Censorship attempts

[txmarinemom]

Yes, it does get annoying to hear people repeatedly touting methods that seem to be aimed at getting around more conventional, and proven methods, and that in essence, feed on peoples' fears or difficulties in dealing with more conventional, and proven methods. What's really annoying is the effort to push these methods when there is such little evidence that they work, and defy logic as to how they would work.

You're absolutely correct that people can post what they want, but yes, it IS annoying to see people continually push unproven methods as a solution for case after case.

As I've said, if Schroth (or Clear ... and all the other contenders) were truly a cure, don't you think we'd ALL be cured? Conventional (science based) treatments aren't just some secret coverup to hide the REAL cure from the public, and it's insulting to basically tell people who've undergone conventional treatment and/or surgical (as a last resort) all they *really* needed to do was some exercises or hang a weight from their head.

... those reading the posts should to a certain extent take the info with just a little grain of salt, unless it is information that can be cited with references, or by a credentialed expert in the subject. It is up to the reader to glean what information they feel is beneficial to them or their children.

Again, I agree, but I also consider it reprehensible to offer the false hope of unproven methods to parents and patients who are desperate for the miracle that doesn't exist.

While yes, everything should be taken with a grain of salt, a lot of times the audience looking for a miracle is either gullible - and willing to believe *anything* (think Copes) - or simply uninformed. Those people have a very difficult time separating the wheat from the chaff.

BTW, I can't help but chuckle every time I notice the subject of this post. As you said, Slice, everyone has their right to speak here, and I find it hilarious that Writer deems disagreement on the validity and efficacy or Schroth - and requests for real data - as an attempt to censor.

And, sorry ... I don't care how many times I hear how long it's been around, I don't consider that proof of anything. In fact, it makes me believe the opposite: If Schroth has been a cure for that many years, why is scoli still around?

Regards,
Pam

[Pooka1]

BTW, I can't help but chuckle every time I notice the subject of this post. As you said, Slice, everyone has their right to speak here, and I find it hilarious that Writer deems disagreement on the validity and efficacy or Schroth - and requests for real data - as an attempt to censor.

Misinterpreting both challenges of validity and requests for proof as being censorship are common motifs of paranormal aficionados. For some reason.

Data is a defense against censorship. One would think that was obvious by now. Nobody with data is going to get censored. And I mean actual data as to opposed slack-jawed, ignorant claptrap that constitutes the entirety of some counterfactual nonsense like astrology, alchemy, young earth creationism, etc.

sharon

ps. head weights?

[The Slice]

One of the other things that I wanted to suggest is not to eliminate the biting sarcasm and humor as it's funny most times and a great way to have a laugh, but perhaps we could keep it down to a nibble rather than a chomp. I know that I have felt the sting of some of the sarcasm, but let's remember that the vast majority of people who post here mean well.

[Pooka1]

Most flat-earthers, alchemists, astrologers, young-earth-creationists, geocentrists, etc. "mean well."

But if they had their way, they would make the entire next generation of school kids scientific idiots.

A line has to be drawn around the folks who mean well but are nevertheless ignorant as all get out from spreading their "good will," especially to innocent children.

[txmarinemom]

... A line has to be drawn around the folks who mean well but are nevertheless ignorant as all get out from spreading their "good will," ...

Exactly. Ignorance, no matter how well-intentioned is a very dangerous thing here, Slice. Summarizing what I posted before, there are newbies all OVER this forum who are unable to separate what's valid and what's not.

There is a LOT of quackery out there, and a LOT of quacks eager to prey upon desperate parents and patients.

Simply because someone "means well" doesn't make it less disastrous for them to steer the uninformed in a direction that delays *real* treatment.

Surely that's not what you intended to say ...

Regards,
Pam

[Pooka1]

There is a LOT of quackery out there, and a LOT of quacks eager to prey upon desperate parents and patients.

Simply because someone "means well" doesn't make it less disastrous for them to steer the uninformed in a direction that delays *real* treatment.

Yes medical quackery is an area even more important than pseudo-biology, pseudo-geology, pseudo-cosmology, etc. because folks can not only be harmed from delay of effective treatment but also be directly harmed by quacks swinging head weights and such.

In a forum like this stocked largely with lay people, we have to be especially vigilant to avoid situations of the blind leading the blind leading the naked.

[The Slice]

Pam, Sharon, you are both correct, and I was not trying to suggest that we not say anything. I had hoped that I was clear enough in the idea that perhaps things could be toned down just a tad, I:E "......is not to eliminate the biting sarcasm and humor as it's funny most times and a great way to have a laugh, but perhaps we could keep it down to a nibble rather than a chomp." Yes ABSOLUTELY, those who do have personal experience, or knowledge from their own research, are a vital and valuable resource on the forums to expose the "charlatans". I've had the same experience on the "talkaboutsleep" website, and it does get very frustrating, but perhaps if we could tone things down a bit, we won't get off on tangents arguing over what was said, and who's right or wrong. The best we can do is try to disseminate information as best we can and hope that by the sheer numbers of responses, readers who are looking for information can get an idea of what's realistic and what's "quackery". All I'm saying is that sometimes things get a little too intense, and that doesn't do anything to help others who are looking for info.

[Writer]

Thank you to all my detractors in this thread, who are proving my case – that some people on this board are in a state of denial. They don’t want to know there is a way to avoid surgery. Note the snippy tone of the posts by tx and pookie, occasionally others. Confident, knowledgeable posters are not snippy or gossipy.

When we read multiple negative posts from different patients about a treatment such as CLEAR, then of course I’m skeptical, too. There are a number of dubious treatment attempts out there. But I keep mentioning Schroth because it is not just-invented like CLEAR, it’s been around for nearly 90 years. Two Schroth in-patient clinics in Germany, one of them with 200 beds, treat patients in 3- to 6-week sessions year-round, and they are often referred by German orthopedists and supported by German insurance. This is not "unproven," an arbitrary and false accusation.

http://www.skoliose.com/Html/Englisch.htm

Show me the post or a website where a Schroth proponent claims it is a cure-all. That misleading statement is only made by skeptics. Schroth’s success depends on a variety of factors, one of the most important of which is the patient’s devotion to performing the exercises. It may not always work, and a few Schroth patients go on to have surgery, though a large majority avoid it and solve their pain problems. That is success to me.

QUOTE if Schroth were a cure there would BE no "surgical" sections on this forum. UNQUOTE

As for why Schroth is not yet common practice in Anglo-American medicine, Thomas Kuhn’s classic book "The Structure of Scientific Revolutions" offers an answer. Kuhn explains the concept of a paradigm shift, where entrenched interests fiercely resist a new scientific paradigm. Most orthopedists seem uninterested in exploring nonsurgical methods, after all, they are surgeons and surgery is the reigning paradigm now.

QUOTE Data is a defense against censorship. UNQUOTE

Quite true. I have frequently cited clinical sources in my posts, but tx and pookie don’t read the sources.

Those who wish to read sources exploring non-invasive scoliosis treatments can watch the SOSORT website:

www.sosort.org

and its journal’s site:

www.scoliosisjournal.com.

SOSORT’s board consists mostly of M.D.s, at least some of whom trained in surgery, but who, to their credit, are exploring non-invasive treatment methods. Schroth is only one of these, though it’s the one with the longest track record.

SOSORT's annual meeting in 2007, in Boston, was invited by the NSF. NSF President Joe O'Brien is a SOSORT board member. Would Joe, who probably knows more about scoliosis than anybody posting on this board, promote "paranormal," "unproven," "false hopes"? Hardly. I think the SOSORT organization and the non-surgical sections on this website exist to promote exploration of non-surgical treatments, as supplements, and ideally as alternatives to surgery. It's not just free speech.

[Pooka1]

But I keep mentioning Schroth because it is not just-invented like CLEAR, it’s been around for nearly 90 years. Two Schroth in-patient clinics in Germany, one of them with 200 beds, treat patients in 3- to 6-week sessions year-round, and they are often referred by German orthopedists and supported by German insurance. This is not "unproven," an arbitrary and false accusation.

[sarcasm OFF, really]

Ninety years and all those patients and still only 2-3 papers in peer-reviewed journals in all that time? One study was from Turkey IIRC. Do they have a clinic there?

From the perspective of the Schroth clinic folks, why wouldn't they want to document their success or even publish their success/failure statistics if this approach usually or often works? We aren't talking million dollar studies here. Rather we are talking just crunching the numbers THAT THEY ALREADY HAVE IN HAND, no? Once they get the data into a spreadsheet, I'll offer to crunch the data for chrissakes.

At this point, BECAUSE they have been around for 90 years, the reports of successful results are conspicuous by their absence. So I wouldn't constantly be mentioning that history if I were you... 2-3 papers in 90 years is not something that instills confidence. And even if those 2-3 studies had glowing results, it's still only a few small studies. And so far it's the Schroth folks publishing so we have to be concerned about cherry-picking data.

[txmarinemom]

Confident, knowledgeable posters are not snippy or gossipy.

Sarcasm off here, as well, but "gossipy"? I'm genuinely puzzled.

I hardly think referring to Sharon and I as "tx and pookie" makes you "not snippy". Additionally, to claim we "don’t read the sources" doesn't make you "confident" or "knowledgeable". Have you considered we *have* examined your sources and just don't think they hold much water?

When we read multiple negative posts from different patients about a treatment such as CLEAR, then of course I’m skeptical, too.

Writer, what exactly allows you the exclusive luxury of skepticism?

There are a number of dubious treatment attempts out there. But I keep mentioning Schroth because it is not just-invented like CLEAR, it’s been around for nearly 90 years.

There are certainly dubious posts about Clear, but I've also seen little information that demonstrates anything more than Schroth's short-term results.

And again, 90 years of existence - and a few peer reviewed papers - doesn't prove Schroth is effective. It only means it's older.

Schroth’s success depends on a variety of factors, one of the most important of which is the patient’s devotion to performing the exercises.

That is an entirely subjective statement.

Where is the data that compares the eventual outcome for each individual if, A) they did the exercises, or; B) they didn't?

That data cannot be obtained on an individual basis, obviously, and is pure conjecture.

It may not always work, and a few Schroth patients go on to have surgery, though a large majority avoid it and solve their pain problems. That is success to me.

Again, note the subjectivity of that statement. Define "a few" and "a large majority" (i.e., how many of each, and how many total treated to arrive at those generalizations?).

Regards,
Pam

[PNUTTRO]

At the risk of displaying my ignorance on the subject. . .

I read about the Schroth method several years ago, and I don't see that it does any harm. If it helps a person to develop an exercise program that improves their quality of life, then I am all for it. I imagine that many of these individuals go on to have surgery anyway, and I think that some of the claims are over-zealous--regarding reversing the severity of curves for extended periods of time.

I do know that in the past 10 years, there has been a trend in the US to try non-surgical/pharmaceutical cures. If the Schroth method works so well, why haven't the physicians opened a clinic in the US where people will spend big money on medical treatment. Many people will go outside their medical insurance to try an alternative.

I think the biggest problem is that individuals don't want to make the lifestyle change. I know that I resist changing my diet even a little bit, even though I know it could reduce my cholesterol. Exercise will help anyone with scoliosis. Every physician will recommend PT as a first treatment. We resist.

[Pooka1]

The only time problems arise is when results do not match claims.

So we have to ask, "What are the claims?" and "Do the results match the claims?"

Here are the Schroth claims:

HELP PATIENTS TO:

* Halt curve progression
* Reduce pain
* Increase vital capacity
* At least partly reverse abnormal curvatures
* Improve posture and appearance
* Maintain improved posture lifelong
* Avoid surgery in most cases

Some of those are very bold to be making absent peer-reviewed studies in my opinion. It is interesting why, in 90 years, there are only 2-3 studies purportedly supporting any Schroth claims.

I think these folks should be button-holed on several points including:

1. Are curves due to idiopathic scoliosis vice other pathology expected to respond as well as those due to polio and such?

2. What is the long-term follow-up? Do you have to do the exercises your whole life? Is that reasonable?

[txmarinemom]

I read about the Schroth method several years ago, and I don't see that it does any harm. If it helps a person to develop an exercise program that improves their quality of life, then I am all for it. I imagine that many of these individuals go on to have surgery anyway, and I think that some of the claims are over-zealous--regarding reversing the severity of curves for extended periods of time.

I do know that in the past 10 years, there has been a trend in the US to try non-surgical/pharmaceutical cures. If the Schroth method works so well, why haven't the physicians opened a clinic in the US where people will spend big money on medical treatment. Many people will go outside their medical insurance to try an alternative.scoliosis.

I agree, pnuttro. I've never felt Schroth was harmful, and certainly, any type of flexibility enhancing exercise is the best chance of pain reduction *if* a person is susceptible to pain relief by exercise. Yoga, Pilates, core strengthening on a balance ball ... and even Schroth: If it keeps you flexible, great.

There are a few physical therapists who advertise to be "trained in the Schroth method" and there is actually Scoliosis Rehab, Inc. in Stevens Point, WI. The question is, how much stock do you actually put in the testimonials on their website?

For a treatment that claims success abroad for 90 years I share your view that it *would* be more represented in the U.S. - and quite possibly supported by insurance companies vs. $250-300K surgery - *if it worked* because (despite what you believe, Writer) people DO want to avoid surgery.

And the fact remains, I still haven't seen enough hard data (and you'd think over 90 years, there would be a TON) to convince me it can reverse a curve over a sustained period.

If it doesn't, is the treatment ineffective - or is the patient blamed for being lax? I simply don't see how the results can be measured.

Regards,
Pam

[PNUTTRO]

The only time problems arise is when results do not match claims.

So we have to ask, "What are the claims?" and "Do the results match the claims?"

But isn't this a risk anyone takes in a capitalistic society?

I can call any plumber in the city and he will be able to give me great references. It still doesn't guarantee that he won't screw up my project.

People who try Schroth or any other treatment are looking for an alternative, why not let them try. Its their money, their life, and not detrimental (that I can see) in any way.

p

[Pooka1]

But isn't this a risk anyone takes in a capitalistic society?

I can call any plumber in the city and he will be able to give me great references. It still doesn't guarantee that he won't screw up my project.

People who try Schroth or any other treatment are looking for an alternative, why not let them try. Its their money, their life, and not detrimental (that I can see) in any way.

p

Why does the BBB exist?

Why does the FDA exist?

Why are folks prosecuted for medical fraud?

Do you think there is a role in government to protect gullible, desperate people from their own ignorance?

Isn't that why creationism is illegal in public school science classrooms? To protect kids from ignorance/lies as against their parent's wishes in some cases?

Is it wrong to have laws to prevent conniving quackery to protect people? Scoliosis is rarely an emergency so this paradigm doesn't apply exactly but delay can mean a poorer result when these folks do start making sense.