This Is MS Multiple Sclerosis Knowledge & Support Community

http://www.slate.com/blogs/bad_astronom ... talks.html

It outlines patterns of good and bad science talks that are meant to be used as a first-cut method to raise alarms if needed. For example:

GOOD: “It makes claims that can be tested and verified,” and “It is backed up by experiments that have generated enough data to convince other experts of its legitimacy.”

BAD: “Has failed to convince many mainstream scientists of its truth,” and “Comes from overconfident fringe experts.”

These are then followed by a series of “red flag” topics and behaviors that, again, should serve as a warning that what the speaker is saying may not be legit: They are selling a product, they claim to have privileged knowledge, they demand TEDx presents “both sides of an issue.” (That last one is a biggie: In many cases there aren’t two sides unless one side is “reality” and the other is “nonsense.”)

I thought this was useful.
Can CCSVI be tested and verified? (Yes. Especially with gold-standard venography plus IVUS, and autopsy studies.)

Has there been enough data to convince other experts? (No, but the research is underway. I would suggest that by 'experts,' this means interventional radiologists, not neurologists. ISET and SIR are good gatherings of vascular experts.)

The concern is valid that it may be less legit if a product is being sold. It's a reason to want CCSVI angioplasty to be conducted in academic hospitals, not clinics, and especially not medical tourism.

Are there claims of privileged knowledge? Ok, the difficulties with the criteria for the doppler ultrasound falls under this umbrella. It's why other imaging tools would be better for the research.

Are there two sides to the CCSVI controversy? We're seeing two sides presented in the media. Sensationalized.

Is CCSVI coming from overconfident fringe experts? When I first started following CCSVI in Nov 2009, the names to know were Dr. Zamboni, Dr. Dake, Dr. Simka, and Dr. Zivadinov. Now I can't even list all the names of those researching CCSVI.

pseudo-science.... an example---Dr. Fry and Bio films. One expert, one test, one lab, one location.
http://www.frylabs.com/staff.php

CCSVI-- over 300 peer-reviewed papers, hundreds of researchers, thousands treated, hundreds of conferences, international meetings and presentations. Yes, controversy. But controversy does not mean pseudo.
http://www.ccsvi.org/index.php/componen ... ask=search

There's a website that discusses quackery. One of the signs is supposed to be the claim that a solution works for multiple purposes/diseases.

1eye wrote:There's a website that discusses quackery. One of the signs is supposed to be the claim that a solution works for multiple purposes/diseases.

How would Penicillin fit into this hypothesis?

If my neuro says something is pseudoscience, then I know it's not.

Some examples include CCSVI, AO chiro, trauma, Lyme disease, marijuana, Cpn, supplements.

from erinc14's quackwatch link

1. Remember that quackery seldom looks outlandish.
2. Ignore any practitioner who says that most diseases are caused by faulty nutrition or can be remedied by taking supplements.
3. Be wary of anecdotes and testimonials.
4. Be wary of pseudomedical jargon.
5. Don't fall for paranoid accusations.
6. Forget about "secret cures."
7. Be wary of herbal remedies.
8. Be skeptical of any product claimed to be effective against a wide range of unrelated diseases—particularly diseases that are serious.
9. Ignore appeals to your vanity.
10. Don't let desperation cloud your judgment!

I think penicillin, as mentioned above, is effective against a variety of infections. Infections are related diseases. Penicillin is not effective against infections and cancer, for example.

We've had anecdotes in the CCSVI world, we've had some paranoia against pharma. I don't think we've had pseudomedical jargon, as that refers to something that is impossible to measure, and blood flow is possible to measure. But our attempts to figure out why it works might border on this. We are not medical professionals, although we're doing pretty well for laymen, I think.

It's not a secret cure, as Dr. Zamboni has shared his insights with the scientific community as part of the process of scientific development. Venoplasty is not an herbal remedy.

There are practictioners who are treating CCSVI in many different diseases (MS, Alzheimer's, ALS, Parkinsons, migraine, etc). Those are unrelated diseases, although they are all neurological. If CCSVI syndrome is a disease in its own right, then what is being treated is CCSVI syndrome, not the other diseases. I don't think we yet have an adequate diagnostic process, to know who has CCSVI and who does not prior to a venogram plus ivus being done. This is a concern.

And MS is a disease in which there is legitimate desperation and fear of what's next and suffering. It might not cloud our judgment (beyond what cogfog already does), but it's going to factor into any decision.

I don't see grounds for dismissing CCSVI as quackery. It is being researched through the scientific process. It involves angioplasty of blocked blood vessels; angioplasty has been well established as a treatment for blocked blood vessels.

It is not quackery, but the current research is not of the highest caliber of scientific study.

Large study populations, long observation periods, randomization, blinded investigators ([1]although, you don't need this for a sham operation; how? and for what purpose even; [2]blinding can occur, e.g., in sonographic diagnosis, like in the Baracchini study, or with a neurologist's or physical therapist's examination]), and, of course, placebo-control (in this case, it is the sham operation).

These are the "golden nuggets" of legitimate scientific studies related to medicine. Zamboni's BRAVE DREAMS is exactly what is needed at this point.

Also, I like to point out the fact that, since the studies that disproved CCSVI had a similar experimental design as the ones that uncovered, or implied a positive association, between CCSVI & MS [in other words, both designs had no implementation of a sham operation to study placebo effect], how can we consider the few studies having disproved CCSVI, with equal weight, as being irrefutable? You cannot!

erinc14 wrote:http://www.quackwatch.org/

More specifically.

http://www.quackwatch.org/01QuackeryRel ... cs/ms.html

Liberation Therapy

The FDA has warned that "liberation therapy" (also called liberation procdure) is unproven and unsafe. The procedure, in which balloon angioplasty devices or stents are used to widen narrowed veins in the chest and neck, is based on the unproven idea that a narrowing of veins in the neck and chest (chronic cerebrospinal venous insufficiency) may cause MS or contribute its progression by impairing blood drainage from the brain and upper spinal cord. However, studies exploring a link between MS and CCSVI are inconclusive, and the criteria used to diagnose CCSVI have not been adequately established. The FDA warning was generated by reports of death, stroke, detachment and migration of the stents, damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the "liberation" procedure [13].

Well that's that then. I guess we should all just pack up and go home.

erinc14 wrote:

I've never heard of this book before, I've heard of Carl Sagan obviously, but not his book.

I found this from the oracle of the interweb - Wiki:-

I particularly like the "Baloney detection kit"

Themes

In the book, Sagan states that if a new idea continues in existence after an examination of the propositions has revealed it to be false, it should then be acknowledged as a supposition.[citation needed] Skeptical thinking essentially is a means to construct, understand, reason, and recognize valid and invalid arguments. Wherever possible, there must be independent validation of the concepts whose truth should be proved. He states that reason and logic would succeed once the truth is known. Conclusions emerge from premises, and the acceptability of the premises should not be discounted or accepted because of bias.
As an example, Sagan relates the story from the Chapter "The Dragon in My Garage" (which he notes follows a group therapy approach by the psychologist Richard L. Franklin[1]) of the invisible fire-breathing dragon living in his garage. He asks, "what's the difference between an invisible, incorporeal, floating dragon who spits heatless fire and no dragon at all? If there's no way to disprove my contention, no conceivable experiment that would count against it, what does it mean to say that my dragon exists? Your inability to invalidate my hypothesis is not at all the same thing as proving it true."
Sagan presents a set of tools for skeptical thinking which he calls the "baloney detection kit". Skeptical thinking consists both of constructing a reasoned argument and recognizing a fallacious or fraudulent one. In order to identify a fallacious argument, Sagan suggests the employment of such tools as independent confirmation of facts, quantification, and the use of Occam's razor. Sagan's "baloney detection kit" also provides tools for detecting "the most common fallacies of logic and rhetoric", such as argument from authority and statistics of small numbers. Through these tools, Sagan argues the benefits of a critical mind and the self-correcting nature of science can take place.



Suddenly I'd like Carl Sagan to run his eye over MS. I'd like to see how the autoimmune argument held up to the Baloney test as well as CCSVI.

really, we are listed on quackwatch?

Cece wrote:really, we are listed on quackwatch?

yes...but they also say diet, supplements and lifestyle interventions are useless, too, Cece.
So sit back in the Lazy Boy, light up a marlboro, enjoy those chilifries with extra cheese...and listen to your neuro about the new drugs.
Because MS is obviously autoimmune, and that's all there is to it. Any mouse with EAE will tell you so.

Here's more from Quackwatch on MS:

MS's extreme variability makes it a perfect disease for quacks. The only way to know whether a treatment is effective is to follow many patients for years to see whether those who receive the treatment do better than those who do not. Quacks don't bother with this kind of testing, however. They simply claim credit whenever anyone who consults them improves. And since the majority of attacks are followed by complete or partial recovery, persuasive quacks can acquire patients who swear by whatever they recommend.

But wait, Dr. Helen Tremlett's recent UBC studies (which followed patients for decades) stated exactly this point--- that the DMDs do not alter progression and MS has a natural variability which is not affected by DMDs--- Does this mean that the prescribing neuros are just quacks?
In fact, everyone attempting to treat MS is just a quack, since we have no definitive MS aetiology....just theories.
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