Science Based v. Results Based Treatments for Chronic Idiopathic Symptoms

Discussion in 'Your Living Room' started by Henrysullivan, May 21, 2010.

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  1. Henrysullivan

    Henrysullivan New Member

  2. Taximom5

    Taximom5 New Member

    Re: Science Based v. Results Based Treatments

    Thanks, Henry.

    If you are talking about polio, I would agree with you.
    But flu? Hepatitis B for 4-hour-old babies who are not at risk? Rotavirus vaccine? Heck, 36 vaccines in the first 18 months of life? (That is the US schedule.)

    No, I don't agree with you. The risks--autism now affects 1 in 68 boys, and even more in clusters--do NOT outweigh the benefits--which have NOT been proven in independent studies.And autism is not the only risk with vaccines. WE DON'T KNOW ALL THE RISKS YET--but we do know that many people suffer immune system problems from vaccines. There are plenty of studies and case reports on that--but parents aren't told of these risks. No, we are only told that the risks include a little swelling, maybe a little fever.

    In the US we have VAERS--Vaccine Adverse Effect Reporting System, for SEVERE adverse effects, not for a little swelling and a little fever. The CDC estimates that only 10% of SEVERE adverse effects are reported. And there are more adverse effects reported for the Hepatitis B vaccine than the number of reported cases in any given year before the vaccine was introduced!

    Try talking to a parent whose child died from the Hep B vaccine, and see if they think the risks outweigh the benefits, especially if their child was never at risk for Hep B, which is transmitted by body fluid exchange.

    You labeled me "anti-vaccine," which is not fair. I want SAFER vaccines. I want all parents to have a choice what is injected into their child's body. I want children with a predisposition to adverse reaction to be exempt from vaccines--and you must be aware that those children are excluded from the lame studies. According to the CEO of one of the vax companies--I think it was Merck, but not sure--"You can control the OUTCOME of the study if you control who goes INTO the study."

    I have a history of reacting to thimerosal back in the 1980's, when it was in eyedrops. (It was subsequently banned in all over-the-counter products.)I had no idea at the time that it was in vaccines, but dutifully reported the reaction to every medical professional who saw me. Not one of them bothered to tell me it was in vaccines, even after I had severe reactions to the vaccines. They just told me not to get those vaccines again.

    Not one pediatrician thought that I should skip or even delay any vaccinations for my children until a few years ago, not even for my first, who was 4 1/2 pounds, and received 3 vaccinations when he was 4 hours old.

    None of their reactions (or my own) were ever reported to VAERS, because the nurses and doctors who initially saw my children insisted that vaccines NEVER caused those kinds of reactions (even though plenty of those kinds of reactions had already been reported to VAERS.) By the time the doctors were ready to admit that, yes, my children had all had severe reactions and should no longer receive vaccines, they said it was too late to report to VAERS.

    So I do think you are being condescending. You are giving more weight to NON-independent studies, studies with clear conflicts of interests than to the other studies that confirm the dangers of over-vaccination. You aren't giving any weight at all to the people who have experienced vaccine adverse reaction.

    And, no I am not desperately looking for something to blame, and yes, I know that coincidence does not equal causation.

    Any doctor in this world would assume that, if he gave medication to someone who is sick, and that person got better within 24 hours, then it was the medication that caused the improvement.

    I just want an equal standard for vaccines. If thousands of people are reporting the same symptoms within 24 hours (or more, or less) of the same vaccines (usually hep B, DTaP, and MMR, which were given to my oldest kid together), we have to accept that this is not coincidence.

    And funny thing, there are an awful lot of people who say, "no, listen to the science, this is just desperate parents grasping at straws"--until it's THEIR child who reacts. Then, they get it.

    Too bad you don't.
  3. Henrysullivan

    Henrysullivan New Member

    Re: Science Based v. Results Based Treatments

    OK, Scott, I see your training, and perhaps some things are coming more clear for knowing that. You ask about mine. I am a home builder and remodeler. With my partners, I own my own company. My batchelor's degree is in Civil Engineering and I have a master's in business. I have been in my own employment since 1987, incidentally when I was fired from my last job for being too big for my britches. So nothing has changed :).

    Hopefully you have read the answer to your last question to me. I tried to be thourough, however as succinct as I could be. And I read your last post as well. And although I understand what you wrote, I cannot accept that the story I just gave you can only be counted as any anecdote, as if from the annals of unsubstantiated cases about people that any particular researcher has no way of knowing. No, this is me here, and my wife. We are real people to you, not just numbers. And if any particular conversation on a forum like this is worth having, then each of the participants must also give credence to the truth portrayed by the other. I give you credence. You must do the same for me. So just because medical science research has not yet chosen to study the cases I present, that does not invalidate the cases, nor the experiences of those whose stories are told. These cases are merely something medical science has not yet attempted to explain.

    And because we are talking about real people here, not just numbers, folks who on occasion suffer immeasurably with the types of chronic symptoms we talk about here, who then prevail over their symptoms, are in a certain position to not only convey that information to others who suffer, but also provide valuable instruction and experience to those whose jobs it is to study such things. Now whether those researchers choose to study these cases, that personal or professional decision in no way affects the reality and the truth that these experiences are valid.

    So here is my question to you. Given the knowledge of all that I recounted to you above, concerning my case and the case of my wife, each of us being told by medical science that there was no more help for us, how can we possibly expect that we or anyone in our shoes should then sit on our haunches and wait for medical science to discover a cure for our respective conditions, conditions that medical science has not progressed in understanding the cause of for last 100 years? And given the fact that these individuals, and all the others who report here and other places of similar results, have conquered disorders that medical science claims are unconquerable, then how can we continue to discount the very tangible effects of this particular results based treatment as something that others who have similar symptoms should not even try?

    I'm sorry, that was a two part question. Please indulge me :)

  4. June-

    June- New Member

    Re: Science Based v. Results Based Treatments

    I didn't read the article but frankly I see no contradiction in science based vs results based. Science is results based.
  5. Wino

    Wino Resident Honey Badger

    Re: Science Based v. Results Based Treatments

    I don't want to take this thread in a different direction, but I just can't sit there anymore and see the link being made between autism and vaccines. And rather than going into all of the very, very, very extensive specifics about it all, I am going make this very simple point about the flaw in the logic that links the two:

    Advocates of the autism/vaccine link argue that science cannot/has not "disproven" that a link exists (as though it were possible to disprove a negative). And I have seen Taximon absolutely excoriate the pharmaceutical industry and their studies about the lack of tangible evidence -- in her mind -- disproving the link. And the argument goes: since big pharma's studies are unreliable, their claims that no link exists must be false.

    Yet, look at the flip side of that very same argument. If big pharma's studies prove NOTHING, then how could one POSSIBLY take the view that "most likely" a link DOES exist???? If you've proven nothing, then there is ZERO evidence for the anti-vax crowd to take a position on the link one way or the other. Especially since the research that suggested the link in the first place has been far more discredited than any study ever performed by big pharma.

    It appears that your life has been unfortunately affected by loved ones being diagnosed with autism. I know first-hand how difficult it can be to live with/manage someone with that diagnosis. However, to keep suggesting that a link actually exists between autism and vaccines is very misleading to those on the board who have not followed the debate as it has played out.

    And let me take it one step further, since Hank has couched this thread as though "science-based" and "results-based" (Really, should be called "anecdotal-based") approaches. The best example I can think of from the so-called "results-based" perspective when it comes to linking autism and vaccines: California outlawed the MMR vaccine (the supposed culrprit due to its use of mercury), and since they stopped using the vaccine the rates of autism have actually INCREASED in California. How does that happen in a "results-based" world?
  6. Wino

    Wino Resident Honey Badger

    Re: Science Based v. Results Based Treatments

    Try talking to the family of a patient who dropped dead on a chiropractor's table because they burst a brainstem aneurysm during a cervical manipulation. So does the benefit of undergoing NUCCA outweigh the risks?
  7. Wino

    Wino Resident Honey Badger

    Re: Science Based v. Results Based Treatments

    There is no difference. The problem is that Hank views the term "anecdotal" as a pejorative term. It's not. Anecdotal evidence is extremely useful in science because it is usually anecdotal evidence that causes reserachers to start looking into whether or not an actual link exists between two things. But Hank fears that if he concedes that his views on NUCCA are based on "anecdotal" evidence, then his claims about NUCCA would be dismissed.

    It's a semantrics argument that actually makes no real difference one way or the other. Whether you call it "results-based" evidence or anecdotal evidence, Hank is still talking about the same thing = a theory that has not yet been proven to exist using controlled scientific principles.
  8. Seadog

    Seadog Ambidextrous dumb-ass with out coffee

    Re: Science Based v. Results Based Treatments

    Thank you
  9. hollymm

    hollymm Me, 'in' a tree.

    Re: Science Based v. Results Based Treatments

    What he said...
  10. Taximom5

    Taximom5 New Member

    Re: Science Based v. Results Based Treatments

    Wino, California did not outlaw the MMR. Ever. I don't know where you got that one. In addition, the MMR NEVER contained mercury. Ever.

    Vaccines have been preserved with thimerosal (49.6% ethylmercury) since the 1930's. In 2001, production of mercury-preserved childhood vaccines was supposed to stop, with single-use vials replacing the multi-use thimerosal-preserved vials.

    However, doctors were allowed to use the older versions for as long as they were still available. My daughter was nearly given one in 2004--I saw the package insert, and refused the vaccine. Some had expiration dates as late as 2007, so we cannot say that children were not exposed to thimerosal via vaccines after 2001, even though production was supposed to cease, because obviously, thousands of children received doses of thimerosal-preserved vaccine well after 2001, until the multi-use vials were used up, AND many children receive 2 doses of the flu shot and then 2 doses of h1n1, both of which are most widely available in the thimerosal-preserved multi-use vial.

    Most flu shots are multi-use vials, and are preserved with 25 micrograms of thimerosal. There are some single-use vials available, and FluMist does not contain thimerosal. However, many, many children have been receiving the thimerosal-preserved vaccines. At 2 flu shots recommended in the first year, that is 50 micrograms of mercury. Children who received the swine flu shots in addition from a multi-use vial ended up with 100 micrograms. The EPA sets the limit for mercury at .1 microgram per kilogram of body weight.

    Obviously, for babies, that limit is exceeded just by flu shots. You can imagine how much mercury babies were getting in their first year between 1995 and 2003, when mercury was in most children's vaccines.

    In addition, thimerosal carries a black box warning that it should NEVER be mixed with aluminum. It says so, right on the bottle. However, many children's vaccines contain aluminum as an adjuvant. Some vaccines contain both aluminum and thimerosal. The current US vaccination schedule calls for 3-4 vaccines to be given concurrently at most well-child visits. Many parents report that their doctors played "catch-up" with their children, giving them up to 8 vaccines in a single visit.

    I am not claiming that the MMR causes autism. Neither do the autism groupsl. Andrew Wakefield, in his Case History that was first published, then retracted by the Lancet, never claimed that it caused autism. He also insisted that nobody should stop vaccinating, but that it would be prudent to give separate measles, mumps, and rubella shots (months apart instead of in one jab) until further studies could be done.

    What many suspect is that the MMR was somehow the straw that broke the camel's back for susceptible toddler, where the mercury load of the 20-something vaccines BEFORE the MMR opened the door for neurological damage.

    There has never been a study of vaccinated vs. unvaccinated children, despite the repeated pleas for such a study from various autism support groups.

    There is, however, anecdotal evidence that unvaccinated populations such as the Amish have a nearly-zero rate of autism.

    There is a a group of Somali immigrants in Minnesota (all vaccinated) who have a staggering 1 in 28 occurence of autism.

    Autism is practically unheard of in Somalia.

    Please look at, which discusses all the studies held up by the pharmaceutical industry as "proof" of no connection between autism and vaccines.

    While we are at it, I wonder if there is anyone here on this board with Meniere's who had never had a vaccine?
  11. Taximom5

    Taximom5 New Member

    Re: Science Based v. Results Based Treatments

    Who cares? None of the current "science-based" so-called "treatments" for Meniere's have any proof that they can cure Meniere's.
    The percentage of people cured by the low-sodium diet is pretty miniscule.
    Ditto for diuretics.
    The rate for cortisone shots in the ear? Around 50%--the same as if you do nothing.

    Henry's explanation makes just as much sense as the diuretic/lowso explanation, but with a higher anecdotal rate of success just on this board!

    You can try it, and see if it works for you, too.

    Or you can blast it because it hasn't yet undergone double-blind studies, and say that therefore it is snake oil.

    Hmmm, lime for curing scurvy? Oh, sorry, hasn't undergone those double-blind studies yet--let's not try that, it must be snake oil...
  12. mrdizzy

    mrdizzy New Member

    Re: Science Based v. Results Based Treatments

    Maybe this is why my kids are so crazy and obstinate!!
  13. Taximom5

    Taximom5 New Member

    Re: Science Based v. Results Based Treatments

    From wiki:
    "Thiomersal is very toxic by inhalation, ingestion, and in contact with skin (EC hazard symbol T+), with a danger of cumulative effects. It is also very toxic to aquatic organisms and may cause long-term adverse effects in aquatic environments (EC hazard symbol N).[9] In the body, it is metabolized or degraded to ethylmercury (C2H5Hg+) and thiosalicylate.[3]
    Few studies of the toxicity of thiomersal in humans have been performed. Cases have been reported of severe poisoning by accidental exposure or attempted suicide, with some fatalities.[10] Animal experiments suggest that thiomersal rapidly dissociates to release ethylmercury after injection; that the disposition patterns of mercury are similar to those after exposure to equivalent doses of ethylmercury chloride; and that the central nervous system and the kidneys are targets, with lack of motor coordination being a common sign. Similar signs and symptoms have been observed in accidental human poisonings. The mechanisms of toxic action are unknown."

    I dunno, it doesn't say anything about crazy and obstinate...
  14. John of Ohio

    John of Ohio New Member

    Re: Science Based v. Results Based Treatments

    I don't mean to toss any angry wrenches into the discussion, merely to suggest that those pondering the proliferation of autism cases in recent decades read and consider the case that it's all caused by vitamin D deficiency. Think not? Read the Vitamin D Council's many pages of evidence on the matter, at:

    --John of Ohio
  15. mrdizzy

    mrdizzy New Member

    Re: Science Based v. Results Based Treatments

    well crap i thought i had found the reason... i guess i will just keep searching!!
  16. MrMan

    MrMan New Member

    Re: Science Based v. Results Based Treatments

    With either scientific or anecdotal evidence in order to prove a treatment works you first have to prove that the person has the illness that is supposedly "cured". That fact has been ignored in this post. Scientific studies may have the upper hand in that regard, however since many MM sufferers get better without any treatment, neither scientific or anecdotal evidence are very convincing. This argument is as Seinfeld would say, is an argument about nothing.
  17. Funshine

    Funshine New Member

    Re: Science Based v. Results Based Treatments

    I agree with you Mr. Man, much ado about nothing, and even more confounding, MM is idopathic and the course of the condition is characterized by remissions and exacerbations, and may in fact, go away as quick as it came....oh we should be sooo lucky!
    Yaddy, yaddy, yaddy, ya da...
  18. Butterfly

    Butterfly I will learn to fly agian.

    Re: Science Based v. Results Based Treatments

    I dont want to get in the middle of any debate. So please everyone dont take my comment as trying to do just that. Im not knowledgable to get into scientifc details or anything else but after reading this thread I felt the need to point out that people die during surgerys also. I dont know any statistics or anything. I had to sign a waiver holding the Dr not responsable or liable for any out come to my vns. Sorry if I offend anyone by my statement that is not what I entended to do. And yes I know the vns was my choice. I have a relative that did die from surgery. It was just to much for his system to handle.
  19. Henrysullivan

    Henrysullivan New Member

    Re: Science Based v. Results Based Treatments

    First, a brief note to Scott. I understand. Come back as soon as you feel better.

    In the meantime, I'd like to clarify my choice of terms for June and Wino and anyone else who might be interested.

    Wino is somewhat correct in his assessment of my position on this. I do not see medical science as using the term "anecdotal" as a pejorative. No, I see them use it as a dismissive. That one term allows medical science to dissmiss any and all results that they have not chosen to study, or which came to them outside of any certain protocal that they designed themselves. And in so doing, wrongly, that term only serves to invalidate those same results to the world. But they are not invalid, not necessarily that is.

    They are simply not ratified. And because the results did not arrive to the medical researcher adhering to a certain protocal, they are ignored.

    Medical science research, in the manner it is caried out, is dehumanizing. It attempts to measure certain effects imparted to human subjects who suffer symptoms, document those effects with numbers, organize those numbers into certain arrays, manipulate the numbers, derive meaningful arithemetic averages, and then try to explain these averages by a theory. Then they formulate an hypothesis in order to test the theory, the ultimate goal of which is to arrive at a treatment that will achieve certain results, the hope being that the result will be a treatment that can successfully reduce or eradicate the symptoms suffered by the subjects studied. So yes, June is right, the science route has certain results as its goal. And I do not say that this approach is invalid. I just say that it is not the only effective approach.

    What if we just tried a few things to see if they help our symptoms? For example, what if all one had to do is snap his fingers in a certain sequence and someone who suffered from Meniere's symptoms was cured? If that were the case, then who might even care how that information might find its way to those who could use it? Who cares if the scientific method were used to determine the method of treatment? It would not matter one iota. Well, that is what I calling a results-based treatment. You just try something that makes certain sense to you and see what happens, see what results. And as long as you don't try something that is invasive, then what does it hurt?

    The dang thing about it is, that given the freedom to attempt this approach, if enough people try it, then eventually certain results based approaches start to work. That is how I came across chiropractic. That is how John of Ohio came across his regimen. Given the circumstances, neither of us had the luxury of time to sit and wait on medical science to go through its protocal and arrive at something that might help us. In my case, I not only had Meniere's, but my wife lived in excrutiating pain. Why on earth should anyone who deals with chronic illness have to wait for medical science to sanction a treatent that is completely non-invasive before we try it? And in the cases of folks who come to a website like this, cases, the results of all this work are all laid on a platter for them. They did not have to deal with excrutiating pain for a decade and a half and all of the trial and error that, say, I did trying to find something that would help my wife, which then also eradicate my own Menieres syptoms. They don't have to become a biologist and go through all the trial and error that John of Ohio went through to arrive at his regimen. No, it's already done. The information is right here. Its free for the taking.

    But even with all of this work completed, in the bag, all the trial and error finished, successful treatments identified, validated by others who tried them succesfully as well, all this information completely free and at their disposal, because the information did not arrive by virtue of a certain scientific protocal, medical science simply dissmisses it, labeling it "anecdotal." That is a huge mistake. What they don't realize is that they could have arrived at the same result using their protocal, but they never identified it as something worth studying, because they never held the double blind studies, because they were on a different path, very likely a dead end path. The stated goal of medical science is to identify sucessful treatments for these disorders. Why? To help mankind. Well looky, here are some succesful treatments, Mr. Researcher, check this out.

    But it is not even as simple as that. That is because all medical research has a benefactor. Someone is paying the bill. And that someone is not interested in any treatment that does not create certain profits for his efforts. That is the rub. And that is why medical research is not interested in anything that I say, nor John of Ohio, or Pappajoe, or anyone who has successfully treated, or even cured these symptoms outright. What's in it for them? If the answer is nothing, not interested. I can't really blame them, except that so many folks suffer needlessly because of the inability of scientific research to be conducted on a basis of results first, method second. No, in that community, it is method first, results second. That seems backward when the results are sitting right in front of them for the taking.
  20. June-

    June- New Member

    Re: Science Based v. Results Based Treatments

    I found what worked for me through anecdotal reports. I have no aversion to taking a tip and trying it to see if it will work. I just keep a close eye on possible down side. I stand by my thought that you need better words to summarize your point. Anecdotal reports are often the impetus for trials to test them out. Even scientists have to start with a notion from somewhere. Science is about results of experiments.

    My little fixation is about defining the problem before we anoint or even test a solution. If you and I do not have the same 'thing' (and I bet we do not) then it is unlikely that the same solution will work for the two of us and if we are both in the test population the results will be confusing and unhelpful. If a third person with a third problem (with similar symptoms) reads our anecdotal reports of our personal successes, then they may well have no success no matter how successful we really were. THis is all obvious of course, but I think in the heat of spreading our good news it sometimes gets forgotten.

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