General Discussions > Skepticism / Science Talk
CCSVI and MS
SVoid:
Thank for your replies, but I'm not sure you are talking about what I'm talking about. "Too early to tell", "science isn't in yet", "whether CCSVI has a role in causing MS", "miracle cures."
That's one quote from each of the four replies. Angioplasty is 60 years old. CCSVI doesn't cause MS and no one says it does. No one I've found. No one says it's a cure.
It's a treatment that alleviates a symptom of MS. The wikipedia article you quoted is part of the problem I see. When I go to the proponents they don't say it's a cure. They say it's a treatment that alleviates the symptoms. Even Dr. Z says to keep taking MS medication because you still have MS.
Angioplasty is common in Canada if you have a blood blockage. But if you have MS and a blood blockage suddenly it's no longer allowed.
Someone said the proponents are misrepresenting what the skeptics says. Maybe. I don't care. The skeptics are misrepresenting what the proponents say. I haven't see any proponents say what skeptics say they say. Now, maybe somewhere on the internet it's been said. I don't know.
But let's focus on the claims here. Angioplasty is more than double my age. It was first described in the 50s. Done on living patients before I was born. Is now routine common procedure. The MS is not the issue. The issue is people with blood flow blockages. MS patients seem to be treated differently.
Maybe they aren't but I haven't found information to suggest that. Maybe they are being treated differently, but with good reason. I haven't found that information either.
Halleyscomet/Wakefield:
--- Quote from: SVoid on Mar 02, 2012, 01:18:55 PM ---Angioplasty is 60 years old.
--- End quote ---
The age of the procedure is not relevant. The kind of Angioplasty involved in Dr Z's treatment is still dangerous and still carries a risk. It would reckless and irresponsible to run around giving everyone with MS this procedure without more evidence.
All that said, I think we can all agree to the following:
1. There is some evidence that suggests that CCSVI may be somewhat effective in alleviating MS symptoms for some patients.
2. There is insufficient research into CCSVI to determine what relief the average MS patient could experience from it if any, or which MS patients should and should not get the treatment, if it's effective.
3. Proponents and critics of CCSVI appear to have some misconceptions about what the other is saying.
4. More research is needed so we can either debunk the claims of efficacy, or determine formal recommendations for the use of the procedure.
SVoid:
Thanks Halleyscommet. Or is it Wakefield?
Actually this might help me get at the root of things.
But first, a slight disagreement:
--- Quote from: Halleyscomet/Wakefield on Mar 02, 2012, 01:27:42 PM ---
--- Quote from: SVoid on Mar 02, 2012, 01:18:55 PM ---Angioplasty is 60 years old.
--- End quote ---
The age of the procedure is not relevant. The kind of Angioplasty involved in Dr Z's treatment is still dangerous and still carries a risk. It would reckless and irresponsible to run around giving everyone with MS this procedure without more evidence.
--- End quote ---
1) It is, if it's recognized as a safe-enough procedure to perform on people. If it's safe enough to perform on people in taht it's often performed on people, you can't say it's not safe enough to perform on people.
2) Still dangerous? Isn't any invasive procedure dangerous? Is there an operation that not dangerous to some extent?
3) Could we, on occasion, let the patient choose the risk factor? Especially with a procedure (angioplasty) recognized to work on blood flow blockages?
But I like a lot of what you said:
--- Quote from: Halleyscomet/Wakefield on Mar 02, 2012, 01:27:42 PM ---1. There is some evidence that suggests that CCSVI may be somewhat effective in alleviating MS symptoms for some patients.
--- End quote ---
Phew. Okay. Somewhere, for some people, it works. Anecdotally, it worked for my girlfriend's sister. But anecdote != data.
--- Quote from: Halleyscomet/Wakefield on Mar 02, 2012, 01:27:42 PM ---2. There is insufficient research into CCSVI to determine what relief the average MS patient could experience from it if any, or which MS patients should and should not get the treatment, if it's effective.
--- End quote ---
Skeptress posted a link and when I clicked through to read the studies, they said:
--- Quote from: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/publishedstudies/index.aspx ---Robert Zivadinov, MD (University of Buffalo, New York) and colleagues published a controlled, blinded prevalence study (Neurology, epublished ahead of print on April 13, 2011 ) originally reported at the American Academy of Neurology in 2010, in which they conducted transcradial and extracranial Doppler imaging on 499 people, as trained by Dr. Zamboni. The participants included 289 people with MS, 163 healthy controls (HC), 26 with other neurological diseases (OND), and 21 with CIS (having a first neurological episode that can often lead to definite MS).
They found increased prevalence of CCSVI in MS, although lower than originally reported, and also found CCSVI in non-MS participants. Rates were reported two ways, depending on how borderline cases were considered: With borderline cases considered not to have CCSVI, the prevalence was 56.1% in MS, 42.3% in OND, 38.1% in CIS and 22.7% in HC. With borderline cases excluded from calculations, the prevalence of CCSVI was 62.5% in MS,45.8% in OND, 42.1% in CIS and 25.5% in HC. The researchers reported finding no relationship between CCSVI classification and age or genetic status of participants, but did find that those with progressive MS had higher CCSVI prevalence than those with non-progressive (relapsing-remitting) MS.
--- End quote ---
So, only half of MS patients have CCSVI at best. So we wouldn't give it to everyone. Only people with MS that also had CCSVI, which is exactly what angioplasty treats. I think this sounds reasonable.
--- Quote from: Halleyscomet/Wakefield on Mar 02, 2012, 01:27:42 PM ---3. Proponents and critics of CCSVI appear to have some misconceptions about what the other is saying.
--- End quote ---
Right. Some people think that angioplasty is a cure for MS, rather than a treatment of CCSVI, which might (maybe) actually cause the inability to walk.
--- Quote from: Halleyscomet/Wakefield on Mar 02, 2012, 01:27:42 PM ---4. More research is needed so we can either debunk the claims of efficacy, or determine formal recommendations for the use of the procedure.
--- End quote ---
In Canada they've decided against allowing that research. This adds fuel to the pro CCSVI/angioplasty crowd. They are saying work in this field is being suppressed.
Sadly, as time goes on I'm leaning more and more toward 'something isn't right' because, to be honest, I find it hard to find any reasonably critical information on the subject. And it just feels weird to suddenly not trust skeptic websites. I started there. Decided it was bunk. Moved on. But as it continues to come up I'm finding not that they are wrong (none of their claims are mistaken) just irrelevant to the subject matter at hand, because of those misconceptions of what the others are saying.
:(
T.A.P.O.R.:
You seem to be missing one very important thing.
Myelin.
http://en.wikipedia.org/wiki/Myelin
--- Quote ---Myelin is a dielectric (electrically insulating) material that forms a layer, the myelin sheath, usually around only the axon of a neuron. It is essential for the proper functioning of the nervous system. Myelin is an outgrowth of a type of glial cell. The production of the myelin sheath is called myelination. In humans, the production of myelin begins in the fourteenth week of fetal development, although little myelin exists in the brain at the time of birth. During infancy, myelination occurs quickly and continues through the adolescent stages of life.
Schwann cells supply the myelin for peripheral neurons, whereas oligodendrocytes, specifically of the interfascicular type, myelinate the axons of the central nervous system.
--- End quote ---
--- Quote ---Demyelination is the loss of the myelin sheath insulating the nerves, and is the hallmark of some neurodegenerative autoimmune diseases, including multiple sclerosis, acute disseminated encephalomyelitis, transverse myelitis, chronic inflammatory demyelinating polyneuropathy, Guillain-Barré Syndrome, central pontine myelinosis, inherited demyelinating diseases such as Leukodystrophy, and Charcot Marie Tooth. Sufferers of pernicious anaemia can also suffer nerve damage if the condition is not diagnosed quickly. Sub-acute combined degeneration of the spinal cord secondary to pernicious anaemia can lead to anything from slight peripheral nerve damage to severe damage to the central nervous system, affecting speech, balance and cognitive awareness. When myelin degrades, conduction of signals along the nerve can be impaired or lost and the nerve eventually withers.
--- End quote ---
lonely moa:
In another line of treatment of MS, Terry Wahls successfully treated her own disease with the Paleo Diet and is now doing research. Her TED talk is impressive.
TEDxIowaCity - Dr. Terry Wahls - Minding Your Mitochondria
http://www.terrywahls.com/
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