Results 1 to 15 of 171

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

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903

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

    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.
    Last edited by Pooka1; 05-25-2013 at 09:09 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    People remaining silent - who, why, and does it matter?

    Same answer.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    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.
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  4. #4
    Join Date
    Mar 2010
    Posts
    2,755
    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. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #5
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Quote Originally Posted by Susie*Bee View Post
    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
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  6. #6
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    [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
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  8. #8
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by Pooka1 View Post
    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.
    Of course this is absolutely ON TOPIC, so it shouldn’t be deleted! Also I’m not attacking anybody, only talking about facts, so I shouldn’t be banned. Of course this not guarantees it will not happen, but certainly I’m not sure if it has any sense for me to remains in a forum like this. It hadn’t any sense for many other people, great people, smart people, wise people, why it should to have sense for me?

    As I said I only talk about facts, with too much evidence here.
    Of course people are being driven away here since years ago and only in a miniscule percentage (if really there was some case) because they don’t agree that evidence is required when claims are done. The majority of the dozens, hundreds or thousands of the rest of cases leaving this forum was because people don’t want to be attacked and the minimal set of people not having problem with that kind of attacks, don’t want to waste the time, without having the chance to obtain what they wants to obtain here.

    And how might they obtain what they want if all people being attacked leave the forum? With whom can I talk here about non surgical treatments? If a new member arises saying something, immediately the thread is hijacked making absolutely impossible for anyone to share information/experiences/analyze some specific issues/methods/principles/articles/ideas…….. And the way to hijack is always the same, saying the same, sometimes in different ways: ‘there is not evidence’.

    But since when someone trying to stop what you are doing, showing the lack of sense of saying that and the damage you are making to many people really, is threatened to be banned as I was, the 'merit' of being driving people away is not yours, it belongs to the moderator!
    Last edited by flerc; 02-14-2014 at 01:41 PM.

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by flerc View Post
    Of course people are being driven away here since years ago and only in a miniscule percentage (if really there was some case) because they don’t agree that evidence is required when claims are done.
    COMPLETELY disagree. It is the VAST PERCENTAGE that resent being asked for evidence or having to think in terms of evidence at all.

    I don't see the problem of losing people like this. It's like losing creationists for a biology forum. Good riddance!
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
    Join Date
    Mar 2010
    Posts
    2,004
    The vast precentaje? None case should to be fired in a dishonest way!
    But anyway, do you remember some case fulfilling what you are saying? I not
    Instead I may name a lot of people having nothing to do with what you are saying.
    But we may talk about one. You may consider I was fired from this forum because the reasons I gave before and you cannot say I fulfill what you are saying of course.
    Last edited by flerc; 02-14-2014 at 01:22 PM.

  11. #11
    Join Date
    Mar 2010
    Posts
    2,004
    Certainly is you who fulfill what you say and you never will be driven away, because the reasons I gave in the last of what I said.


    What do you believe? Do you think I'm baiting you? I don't want to be banned just now.

  12. #12
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by flerc View Post

    What do you believe? Do you think I'm baiting you?
    I don't think that of course.

  13. #13
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by flerc View Post
    Certainly is you who fulfill what you say and you never will be driven away, because the reasons I gave in the last of what I said.
    I am always open to evidence. Evidence is king. I change my mind when confronted with evidence.

    You can start posting evidence any time now. I continue to wait. I will criticize counterfactual posts from you until then. No need to keep rehashing the dynamics of the exchanges here.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •