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

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

Postby willowford » Fri Apr 29, 2011 1:02 pm

Cece: good question on the funding issue. yes, pharma has funded studies on its own meds. that's what they do after all - develop drugs. But there are other agencies, many in fact, that fund the majority of studies. In my limited research experience, I was funded by a graduate funding agency in Canada (scholarship), MS Society, and there are also in canada national organizations that fund research (CIHR, NSERC, etc). They do not get involved in the study itself. They only make sure the study is well-designed before funding it - that's where their involvement ends.

Scorpion, no problem at all. I don't mind. Thanks for the welcome!

My post saying "the majority of docs are just doing it just to get in on it" is only incorrect in the use of the word MAJORITY - because I don't have numbers on how many are/are not and docs' motivations. So I acknowledge that.
But when docs half way across the world agree to treat patients for thousands of dollars in cash using a procedure they never even got trained in by the original author or anyone else, and start doing things not recommended by the original author (putting in stents, etc), and then worst of all, NOT providing much in terms of post-op care and sending patients on planes back to where they came from, I consider THAT completely unethical... and if a doc is behaving in that way, as nice as he/she may be to patients, they are not demonstrating compassion and care for patients' who leave their care.
This should make us all wonder... Why didn't those docs take the time to receive training (even via telephone) from the creator of the technique? Why would they say they are going based on Dr. Zamboni's studies, and then put in stents even after Dr. Zamboni specifically emphasized that he did not do that in his technique? Why were patients sent home on planes after the procedure? Given that we know next to nothing about the long-term complications, why didn't the docs keep the patients under observation long enough? Why didn't they first make sure they had a doctor contact in the home country of their patient who they would send the procedure report to so docs know what exactly was done and if there were any issues (this is standard within a country)? Why didn't they make sure that patient's family doc was aware and informed on how to treat potential complications? Would it have been too much money/effort on their part to keep patients around longer so if something goes wrong they are there to address it? Too much effort to arrange with a doc from home country a plan for dealing with complications, return of symptoms etc.? This is why I said what I said ... only about SOME docs... there may be one of these, there may be many. The numbers I don't know. All I know is that it has happened. Do you not think that it is unfair for patients to receive suboptimal care from any doc anywhere in the world?
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Postby willowford » Fri Apr 29, 2011 1:21 pm

HappyPoet wrote:
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).
:)


Thanks for the welcome. I explained myself (hopefully) in the above post. I am clearly intent on at least attempting to figure out a solution to this "stand-off" between some patients and some of their docs (my perception). Docs need to be more aware of our needs (and medical schools are working on this nowadays-at least in Canada). But I am having difficulty figuring out a way for patients to make sure they're not mislead, without actually having to go through years of studying... it may not be possible because research is more complicated than a few posts can describe, but I'm still trying to think of a way to help the general public see why research is done and why only well-designed studies will ever give us final answers to anything.

And sorry for being overactive these days with all these super long posts. Don't know why I care so much but this issue is driving me nuts. Maybe its that I met so many MS patients in my training and spent hrs with each of them talking about their experiences! Maybe it's that before anything else, I am myself a patient (not MS, though I've been diagnosed with everything docs could think of - long story!) I just think that instead of talking about patients' rights to CCSVI, we should be talking about patients' rights to make informed decisions when they are this important. Research drills the informed consent thing deep into us :) But it's often not applied in patient care, which is truly unfair.
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Postby scorpion » Fri Apr 29, 2011 1:56 pm

HappyPoet wrote: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).
:)


I will not believe you until you write a poem entitled "Ode to Scorpion" that expresses that sentiment! :wink:
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Postby euphoniaa » Fri Apr 29, 2011 2:21 pm

willowford wrote:And sorry for being overactive these days with all these super long posts.


I don't mind long posts and I'm enjoying some of these exchanges, but it really helps those of us whose vision sucks if long posts are broken up into very short paragraphs of only a sentence or two.

With a space between each paragraph.

Please?

Thank you. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby willowford » Fri Apr 29, 2011 2:23 pm

euphoniaa wrote:
willowford wrote:And sorry for being overactive these days with all these super long posts.


I don't mind long posts and I'm enjoying some of these exchanges, but it really helps those of us whose vision sucks if long posts are broken up into very short paragraphs of only a sentence or two.

With a space between each paragraph.

Please?

Thank you. :)


Absolutely! Sorry, I didn't think of that! Will do! :)
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Postby ozarkcanoer » Fri Apr 29, 2011 2:59 pm

Consult you doctor ? Not all doctors are created equal.

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Postby HappyPoet » Fri Apr 29, 2011 5:33 pm

Willowford wrote:I just think that instead of talking about patients' rights to CCSVI, we should be talking about patients' rights to make informed decisions when they are this important.

I think we can agree that patients have both rights, to CCSVI and to informed decision-making, and you'll find both rights represented here at TIMS. :)

Regarding informed decision-making, a search of TIMS for "medical tourism" gives 110 results, so the topic hasn't been ignored here. Also, the doctors' threads, where questions are answered, greatly helps with informed decision-making as do the many videos made of doctors' presentations at various conferences.

If you believe you can add value to this topic in the form of easy-to-understand statistics, rules-of-thumb to follow, and such, then that's where you should concentrate your efforts (and your strength, if you have problems with fatigue).

Btw, posts can be edited which means you can put paragraph breaks into your previous posts -- look for the "Edit" button in the upper right corner of your posts.
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Postby willowford » Fri Apr 29, 2011 5:47 pm

1eye wrote:
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


I absolutely respect your opinion 1eye. However, history tells us that knowledgeable people (patients, docs...etc.) are not what is needed to get answers about such complex issues as the body.

Even docs who base their patient care on their personal opinions, despite even the best intentions, can cause more harm than good, if they don't pay attention to the facts out there.That's precisely been my point all along.

While it is respectable that you and others may believe that there are enough data out there, the actual mathematics of the number of patients included tells us that it is not enough... the authors of the original study have time and again emphasized that this is still experimental and must be researched further before they can draw conclusions.

Again, NOT suggesting that people should/shouldn't get any particular treatment. Just pointing out that if even the developers of this procedure for MS with their knowledge and expertise say they can't yet draw conclusions with high certainty (because as good scientists they realize how the scientific process works), then I'm not sure how the rest of us can come to the conclusion that there is "plenty of information...".
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Postby Cece » Fri Apr 29, 2011 6:53 pm

Just a note that it is not a procedure for MS, per se. It is a procedure to treat the newly identified condition of venous stenoses known as CCSVI. While this may be highly associated with MS and may encompass some symptoms (cogfog, fatigue) previously ascribed to MS, we don't yet know the precise relationship between CCSVI and MS.

It would've felt more comfortable going for the procedure if the researchers were further along in the discovery process. But I reached the threshold for myself where I had enough information to go for it. One of my jugulars was blocked 100%, the other was blocked 80%, and I had symptoms of cerebral hypoxia. Angioplasty is a common procedure, in use for over twenty years, done on an outpatient basis. Even so I travelled to go with a doctor I trusted, who was experienced with the procedure, and whose beliefs aligned with my own on the importance of things like anticoagulation and IVUS.
I just think that instead of talking about patients' rights to CCSVI, we should be talking about patients' rights to make informed decisions when they are this important.

We have touched on this before, although it's been some months. The idea being that you can't consent to the risks when the risks are unknown. This is different from Tysabri, for example, which has a risk of fatality but you can consent to that because it is known.

Belmont ethics report:
http://ohsr.od.nih.gov/guidelines/belmont.html
Beginning with the first section of the Belmont report, we can think about the distinction between practice and research and whether there is a reasonable expectation of success when the CCSVI treatment is performed.
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Postby willowford » Fri Apr 29, 2011 7:04 pm

Excellent post Cece.

The link you posted clarifies how things SHOULD be in order to protect patients. All researchers/clinicians are bound by these principles (in canada, similar regulations exist).

Unfortunately, they are not always enforced - docs do things without first ensuring that an objective outsider has reviewed their protocol.

And some in the general public and patients' groups do not recognize the importance of these principles (perhaps because they have not had to be exposed to the history of what happens when these principles are not followed).

Interesting also is that they note that just cause a clinician is doing something new and keeping track of some of the relevant results, doesn't mean they can call it "research".

To get answers, real clinician-researchers collect all sorts of objective information and have mechanisms in place to avoid bias (theirs or the patients').

FROM THE GUIDELINES YOU POSTED:

"When a clinician departs in a significant way from standard or accepted practice, the innovation does not, in and of itself, constitute research. The fact that a procedure is ”experimental,” in the sense of new, untested or different, does not automatically place it in the category of research. Radically new procedures of this description should, however, be made the object of formal research at an early stage in order to determine whether they are safe and effective. Thus, it is the responsibility of medical practice committees, for example, to insist that a major innovation be incorporated into a formal research project. (3)

Research and practice may be carried on together when research is designed to evaluate the safety and efficacy of a therapy. This need not cause any confusion regarding whether or not the activity requires review; the general rule is that if there is any element of research in an activity, that activity should undergo review for the protection of human subjects."

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Postby willowford » Fri Apr 29, 2011 7:13 pm

Cece wrote: The idea being that you can't consent to the risks when the risks are unknown. This is different from Tysabri, for example, which has a risk of fatality but you can consent to that because it is known.



Another great phrase that summarizes so much. Yes, anything we take into our body alters us in some way, desired and undesired.

If noone took any of these risks, then we'd never be able to conduct any study involving treatment.

At least someone like yourself, goes into an "experimental" procedure knowing (hopefully also informed by the doctor), that the risks/ benefits are not known and the potential risks are ... that you may or may not see any benefits, and that it is possible that you could get worse (because none of this has yet been established).

I do wonder if every patient gets the benefit of being fully informed by the clinician-scientist in advance.
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Postby 1eye » Fri Apr 29, 2011 7:43 pm

However, history tells us that knowledgeable people (patients, docs...etc.) are not what is needed to get answers about such complex issues as the body.
Golly, well, I sure am glad you cleared that up for me. It is getting a tad windy around here, isn't it? I personally have a Bachelor of Fine Oughts with a major in Perambulation. I am well qualified to advise anyone of the merits of watching Lipitor commercials on television. Complex issues such as the body are as tiddlywinks to me.
Last edited by 1eye on Fri Apr 29, 2011 7:47 pm, edited 1 time in total.
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby willowford » Fri Apr 29, 2011 7:46 pm

1eye wrote:
However, history tells us that knowledgeable people (patients, docs...etc.) are not what is needed to get answers about such complex issues as the body.
Golly, well, I sure am glad you cleared that up for me. It is getting a tad windy around here, isn't it? I personally have a Bachelor of Fine Oughts with with a major in Perambulation. I am well qualified to advise anyone of the merits of watching Lipitor commercials on television. Complex issues such as the body are as tiddlywinks to me.


I apologize. I don't understand the joke.
Any sentence can be taken out of context and interpreted as something it is not. Anyone who read my entire post (yes, I know, it's long) would know what the meaning of this phrase was.
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Postby 1eye » Fri Apr 29, 2011 8:06 pm

There was not much of a joke there. I was kind of making sport of the idea that people like "docs" and "patients" and other unnamed classes of people cannot get their heads around something "complex" like 'the body' and so which deities should they worship instead? I subscribe to the notion that neither priests, kings, magicians, nor any other kind of 'special people' are required to understand the truth. It is not arrived at by tea leaves or by votes. It is what it is and it stands to reason. No gimmicks, no religious belief required. Common sense recommended.
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Postby willowford » Fri Apr 29, 2011 8:13 pm

1eye wrote:There was not much of a joke there. I was kind of making sport of the idea that people like "docs" and "patients" and other unnamed classes of people cannot get their heads around something "complex" like 'the body' and so which deities should they worship instead? I subscribe to the notion that neither priests, kings, magicians, nor any other kind of 'special people' are required to understand the truth. It is not arrived at by tea leaves or by votes. It is what it is and it stands to reason. No gimmicks, no religious belief required. Common sense recommended.


I have never in any of my posts said anything to indicate that I believe in priests, kings, magicians or "special people". (nor does my opinion on these things matter in finding answers to important questions anyways). So I am unclear about what you're insinuating here.

If you truly believe that humans have already learned everything there is to learn about the human body and that it's all just basic, simple and logical, then you and I cannot continue the discussion with each other because we are on different pages on the core of the issue.

Either way, I believe my posts are clear on what I actually meant to say. If not, ask me to clarify.
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