This Is MS Multiple Sclerosis Knowledge & Support Community

Obviously, it wasn't very nice or professional to call Dr. Zamboni a "quack," but Zamboni's original conclusion that there is a strong association between extracranial venous anomalies and multiple sclerosis is incorrect.

In that sense, Dr. Freedman has been vindicated.

Not very nice or unprofessional is putting it mildly! Freedman's comments were totally uncalled for regardless of what the long term results may have been and I have heard other docs comment that they were more than disappointed to hear a colleague criticize a peer in that fashion. Doctors are normally loathe to speak out against other doctors in this manner and it is an unwritten rule in the medical community to refrain from using language like this. To me, it showed a total lack of class by Freedman and whatever esteem I held for him was lost when he made those comments. Had Zamboni been someone who was trying to gain a reputation and make a lot of money from his work then perhaps I would agree with the comment but from what I have seen from the doc, he is anything but that kind of person. Freedman could have disagreed with Zamboni in several different ways but this certainly wasn't one of them...at least that is my opinion.

HarryZ wrote:Not very nice or unprofessional is putting it mildly! Freedman's comments were totally uncalled for regardless of what the long term results may have been and I have heard other docs comment that they were more than disappointed to hear a colleague criticize a peer in that fashion. Doctors are normally loathe to speak out against other doctors in this manner and it is an unwritten rule in the medical community to refrain from using language like this. To me, it showed a total lack of class by Freedman and whatever esteem I held for him was lost when he made those comments. Had Zamboni been someone who was trying to gain a reputation and make a lot of money from his work then perhaps I would agree with the comment but from what I have seen from the doc, he is anything but that kind of person. Freedman could have disagreed with Zamboni in several different ways but this certainly wasn't one of them...at least that is my opinion.

I agree with you

Centenarian, it's a question of CHOICE. If someone chooses to take any drug they want, fine. But I should have the choice of venoplasty by a competent experienced Interventional Radiologist paid for by my insurance company (which was possible before the FDA declared the procedure "experimental" May 2012). Right now the FDA is fast tracking new drugs.

I understand the political appeal of choice, but I actually strongly disagree with your position. Of course you feel that you have the right to access to liberation paid for by your insurance company...because you feel that the treatment is effective. You are convinced by the observational studies. You are convinced by the anecdotes. You are convinced by the underlying concept. But of course anyone can believe in any treatment for any condition.

"I want my insurance to pay for experimental chemotherapy for my glioblastoma."
"I want monthly screening full body MRIs because my mother died of cancer."
"A want full exome sequencing out of curiousity"
"I want acupuncture"
"I want to see 10 different specialists because I'm a hypochondriac"

Do we just give everything to everyone? Is this a pragmatic approach to medicine from a community perspective?

Of course not.

You're not the only person on the planet. There are other people with other medical problems. There are lower middle class people who cannot afford health insurance due to outrageous costs who develop hypertensive nephropathy which could have been easily prevented.

The only reasonable way to adjudicate what constitutes medical need and what does not is based on current standard of practice and best available evidence. Most neurologists and most interventional radiologists simply do not believe that liberation is the standard of care. If they did, health Canada would pay for the procedure.

If you want a non-standard of care experimental treatment, you should have to pay cash for it.

You have right to free liberation like I have a right to a free ferrari.

I call this Luddite médicine.

excellent use of "Luddite," but I still disagree[/quote

If I have stenosed or blocked veins I have every right to expect they be opened with venoplasty, that they should be treated as any venous abnormality irrespective of any other health problem I may have. I myself don't intend to be treated for CCSVI but your statement about depriving some poor person of health insurance because I might request treatment is insulting and rather witless. I live in France which has the best health care system in the world. The US system gives the lie to the ideology that if it's private, it's less expensive and better. The US health care system is the most expensive and the worst in the industrialized world. When WHO was ranking these systems, France came in number 1 and the US number 37 - because of lack of access. (infant mortality, life expectancy etc) This is not to denigrate the practitioners (Drs Nurses etc) but the grotesque greed of Drug and Insurance companies (You and Dr G seem overly pre-occupied with money yourselves) As far as Ferrari médicine, '4 years of some of these MS drugs will BUY me a Ferrari. Venoplasty costs about $10,000, the price of 4 teeth implants.
You make sweeping dismissive statements while stubbornly refusing to inform yourself (as far as I can tell).
Thank God Dr Zamboni's ideas became public. They changed my life. As soon as I heard of the blood reflux, fluid circulation idea I asked for an upper back, neck massage to stop a relapse. I now understand how an acupuncture treatment can stop a relapse in one hour. NHE has asked that we don't persist when one individual isn't interested in debate but simply wants to repeat the same thing over and over again. Again, maybe you should concern yourself with the Fallacy of current drug research and the poor outcomes of drug therapy. Better yet, check out my site and maybe you'll learn something about how MSers can help themselves without going to the poor house or depriving some poor lower middle class person of health insurance. MS Cure Enigmas.net

I just wanted to add my tupence here...

I have worked for big pharma, that is one of the main reasons I see so many flaws in the clinical trials of DMDs. If you know how clinical trials are setup and how the pharma sales force engine works...you see things in a different light. I am not going to refute areas of medicine where drugs have helped as there are hundreds. However, lets not think there is a humane objective to carry out the proper investigations and trials into useful treatments, pharma doesnt make money that way. We are now seeing the importance of Vitamin D (Ive found papers on Vitamin D and MS/autoimmune dating back to mid 1980s..), diet factors are also clearly involved, and yet lets not expect big pharma to care about that. After all, doest BMW try to convince me to use public transport?

With regards to CCSVI, im going to share something that should result highly interesting to both defenders and non believers of CCSVI. Here in Spain in the 1980 - 1990s a procedure became "well known" amongst MS sufferers, it was called CTOS and I think it was really a precurso to CCSVI. The underline mechanism was the same. Remove part of the scalene muscles in the neck to improve blood flow, which a group of doctors found benefited patients with neurological problems which they believed to be due to poor brain blood flow.

There is a brief summary in english on this page, but the study is in spanish:

http://abdem.mforos.com/474058/2065490- ... leno-ctos/

Spain's level of english is still quite poor now, let alone back then. This will explain why many if not most have never heard of this treatment. For those of us who are english speakers lets not forget the importance of english as the language that spreads news. After all, how many of you have heard of Dr Cicero? He is very well known in Brazil for succesfully treating MS with high doses of Vitamin D, the problem is that all the anecdotes, forums, yahoo groups, interviews on television, etc are in portuguese.

I have spoken to a doctor involved in this treatment. There was never a big furore around CTOS as there currently is with CCSVI. I asked how MS patients had progressed, it struck me that he seemed honest when saying that not all patients experienced improvements, although none deteriorated more rapidly as a result of the intervention. He said approx. 50% of patients had symptoms improvements, and many of the improvements developing gradually over the years (remember, some people were operated back in the late 1980s). He checked my blood flow, and found issues on the right side (same side as where I had my first relapse and where my cervical lesion is- weak right arm, weak right leg, dropped right foot, and same side that has been left a tad weaker as a result, and also same side where most of my brain lesions are). I was watching the doppler, and it was clear that was a difference. When asked whether I should think about the operation (I am more interested in CCSVI personally, but was testing the waters), his reply surprised me. He commented that my blood flow wasnt as bad as the worst cases he had seen, but also not of the the least problematic either. He recommended keeping a check on my blood flow, and to stretch the neck area frequently, to relax the muscle and aid in blood flow.

Long story, i know, but this once again points to the blood flow theory. Im relateively new to MS, but I think the collective medical world and society as a whole ("we") are making one huge mistake...we are looking for the silver bullet, and i think this disease has different treatments depending on the person.

After all, and after all these years, does anyone expect to find one unique treatment for cancer?

Centenarian wrote:
Anecdotal evidence doesn't count.

I just wish more people would accept this!

There have been enough words on a range of MS "treatments" - both for and against - that are just anecdotal. But, of course, people will believe what they want to regardless of the real evidence.
- HBO works - a guy my brother met in a bar said so!
- LDN works, and a huge campaign started in the UK on the back of this.
- TMJ works - and one clinic in the UK is reported as having said that TMJ produced better results for them than CCSVI liberation.
- One story being put around the UK was that the FDA had got all CCSVI work in Europe stopped. This at a time when about 10 clinics were offering the treatment. Even when this was pointed out, the individual concerned continued to spread the story.
- Atlas adjustment works - and there was a big dispute in Germany between two schools offering different techniques for this treatment over which was the most dangerous.
- The "XYZ" diet works - even when based on one person, and where there is no evidence as to whether it was a remission or not.
- Ampyra works - I know several people who say so, even though the real success rate is only around 10%.

I am not committed to the need for double-blind studies - they have their place in the experimental scheme of things. But any well designed study or trial should, above all, be reproducible, and should be reported with enough information to make that possible. I might not want to repeat it, I may not have the resources to repeat it, but I should at least be able to see if the treatment of the raw data was appropriate, or just something that a freshman student could have done better.

Geoff

DrGeoff wrote:

Centenarian wrote:
Anecdotal evidence doesn't count.

I just wish more people would accept this!

Very true, but in a disease like MS its difficult to live without hope. Anything regarding MS that has a good story behind it seems to get accepted by the majority. I cant say I blame them, innocent before proven guilty right? so why not believe a medical treatment until it is proven false. As long as it doesn't involve a risk to health or a big investment.

DrGeoff wrote: There have been enough words on a range of MS "treatments" - both for and against - that are just anecdotal. But, of course, people will believe what they want to regardless of the real evidence.
- HBO works - a guy my brother met in a bar said so!
- LDN works, and a huge campaign started in the UK on the back of this.
- TMJ works - and one clinic in the UK is reported as having said that TMJ produced better results for them than CCSVI liberation.
- One story being put around the UK was that the FDA had got all CCSVI work in Europe stopped. This at a time when about 10 clinics were offering the treatment. Even when this was pointed out, the individual concerned continued to spread the story.
- Atlas adjustment works - and there was a big dispute in Germany between two schools offering different techniques for this treatment over which was the most dangerous.
- The "XYZ" diet works - even when based on one person, and where there is no evidence as to whether it was a remission or not.
- Ampyra works - I know several people who say so, even though the real success rate is only around 10%.

I am not committed to the need for double-blind studies.
Geoff

-

This is a bit of an oxymoron as a couple of the treatments you have listed have studies to back them up, not just anecdotal ones.

LDN has shown to be one of the only effective medications for PPMS, if only to reduce some symptoms.
http://msj.sagepub.com/content/14/8/1076.abstract

Swank diet showed a significant improvement in the majority of his patients. It was debunked almost immediately by a couple neurologists when it first appeared in the lancet which seemed to start the trend. Later it was said that the results shouldn't count because he didn't do double blind studies, which were not standard when the original test was conducted.
https://jama.jamanetwork.com/article.as ... ultClick=1

If I hear of something that has a decent study to back up the efficacy I add it to my regimen... like Inosine... cheap, no significant side effects, why not take a shot?
http://msj.sagepub.com/content/7/5/313.abstract
http://www.ncbi.nlm.nih.gov/pubmed/19425822

Hello cheerleader:
I didn't realize you were so instrumental in advancing early research on CCSVI in the US (and the world in fact). Brava. Thanks for your March 1 post reviewing the introduction of Dr Dake to Dr Zamboni and Dr Zamboni to This is Ms and the clarification surrounding Dr Zamboni's contacts and projects. At one point you wrote you wanted to "retire" from the MS subject. I hope you have changed your mind, we need you. Thanks again, Vesta

Kronk wrote:Very true, but in a disease like MS its difficult to live without hope. Anything regarding MS that has a good story behind it seems to get accepted by the majority. I cant say I blame them, innocent before proven guilty right? so why not believe a medical treatment until it is proven false. As long as it doesn't involve a risk to health or a big investment.

I have hope. In the next 20 years, there will be 1,000 new treatments for multiple sclerosis. 990 will be bogus. 9 will be decent. 1 will be awesome.

centenarian100 wrote:If you disagree with this statement, please provide the source.

Cheerleader already posted several references.
http://www.thisisms.com/forum/general-d ... ml#p221165

centenarian100 wrote:I am not necessarily dismissing the book as I have not read it.

Fair enough. Pick up a copy. It'll look great on your shelf right next to Allen Bowling's book.

I have hope. In the next 20 years, there will be 1,000 new treatments for multiple sclerosis. 990 will be bogus. 9 will be decent. 1 will be awesome.

I've been following MS research for almost 50 years now. Had an uncle with the disease in the '60s and that's when I started.

Can't count the number of times I read from the established MS world of medicine that a cure was "just around the corner!" This is biggest corner I've ever seen in my life. Every year there has been another promising drug that fixed MS in that poor EAE mouse only to fail miserably when tried on human MS. Guess they were part of the 990 bogus group.

Obviously MS is a very complex disease with an unknown cause. 90% of the focus has been on immune system altering drugs and we know where that has got us so far. Only in the past 10 years has there been some focus on other causes rather than a rogue immune system. We can't count the number of other treatments that have like usual, helped some patients, done nothing for others and made some people worse.

So is it any wonder that anecdotal reports of benefit have surfaced so often with MS. While not counting scientifically, anecdotal evidence has fueled many arenas of excitement that have helped some MS patients. Would a patient use a powerful immune system altering scientific drug will all its possible fallout or try something with anecdotal evidence that doesn't harm you if it does nothing for your MS? Difficult decision to say the least.

HarryZ wrote: Would a patient use a powerful immune system altering scientific drug with all its possible fallout or try something with anecdotal evidence that doesn't harm you if it does nothing for your MS? Difficult decision to say the least.

Interesting question… I prefer alternative treatments that have actual studies showing efficacy, such as reduction in saturated fat consumption, LDN, Inosine, exercise, Vitamin D, Vitamin B12, etc. There are many of treatments that are not in the mainstream but have more than anecdotal evidence behind them. I guess it all depends on ones definition of alternative therapies. Some define them as anything that is not prescribed by your doctor, or anything that costs less than a new car per year. While others relegate them to creations coming from some granola munching hippies bong resin.

I prefer a combined approach avoiding the Immune suppressants choosing the DMD Copaxone. And for my “alternative treatments” thats a BIG list as shown about half way down the page in my regimen…

http://www.thisisms.com/forum/regimens- ... 23868.html

Pointless? Maybe… but trying won’t kill me

I have worked for big pharma, that is one of the main reasons I see so many flaws in the clinical trials of DMDs. If you know how clinical trials are setup and how the pharma sales force engine works...you see things in a different light. I am not going to refute areas of medicine where drugs have helped as there are hundreds. However, lets not think there is a humane objective to carry out the proper investigations and trials into useful treatments, pharma doesnt make money that way.

I know a person who was involved in setting up a clinical trial for a MS medication and I couldn't agree with you more! These trials are set up for eventual big profit and if the drug helps MS patients, then that is a plus. Many drug companies will do whatever it takes to blacken the bottom line. And if afterwards it means making false claims that draw the attention and fines from the FDA, so be it. That's the cost of doing business.

While anecdotal evidence doesn't scientifically count, scientific evidence isn't necessarily full proof and can be manipulated. And caught in the middle is the MS patient trying to figure out what direction to go.

HarryZ wrote: Many drug companies will do whatever it takes to blacken the bottom line. And if afterwards it means making false claims that draw the attention and fines from the FDA, so be it. That's the cost of doing business.

Sad but true, nearly every company medical or not will do nearly anything to blacken the bottom line. The fact there is profit to be had in the medical industry is really the issue but it’s a catch 22….if there was no profit to be had in the medical industry it’s unlikely we would get the advances we do. There wouldnt be the incentive for large companies to invest billions to bring a product to market. Many great achievements are overshadowed by the corruption.

HarryZ wrote: While anecdotal evidence doesn't scientifically count, scientific evidence isn't necessarily full proof and can be manipulated. And caught in the middle is the MS patient trying to figure out what direction to go.

I think an MS patient must consider this when viewing studies… There is no money to be made in the studies pertaining to diet, LDN, Inosine, excersize or many other treatments, so I accept them. I view studies on drugs that make corporations billions with a bit more skepticism. Even so I started Copaxone... The mechanism of action has me intrigued more than the efficacy studies.

I've resisted crab drugs for now whilst im CIS although I'd lean towards Copaxone if I did have to choose one. What worries me about these drugs is how pharma never discloses details of patients who faired worse on the drugs and I don't just mean side effects but more those who've seen their disease progress faster on the drugs ("we will just say these dropped out"), and how the description of the mechanism of action always includes something like "it is not fully understood how the drug works..", that just isn't encouraging to me.

if there was no profit to be had in the medical industry it’s unlikely we would get the advances we do. There wouldnt be the incentive for large companies to invest billions to bring a product to market. Many great achievements are overshadowed by the corruption.

Yes, you have a point there but most initial medical discoveries are produced by the universities and the drug companies cherry pick those that promise a big return. And these same companies spend far more on marketing and sales than they do on actual research.

I think an MS patient must consider this when viewing studies… There is no money to be made in the studies pertaining to diet, LDN, Inosine, excersize or many other treatments, so I accept them. I view studies on drugs that make corporations billions with a bit more skepticism. Even so I started Copaxone... The mechanism of action has me intrigued more than the efficacy studies.

A MS patient who researchers on the internet has this ability but most rely on their doctors for info. As for Copaxone...you realize that in its initial trials for FDA approval, it failed. Data manipulation finally got it just to the end point numbers needed. The Cochran Group stated Copaxone was all but useless in the treatment of MS. Some patients swear by it. Others say it did them no good at all. It's in the scientific approved category. Makes you wonder! Makes it more than difficult for MS patients to figure out what medication, if any, to take.