Skeptic Mentality

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Skeptic Mentality

Postby Lyon » Sun Nov 07, 2010 6:08 pm

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Postby Cece » Sun Nov 07, 2010 6:24 pm

Lyon, thank you for posting this here rather than continuing it in the other thread.

It doesn't seem like we have to push anymore, the availability of doctors who treat CCSVI has taken off like a rocket.

For me personally, as intellectually convinced of the theory as I already was, the firsthand experience of getting scanned this week was huge. The theory predicted I'd have obstructions in the jugulars and a doppler ultrasound pointed at my jugulars revealed obstructions on both sides. There is a place in the discussion for firsthand accounts, they are adding up like mad, but I agree that we need the science too.

I don't think the skeptics need to accept anything as good enough at this point, it's fine to say that it's not good enough yet. I am just hoping that it will be said in respectful and kind manner. It's not about which way we roll, it's about making sure we don't roll over anyone in the process.... CCSVI is something I care deeply about. Not blindly, just deeply.

Also, are you also posting as Malden? I've always liked you, but I was offended by what Malden said in my thread, so I have been feeling conflicted.
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Postby Lyon » Sun Nov 07, 2010 6:42 pm

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Postby rainer » Sun Nov 07, 2010 11:26 pm

It really has nothing to do with skepticism at this point with the evidence so lacking. I'm sure it seems very convincing when you are in a forum of other eager believers but scientifically there's just not much there yet.

And imagine the things this world could contain if all it took was anecdotal evidence. Bigfoot, unicorns, aliens, elvis still alive, spontaneous combustion, psychics, ghosts. People swear to see a lot of things.
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Postby jgkarob » Mon Nov 08, 2010 3:06 am

Scepticism isn't necessarily a negative emotion.
I'm not a strong believer as a rule, I'm at a stage in my life where I think 'hmm, he/she has a point there...' and a large dent in my behind from sitting on the fence.
Reiner wrote;
"And imagine the things this world could contain if all it took was anecdotal evidence. Bigfoot, unicorns, aliens, elvis still alive, spontaneous combustion, psychics, ghosts. People swear to see a lot of things."

Yep, I like that and I'd like to believe.
I have had huge hopes for 'Liberation' this year. Two good friends have hadit and haven't experienced benefits and one is actually worse after two procedures in Poland.
It's difficult to accommodate all views on this board. Americans are quick to rubbish the DMDs, but those with insurance are prescribed the drugs far more often than in the UK, for example.
People who wouldn't get the CRAB drugs in the UK, have them prescribed and rail at their neuros when the drugs don't seem to do anything but make them feel ill. Which is probably true.

If you've had to fight for access for your drug and practically, physically jump through hoops to get it and then you find on a self-audit some years later, that the drug has worked really well, then much of the rhetoric on the internet, earlier this year is distressing.
So many people wrote 'Hah! see they don't work!', whilst I was writing 'yes, but mine has worked for me.' Some people here even took exception at this.

I know, I'm going to open all this up again. But, the system of 'risk sharing' in the UK was never going to show good results. Why?
Because record keeping was so bad, that it was impossible to work out a statistical result.
It was a fudge - a goodwill gesture in 2002, to give access to those who qualified. It brought the UK up from the lowest prescribing country for DMDs in the world, to the second lowest. Ooh, big result.

CCSVI testing is not going to happen in a hurry in the UK. The NHS is going to stand back and wait for as long as it possibly can.
The welfare funding situation (health and social support) is dire and getting worse.
People with MS are having benefits removed, due to a contracted-out asseessment company, who seems to be on a bonus for the number of people that it can declare 'fit for work'.
It's as though there are two MS worlds out in the WWW. Those who can pay and those who are left watching and wishing and wondering if they'll ever get tested.
How does a person reconcile the views of the really quite gentle and logical sceptics here (with the exception of C Rose), with the in-your-face evangelists.
Please could we have a forum for those who are stuck in the middle and can only watch and occasionally bleat 'yes, but...'

I think we should all agree that MS is a right slippery bugger and nothing is a 100% cure - more's the pity.

Open minded and occasionally distressed sceptic.
Rebif/LDN/gluten,pulse free-diet/IBT/exercise/vitamin D3, B12...
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Postby L » Mon Nov 08, 2010 3:35 am

rainer wrote:And imagine the things this world could contain if all it took was anecdotal evidence. Bigfoot, unicorns, aliens, elvis still alive, spontaneous combustion, psychics, ghosts. People swear to see a lot of things.


And conducting multi million dollar trials to confirm or deny these phenomena is desirable? And are you comparing people who demonstrate improvement after CCSVI treatment to people who believe in unicorns?

It's worth noting that anecdotal evidence, whilst it has been deceptive at times, has been reliable in countless examples. One of the better known being the Ancient Greek's use of the willow tree to provide pain relief. No multi million dollar trial needed there.
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Postby concerned » Mon Nov 08, 2010 8:51 am

From: http://www.csus.edu/indiv/m/mccormickm/ ... ticles.htm


Human Psychology, Evidence, and Alternative Medicine

Alternative, fringe medical therapies are huge business. In a given year, Americans will spend as much as $50 million on complementary and alternative medical therapies. These include medications like echinacea, ginseng, glucosomine, and medical treatments like prayer groups, meditations, massage, yoga, chiropractic, and acupuncture. That's more money than Americans will spend in a given year on regular medical therapies and medications. Given that we are all spending so much money on them it is important to consider the sorts of evidence we have to support or reject the claims concerning their efficacy. Do these treatments work, and do we have good reasons for thinking that they do? Evidently, people believe that they do work, or they wouldn't be spending so much money on them. But what exactly is the typical person's reasons for buying into one of these alternatives?
When someone says something like, "Echinacea works, I took some last week when I felt a cold coming on and I felt better immediately," what sort of argument are they making? Typically, someone they trust told them that the supplement works. Your mother or your cousin, or a friend said, "you should try echinacea, it cures colds." So looking for relief, you gave it a try. Then you felt better. Or maybe you didn't. So you gave it some more time, maybe you took a few more pills, and then you started to feel better. So for the typical person, their evidence for the claim, "Echinacea works," is 1) people I trust said that it works, 2) the label says that it works, and the label can't outright lie about something like that, and 3) I took it and then I felt better.
Let's consider the last category of evidence. Here's the vital question to ask about a case like this where we think that X is true and we have some experience that seems to be consistent with X: Have I considered the class of evidence that could possibly disprove X? Did I consider what would have happened to my cold if I hadn't taken the echinacea? If my cold would have gotten better anyway, at the same rate, with or without the medication, then we should conclude that the medication doesn't work. But how would I know whether it would have gotten better without the drug? I can't know for sure about a particular cold of mine. What we can do is look at a larger data set. And that is what clinical trials do. A clinical trial of a drug will look at the regular course of a disease in a control group. And they will consider the impact of the placebo effect on test subjects. And they will compare those two results with the course of the disease among test subject who took echinacea. If on the whole the echinacea group got better faster, or had less severe colds than the control group and the placebo group, then we could have evidence that echinacea actually works to reduce the length or severity of colds. But when I reason from my own case of one or two colds that I had and then I got better after taking echinacea, I do not have the sort of evidence I need to figure out whether or not echinacea works. My feeling better is consistent both with its working and with its not working from my perspective. It might be that it was the full night's rest that I got that made me feel better. It might be the placebo effect making me feel better. It might be that I would have felt better anyway, even if I hadn't taken the drug. Or it might be that the drug actually did work and made me feel better. But unless I can control for those other factors and compare to a data set where no drug was taken, my evidence is incomplete. My own experience and a few stories from friends and family just aren't enough to establish one way or another whether one of these therapies works. But since we think that this weaker body of evidence is sufficient to prove the claim, we spend our money--millions of dollars--on the drugs, making the manufacturers rich on the basis of fallacious reasoning.
For the most part, the claims made by manufacturers about the effectiveness of alternative medications such as echinacea have not been tested. Typically, there are no careful, double-blind, randomized clinical trials to support the therapeutic claims associated with these medications. The FDA has a number of regulations that manufacturers have managed to cleverly circumvent. Any specific claims that a manufacturer wants to make about a supplement's improving a person's health have to be reviewed and approved by the FDA. So before calcium companies could claim that calcium lowers the risk of osteoporosis, for example, the FDA had to review the scientific evidence concerning the claim and determine that the claim had been proven in clinical trials. There is a huge market for dietary supplements, so when clinical studies do not support the disease claims, what can the manufacturer legally put on the label? What they have discovered is that more general claims that do not name any specific disease are not prohibited by the FDA regulations. The clinical studies of the effects on echinacea, for instance, have not found any significant effects on the length or intensity of colds beyond the placebo effect. So rather than put, "reduces the length and severity of colds!!" on the label, which would be prohibited, manufacturers will make claims like, "Helps your body's immune system to keep you active," or "Boosts your immune system," or even vaguer, "Helps your immune system." These claims, manufacturers have discovered, are not prohibited by FDA regulations and will be tolerated, at least for the time being. So the unwary consumer hears what friends and family had said about echinacea, reads the label, and spends the money to try some.
Here's another phenomena that plays into our beliefs that these drugs work. When you feel sick, you go ahead and take the medication. If you feel better shortly thereafter, you credit that improvement to the drug. After all, that’s what you were expecting and hoping for, and a friend said you would feel better, and the label says that it works. So even if you would have gotten better around that time anyway, you give the credit for that improvement to the drug. And at what point are you most likely to take something for your cold? When you have had it for several days, and when it has progressed to what feels like its worst state. So given the normal trajectory of a cold, you had hit the worst of it and your immune system was catching up and getting ready to conquer it anyway. But since you just took the pills, you chalk the improvement up to them.
Now what happens if you take the pills and you don't feel better right away? If you have the expectation that the pills should work, then a couple of different things go through your mind: "Maybe I should wait a while longer to give it some time to kick in." or "Maybe I didn't take enough--it will start to work once I take some more." So now you wait, or maybe you take some more 4 hours later. Then when you feel better shortly thereafter, you conclude that the drug was working, it just took a little longer than expected. Or "the drug was working, I just needed to get more of it into my system." So now, once again, you conclude that the drug must be what made you feel better. So no matter what the outcome after we take a medication that we think is going to work, we conclude that the drug works. We just weren't considering the category of evidence that might have disproven the claim. As a result, people have enthusiastic and entrenched convictions about the effectiveness of these treatments. And given that all the evidence that they considered seems to support the belief, those convictions seem warranted. But once we take a broader view of the phenomena, we realize that our data was skewed, we had strong expectations, and we didn't consider a whole category of evidence that is essential for supporting the belief.
What do the scientific studies say about some of these treatments? Echinacea use has no significant effect on the length or severity of colds. Zinc lozenges do reduce the length and severity of colds. Testing has not supported the claim that Airborne, a vitamin mixture, cures or prevents colds.
Besides possibly wasting one's money, what is the harm in trying or believing in alternative medical treatments? Someone might argue that if nothing else, one derives the placebo effect from a medication that has no other effect. And that is worth something, especially if it makes my cold feel better.
But there are several other more serious harms that could result from untested medical therapies. First, these remedies are not cheap. You're not just wasting a little money when a treatment doesn't actually work, you may have had to spend $50, or $100 or more on it. In a recent case in Sacramento, a woman with chronic pain had paid over $3,000 for a questionable "pain reduction" machine. Thieves stole the machine from her office. People in the community offered their support after her story was on the news and bought her another one. What was portrayed as an example of human charity and compassion at work on the news was actually a $6,000 waste of money. Second, many of these diet supplements and alternative treatments have not been thoroughly tested by the FDA or clinicians for safety. We do not know the long term effects of the drugs, we do not fully understand their side effects, we do not have reliable data about safe or effective dosages, we do not know how they may interact with other drugs, we don't know what's really in the pills because they are not as closely regulated, and people often do not tell their doctors that they are taking them. The manufacturers have proven themselves to be unscrupulous, and the FDA is not able to do careful monitoring of contents. So you are taking significant risks with your own health and safety. And you may be endangering others. Health food stores often sell a variety of herbal remedies that they recommend to pregnant women for morning sickness, pregnancy discomforts, cramps, or sleeplessness. There are even herbal remedies that are suggested by advocates for the overdue mother-to-be to induce or accelerate labor. The danger is that we do not have good information about the possible effects of such drugs on a fetus, and the development of the fetus, especially during the first trimester, is extremely sensitive and vulnerable. So taking alternative medical therapies is not as cheap or harmless as one might think.
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Postby L » Mon Nov 08, 2010 8:56 am

I have taken plenty of alternative medicines but none had any effects such as those we are seeing in the youtube testimonial videos that patients are uploading.

Incidentally, the efficacy of Glucosamine has been proven. I suspect the same can be said of Ginseng and Echinacea.
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Postby Cece » Mon Nov 08, 2010 10:19 am

One of my first posts to the CCSVI forum was along the lines of, "Could it be a hoax?" With just one doctor and his 100% results, that could be a hoax or, more kindly, a mistake. But Dr. Dake found it too and Dr. Zivadinov and Dr. Haacke and Dr. Sclafani and now about a hundred doctors worldwide.

These doctors aren't seeing unicorns, they are seeing congenital vascular malformations.

Skepticism needs to be in play when we ask: does fixing these vascular malformations in the jugular and azygous have an impact on the course of MS and on present MS symptoms? The research will tell us one way or the other.

jgkarob, I hope the watch-and-wait won't be too long, if this is the breakthrough I want it proven and available to all, and if it's not a breakthrough or carries too high of risks, that needs to be known too. Medical tourism to Poland without follow-up care at home is not something I would do either.
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Postby jgkarob » Mon Nov 08, 2010 11:05 am

I'm feeling a bit conflicted right now. To be honest, with the exception of my rare hypertension problem (it's MS at the root of it), my general condition in MS terms is good.
I can walk, think, talk and I look pretty normal. I'm not, I know that and I've been fortunate that the MS hasn't really progressed very much in 10 years.
Of course, you can never know this at diagnosis, all you can do is hope.

My friend who was treated, is now miserable and much worse and whilst everyone's MS is different, I'm concerned that this could happen to me.

However, as a very impoverished person, living in a very rural out-of-the-way part of Spain, where MS is fairly rare, watching and reading and waiting is all I can do.
I did try to get my neuro to read up about this, but he's not anti- it's just beyond his remit.
I'm having enough problems trying to talk about LDN. It's really unknown here - there isn't even a catchy name for it!

I know I discuss the UK, but that's the system that I'm most familiar with. If I was seriously disabled and on multiple benefits in the UK, I'd definitely go for Venoplasty and treatment.
As I'm not, I can wait and try to keep as mobile and stable as possible.
xx
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Postby scorpion » Mon Nov 08, 2010 11:52 am

Great article concerned. Cece I am not yet convinced that there is such a condition as veinuous blockage in the neck. Certainly it seems that there are researchers who would disagree with me but as I said in an earlier post what if what the "blockages" are nothing more than normal veins for that particular person. I guess we could go back and forth on this forever, huh? Will researchh tell us one way or another or will negative results keep being chaklled up as misinformed and misguided studies? Only time will tell. Skeptics. That word could apply to all of us. What about the people who are skeptical of the DMD's, pharmas, and neuros. They are skeptics too, right? :wink:
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Postby MS_HOPE » Mon Nov 08, 2010 12:44 pm

Many good points made by all. Healthy skepticism is just that - healthy. Certainly the jury is out as to the exact relationship between the symptoms and signs doctors have labeled "many scars" (MS), and vascular abnormalities causing improper drainage of blood (stasis? reflux?) from the brain and spine.

But the positive results of angioplasty intervention, well-documented by patients and doctors, including videos, cannot be dismissed. Still, the published results are sparse. (That will change soon, I hope.) And there ARE risks, not only of no benefit from the procedure, but also of harm.

The evolving knowledge will help everyone in making their personal risk/benefit calculation. I would urge all of us to be very tolerant of others' decisions in this arena - only the individual pwMS really knows how much his or her MS (or CCSVI?) symptoms are affecting quality of life, and what risks are acceptable personally.

I have become distressed at times on this forum at the negativity and nastiness of some of those posting. This is so harmful to everyone who is trying to heal. Please be respectful of others' right to disagree, and don't engage in personal attacks! Instead, as many are doing, educate that person, if you can, in the facts and reasoning behind your point of view, in a spirit of helpfulness, not combativeness. And know when to let the discussion end - not everyone will be convinced of your point of view.

And thank you to all (you know who you are) who consistently engage in civil, helpful sharing of knowledge, experience, theoretical explorations, compassion, etc. You're why I keep returning to this forum, which has been so immensely educational for me.

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Postby Lyon » Mon Nov 08, 2010 1:47 pm

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Postby CCSVIhusband » Mon Nov 08, 2010 2:07 pm

Lyon wrote:
Cece wrote:One of my first posts to the CCSVI forum was along the lines of, "Could it be a hoax?" With just one doctor and his 100% results, that could be a hoax or, more kindly, a mistake. But Dr. Dake found it too and Dr. Zivadinov and Dr. Haacke and Dr. Sclafani and now about a hundred doctors worldwide.

These doctors aren't seeing unicorns, they are seeing congenital vascular malformations.
I've already read through the thread and saw MS_Hope's term "Healthy Skepticism" and I like and am going to commandeer the term. I think healthy skepticism causes us to look at all options that come to mind including (in this case because we're discussing the theory of CCSVI)
1. We've been told that it's (venous insufficiency) unique to those with MS, which mostly seems due to the fact that you would assume that imperfect veins are not found in "normals" but we first need to determine with certainty that CCSVI IS unique to MS.
2. Does it (elimination of stenosis) or doesn't it work needs to be determined with certainty.
3. If it is proved to work, why does it work? Not the biochemistry of why it works but does it work directly on the MS process or does it work secondarily ie... putting your body in a better position to fight MS on it's own as things like sleep or diet do.

With the above in mind it seems that the temporary answer to:
cece wrote:These doctors aren't seeing unicorns, they are seeing congenital vascular malformations.
is that we can't read too much into vascular malformations because it remains to be determined whether normals have perfect venous systems, ie...significantly different venous systems than those with MS.

Not to crawl back into the mud but it's important to recognize that "skepticism" doesn't only encompass "I'll believe it when I see it" but also encompasses those who might already believe it but find it necessary to understand if it's working directly on the MS mechanism or working on some other aspect which allows the MS mechanism to be overcome.

In an environment in which the attitude understandably is "who gives a shit why progression quits as long as it quits?" (and to a large degree that's true because any benefit is better than none,) but down the road it is going to seem a huge difference between finding that the disease process had really been stopped for good and finding that mechanisms were still simmering under the surface to come back with a vengeance later.



I believe Dr. Sclafani answered directly (a question you asked) ... that he said in his 3+ decades of medical practice in the field ... he has NEVER seen veins in the NON-MS population that he has seen since he began performing liberations. I guess you are choosing to ignore that piece of evidence? You can search for his response to your question ...

I agree the rest needs to be proven ... but again, when will it ever be enough? Which set of doctors are we going to let prove it, ones who go into the veins and perform liberation, or these neurologists hell-bent on going out and not finding CCSVI by a diagnostic (ultrasound) that isn't the "gold standard" (venogram).

concerned doesn't seem to think it's enough that Polio doesn't exist (for the most part) anymore because "it hasn't been cured" ... so are we going to have one of those, where proof comes out, it is stopped, but it's not "cured" so how does CCSVI ever "cure" MS because you have to know that someone has MS before they have CCSVI? Like I've said ... circular logic.

Hey ... go ahead though, get people to test it and prove it all you want (that's fine with me and what science needs) ... but my wife's results (and the results of hundreds if not thousands of others speak volumes) - and that's all I really care about.

If you're so concerned normals have healthy veins and MSers don't, why don't you go have yours checked out ... and your wife's? I'll tell you what, you come to my wife's doctor (who is well practiced in the way of CCSVI) ... I'll pay for your trip and the medical expenses - I've got the money. A flight from Detroit for 2 and two tests should only set me back 1,000$ ... and it would be worth it to hear you say first hand ... OK there's something to this CCSVI ...

Agree? (or would the sample size be too small with just the two of you and ... well ... circular logic). - I'll double the sample size and throw in my wife and I as well ... any other takers?
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Postby Cece » Mon Nov 08, 2010 2:38 pm

jgkarob wrote:My friend who was treated, is now miserable and much worse and whilst everyone's MS is different, I'm concerned that this could happen to me.

Can't respond to everyone right now, but I wanted to ask if your friend has been checked with a follow-up doppler? This procedure can make people worse than they started, the veins can clot and have regrowth until they are entirely closed, and when this happens, further treatment may become not possible. You can't do a catheter ballooning if a catheter can't get through.

This is easily and cheaply checked through doppler ultrasound but with medical tourism, people are returning home without the access to follow-up care that's needed.
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