want a new toy. I'm telling you, that this guy hasn't been sued into oblivion for libel yet just goes to show you how insignificant his opinion on these matters really is. But he's out there, for some unknown and likely diagnosable reason, acting as a one man smear machine against Dr. Zamboni.
Did you know that the MS drug "market" is $6 billion per year, and projected to grow? That's "billion" with a "b". There are some bright opportunities for investors, isn't that just fucking awesome? I mean, it's not like drug companies throw their weight around with all that money or anything.
Here's what I find very interesting. And by interesting I mean completely fucked up. If I were extremely overweight, I could get gastric bypass surgery on the grounds that I might get diabetes or heart disease. There is no shortage of ways I could have a doctor carve me up and sew me back together for no reason other than I don't feel pretty or look porno enough. These things are dangerous. There is a risk of death or serious complication. And yet, they are done without question and without a coterie of concern trolls wailing and gnashing their teeth over protecting the poor, sick patients. But if a person with Mulitiple Sclerosis wants to get tested for a vascular condition that certainly appears to go hand-in-hand with their disease process, and upon that testing and confirmation of stenosis wants to get a simple balloon angioplasty, it's a big fat fucking scary experimental surgery that MUST be denied for the good of the patient, even though the now-reams of ancedotal evidence report an immediate reduction of many symptoms as long as the veins don't restenosis.
Fuckety fuck. Even Dr. Zamboni himself, who has NEVER said that this was a cure for MS and is urging utmost caution and more research, even advising against stents and sticking with safer angioplasty, is asking that doctors and health systems at least treat the most severely affected patients on compassionate grounds in the hopes that they find some relief from their symptoms and maybe don't get worse. Yanno, I could see if this was something radical, like organ or stem cell transplant. But it's not. It's really not even surgery - it's a fairly routine procedure that when done by a competent doctor is quite safe. Let me tell you, most neurologists are very quick to push potentially harmful off-label prescriptions on you with NO PROOF that they will work. They do it on the chance that it might slow the progression of the disease. I know from experience. They'll give you injectible drugs that you are supposed to take indefinitely or until it suddenly stops working, that have severe side effects and cost more than a lot of people make in a year on the chance that it might slow the progression of the disease. I think I've mentioned that chance is only about 30%. And yet they're approved and prescribed at the drop of a hat. But angioplasty? NOOOOOOOOOOOOO!
Smack of the clue bat to the field of neurology - you don't fucking own me.
Smack of the clue bat to the National MS Society - you don't fucking own me either. Nor do you speak for me.
Believe me, I've got plenty more to report and opine on regarding CCSVI, MS, patients rights, and the bullshit politics of medical research culture. Stay tuned for part 2. I'm just getting warmed up.