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

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

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

Postby Cece » Thu Apr 28, 2011 4:29 pm

www.fastcompany.com/1750384/dr-facebook-is-wrong

Why You Should Consult Your Doctor, Not Facebook, On Medical Issues

A controversial (read: insane) alternative multiple sclerosis treatment has gained a popular following in Canada via social media, wrongly influencing research priorities. The truth needs its own social-media PR campaign, and doctors might just be ready to wage it.


How does that quote go? 'Those who were dancing were thought to be insane by those who could not hear the music'?

"When patient groups are using social media to advocate and mobilize, scientists must employ similarly effective tools to communicate," conclude the study authors, pointing out that today's public is "no longer deferential to experts."

My question in this regard is what about the doctors who have posted here at TIMS? Do we discount their contributions because they have been in favor of this insane theory?
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Postby bluesky63 » Thu Apr 28, 2011 6:08 pm

Interesting. I wonder why we are encouraged to consult the Internet on every medical issue except this one. :-)

I'm thinking of WebMD, countless medical sites, blogs, forums, many encouraged and even run by established physicians and medical societies -- even the MS Society.

Every business model has had to adapt to the transparency and speed of information available online, to the way that people share experiences and instant feedback, research, discoveries. The oldest, most conservative, most controlling professions and people may have the hardest adjustment.

Some people find evolving communication threatening and some find it exhilarating and some just roll with whatever is the current model. The world moves on.

So today's public is no longer deferential to experts -- that may be because many people now have the tools and information to instantly access rich research material and have an intelligent discussion with thousands of bright people -- including passionate medical professionals -- instead of having to wait nine months for fifteen minutes with one isolated doctor who may or may not be having a good day.

I love this! Of course there may be problems with the learning curve of the Internet. The answer is not to fear self-education and advocacy. I think it sounds great to add the scientists and others to the mix! Bring it on! The discoveries will be even more exciting! :-)
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Postby Bethr » Thu Apr 28, 2011 6:30 pm

Absolutely! I don't know where I would be without this group, and being able to discuss everything. I wish MORE Doctors would pipe in.
Without the support I've had, (thanks merlyn, Jimmylegs and many others), I'd still be in a fug on the couch :lol:
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Postby Lyon » Thu Apr 28, 2011 6:35 pm

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Last edited by Lyon on Sun Nov 20, 2011 4:21 pm, edited 1 time in total.
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Postby WeWillBeatMS » Thu Apr 28, 2011 6:46 pm

Lyon,

Any chance you could just go ahead and make that your new profile picture? HA!

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Postby 1eye » Thu Apr 28, 2011 8:05 pm

My question in this regard is what about the doctors who have posted here at TIMS? Do we discount their contributions because they have been in favor of this insane theory?


I was just watching Dr. Hubbard's talk in which he expressed amazement at the disrespect coming from otherwise well-spoken doctors towards other doctors. We can all think of notable examples. It seems there is enough money, political power, and ego on the line here to justify the kind of ad-hominem attack-ad styled arguments we have seen.

They have been aimed indiscriminately at patients, caregivers, doctors, politicians, scientists, and salesmen. They have come from both sides of the argument. The noticeable change is that the former deference accorded automatically to an "MD" by another, is seemingly not of this century.
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Postby Cece » Thu Apr 28, 2011 8:44 pm

I remember one of the mods saying that CCSVI was the most controversial forum here at TIMS, ever. That this is where the flare-ups happen, if there is a flare-up. I think just as we're seeing those flare-ups among us patients as we try and figure this out and take sides, we see the flare-ups among the doctors as they try and figure this out too. Very human of us all.
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Re: 'Why You Should Consult Your Doctor, Not Facebook...'

Postby ikulo » Thu Apr 28, 2011 9:17 pm

"... today's public is "no longer deferential to experts."


Yeah, there's a reason: http://www.time.com/time/health/article ... 44,00.html
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taking advice from facebook?

Postby willowford » Thu Apr 28, 2011 10:24 pm

Thanks for your post Cece.

I personally do find it concerning that patients (with any problems) are consulting facebook and forums to help them decide what they should do to their body. The reason this is concerning is not because anyone should "block" people from access to information nor that people shouldn't have access to information. The real issue is that the sources consulted are for the most part filled with unreliable information - and even reliable information is misinterpreted sometimes. There are lots of examples of this everywhere and I'm sure you have seen it too - people make statements like... "from what I've seen on forums 50% of MS patients respond [fill in the blank] to CCSVI treatment"... this is a huge problem because what people post on the internet is (a) their personal experience/ view and not based on a large number of people, (b) may be posted on several forums to which they belong - so our reader may be thinking these are separate ppl, and (c) no study that bases its findings on people's or doctor's own assessment ONLY is every going to be reliable and will always be subject to bias... this is unavoidable (this is why randomized, blinded, controlled trials are a must for any treatment).

As for comments of docs on this site or elsewhere, I think we can all agree that even doctor's personal opinions is not sufficient to conclude that something helps/does not help patients. (docs are subject to biases too - on both sides of the debate). So wherever they are expressing only opinions (in their office, to media or on websites), we need to treat these as just that - their personal opinions. Only when physicians talk about the actual science/data/numbers that are reliable and are available, does that constitute evidence that we can use. And lots of docs are doing just that - informing themselves with actual data and providing the evidence in summary form for the rest of us. Whatever that evidence says (whether or not it agrees with our own preferences), we need to pay attention to those and use them to guide our decisions. Personal opinions are dime a dozen in any field - everyone has a tip to give us on something - doesn't mean it's all based on fact.
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Re: 'Why You Should Consult Your Doctor, Not Facebook...'

Postby willowford » Thu Apr 28, 2011 10:34 pm

ikulo wrote:
"... today's public is "no longer deferential to experts."


Yeah, there's a reason: http://www.time.com/time/health/article ... 44,00.html


The second sentence says: "about two-thirds of the findings published in the top medical journals are refuted within a few years."

Interesting and scary article for most of us!
But if you talk to docs (and if there are any here, please correct me if I'm wrong), they already have known this all along! That's the problem - doctors know things that we don't know about research - this is a prime example. Every good doc knows that all scientific findings are preliminary - not because anyone is lying - the real reason is because every scientific study is DESIGNED to allow for 5% chance of error! (because of the way statistics are done - this is necessary because it is the ONLY way we'll ever get any answers - the details are long and require stats courses)

So docs/researchers have already known this since they first started the training. This is precisely why most docs are not going to start using a treatment right away - which can be frustrating for patients. But when the media/ppl report the findings, it is often viewed by others as the final answer. that is not the case because a requirement of any scientific discovery/study is that it is replicated over and over again - and expanded - and different aspects of it further explored...etc. BEFORE we can conclude with any certainty that the findings are reliable.

These differences between patients and doctors in how research is understood and read is at least partially responsible for patients and docs not seeing eye to eye sometimes. cause docs are looking at it with info that we just don't have.
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Postby 1eye » Fri Apr 29, 2011 6:26 am

patients and docs not seeing eye to eye sometimes. cause docs are looking at it with info that we just don't have
When my friend Dr Bob (yes the same one that gave me the Doppler) was going to medical school they were doing a lot of eye surgery to correct vision. This was before LASER surgery. See it's not the doctors' fault. They're just there, and they hear what they they hear. His response was: "Well, I'm going to wait about 20 years, and if there are no problems, I'm going to have it done."

So, true to his word, about 20 years later, he had it done. He does not wear glasses anymore. Seemed like a very conservative approach, compared to the millions of surgeries then being undertaken.

There's no conspiracy to keep anything secret, or cover up error rates. The built-in percentage allowances for error are merely an acceptance of the reality that nothing is ever perfectly correct, and that perfection is impossible.

I should not have to tell anyone here, that the conservative approach to your own health is perfectly justifiable. Let's say there turned out to be a 1 % chance of blindness. Dr. Bob would have been very glad he didn't have the correction, because when you just happen to fall into that 1% crack in the sidewalk, you miss out on doing any surgeries, driving, and what not. It is not trivial. I'd rather leave those odds in Vegas.

By the same token, when you've already fallen in, and somebody is offering you a hand to get out, that's a different story, and the conservative approach can and does belong on the compost pile, especially at my age, in my life, on this date. To them I say yes please, thank you, may you be an hour in heaven before the devil knows you're dead.
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Postby willowford » Fri Apr 29, 2011 7:18 am

1eye wrote:There's no conspiracy to keep anything secret, or cover up error rates. The built-in percentage allowances for error are merely an acceptance of the reality that nothing is ever perfectly correct, and that perfection is impossible.


I absolutely agree with your post. I should have noted, when I say docs are looking at things using info we just don't have, it's not because they are hiding that info - it's because it took them ~9-12 years of education and training after high school to learn to interpret info correctly and to gain that knowledge. Most of us can't become experts in everything because it is not our career.
I agree with you that there is no conspiracy - the problem (and the hesitancy of docs and others) is that the "risks" that you talked about, are just not known for this procedure yet because there hasn't been enough studies. I just hate patients thinking incorrectly that this is a fool-proof cure and dishing out thousands to a doc somewhere in the world who doesn't even bother following the studies. Who knows what those docs are doing? (e.g., zamboni never placed stents - yet patients are now getting stents with the additional risks that we know stents always carry - with NO evidence that stents are even beneficial).

Zamboni himself has said time and again that the procedure is still in the experimental phases and that people should not be going to other countries where docs have not received training to do this. Or getting it from docs that have not gone through ethics and other regulatory protocols that ensure patient safety.

Does this mean ppl shouldn't get the procedure? Absolutely not. because clinical trials (which are required to see what the effect of this is) require people to volunteer to have the procedure done - both for hopefully their benefit, and also to contribute to science for the future. But MS patients are looking at themselves as "guiny pigs" that are willing to take or do anything on the off chance they'll get better. This is unacceptable. Patients with MS are human beings who deserve to be safe - any studies they participate in MUST go through all sorts of regulatory checks to make sure they are as safe as possible. Those getting this treatment outside of a study are risking complications for which their home country is not prepared/does not have guidelines! (ie, what happened in Canada). Those participating in this as research subjects as part of an approved study can be certain that there are guidelines in place to handle any foreseeable complication... this is the minimal requirement in any study.
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Postby Cece » Fri Apr 29, 2011 7:37 am

But MS patients are looking at themselves as "guiny pigs" that are willing to take or do anything on the off chance they'll get better. This is unacceptable.

The flip side is that this is a really terrible disease. Doing nothing means getting worse.

The list of approved treatments include Tysabri, with its 1 in a 1000 risk of PML, a terrible brain infection that is often fatal.

Off and on for five years, I have taken Provigil, a drug prescribed off label. Provigil was tested on people with healthy brains, not people with MS damaged brains. I took Provigil not knowing if it was harming me or not. My doctor prescribed it not knowing if it harmed or not. There is reason to believe it would harm an MS brain, due to the increased speed and use of terribly overtaxed neurons.

People have participated in chemotherapy trials. People have had their immune systems ablated. People have given up on it all and committed suicide. Or fought to the end and died of MS anyway.

What is acceptable and unacceptable is not as black-and-white in these circumstances. Venoplasty is a simple outpatient procedure that has been done for over twenty years. It is not a new technique, just being used in a new area and on malformations that are more challenging than anything our IRs have seen elsewhere in the body.
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Postby 1eye » Fri Apr 29, 2011 7:47 am

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.

The only thing working in the favour of, say, a person who has a relapse after angioplasty in a study, is the desire of their treating neurologist to find the angioplasty failed. If they were testing a drug, the phone might not be answered.

The whole point of running studies in Canada is to provide some kind of bureaucratic skeleton around which to create the paperwork necessary to get 75,000 people treated.

I know, Dr. Zamboni says... Does anybody really think that Canada will be contributing a lot of new information, and that if you don't sign up for trial X, it won't happen?

Yes, I think some people can be misled, and shoddy work can happen. The likelihood of this in Canada, I believe, is less, especially if the government is paying, believe it or not.
Last edited by 1eye on Fri Apr 29, 2011 10:02 am, edited 1 time in total.
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Postby willowford » Fri Apr 29, 2011 7:52 am

Cece wrote:

Off and on for five years, I have taken Provigil, a drug prescribed off label. Provigil was tested on people with healthy brains, not people with MS damaged brains. I took Provigil not knowing if it was harming me or not. My doctor prescribed it not knowing if it harmed or not. There is reason to believe it would harm an MS brain, due to the increased speed and use of terribly overtaxed neurons.

People have participated in chemotherapy trials. People have had their immune systems ablated. People have given up on it all and committed suicide. Or fought to the end and died of MS anyway.



I agree with you that this is a personal choice. We all take risks in life. I certainly do. But the level of risk is know and determined to be minimal (what's minimal risk also varies depending on the topic). For instance, my meds have a ~20% chance of causing palpations, which can be severe enough to cause heart problems - despite the high risk, I take the meds but I made that choice based on complete information - I know exactly what I'm risking and approximately how much. I'm not going into it blind. So it's always a personal choice, but it still has to be an informed choice.

People taking part in chemo studies (drug studies, CCSVI studies) are all truly contributing to furthering our knowledge. As I mentioned in my post above, studies in US and Canada go through stringent ethics/medical criteria to make sure all necessary safeguards are in place to keep them safe (not always possible but lowers the risks). When people take part in experimental procedures outside of university/clinical studies, they do not know what, if any, of the possible complications have been considered and what if any protocols there are for handling them. Also, unfortunately, when people do procedures outside of these studies, their results (pre- and post-) are "lost"... whether and how much they benefited, which symptoms they had, which improved, what the time course of improvement was, what were immediate side-effects, what were long-term side-effects, what were the rates of complications both sever and more mild...etc. 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.


Side note: provigil HAS been tested in MS. It's in the literature if you'd like to look (you won't find it under provigil - search Modafinil). (it wasn't developed for MS but has been tested). The lack of hype in using it in everyone is because the studies showed mixed results (no clear benefits in general). But if it works, then great - cause patients can be informed of the risks.
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