"Driving people away" - who, why, and does it matter?

[Pooka1]

If asking for evidence for claims drives people away then I don't see the problem.

If they have evidence then they will post it. They will WANT to post it. It won't be like pulling teeth. People being driven away is an imaginary problem in terms of mattering to patients and parents. No evidence of treatment efficacy is lost because the people going away seem to be doing so to avoid being asked for evidence. They may feel driven away if they don't want to be asked for evidence.

Again, I don't see the problem. People are free to discuss what they are doing. If they are trying something that has no known evidence of efficacy then they should be told that. As soon as they make claims of efficacy, the requests for evidence should start rolling in. Conservative and alternative methods aspire to be a science. They should want to prove their efficacy instead of it being pulling teeth. People objecting to this are not doing science. Martha Hawes obviously would never object to people asking to see her radiographs to back up her claims. And she certainly would never think to publish without radiographs. You could have invented the most effective PT treatment in the world but if you don't have radiographs proving it, people have to take the claim on faith. Maybe the inventors are satisfied with just helping people who happen to hear about the method and take a leap of faith when they could be helping many, many more people if they publish. Maybe just picking off select people to help is okay rather than trying to help more people.

They can come here to let people know and to recruit but once the claims of efficacy are made, then evidence is required.

Nobody should be driven away for stating a new treatment, admitting there is no evidence of efficacy yet, and offering to help people learn the method to see if it is effective. Nobody should be driven away for repeating what an alternative treatment purveyor told them about curve regression. That is not happening here. What is happening here is pressure to pony up evidence of efficacy claims that drive people away.

Losing people who don't agree evidence is required for claims is an imaginary problem. People may be leaving but that is no loss to the community. Science is the only game in town and will win because it works.

[Pooka1]

People remaining silent - who, why, and does it matter?

Same answer.

[Susie*Bee]

Sharon, I will respond, but in the general sense-- not under the "non-surgical treatments" category. If I remember correctly, the evidence asked for was with a brand new member, who felt like she was being attacked. The forum, to my understanding, was originally created to be a place where anyone either with scoliosis or a family member with scoliosis could come and find refuge-- to meet up with other "scolis". People such as myself do not ever see anyone else (well, I see one other person) with scoliosis, so it is a world of "aloneness" out here. On the forum we become a family, friendships (or friendly foes, at times) are formed, and we can let loose, share our problems that we can't with our own families, and bond in many ways. It is a place of understanding that is not to be found anywhere else. To that end, it should be open to anyone, no matter how intelligent or ignorant their "scientific" posts may be. This is not just a professional board, nor was it intended to be. When you (not singular) drive people away, you deprive them of perhaps the only source of community available. This is the sole reason I am addicted to this site. It is my second family, in a sense. I "love" many of the people. I think back to some of the ones from the past and wonder how they are doing and pray that their lives are productive. I wondered if NZ girl was affected by the massive earthquakes in New Zealand. I wonder how Aussie's Mom (?) little girl is doing after her surgery failed and she developed crankshafting. I worry about those who still have pain after several years. This is what the forum is about JUST AS MUCH AS the science and research. If you took a cross section of the intelligence of the people of the U.S., you would not find the caliber that you desire here on the forum. In that sense, you may be a little prejudicial when confronting people in a harsh way.

I believe it is better to welcome people into the forum, let them feel they can belong and be part of the "group" that will encourage them during their tough times, and if you disagree with them, do so in a way that doesn't make them on the defensive or drive them away. "That is very interesting! I'd be curious to see your x-rays sometime when you get used to the forum and can post them." Everyone needs a sense of respect and a feeling that others will listen to them with an open mind. When it is a subject that you know is totally false, then instead of getting into a schoolhouse brawl over it, just say that you don't see the scientific data to back that up-- and it would help if that could be supplied. If not, then there's no point going on and on with the thread. Just end it with something like "we'll have to agree to disagree on this one, as I don't see any supporting documentation." And let it go. Again, I am not singling you out-- "you" is in the plural sense.

Sharon-- you live in an elite circle of intelligentsia where I think you cannot understand people with lower IQs. I live in an area with many "hillbilly" types. It's not unusual to see a sign as you go down the road that says "used tirs for sale", etc. (that's tires), and people don't speak well either. That doesn't mean they don't have heart and have feelings, just the same as you and I do. Try the old "Indian" saying about understanding others-- you must walk two moons in their mocassins-- put yourself in their shoes. Change your mindset over to theirs for a minute and see if you can picture what is going on there. So no-- I don't agree that as soon as they make claims you should start "pressuring them for evidence" And I don't agree that "science is the only game in town and it will always win because it works." Life is more than pure science.

[rohrer01]

This is an interesting thread. I can totally see both sides of this issue. Sometimes there are people that post that seem like they are planted by an organization. I'm not saying the woman in question was, at all. But if someone was encouraged to post here by a purveyor of alternative medicine, then they should be warned by such purveyor. I've seen advertisements from that particular purveyor. They use "testimonials" to do their advertisements instead of actual evidence. It seems quite convincing until you step back and wonder why they have to resort to happy consumers rather than hard facts. That kind of Tom-foolery shouldn't go on here.

If the person is honestly convinced, then developing a friendly atmosphere for them would be the best way to reach them with the fact that they have been deceived. NO ONE wants to be told right away that they've been taken for a ride. It makes them feel like an idiot. The first response most people have to that kind of treatment is hostility, even among the educated. I've seen at least on person with a Ph.D. go off on a violent tirade because his thoughts were challenged. I was in his class. When that happened, I dropped his class like a hot potato! I didn't want to be "educated" by a person with such an illiterate response to a challenge. Yelling doesn't make a point. This person that supposedly left the forum resorted to such tactics. However, that "may" have been avoided if she felt welcomed. It may not have been avoided, too. The nature of that departure was more rude than any post asking for evidence.

So, in retrospect, we should make an effort to be more kind to people for the sake of the human aspect of this forum, which is HUGE. Then tactfully explain that when claims of efficacy are made, they need to support that with evidence. But keep in mind that their purveyors don't use evidence, so they may think that a testimonial is all that is required. It's a touchy situation, especially if you don't know if you are dealing with a "plant". If the woman had been reasonable, she would have continued to be friendly with those who were friendly with her and ignored those that she felt were attacking her. So, I guess I'm left with the feeling that if someone is so closed minded that they leave so quickly, then is it really a loss to the forum? They will find their support network from other people that they meet during their treatment sessions.

Another thought popped into my head just now. LOL ... The thread stands for millions to read. It's there forever. That could be a tactic to "invade" the forum and leave a nasty taste for people. What if the purveyor did plant that conversation? Then they could direct other customers to that thread and tell them how awful and closed minded the "scientific community" is. It may work for some individuals. Just a random thought. It could backfire, too. So, probably a stupid random thought. =)

[susancook]

Sharon, I will respond, but in the general sense-- not under the "non-surgical treatments" category. If I remember correctly, the evidence asked for was with a brand new member, who felt like she was being attacked. The forum, to my understanding, was originally created to be a place where anyone either with scoliosis or a family member with scoliosis could come and find refuge-- to meet up with other "scolis". People such as myself do not ever see anyone else (well, I see one other person) with scoliosis, so it is a world of "aloneness" out here. On the forum we become a family, friendships (or friendly foes, at times) are formed, and we can let loose, share our problems that we can't with our own families, and bond in many ways. It is a place of understanding that is not to be found anywhere else. To that end, it should be open to anyone, no matter how intelligent or ignorant their "scientific" posts may be. This is not just a professional board, nor was it intended to be. When you (not singular) drive people away, you deprive them of perhaps the only source of community available. This is the sole reason I am addicted to this site. It is my second family, in a sense. I "love" many of the people. I think back to some of the ones from the past and wonder how they are doing and pray that their lives are productive. I wondered if NZ girl was affected by the massive earthquakes in New Zealand. I wonder how Aussie's Mom (?) little girl is doing after her surgery failed and she developed crankshafting. I worry about those who still have pain after several years. This is what the forum is about JUST AS MUCH AS the science and research. If you took a cross section of the intelligence of the people of the U.S., you would not find the caliber that you desire here on the forum. In that sense, you may be a little prejudicial when confronting people in a harsh way.

I believe it is better to welcome people into the forum, let them feel they can belong and be part of the "group" that will encourage them during their tough times, and if you disagree with them, do so in a way that doesn't make them on the defensive or drive them away. "That is very interesting! I'd be curious to see your x-rays sometime when you get used to the forum and can post them." Everyone needs a sense of respect and a feeling that others will listen to them with an open mind. When it is a subject that you know is totally false, then instead of getting into a schoolhouse brawl over it, just say that you don't see the scientific data to back that up-- and it would help if that could be supplied. If not, then there's no point going on and on with the thread. Just end it with something like "we'll have to agree to disagree on this one, as I don't see any supporting documentation." And let it go. Again, I am not singling you out-- "you" is in the plural sense.

Sharon-- you live in an elite circle of intelligentsia where I think you cannot understand people with lower IQs. I live in an area with many "hillbilly" types. It's not unusual to see a sign as you go down the road that says "used tirs for sale", etc. (that's tires), and people don't speak well either. That doesn't mean they don't have heart and have feelings, just the same as you and I do. Try the old "Indian" saying about understanding others-- you must walk two moons in their mocassins-- put yourself in their shoes. Change your mindset over to theirs for a minute and see if you can picture what is going on there. So no-- I don't agree that as soon as they make claims you should start "pressuring them for evidence" And I don't agree that "science is the only game in town and it will always win because it works." Life is more than pure science.

Susie Bee: You have an eloquent ability to convey the feelings of inclusiveness and communication. Thank you for your thoughtful response.

I see this blog as mostly a friendly "help each other" with helpful hints and support. I learn so much from other people's experiences and SO appreciated the support that I receive from the members. I laugh when I read the adolescent blog and some of them are back in school after 3 weeks! I do not see this blog as a professional blog, but do appreciate the postings of new research studies.

There are many things that we do that do not appear to have a research basis, but that we take for granted. One of these is wearing a brace postop. I thought that everyone wore a brace postop, but after reading this blog, I have found out that there are many excellent surgeons who do not have their patients wear braces. I have worked as a researcher on NIH grants, so I consider myself basically an evidence based person in making choices. Having said that, in dealing with hot flashes earlier in my life, I took herbal products which had good anecdotal evidence [from my fellow hot flashin' mamas] but little/no evidence based medical research. That was OK with me, but I did that knowing the level of research upon which I was basing my decision.

I believe that there should never be room on this blog for arrogance and put down....nor pissing matches over my credentials are better than yours. We each have a personal story to share and sometimes cry about and all of us have needed reassurance at times.

My doctor's RN, Joanne, at my initial visit, told me not to go on line to the scoliosis blog as they had horror stories. I sat there quietly, knowing that I was already enmeshed in this blog for the good, that is for the support and helpful hints. [Folding reachers....who knew, thanks Irina!] As Susie said, I am also isolated and depend on my scoliosis friends to help me figure this whole journey out. If it were not for this blog, I would not have found my totally awesome surgeon, Dr. Serena Hu! Maybe I should tell Nurse Joanne about that!

Susan

[Pooka1]

It helps nobody to let stand a claim for which no evidence is proffered. How many millions of dollars and years wasted and compensatory lumbars structuralized must there be before we simply ask for evidence for claims? Nobody is being asked to leave but it is instructive that people do resist calls for evidence and leave rather than proffer any evidence for their claims. It is very ironic when some of these people cite Hawes because there is no way anyone would know who Hawes is absent her posting her E-V-I-D-E-N-C-E in the form of radiographs. If she tried to make a claim absent the radiographs, she would be viewed as a crackpot and correctly so.

How much further wastage of time and money should be countenanced? Adults can do anything they like in my opinion but the kids are a different story for the same reason the courts step in on other faith claims. Are folks here against speaking up for science and against faith? Really?

There is a reason the BBB exists you know.

[susancook]

[QUOTE=Pooka1;152256]It helps nobody to let stand a claim for which no evidence is proffered.

I have not seen multiple evidence based research studies demonstrating that wearing a brace changes post operative outcomes such as subsequent fractures. So, you are saying that I should consider not wearing my brace?
Susan

[Pooka1]

It helps nobody to let stand a claim for which no evidence is proffered.

I have not seen multiple evidence based research studies demonstrating that wearing a brace changes post operative outcomes such as subsequent fractures. So, you are saying that I should consider not wearing my brace?
Susan

Why don't you ask Hu that and report back?

In the case of bracing kids, because bracing is the standard of care despite lack of good evidence, I think it is purely defensive. Maybe that is the reason adults are braced post-op also. I have no idea.

[LindaRacine]

I don't remember if Joe O'Brien and I had any discussions about the purpose of these forums. I suspect that we didn't, and probably had different ideas of what they should be. As moderator of the MIT listserv (which was really the predecessor of these forums, I can tell you that the purpose was to get accurate information to the masses. I'm guessing that Joe probably thought that the purpose was more to connect patients. I think it can be both.

If we let people post anything and everything without challenging unproved claims, the forums will become a wasteland. Do we sometimes go overboard in our hurry to optimize the quality? Perhaps. But, in most cases, participants usually seem to try to be tactful initially.

Participants have been threatening to go away since the exchange of information via the Internet began. In many cases, it seems to be a ploy to get sympathy, and the participants only rarely actually follow through on the threat. If someone does go away, I think they probably eventually find a new home with people who are less concerned about quality.

There are a few people here who remember the long and contentious debate about the Copes brace. Like what probably happens to Sharon sometimes, I took an incredible amount of daily abuse from participants who felt it was wrong to challenge the claims that people were making. Eventually, Copes was run out of town, and was imprisoned for insurance fraud. Had I not been willing to take the abuse, a lot more people might have been taken in by the fraudulent claims. So, I will admit that I have a little bias toward those who value science more than political correctness.

Maybe both sides can be a little more tolerant, but I'm not holding my breath.

Linda

[Pooka1]

If someone does go away, I think they probably eventually find a new home with people who are less concerned about quality.

Agreed. I think some people come on here looking for faith healing, the opposite of science.

I am almost past caring about adults who should know better but there are innocent children involved many times.

[Pooka1]

The other thing is I do think some people disagree with the concept of a BBB and it carries through on fora like this one.

At that point, all you can do is stop, stare a little, and move on.

[Susie*Bee]

Agreed. I think some people come on here looking for faith healing, the opposite of science.

I am almost past caring about adults who should know better but there are innocent children involved many times.

Sharon-- I would have to disagree and say that faith may be an integral part of the make-up of the person and they come here for many other reasons. It's a different mindset that you can't park at the door or separate from your being. Just because you have faith doesn't mean you can't acknowledge the science of medicine and be knowledgeable (in a layman's scope) in scoliosis studies. Again, I'll go back to my statement about walking in someone else's shoes and leave it at that.

[curvycakes]

I like this thread. If I may add my two cents -

I can see both sides here, and I have been on both sides. Before my fusion, I was involved in both Copes & Clear, but was more active on this forum during the Clear treatment. I believe it was and is a farce. At the time, however, I was SO excited because I was seeing improvements (although minimal compared to surgery) and actually felt a great connection with the program. I remember talking with someone on this forum who was apparently around my age, female, and had AMAZING results with Clear. She would post quite frequently (I’m sure I could find it somewhere) and it gave me such hope. I worked harder, I was excited, and I was optimistic. Didn’t work out in the end, but having a better outlook made the blow easier to deal with.

That being said, I wouldn’t be surprised if she was a plant by the organization because she dropped off the face of the forum once people asked for proof. I even tried emailing her and never received a response. I was naive and a little too trusting, but mostly desperate to find someone who I could express my excitement (and frustrations!) with regarding Clear. Perhaps the reason I didn’t exactly find that on this forum was because the treatment had a small following at the time, but it’s important to mention that there’s an understandable preference for the surgical method here. I think the biggest issue is that not everyone understands this outlook.

So yes, it is extremely important to ask for proof to help provide a better understanding to the parents willing to believe anything time after time, who end up paying with both money and emotions, and of course--the kids. Pooka said it best - these claims need to have evidence. Without them, they aren’t truly helping anyone.
But I want to echo Rohrer in urging everyone to be more aware of how delicate these situations can sometimes become. There’s a fine line between being condescending & providing facts, loud and clear. On an online forum, it’s even harder for that line to be erased. The mission is to provide accurate information, but maybe some more attention on how it’s being communicated would be nice...and could cultivate a better understanding between these two "sides".

I feel like one of those hippie guidance counselors, but the accessibility of the information won’t make a difference if it’s coming across in the wrong way.

[Pooka1]

Thanks for your thoughts. I hope others comment also.

What's going on here is that people realize they don't have evidence and therefore their only response is to go away, usually in a huff with a dramatic announcement preceding.

When you have no evidence, there is no possible wording asking for evidence that will not offend. It is not possible to ask for evidence from these people in a way that they will not take offense. Taking offense is the only possible response when you don't have evidence. For these people, there is social taboo against asking for evidence.

Anyone who claims they don't need to pony up radiographs as evidence is being evasive FULL STOP. If they had evidence, they would proffer it without ever being asked. If you have to ask someone for evidence, it's very likely they don't have any.

[mariaf]

Curvycakes,

Thank you so much for opening up and sharing your unique perspective with us. I'm sure it will prove helpful to many people who read it.

Sharon,

Well said. My feeling is that if I had proof that something worked, I would shout it from the ROOFTOPS in an effort to help others. It's just a natural, human emotion to want to say "here, look at this, it helped me so much - you should consider looking into it". This is true whether the subject is scoliosis/radiographs or anything else. My view is that folks here basically want to help each other so why wouldn't one share the evidence, if it existed......