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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #1  
Old 11-10-2009, 08:29 PM
2cool4U 2cool4U is offline
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Default The placebo effect

I'm guessing that this won't be the most popular thread on here, but this topic comes up frequently in medical care. I think everyone who goes through multiple treatments for back pain should be aware of the topics discussed in these articles to properly assess what's working and what's not. It also helps to have this knowledge when thinking about the next step.

While it's not always possible to get good double-blinded, controlled clinical trials for every possible treatment, it's important to understand that these trials are the only way to unequivocally prove a treatment's efficacy.

In other words, if it has been tested and proven to be no more effective than placebo, think very carefully before wasting time, money and hope. On the other hand, if it has been shown to be better than placebo, it may be worth a shot.

I particularly like the editor's note on the Yahoo article that $2.5 billion has been spent testing alternative medicine without any conclusive proof of effectiveness. That's $2.5B on the research, not the total dollar amount spent by us patients in desperate searches for relief. I'm sure that's many times greater.

Maybe our personal and tax dollars would be better spent on more traditional research.

http://tinyurl.com/ycb6zx4

http://news.yahoo.com/s/ap/20091110/...medies_placebo

http://www.cancer.org/docroot/ETO/co...ebo_Effect.asp
__________________
L5-S1 rupture 11/04, left leg pain for 2 wks
Regular exercise/pain-free until 2007
L5-S1 degen. disease w/constant pain since 6/07
PT, ESI, SI jt injections, 3-level nerve root inj. x 2
Massage, heat, ice, TENS, etc
L5-S1 Charite Jan. 19th, 2009, very happy w/decision
New back pain in upper back though.
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  #2  
Old 11-10-2009, 09:31 PM
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Harrison Harrison is offline
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Tim,

Interesting post for lots of reasons – you really found my activist button on this one! I wish I had more time to elaborate on this, since I wholeheartedly support naturopathic, homeopathic and many other “untraditional” therapies which these articles seem to discount. So, in no particular order:
  • Most folks here have tried everything to “fix” their spine problem stemming from an undiagnosed disease that causes degeneration in their spinal discs. But isn’t it smart to try just about anything before having surgery? Some times, therapies do work and surgery is avoided. This is good, eh?!
  • The way the NIH allocates funds to other organizations (like Harvard) to design studies around alternative therapies is questionable. Many scathing articles have critiqued how these study funds were allocated, let alone how the studies were designed. If this was not enough, I’ve read about the staggering amount of our tax dollars that have been allocated for Harvard (et al) studies for “alternative” therapies; millions have gone to studies of ecosystems of other planets (astrobiology). How does this allocation of tax funds (to discount alternative therapies; study other planets) help spine patients get better?
  • Clinical studies generally will serve the need of the sponsorship, whoever that may be. Many of the ones for artificial discs benefit patients (like me!), while others may result in terrible outcomes. On another more topical note: how many rigorous studies were performed on the three versions of the H1N1 vaccine? This particular vaccination is aggressively being pushed out to the masses with flimsy “clinical” data. Ironically, a homeopathic remedy from France has been selling like hotcakes to help people ward off the flu; it even has some kind of clinical study supporting its efficacy.
I really don’t want to get into the whole vaccination thing again. I think the real problem is how to help the smaller, innovating, medium-sized or international firms find low-cost ways to get their solutions tested and then to market. In the meantime, China is exploiting this American need and “buying” their citizens to become clinical trial participants for US products.

Furthermore, if we leave only the wealthy, giant companies to be the “deciders” of clinical trials, then we as consumers – and patients – will suffer the consequences of buying ONLY palliative and/or orthopedic solutions. And that to me is very sad; as it does not address the root causes of disease(s).

Some of you already know of this non-profit’s mission:
We are committed to helping each and every spinal patient identify appropriate treatments to preserve healthy, natural spinal motion and to help them return to the highest possible quality of life.
Our goal is to empower patients by including them in a global community, providing support in their problem-solving, and accelerating their path to wellness. We aspire to help patients research and consider the best solution for their spine dysfunction, whether device-based, biological, or naturopathic.

Our success is measured by these patients’ ability to return to work, recreation, and the freedom of movement. Our day-to-day operations are rooted in our commitment to education, patient care, and advocacy.
Tim, I think we all enjoy your posts and I hope you aren't taken (too far) aback with my candor. So what's the problem as you see it? How do patients find and trust alternative treatment therapies if the deck is stacked against those therapy providers?
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #3  
Old 11-10-2009, 11:00 PM
2cool4U 2cool4U is offline
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Default Let the science guide the decision-making

Simple, really. Let me get this out of the way. The H1N1 vaccine is in no way different from the seasonal vaccine that has saved hundreds of thousands of lives over the years. If the H1N1 strain had made itself known a few months earlier, it would have been included in the normal season version and no one would even be discussing it. I've had both vaccines, and I've had a 47 y.o. female healthy nurse friend recently die from complications of H1N1 who was not vaccinated. I can't even begin to argue the vaccine point, as the science overwhelmingly supports vaccinations for multiple disease. I sincerely hope no one would claim that naturopathic medicines cured smallpox, polio, chicken pox...I could go on. Please search for the actual clinical trials on Medline. The data is not flimsy for any influenza vaccine, internet propaganda be darned.

Specifically regarding back pain: Sure, try everything. I believe I did. However, know that some of the therapies you are trying are unproven and may have already been rigorously tested and found to be no more effective than placebo or simply even a tincture of time. Please don't use anecdotal reports of patients who try an unproven therapy and get better. They probably would have gotten better anyway. Until 1,000 patients use therapy A and 1,000 patients get placebo, and (assuming the same mix of gender, race, age, etc in each group) the therapy A group has a statistically higher rate of improvement over placebo, the treatment is not proven. When those conditions are met, then the treatment can be considered effective. Otherwise, just know that you may be wasting time, money and energy. Enter into any treatment you try with that in mind, and turn a critical eye towards anything that sounds too good to be true.

There are many vendors peddling all sorts of cures for back pain. As many of us know from personal experience, a lot of them are costly and ineffective. While certainly some people will experience benefits from different proven treatments (injections, PT, surgery), each patient needs to carefully evaluate his/her actual result. For example, I believed that each of my SI joint injections resulted in improvement. In the end, almost none of my pain was coming from SI joint problems. It was discogenic, and ADR proved to be the only therapy that worked. If I had not critically evaluated my therapies, I may have continued with regular SI joint injections, wasting time, money and energy because I probably experienced a placebo effect.

As far as research goes, I'm talking about clinical trials published in respected peer-reviewed journals. Respected researchers who disclose their source of financial support and who publish their data for all to critically evaluate should not be viewed as an enemy. In general, our society has turned away from the scientific method. This is to our detriment.

However, no one needs to take my word for it either. Read the links I provided, then go to Medline and look for what works and what doesn't. I'm not sure how suggesting this could, in any way, be at odds with this non-profit's mission. Indeed, I believe I'm suggesting a method to further "empower patients" and "accelerate their path to wellness" by suggesting they stick with proven therapies. The readers of these posts should be advised that I've donated money here, and I provide advice when I can, but I have no professional relationship with the owners/sponsors.

Harrison, this response is not meant to be defensive. You do suggest that researchers may have hidden financial motives that could influence their results. Please remember, you have sponsors and advertisers, as well. None of us is completely without bias, including both of us. I merely provided the links for patient education. Empowerment requires education. Science provides proof.

Everyone should read the links and come to their own conclusions. Respectfully,

-tc-
__________________
L5-S1 rupture 11/04, left leg pain for 2 wks
Regular exercise/pain-free until 2007
L5-S1 degen. disease w/constant pain since 6/07
PT, ESI, SI jt injections, 3-level nerve root inj. x 2
Massage, heat, ice, TENS, etc
L5-S1 Charite Jan. 19th, 2009, very happy w/decision
New back pain in upper back though.
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  #4  
Old 11-10-2009, 11:22 PM
2cool4U 2cool4U is offline
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Default Well, its your money, but...

[QUOTE=Harrison;84751]

Ironically, a [/SIZE][/FONT]homeopathic remedy from France has been selling like hotcakes to help people ward off the flu; it even has some kind of clinical study supporting its efficacy.[/LIST][FONT=Calibri][SIZE=3]



I wanted to address this one separately. Just b/c something sells doesn't make it a proven therapy. It becomes self-proving. It works like this: I take substance "A" for 4 weeks. I don't get the flu this year. Substance "A" therefore works.

Umm...no. You probably wouldn't have gotten the flu anyway. When an unbiased institution (university, hospital, etc) studies two groups, one who takes "A" and one who doesn't or who takes "B," a placebo, and they find that the influenza rates are lower for those who take "A," then we have a proven therapy. Until then, we have really good marketing that preys on our fears and our natural tendencies to attribute benefits even when they haven't been proven. We want things to work. Millions take antibiotics when they have the common cold, which is a virus. Antibiotics do not kill viruses. They have no benefit in treating uncomplicated viral illnesses. And yet, the patients get better in 2-4 days, so they're happy the doctors gave them antibiotics.

What would have happened had they not gotten antibiotics? They would have gotten better in 2-4 days. What will they do next year with the same symptoms? Why, go to the doctor and get antibiotics, since it worked this year. Meanwhile, we've created multi-antibiotic resistant bacteria (MRSA is the best known) b/c of our over-use of antibiotics.

This is just one example. Substitute "vitamin C" for substance A above. The original research claiming multiple benefits from high-dose vitamin C (and others, for that matter) has since been refuted. Yet everyone "knows" that vitamin C prevents colds. Why, b/c they took it last year and didn't get a cold. How can one argue with that? The only way is to rely on the actual science and not exaggerated marketing claims.

Don't take my word for any of this. Search for the science. There will be new breakthroughs for everything. There certainly may be clinical proof of the remedy you mentioned, and other new treatments will hopefully be discovered at great benefits to all of us. There are a few anti-virals out there (tamiflu, for one.) They have been proven to be effective in large-scale clinical trials. Remember, though, until someone thoroughly evaluates a treatment or medication, it's not a proven therapy. And it may have side effects that haven't become evident until after its widespread use. Sometimes you don't want to be an early adopter . Vaccines, however, have the proof. Medline or PubMed for further reading.


-tc-
__________________
L5-S1 rupture 11/04, left leg pain for 2 wks
Regular exercise/pain-free until 2007
L5-S1 degen. disease w/constant pain since 6/07
PT, ESI, SI jt injections, 3-level nerve root inj. x 2
Massage, heat, ice, TENS, etc
L5-S1 Charite Jan. 19th, 2009, very happy w/decision
New back pain in upper back though.
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  #5  
Old 11-10-2009, 11:29 PM
Jack Jack is offline
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A big AMEN to tconner and Harrison. Another bunch of folks that depend on making someone believe in their products working are the supplement pitchmen. The one that makes me change channels on TV is that smiling fool selling male enhancement. These people are worse than politicians. There are quite a few products that don't have to prove there efficacy to be pitched. Some of the health food stores are just as bad. Some vitamins can even be dangerous of taken in a large enough quantity. All of the fat soluble vitamins (A,D,E & K) can be dangerous of taken at high doses. Some of the others, like B-12, that some swear by, are actually peed out pretty much immediately.
__________________
Suffered thru every non-surgical cure known without relief.
Pain management '06 to April '10,
Had minimally invasive PLIF with internal fixation on 12/28/09 for isthmic spondylolisthesis of L5-S1 (TDR contra-indicated) DDD at L3-4 & L4-5, All L-Spine doing well. Episodes of no pain at all. After being relatively pain free for 4 months, C-Spine gave up. MRI due 11-1
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  #6  
Old 11-10-2009, 11:38 PM
2cool4U 2cool4U is offline
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Wink Keeping it civil, I hope

Quote:
Originally Posted by Jack View Post
A big AMEN to tconner and Harrison. Another bunch of folks that depend on making someone believe in their products working are the supplement pitchmen. The one that makes me change channels on TV is that smiling fool selling male enhancement. These people are worse than politicians. There are quite a few products that don't have to prove there efficacy to be pitched. Some of the health food stores are just as bad. Some vitamins can even be dangerous of taken in a large enough quantity. All of the fat soluble vitamins (A,D,E & K) can be dangerous of taken at high doses. Some of the others, like B-12, that some swear by, are actually peed out pretty much immediately.
Jack,

Thanks for the fat-soluble vitamin advice. It's especially true for vit. A, which can cause liver failure if taken in high doses. As the saying goes about the other vitamins, Americans have the most expensive urine in the world .

BTW, I really feel the need to emphasize here that my posts shouldn't be read with any defensive tone. I know they could seem that way, but they're not. I don't use smileys enough, I guess. I don't drink, so I can't use the "beer" one. This one's not right , and I'm certainly not . Hopefully no one will or , or think I'm , but you also don't have to .

That's more emotives than I've used in the whole year. Good night.

-tc-
__________________
L5-S1 rupture 11/04, left leg pain for 2 wks
Regular exercise/pain-free until 2007
L5-S1 degen. disease w/constant pain since 6/07
PT, ESI, SI jt injections, 3-level nerve root inj. x 2
Massage, heat, ice, TENS, etc
L5-S1 Charite Jan. 19th, 2009, very happy w/decision
New back pain in upper back though.
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