'Why You Should Consult Your Doctor, Not Facebook...'

willowford · Post by **willowford** » Fri Apr 29, 2011 7:03 am

1eye wrote:Careful: being involved in a study is no guarantee of anything. In fact, I think there are a lot less safeguards than there should be for people who are involved in studies.

I think we can all agree that nothing is a guarantee in life. I get behind the wheel everyday, risking fatal car crash beyond my control. But we all do these things, because the risk levels are known and we decide that they are low enough for us to drive (or whatever).
A research study in Canada is by law REQUIRED to go through stringent process of ethics (where a board of several physicians and usually other community members review the study, provide feedback as to what risks to patients safety or health has not been considered, then ask for revisions...and so on). The process takes months to a year (to make sure as much as possible is covered). It also goes through a separate board that reviews it specifically for randomized control trials - again, several more individuals who are not involved or invested in the study look at it from an outsider perspective to make sure the procedures are as safe as possible and that complications are minimized and there are sufficient plans of action for what to do if and when they occur. This is all the paperwork you refer to. It's there because if it wasn't, myself and other community members like me would be outraged. It's there to avoid the types of unreasonable experiments that used to be done on people without fully telling them the risks and just overemphasizing the potential benefits. THAT would be unethical. Paperwork is not the issue.

So, yes, studies going through these checks ARE safer than a doctor who decides to do this procedure on his/her own. This does not mean there are no risks - there always is. But it means that steps have been taken to minimize risks, make sure everyone is trained enough, and that there is a plan in advance to handle complications.
Not to mention the benefit to the rest of society when people volunteer for these studies as I mention above.

Cece · Post by **Cece** » Fri Apr 29, 2011 7:11 am

ALL this information that could benefit the rest of the MS community if it were collected objectively from a large group of patients, is gone.

Now you are preaching to the choir.
When it comes to CCSVI, things have moved very fast.
There are some doctors collecting registry information on their patients. Dr. Hubbard is the best known of these. American Access Care also collects registry data. This is at least a start. Dr. Siskin has also published a safety study on his early patients, showing that this was a very safe procedure in that short-term analysis.
I think doctors should be collecting registry data and patients should be choosing doctors who do, wiithin reason.

I briefly looked into the research on modafinil and MS, I don't think I ever found a large scale safety study. The variable disease course makes proving anything in MS more of a challenge than in other diseases.

1eye · Post by **1eye** » Fri Apr 29, 2011 7:18 am

ALL this information that could benefit the rest of the MS community if it were collected objectively from a large group of patients, is gone. Personal stories do not help fill this gap - because they are based on one individual, and because individuals do not go through strict data collection on themselves (e.g., measuring their cognition objectively, their spasticity objectively, voiding symptoms using objective measures, the timeline of all this...etc). They only report the global picture, which usually doesn't apply to everyone else.

Yes, had we but world enough, and time, all that info could be collected, and not be as you say 'gone' (although I don't agree it is). However, I believe we have seen the results of less than perfect study design, execution, and analysis in this forum.

As I said to my wife, I'll try to be perfect for a while, if you will try to live my life for a while.

willowford · Post by **willowford** » Fri Apr 29, 2011 7:22 am

Cece wrote:
ALL this information that could benefit the rest of the MS community if it were collected objectively from a large group of patients, is gone.
Now you are preaching to the choir.
When it comes to CCSVI, things have moved very fast.
There are some doctors collecting registry information on their patients. Dr. Hubbard is the best known of these. American Access Care also collects registry data. This is at least a start. Dr. Siskin has also published a safety study on his early patients, showing that this was a very safe procedure in that short-term analysis.
I think doctors should be collecting registry data and patients should be choosing doctors who do, wiithin reason.

I briefly looked into the research on modafinil and MS, I don't think I ever found a large scale safety study. The variable disease course makes proving anything in MS more of a challenge than in other diseases.

Unfortunately, the majority of docs doing this around the world, are just doing it to "get in on it". They are not all interested in furthering knowledge about this. Also keep in mind, keeping registries of the basics is helpful, but trials must go beyond that - measure things best they can - continue to monitor long-term...etc. And they must be overseen by people who have no "investment" (emotional or financial) in the results to make sure there is no bias.

I don't recall the size of provigil studies - I know they were randomized controlled (so as unbiased as we can get in science). Keep in mind though, the safety issue has been addressed in other populations - there is no reason to expect it to be worst in MS. Stimulants and provigil (not a stimulant) don't actually cause "increased" nerve firing per se (which as you mentioned could theoretically cause further harm to already overtaxed neurons in MS). They increase alertness by increasing levels of certain neurotransmitters (chemicals), which isn't a big issue in MS. Also, provigil is much safer than stimulants (Ritalin...etc), the latter having many more risks.

willowford · Post by **willowford** » Fri Apr 29, 2011 7:29 am

1eye wrote:
However, I believe we have seen the results of less than perfect study design, execution, and analysis in this forum.

Unfortunately, information on forums are based on personal experiences, which are by definition, not scientific (some ppl are part of multiple forums and may post several times, based on a small sample, cannot be generalized to others, no objective measures used to assess, no subjective questionnaires/surveys used to track progress and side-effects). And as humans, hope/other emotions influence our opinions and experiences, precisely the reason blind studies are needed to make conclusions. Their stories are inspiring and bring hope to others. But the information cannot be added up to draw any conclusions.
Of course, if those patients had any benefit, then it is absolutely worth it and makes us all hopeful that we're onto something! But that's something that at this time patients can only know after their decision - not much is known to help with the decision yet.

1eye · Post by **1eye** » Fri Apr 29, 2011 8:40 am

that's something that at this time patients can only know after their decision - not much is known to help with the decision yet

This is definitely opinion. Many here believe that there is plenty of information available to guide a decision, and very large numbers of knowledgeable people to help out. One thing about pwCCSVI, we are not alone, and never will be.

Try http://ccsvi.org

Cece · Post by **Cece** » Fri Apr 29, 2011 9:32 am

Also keep in mind, keeping registries of the basics is helpful, but trials must go beyond that - measure things best they can - continue to monitor long-term...etc. And they must be overseen by people who have no "investment" (emotional or financial) in the results to make sure there is no bias.

But where does the funding come from?
We already have the pharmaceutical funding influencing drug research and swaying what researchers choose to research.

We have a handful of small trials here and there but the only big one right now is Dr. Zamboni's Brave Dreams in Italy. If Dr. Dake's small trial goes well, I expect he will pursue a big trial.

Plus I have heard that right now it is time for tweaking, not trialing. There have been procedural advancements on nearly a monthly basis. There is a sharp learning curve with this procedure. The doctors conducting the trial need to be at the top of their game, not newbies with no experience with CCSVI, and how else do you gain that experience?

HappyPoet · Post by **HappyPoet** » Fri Apr 29, 2011 9:58 am

Willowford,

Visitors to TIMS are greeted to a wealth of information that comes in many varieties, from tracking threads and anecdotal experiences shared by pwMS to advocacy associations dedicated to providing evidence-based research (CCSVI Alliance), to the valuable, respected, and appreciated opinions of educated, trained, and experienced doctors who discuss their theories and techniques and kindly answer our questions in a manner that is respectful, timely, and caring.

You don't need to worry that TIMS isn't balanced -- we have resident naysayers, in case you didn't know.

scorpion · Post by **scorpion** » Fri Apr 29, 2011 10:38 am

HappyPoet wrote:Willowford,

Visitors to TIMS are greeted to a wealth of information that comes in many varieties, from tracking threads and anecdotal experiences shared by pwMS to advocacy associations dedicated to providing evidence-based research (CCSVI Alliance), to the valuable, respected, and appreciated opinions of educated, trained, and experienced doctors who discuss their theories and techniques and kindly answer our questions in a manner that is respectful, timely, and caring.

You don't need to worry that TIMS isn't balanced -- we have resident naysayers, in case you didn't know.

HappyPoet · Post by **HappyPoet** » Fri Apr 29, 2011 10:40 am

willowford wrote:Unfortunately, the majority of docs doing this around the world, are just doing it to "get in on it".

This is only your opinion and should be qualified as such; otherwise, as your comment now stands, you are spreading misinformation.

scorpion · Post by **scorpion** » Fri Apr 29, 2011 10:47 am

HappyPoet wrote:
willowford wrote:Unfortunately, the majority of docs doing this around the world, are just doing it to "get in on it".

This is only your opinion and should be qualified as such; otherwise, as your comment now stands, you are spreading misinformation.[/quote]

This post is ridiculous. Sorry Willowford but there are some members(only a few) who think that posts on the CCSVI forum must conform to what they believe but the majority of us on here appreciate you providing your insight and opinions. Welcome.

HappyPoet · Post by **HappyPoet** » Fri Apr 29, 2011 10:51 am

scorpion wrote:
HappyPoet wrote:Willowford,

Visitors to TIMS are greeted to a wealth of information that comes in many varieties, from tracking threads and anecdotal experiences shared by pwMS to advocacy associations dedicated to providing evidence-based research (CCSVI Alliance), to the valuable, respected, and appreciated opinions of educated, trained, and experienced doctors who discuss their theories and techniques and kindly answer our questions in a manner that is respectful, timely, and caring.

You don't need to worry that TIMS isn't balanced -- we have resident naysayers, in case you didn't know.

Ah, Scorpion, a forum favorite with a wicked sense of humor!
And by far, the smartest of them all, imo.

Cece · Post by **Cece** » Fri Apr 29, 2011 11:15 am

The idea that the majority of our CCSVI docs are doing it just to get in on it is a bit inflammatory, isn't it.

Even so, willowford has made some well thought out contributions.

Cece · Post by **Cece** » Fri Apr 29, 2011 11:24 am

As I keep seeing the title of the article ("why you should consult your doctor, not facebook"), I keep thinking, which doctor? Dr. Sclafani (my NY IR, in favor of the procedure), Dr. Cumming (my MN IR, in favor of the procedure), Dr. Calkwood (my neurologist, vehemently against the procedure), my GP (defers to the specialists)? When the doctors don't agree, aren't we already on our own with this decision?

HappyPoet · Post by **HappyPoet** » Fri Apr 29, 2011 12:53 pm

Scorpion, my post to Willowford is respectful because I do not believe he would want his comment, an introductory sentence, to stand as is, most especially considering some of his very strong views on information/misinformation, many of which I happen to agree with, obviously.
And yes, I still think you're the smartest of your bunch.

Welcome Willowford,

Because of Cece's comment, I look forward to more of your posts and to more information on the project that brought you here... I participated in your poll, btw (I'm in the "Need more info" 33% group).