how do I get doctors on the right track?
November 10, 2006 6:42 AM Subscribe
How does one propose a medical theory explaining the cause behind a physical disorder?
A car accident left me with a physical disorder. Specialists are not even coming up with a clear diagnosis. I think I understand the cause of the disorder . I would like to speed things up by presenting my theory and innitiating research.
I was thinking of setting up a wiki explaining the theory I've reached along with testing suggestions. I hope to draw the interest of the relevant professionals with the goal of getting it researched.
my questions:
1. Is there a standard format for proposing a medical theory to explain a disorder?
2. medical researchers: my goal is getting researchers interested enough - to research it themselves.
How do I achieve that? What would get you to check out a theory presented by a layman?
3. Anyone know a shortcut? - Are there any research foundations that will consider a medical theory proposed by a layman?
A car accident left me with a physical disorder. Specialists are not even coming up with a clear diagnosis. I think I understand the cause of the disorder . I would like to speed things up by presenting my theory and innitiating research.
I was thinking of setting up a wiki explaining the theory I've reached along with testing suggestions. I hope to draw the interest of the relevant professionals with the goal of getting it researched.
my questions:
1. Is there a standard format for proposing a medical theory to explain a disorder?
2. medical researchers: my goal is getting researchers interested enough - to research it themselves.
How do I achieve that? What would get you to check out a theory presented by a layman?
3. Anyone know a shortcut? - Are there any research foundations that will consider a medical theory proposed by a layman?
As an illustration of what to expect, this link tells the story of how peptic ulcer treatment evolved to its current standard. As you can see, it took 15 years between the time a link between ulcers and H. pylori infection was first considered and the CDC launching a publicity campaign to inform both physicians and the public of the fact. I mention this not to be negative or discouraging, but to point out that modern medicine is resistant to change, which serves patients well many times by avoiding premature acceptance of unproven fad "cures", but does make it difficult for truly new therapies that are effective to get accepted.
posted by TedW at 6:57 AM on November 10, 2006
posted by TedW at 6:57 AM on November 10, 2006
Are you a doctor or a scientist? Otherwise, deal with your own case with sympathetic doctors who will listen to your "theory," but I'd give up on trying to influence medical science in general. One case does not provide the basis for a "theory" of anything that will interest medical science in general, unless it's a strikingly unusual case that obviously overturns conventional standards of diagnosis.
posted by fourcheesemac at 7:07 AM on November 10, 2006
posted by fourcheesemac at 7:07 AM on November 10, 2006
Response by poster: TedW,
I'm willing to make a lot of effort. If you have anything in mind, please elaborate.
My theory is not anything wild or way out there. It crosses different fields and specialists just aren't putting the pieces together. Since I'm not overburdened by a pull to a specific field it's easier for me not to lose the whole picture, especially since I really understand the nature of the symtoms (I live with them).
How do I not be like the person who sees the
link between ulcers and H. pylori infection that no one listened to?
posted by mirileh at 7:10 AM on November 10, 2006
I'm willing to make a lot of effort. If you have anything in mind, please elaborate.
My theory is not anything wild or way out there. It crosses different fields and specialists just aren't putting the pieces together. Since I'm not overburdened by a pull to a specific field it's easier for me not to lose the whole picture, especially since I really understand the nature of the symtoms (I live with them).
How do I not be like the person who sees the
link between ulcers and H. pylori infection that no one listened to?
posted by mirileh at 7:10 AM on November 10, 2006
Response by poster: fourcheesemac, because it crosses different fields, I need more than one sympathetic doctor. I need them to collaborate. Also, more research needs to be done to find a solution (I think I understand the cause. the solution isn't obvious).
posted by mirileh at 7:13 AM on November 10, 2006
posted by mirileh at 7:13 AM on November 10, 2006
1. Publish an article in a relevant medical journal. It seems that you are not in a position to do that, as you probably lack the funds and resources to do clinical research.
2a. Speak to doctors, professors and researchers. Try to interest them for your case. Show them that you're concerned there's no clear diagnosis. Ask them, and yourself these questions: Is there any previous research on the subject? Has any comparable theory been proposed? Is there a need for a new theory?
2b. I work in a different field, but research always follows from observation and insight. Theories by layman often suffer from fatal, but basic flaws. You'll need a bird's eye view of your subject. Avoid these pitfalls, or you might become deeply disappointed in the medical community.
3. I don't know about any good alternatives. You could try some alternative medical journals, but your theory won't have any impact on the regular theories. If your theory leads to new medications, you might interest the pharmaceutical industry.
To summarize: read, and ask. educate yourself, then try to convince people. And always keep the option open that your theory has flaws, or has to be adjusted.
posted by Psychnic at 7:15 AM on November 10, 2006
2a. Speak to doctors, professors and researchers. Try to interest them for your case. Show them that you're concerned there's no clear diagnosis. Ask them, and yourself these questions: Is there any previous research on the subject? Has any comparable theory been proposed? Is there a need for a new theory?
2b. I work in a different field, but research always follows from observation and insight. Theories by layman often suffer from fatal, but basic flaws. You'll need a bird's eye view of your subject. Avoid these pitfalls, or you might become deeply disappointed in the medical community.
3. I don't know about any good alternatives. You could try some alternative medical journals, but your theory won't have any impact on the regular theories. If your theory leads to new medications, you might interest the pharmaceutical industry.
To summarize: read, and ask. educate yourself, then try to convince people. And always keep the option open that your theory has flaws, or has to be adjusted.
posted by Psychnic at 7:15 AM on November 10, 2006
would you mind explaining what your condition is? I'm curious now (first year med student)
posted by uncballzer at 7:25 AM on November 10, 2006
posted by uncballzer at 7:25 AM on November 10, 2006
Speak to your doctors about your theory. It seems to me that you're overestimating the degree of specialization among your physicians - while it is true that they may come to problems with a specific slant, that doesn't mean that they're incapable of understanding a cross-specialty approach to the problem if it makes sense, nor is it reasonable to assume that they'd dismiss it to protect their own turf or something like that.
If the idea is dismissed, a physician may not be able to distinguish whether to fully discuss the reasons for the dismissal. Push to make sure you get a full explanation of why the theory might not be applicable. The best way to do that is to a) let the physician know that you trust him or her and b) that you will accept a reasoned response.
posted by mikel at 7:27 AM on November 10, 2006
If the idea is dismissed, a physician may not be able to distinguish whether to fully discuss the reasons for the dismissal. Push to make sure you get a full explanation of why the theory might not be applicable. The best way to do that is to a) let the physician know that you trust him or her and b) that you will accept a reasoned response.
posted by mikel at 7:27 AM on November 10, 2006
Response by poster: Psychnic,
you've assumed correctly that I'm in no position to publish an article. Though I'd like to get as close to that as I can - to open researchers' minds to the direction I'm trying to point to. That's why I'd like to try and publish it on a wiki.
I could really use examples on format to have it palatable for researchers.
posted by mirileh at 7:29 AM on November 10, 2006
you've assumed correctly that I'm in no position to publish an article. Though I'd like to get as close to that as I can - to open researchers' minds to the direction I'm trying to point to. That's why I'd like to try and publish it on a wiki.
I could really use examples on format to have it palatable for researchers.
posted by mirileh at 7:29 AM on November 10, 2006
Response by poster: uncballzer, I don't want this question to stray, so I'll send you a link when I put it on the net for discussion (hopefully I will find out how).
posted by mirileh at 7:38 AM on November 10, 2006
posted by mirileh at 7:38 AM on November 10, 2006
A theory is only as convincing as the data supporting it, and your problem is that you have no data. Without data, you're just some crank on the internet with a crazy idea (sorry, but it's true). "Format" is the least of your problems at this point.
Talk to your doctors! I am willing to bet that they are smarter and more open-minded than you give them credit for.
posted by myeviltwin at 7:39 AM on November 10, 2006
Talk to your doctors! I am willing to bet that they are smarter and more open-minded than you give them credit for.
posted by myeviltwin at 7:39 AM on November 10, 2006
Response by poster: I have talked to doctors.
Quite a few think what I suggest is plausible, though has not been researched or proven yet. And that's usually where they drop it and go on to the next patient who has a problem they know how to help.
I need to get to those that are researchers at heart.
posted by mirileh at 7:55 AM on November 10, 2006
Quite a few think what I suggest is plausible, though has not been researched or proven yet. And that's usually where they drop it and go on to the next patient who has a problem they know how to help.
I need to get to those that are researchers at heart.
posted by mirileh at 7:55 AM on November 10, 2006
My "On Medicine" article should interest you. It goes into my efforts to just get recognized as having a condition let alone positing a new one. I can't echo other's advice to find a doc to work with enough. I came up with several theories, all of which helped me get to where I am now, and all of which were wrong. I doubt I'm done but I'm over the hump at least. I don't doubt you are right but just think you can save some time in seeing what I did.
On preview - I found the right docs by accident... I gamed the ones in a wealthy town serving wealthy folks would be more ideal and it worked. I wouldn't go for a wealthy city because those are going to be docs with personal ambititions that don't involved chasing down your problem. The town docs are much better at that because their ambition is likely to be focused on helping you, even if that means they send you to a bunch of specialists. The difference is the right doc will aggregate all of those results and keep hammering away while another doc will shove you aside and try to get more cash out of you.
To backup myeviltwin's point, you'll see in my article how much data I collected and charted. That is what got my docs interested and held their interest. I had to prove to them this was worth their time. I'm sure that helped my efforts a lot.
posted by jwells at 8:04 AM on November 10, 2006
On preview - I found the right docs by accident... I gamed the ones in a wealthy town serving wealthy folks would be more ideal and it worked. I wouldn't go for a wealthy city because those are going to be docs with personal ambititions that don't involved chasing down your problem. The town docs are much better at that because their ambition is likely to be focused on helping you, even if that means they send you to a bunch of specialists. The difference is the right doc will aggregate all of those results and keep hammering away while another doc will shove you aside and try to get more cash out of you.
To backup myeviltwin's point, you'll see in my article how much data I collected and charted. That is what got my docs interested and held their interest. I had to prove to them this was worth their time. I'm sure that helped my efforts a lot.
posted by jwells at 8:04 AM on November 10, 2006
Have you seen a diagnostician? Many hospitals have them (think House, hopefully sans misanthropy/Vicodin addiction) and they specialize in figuring out what's wrong in complicated cases. They should be more open to considering interdisciplinary problems.
Similarly, you could just back up a step and go to a good GP. They are also better at looking at the big picture than many specialists, who are focused on their body part/technique/whatever.
Finally, this is a little off-the-wall, but try to find an Eastern European/former Soviet bloc doctor, if you can. I've had several doctors who were trained behind the Iron Curtain, and they were the best at figuring out what was wrong in unusual or difficult situations. They seemed more attentive to all the symptoms, and considered diagnoses that were unexpected, but which fit the symptoms. Many American-born doctors were more likely to tell me that what I had was "atypical" whatever, or that some symptoms were unrelated.
posted by katemonster at 8:05 AM on November 10, 2006
Similarly, you could just back up a step and go to a good GP. They are also better at looking at the big picture than many specialists, who are focused on their body part/technique/whatever.
Finally, this is a little off-the-wall, but try to find an Eastern European/former Soviet bloc doctor, if you can. I've had several doctors who were trained behind the Iron Curtain, and they were the best at figuring out what was wrong in unusual or difficult situations. They seemed more attentive to all the symptoms, and considered diagnoses that were unexpected, but which fit the symptoms. Many American-born doctors were more likely to tell me that what I had was "atypical" whatever, or that some symptoms were unrelated.
posted by katemonster at 8:05 AM on November 10, 2006
cool, i'd like to know what's going on; thanks
posted by uncballzer at 8:06 AM on November 10, 2006
posted by uncballzer at 8:06 AM on November 10, 2006
In terms of getting researchers interested, my best guess (as a researcher in a non-scientific field) would be to check the websites of major research hospitals and find the people working in the area closest to what you think the disorder is. I.e., if you think it's an autoimmune disorder, find out who's doing the latest research in other autoimmune diseases. Email them and explain what you're dealing with and ask for their advice on how to go about finding the solution. Treat it as an informational interview -- don't ask them to take up your cause, just ask them for advice on who might be interested or helpful.
posted by katemonster at 8:16 AM on November 10, 2006
posted by katemonster at 8:16 AM on November 10, 2006
mirileh, it would help if you could specify what area of medicine/science with which you're dealing. I would advise you not to push your theory hard, because if you do it will be dismissed quickly, along with all the other crackpot theories. We get lots of them. And no matter how right your theory might be, it is indeed a crackpot theory without substantial support in basic science.
To rearrange and supplement what Psychnic said:
posted by zennie at 8:28 AM on November 10, 2006 [2 favorites]
To rearrange and supplement what Psychnic said:
- Do background research in basic text books, so you are sure you understand the context. I mean some serious study time. Get familiar with the scientific terminology.
- Search PubMed to look for related research. Begin with "review" articles, because they are more comprehensive. Be sure to record any citations or abstracts that look relevant (there may be many). The more information you gather, the better. Look at the names. Who is publishing research on this topic?
- Talk to researchers who are looking at the specific subject. Many MDs conduct research themselves, especially at university hospitals. If you still don't know who to talk to, just start somewhere and ask who would be most interested in this subject. You can find contact information on the medical center or university website. Don't be shy about emailing or calling them (within reason) for general guidance or to ask if they are interested.
- If you are encouraged by what you find, do one or more of the following:
- Write a letter to a medical journal. You can have a receptive researcher help you (and lend his name) to facilitate publication of the letter.
- Work with a researcher to present your theory at a conference in the appropriate field.
- Talk to researchers about what kinds of studies would be appropriate to test your theory, and who might be interested in funding such studies.
posted by zennie at 8:28 AM on November 10, 2006 [2 favorites]
Response by poster: thanks to all suggesting I go to a doctor, but please stay on the question. I would like to innitiate research and I could use helpful suggestions on how to do that.
(note of explanation: there is no use in me seeing more doctors if they can't help me. And they can't, because as of yet there are no answers for people with my problem. hence the need for research).
posted by mirileh at 8:29 AM on November 10, 2006
(note of explanation: there is no use in me seeing more doctors if they can't help me. And they can't, because as of yet there are no answers for people with my problem. hence the need for research).
posted by mirileh at 8:29 AM on November 10, 2006
I think katemonster has it right regarding contacting folks at an academic medical center. If you think you have something that is worth investigating, you should bring it to the attention of the researchers and ask whether or not it's been investigated before, etc.
From my perspective, a lot of medicine and medical research is quite interdisciplinary in nature, so even if you talk to only a couple of people at a research/teaching hospital who don't have any specific ideas about your project, you can get contacts through these folks to find the investigators who could help you out.
posted by scalespace at 8:35 AM on November 10, 2006
From my perspective, a lot of medicine and medical research is quite interdisciplinary in nature, so even if you talk to only a couple of people at a research/teaching hospital who don't have any specific ideas about your project, you can get contacts through these folks to find the investigators who could help you out.
posted by scalespace at 8:35 AM on November 10, 2006
Response by poster: zennie, thanks for your detailed answer!
And as far as medical fields go - it's a neck problem - and medical sience has it crossing orthopaedic surgeons, physiotherapists, neurosurgeons, radiologists and endovascular surgeons (with the last three somewhat lapping with a lot of gaps in between when it comes to dealing arteries supplying blood to the brain).
posted by mirileh at 8:43 AM on November 10, 2006
And as far as medical fields go - it's a neck problem - and medical sience has it crossing orthopaedic surgeons, physiotherapists, neurosurgeons, radiologists and endovascular surgeons (with the last three somewhat lapping with a lot of gaps in between when it comes to dealing arteries supplying blood to the brain).
posted by mirileh at 8:43 AM on November 10, 2006
Do extensive literature searches. Odds are that one or more people have thought along the same lines. Talk to them. Quote from them extensively. Create a posse. Science is a social practice. No matter how smart you are, don't go it alone. Wolfram is a classic example.
posted by meehawl at 8:45 AM on November 10, 2006
posted by meehawl at 8:45 AM on November 10, 2006
Mirileh, have you studied previous situations where an ailment was pushed to the fore by laypeople? I'm thinking of Chronic Fatigue and Fibromyalgia. With both of these, the medical establishment took many years to even admit there was a medical condition involved. It took a lot of advocacy work by people affected by the condition to force the medical establishment to take notice. I'm sure there are many other similar examples of the lay-world driving the medical world to deal with something.
Of course, this depends on the existence of other people who have the same condition as you, for the same reasons. Are there any such people? Have you contacted them?
posted by alms at 8:54 AM on November 10, 2006
Of course, this depends on the existence of other people who have the same condition as you, for the same reasons. Are there any such people? Have you contacted them?
posted by alms at 8:54 AM on November 10, 2006
mirileh, do as much research as you can handle. Then talk to people, then do more research. You should really talk to people in all those fields, and more importantly facilitate them talking to each other about this. One way to accomplish that might be to talk to people within the same institution. At this point, you really get into the politics of humans doing science. Scientists do not always respect other fields of science, so getting people from separate fields to take each other seriously can be troublesome. Proceed with caution, and good luck.
posted by zennie at 9:09 AM on November 10, 2006
posted by zennie at 9:09 AM on November 10, 2006
Response by poster: zennie, you have pinpointed one of my problems very well. It is very hard getting people from different fields (especially the surgeons) talking to each other.
posted by mirileh at 9:23 AM on November 10, 2006
posted by mirileh at 9:23 AM on November 10, 2006
The first step is to be willing to actually tell people what your theory is, no matter who they are. You should also give the reasons that you believe your hypothesis to be true. That will help them not think you're crazy.
The fact that you're not willing to tell anyone here what the theory is doesn't bode well for your chances of getting anyone to seriously research it.
Seriously, tell everyone what the theory is. All the time. Especially doctors, but everyone. Why hide the ball?
posted by JekPorkins at 9:42 AM on November 10, 2006
The fact that you're not willing to tell anyone here what the theory is doesn't bode well for your chances of getting anyone to seriously research it.
Seriously, tell everyone what the theory is. All the time. Especially doctors, but everyone. Why hide the ball?
posted by JekPorkins at 9:42 AM on November 10, 2006
Response by poster: JekPorkins, I'm not trying to hide anything but to focus on what I asked here. I intend to present the theory fully together with citations of relevant studies on the net. Here I was hoping to find a good way to do that.
posted by mirileh at 10:27 AM on November 10, 2006
posted by mirileh at 10:27 AM on November 10, 2006
A good way to do that would be to start here.
posted by JekPorkins at 10:28 AM on November 10, 2006
posted by JekPorkins at 10:28 AM on November 10, 2006
It's this theory right
"I suspect damage to vertebral ligaments causes changes in the positioning between vertebras, distorting or twisting the spine in a way that puts pressure on the vertebral arteries thus lowering blood flow (same as twisting an intact water hose will lower water flow). Why the specific position? Symptoms of near syncope and nausea only appear in this position. I suspect it's occurs only on the constellation of cervical spine flexion with the contraction of the neck extensor muscles (holding the head up)."
ask.metafilter.com
posted by zeoslap at 10:33 AM on November 10, 2006
"I suspect damage to vertebral ligaments causes changes in the positioning between vertebras, distorting or twisting the spine in a way that puts pressure on the vertebral arteries thus lowering blood flow (same as twisting an intact water hose will lower water flow). Why the specific position? Symptoms of near syncope and nausea only appear in this position. I suspect it's occurs only on the constellation of cervical spine flexion with the contraction of the neck extensor muscles (holding the head up)."
ask.metafilter.com
posted by zeoslap at 10:33 AM on November 10, 2006
Response by poster: zeoslap, it is related to that former question of mine. It isn't trivial and that's why I am looking for the best way I can present it and get the different specialists to collaborate research.
so please, let's get back to my present question.
posted by mirileh at 10:40 AM on November 10, 2006
so please, let's get back to my present question.
posted by mirileh at 10:40 AM on November 10, 2006
Your question has already been answered numerous times, but you seem to be resisting it in favor of some idea that you are going to be the one to catalyze the research through your internet wiki. You need to accept the fact that you are not a scientist, and as such, scientists are not going to pay much attention to your theories. What you seem to be asking is something like "How can I talk to Russian people without learning Russian"? The only way to go about this is to enlist an interlocutor/translator scientist, and other people have already suggested good ways to do this upthread. Scientists have their own ways of doing things, and you can't get direct access into their profession on the strength of your lay theories.
Also, I'm unclear on why you are pinning so much hope on this research yeilding results for you down the line, but at the same time you are apparently unwilling to continue seeing doctors now to deal with the symptoms you are presumably still having. I'm not a doctor, but it seems to me that there's no need to have an etiology in order for doctors to keep on trying to treat the condition.
posted by footnote at 10:56 AM on November 10, 2006
Also, I'm unclear on why you are pinning so much hope on this research yeilding results for you down the line, but at the same time you are apparently unwilling to continue seeing doctors now to deal with the symptoms you are presumably still having. I'm not a doctor, but it seems to me that there's no need to have an etiology in order for doctors to keep on trying to treat the condition.
posted by footnote at 10:56 AM on November 10, 2006
Sorry mirileh, never intended to portray it in a trivial light. Figured clueing folks in as to the nature of what you were proposing might steer things in the right direction. If I was in your position I'd do exactly what you intend to do, write as much as you can about the theory somewhere people can read it and then move from there. At the end of the day it's a marketing question and you need your theory to get lots of eyeballs, if it has merit then sooner or later the right eyeballs will find it.
posted by zeoslap at 10:57 AM on November 10, 2006
posted by zeoslap at 10:57 AM on November 10, 2006
Response by poster: thanks zeoslap. I'm trying to figure out the right format to do that.
posted by mirileh at 11:06 AM on November 10, 2006
posted by mirileh at 11:06 AM on November 10, 2006
Identify some experts in the various fields you've identified who might be interested and send them a brief but well-researched email. If they are interested, they will be the ones who figure out the next steps, including pulling together a multi-disciplinary team if they deem it necessary.
A webpage will not get your idea the kind of attention you're hoping for.
posted by hydropsyche at 12:03 PM on November 10, 2006
A webpage will not get your idea the kind of attention you're hoping for.
posted by hydropsyche at 12:03 PM on November 10, 2006
JekPorkins, I'm not trying to hide anything but to focus on what I asked here. I intend to present the theory fully together with citations of relevant studies on the net. Here I was hoping to find a good way to do that.
JekPorkins is exactly right. Science is very open, and while sometimes scientists protect their ideas for specific studies prior to acting on them, that is about as far as secrecy goes. If you are not clear and direct, nobody is going to want to help you.
Exposing the idea to as many people as possible will only benefit the idea. By all means, pull together a webpage to facilitate that. But don't assume you're right and try to perfect this mysterious theory. The result will inevitably be you sounding like all the other laypersons who think they can snap their fingers and produce a theory that will astound the experts who have been studying this for decades. If you're planning to do anything like that, don't bother with this at all. That goes for all you crackpot theorists out there. And no, Mr. Yeager, we're really not interested in studying your six-legged cow, but thanks for offering.
posted by zennie at 12:49 PM on November 10, 2006
JekPorkins is exactly right. Science is very open, and while sometimes scientists protect their ideas for specific studies prior to acting on them, that is about as far as secrecy goes. If you are not clear and direct, nobody is going to want to help you.
Exposing the idea to as many people as possible will only benefit the idea. By all means, pull together a webpage to facilitate that. But don't assume you're right and try to perfect this mysterious theory. The result will inevitably be you sounding like all the other laypersons who think they can snap their fingers and produce a theory that will astound the experts who have been studying this for decades. If you're planning to do anything like that, don't bother with this at all. That goes for all you crackpot theorists out there. And no, Mr. Yeager, we're really not interested in studying your six-legged cow, but thanks for offering.
posted by zennie at 12:49 PM on November 10, 2006
Write a review article on neck injuries (or whatever) and submit it to a peer-reviewed medical journal. Review articles are summaries of scientific literature that do not contain new experimental data, however, the discussion section can be used to present new theories. While it would be rare for a journal to publish an article not written by a researcher, it is not out of the question. Spine and Spinal Chord are two journals you might consider contacting. Even if your article gets rejected, it would be exposed to and receive feedback from experts in the field (the editors and reviewers), and the effort you put into researching and writing the article would increase your own knowledge and understanding of the scientific arena that you wish to pursue your theory. Scientists would be very unlikely to read or pay any attention to anything published on the internet by a layman without peer-review. Also, what hydropsyche said.
posted by emd3737 at 2:40 PM on November 10, 2006
posted by emd3737 at 2:40 PM on November 10, 2006
mirlleh, people are trying to answer your three stated questions, which went beyond making a webpage. They might be able to do a better job if there were more details to go on [e.g., they could tell you that Hospital Y has a great research program in field X, you should check out their researchers.] This is important, because frankly, making a webpage is not going to be enough. No researcher is going to stumble on your page and say "oh, hey, this random wiki written by a layman is really what I should research next." It's going to take a lot of directed effort on your part to make any progress.
Similarly, people are suggesting that you check out research hospitals not because they think yet another doctor might have a cure, but because research hospitals are much more likely to have doctors who're involved in research. Not all hospitals have much research at all, and from your meagre description, it's not at all clear that the specialists you were seeing were involved with research. Many/most doctors and surgeons focus on treatment, and asking them to do research is like asking a biologist to do surgery. Furthermore, there's a great deal of interdisciplinary research going on; I suspect that in a research hospital, you'll find less unwillingness to cross disciplinary boundaries than you have among treatment specialists.
Before you contact anyone, read read read. Talk to your current doctors about why any obvious diagnoses have been rejected, read about how that part of the body functions when it's healthy, read anything from PubMed that seems to relate to your problems, read up on which researchers are the ones doing research in that area.
There are no shortcuts; medical research is expensive, and any researcher is going to have to do a lot of reading and thinking themselves before they start doing any experiments to test your theory. The best thing you can do is come to the researcher very well-prepared; be aware that part of that preparation should be the willingness to listen to what the researcher has to say, including any criticisms they might have. Don't be too pushy; you have a theory, but even after all that reading, you may be overlooking things that would render your theory unlikely or difficult to test. Don't assume that the researcher knows everything, true, but don't assume that because your theory seems compelling to you, it has to be right; that's a great way to be dismissed as a crackpot. [Similarly, don't assume that "research" will mean "a cure in a year." Research takes a long time; transforming that research into human treatmants takes even longer.]
posted by ubersturm at 2:47 PM on November 10, 2006
Similarly, people are suggesting that you check out research hospitals not because they think yet another doctor might have a cure, but because research hospitals are much more likely to have doctors who're involved in research. Not all hospitals have much research at all, and from your meagre description, it's not at all clear that the specialists you were seeing were involved with research. Many/most doctors and surgeons focus on treatment, and asking them to do research is like asking a biologist to do surgery. Furthermore, there's a great deal of interdisciplinary research going on; I suspect that in a research hospital, you'll find less unwillingness to cross disciplinary boundaries than you have among treatment specialists.
Before you contact anyone, read read read. Talk to your current doctors about why any obvious diagnoses have been rejected, read about how that part of the body functions when it's healthy, read anything from PubMed that seems to relate to your problems, read up on which researchers are the ones doing research in that area.
There are no shortcuts; medical research is expensive, and any researcher is going to have to do a lot of reading and thinking themselves before they start doing any experiments to test your theory. The best thing you can do is come to the researcher very well-prepared; be aware that part of that preparation should be the willingness to listen to what the researcher has to say, including any criticisms they might have. Don't be too pushy; you have a theory, but even after all that reading, you may be overlooking things that would render your theory unlikely or difficult to test. Don't assume that the researcher knows everything, true, but don't assume that because your theory seems compelling to you, it has to be right; that's a great way to be dismissed as a crackpot. [Similarly, don't assume that "research" will mean "a cure in a year." Research takes a long time; transforming that research into human treatmants takes even longer.]
posted by ubersturm at 2:47 PM on November 10, 2006
Thank you, ubersturm. Some day I shall learn to speak Human like you.
posted by zennie at 3:08 PM on November 10, 2006
posted by zennie at 3:08 PM on November 10, 2006
As others have pointed out, simply setting up a wiki with your idea is unlikely to garner the interest you believe your theory deserves. Let me point you in a different, less obvious direction.
Why don't you start a support/advocacy organization for people with this disorder. By bringing together many people with the same disorder, you will have a louder voice. If your organization then starts doing things like lobbying your local congressmen and the like, you will get even more exposure. If you play your cards right, you can introduce your theory to others afflicted with this condition, and perhaps to the wider community.
The value of this approach is twofold. First, you are more likely to get this issue on researchers' radar screens, and second, you may be able to use this organization as a way to raise money to support research and advocacy. Research does require money, and while it is unlikely that you will be able to fund any significant research efforts, a small grant to a graduate student interested in the topic can lead to that student's lab writing a grant proposal to NIH for some real bucks.
In any case, you are facing an uphill battle. There are very few fields, scientific or otherwise, in which an untrained outsider can have a significant impact. Good luck!
posted by i love cheese at 5:10 PM on November 10, 2006
Why don't you start a support/advocacy organization for people with this disorder. By bringing together many people with the same disorder, you will have a louder voice. If your organization then starts doing things like lobbying your local congressmen and the like, you will get even more exposure. If you play your cards right, you can introduce your theory to others afflicted with this condition, and perhaps to the wider community.
The value of this approach is twofold. First, you are more likely to get this issue on researchers' radar screens, and second, you may be able to use this organization as a way to raise money to support research and advocacy. Research does require money, and while it is unlikely that you will be able to fund any significant research efforts, a small grant to a graduate student interested in the topic can lead to that student's lab writing a grant proposal to NIH for some real bucks.
In any case, you are facing an uphill battle. There are very few fields, scientific or otherwise, in which an untrained outsider can have a significant impact. Good luck!
posted by i love cheese at 5:10 PM on November 10, 2006
mirileh;
I've been there. And you have my sympathy. It does suck.
Here are some things you should know.
Looking at the recent history of maverick theories in medicine, the hard cold truth of the matter is that they recieve a much warmer welcome in the Alternative Medicine universe than in the Conventional Medicine universe. I have Fibromyalgia/Chronic Fatigue and I've spent a lot of time with St. Amand's phosphate theory. I happen to think he's on to something, but most doctors don't want to hear anything about it. And the ones who do can't really do much towards making the theory more widely accepted or, far more difficult still, getting someone to conduct formal research.
St. Amand himself is, of course, an M.D. and a professor at one of the UC schools, so he knows a bit about how the research game is played. He wanted very much to have his theory validated by a legitimate, double blind, published study, so he raised the money to pay for it and then got this other doctor/researher he knew really well to conduct it. Without going into a lot of detail, I'll tell you that things didn't turn out well. The experiment, according to St. Amand at least, had some serious flaws that the researcher refused to acknowledge. St. Amand is, to this day, still kissing the ass of the medical establishment, trying to get another study done. It's been quite a number of years now.
But St. Amand is kind of the exception in the Alternative Medicine world; like the square, button down math geek in high school who played in the heavy metal band with a bunch of stoners and burn-outs. He's a true medical conservative (doesn't think herbs or magnesium or other commonly used alternative Fibromyalgia treatments are worth talking about) who just happened to stumble across a theory that went against the mainstream grain. He actually kept it quiet for many years simply because he didn't want to be labelled a quack and have to defend himself. Hhe seems determined not to become an Alt Med guy. And honestly, he's suffered for that. He's still pounding his head against the wall trying to nicely and sweetly convince the medical community to accept his idea.
But most people who find themselves pushing a non-mainstream theory don't do it this way. They don't bother trying to raise money and get studies conducted. They treat patients, network with like minded folks, make web pages, write books, etc. And these people are not always doctors. Sometimes they're nutritionists, biologists or even patients. A guy named Dreyfus found that Dilantin, an anti-seizure medicine, helped his depression and went on a crusade to get doctors to prescribe it for this and other conditions. He wasn't any kind of health care or bio-science person; he was a salesman, I think. He ended up meeting with then Vice President Ford to discuss getting some government agency to do something about it. He also wrote a book and a did a ton of other stuff.
Now, all of that might give you some idea as to how one goes about getting wider acceptance for a new theory. There's the St. Amand model which involves lots of patience and studies and what not. And then there's the more commonly used model which is to simply take the treatment directly to the patients and, once enough of them find that it works, watch the mainstreamers cave in and accept it. This has happened with things like St. John's Wort and Echinachia.
Suppose, though, that you're not worried so much about convincing everyone to buy your theory; you just want to find a doctor to try this theory out on you. In that case, you're definitely going to want to look for practitioners of alternative medicine. The odds on finding a mainstream doctor who will do this sort of thing are incredibly small. So you'll want an alt-med-ian who's knowledgeable in as many areas as possible and who has a genuinely open mind. The sad truth is that plenty of people in the alt med universe have a religious devotion to a handful of theories or treatments and are even less tolerant than mainstream doctors of new ideas. But the open minded ones are out there, I promise.
posted by Clay201 at 7:15 AM on November 11, 2006
I've been there. And you have my sympathy. It does suck.
Here are some things you should know.
Looking at the recent history of maverick theories in medicine, the hard cold truth of the matter is that they recieve a much warmer welcome in the Alternative Medicine universe than in the Conventional Medicine universe. I have Fibromyalgia/Chronic Fatigue and I've spent a lot of time with St. Amand's phosphate theory. I happen to think he's on to something, but most doctors don't want to hear anything about it. And the ones who do can't really do much towards making the theory more widely accepted or, far more difficult still, getting someone to conduct formal research.
St. Amand himself is, of course, an M.D. and a professor at one of the UC schools, so he knows a bit about how the research game is played. He wanted very much to have his theory validated by a legitimate, double blind, published study, so he raised the money to pay for it and then got this other doctor/researher he knew really well to conduct it. Without going into a lot of detail, I'll tell you that things didn't turn out well. The experiment, according to St. Amand at least, had some serious flaws that the researcher refused to acknowledge. St. Amand is, to this day, still kissing the ass of the medical establishment, trying to get another study done. It's been quite a number of years now.
But St. Amand is kind of the exception in the Alternative Medicine world; like the square, button down math geek in high school who played in the heavy metal band with a bunch of stoners and burn-outs. He's a true medical conservative (doesn't think herbs or magnesium or other commonly used alternative Fibromyalgia treatments are worth talking about) who just happened to stumble across a theory that went against the mainstream grain. He actually kept it quiet for many years simply because he didn't want to be labelled a quack and have to defend himself. Hhe seems determined not to become an Alt Med guy. And honestly, he's suffered for that. He's still pounding his head against the wall trying to nicely and sweetly convince the medical community to accept his idea.
But most people who find themselves pushing a non-mainstream theory don't do it this way. They don't bother trying to raise money and get studies conducted. They treat patients, network with like minded folks, make web pages, write books, etc. And these people are not always doctors. Sometimes they're nutritionists, biologists or even patients. A guy named Dreyfus found that Dilantin, an anti-seizure medicine, helped his depression and went on a crusade to get doctors to prescribe it for this and other conditions. He wasn't any kind of health care or bio-science person; he was a salesman, I think. He ended up meeting with then Vice President Ford to discuss getting some government agency to do something about it. He also wrote a book and a did a ton of other stuff.
Now, all of that might give you some idea as to how one goes about getting wider acceptance for a new theory. There's the St. Amand model which involves lots of patience and studies and what not. And then there's the more commonly used model which is to simply take the treatment directly to the patients and, once enough of them find that it works, watch the mainstreamers cave in and accept it. This has happened with things like St. John's Wort and Echinachia.
Suppose, though, that you're not worried so much about convincing everyone to buy your theory; you just want to find a doctor to try this theory out on you. In that case, you're definitely going to want to look for practitioners of alternative medicine. The odds on finding a mainstream doctor who will do this sort of thing are incredibly small. So you'll want an alt-med-ian who's knowledgeable in as many areas as possible and who has a genuinely open mind. The sad truth is that plenty of people in the alt med universe have a religious devotion to a handful of theories or treatments and are even less tolerant than mainstream doctors of new ideas. But the open minded ones are out there, I promise.
posted by Clay201 at 7:15 AM on November 11, 2006
ilovecheese: Why don't you start a support/advocacy organization for people with this disorder. By bringing together many people with the same disorder, you will have a louder voice. If your organization then starts doing things like lobbying your local congressmen and the like, you will get even more exposure. If you play your cards right, you can introduce your theory to others afflicted with this condition, and perhaps to the wider community.
The value of this approach is twofold. First, you are more likely to get this issue on researchers' radar screens, and second, you may be able to use this organization as a way to raise money to support research and advocacy. Research does require money, and while it is unlikely that you will be able to fund any significant research efforts, a small grant to a graduate student interested in the topic can lead to that student's lab writing a grant proposal to NIH for some real bucks.
I think organizing people who have similar interests and goals is a great idea. However, advocacy groups that promote scientific theories make me nervous. The reason being not the group members, but their representation. Advocacy lawyers can be very tenacious to the point of harassing scientists whose research is disfavorable to the promoted theory. So, to make the distinction, promoting awareness and well-conducted research is good, but simply promoting a theory is not so good.
I would also like to say that doctors and scientists don't just resist 'alternative' theories out of sheer rigidity. There are a LOT of 'alternative' theories, and most of them are complete crap. The scientific process is the most trusted way to sift through them, and with it being a fight to get funding for even 'regular' theories sometimes, maybe you can understand why they might be very picky about which chances they take with that funding.
Things are usually more complicated than they appear. In the case of St. John's Wort and other herbals, there is a huge problem with standardization. Not knowing what the active ingredient(s) are among the thousands of chemicals that make up an 'herbal extract,' how do you standardize the dose? How do you test something like that and know what the results mean? And by extension, how does it show responsibility to strongly advocate the use of unknowns? On the one hand, there's blame for ignoring viable alternatives, and on the other there's blame for not doing enough to protect the population.
posted by zennie at 9:10 AM on November 11, 2006 [1 favorite]
The value of this approach is twofold. First, you are more likely to get this issue on researchers' radar screens, and second, you may be able to use this organization as a way to raise money to support research and advocacy. Research does require money, and while it is unlikely that you will be able to fund any significant research efforts, a small grant to a graduate student interested in the topic can lead to that student's lab writing a grant proposal to NIH for some real bucks.
I think organizing people who have similar interests and goals is a great idea. However, advocacy groups that promote scientific theories make me nervous. The reason being not the group members, but their representation. Advocacy lawyers can be very tenacious to the point of harassing scientists whose research is disfavorable to the promoted theory. So, to make the distinction, promoting awareness and well-conducted research is good, but simply promoting a theory is not so good.
I would also like to say that doctors and scientists don't just resist 'alternative' theories out of sheer rigidity. There are a LOT of 'alternative' theories, and most of them are complete crap. The scientific process is the most trusted way to sift through them, and with it being a fight to get funding for even 'regular' theories sometimes, maybe you can understand why they might be very picky about which chances they take with that funding.
Things are usually more complicated than they appear. In the case of St. John's Wort and other herbals, there is a huge problem with standardization. Not knowing what the active ingredient(s) are among the thousands of chemicals that make up an 'herbal extract,' how do you standardize the dose? How do you test something like that and know what the results mean? And by extension, how does it show responsibility to strongly advocate the use of unknowns? On the one hand, there's blame for ignoring viable alternatives, and on the other there's blame for not doing enough to protect the population.
posted by zennie at 9:10 AM on November 11, 2006 [1 favorite]
Response by poster: Thanks everyone for all the thoughts and advice.
Clay201, alternative medicine isn't an option because I'm dealing with a problem that's mechanical. As much as it makes me unhappy, I'll probably need the surgeons.
off-topic, zennie, there are some countries where St. John's Wort is only sold by prescription and seems to have been standardized (but, I'm no expert).
posted by mirileh at 9:38 AM on November 11, 2006
Clay201, alternative medicine isn't an option because I'm dealing with a problem that's mechanical. As much as it makes me unhappy, I'll probably need the surgeons.
off-topic, zennie, there are some countries where St. John's Wort is only sold by prescription and seems to have been standardized (but, I'm no expert).
posted by mirileh at 9:38 AM on November 11, 2006
As much as it makes me unhappy, I'll probably need the surgeons.
I'm not sure this necessarily rules out the alt-med crowd. First, even if they can't cough up a surgeon, they might be able to help you put your theory together in such a way that you can convince a surgeon to listen to you. Or maybe they can come up with a non-surgical treatment or a method of testing whether your theory is correct.
Second, I can think of one instance where surgeons ended up on the alt-med side of the fence. There was a controversy about diagnosing and performing surgery to correct something called chiari malformation in people previously thought to have fibromylagia. At the time I was reading about this subject, only a handful of surgeons in the country were advocating this.
Actually, it occurs to me that since the chiari malformation involves strange symptoms, the neck, and the spinal cord, it might be more directly relevant to your problem. There should be plenty of info available on the web.
In any case, it is possible that there are other surgeons out there who are alt med enough to consider your proposal.
Good luck with your pursuit.
posted by Clay201 at 4:23 PM on November 11, 2006
I'm not sure this necessarily rules out the alt-med crowd. First, even if they can't cough up a surgeon, they might be able to help you put your theory together in such a way that you can convince a surgeon to listen to you. Or maybe they can come up with a non-surgical treatment or a method of testing whether your theory is correct.
Second, I can think of one instance where surgeons ended up on the alt-med side of the fence. There was a controversy about diagnosing and performing surgery to correct something called chiari malformation in people previously thought to have fibromylagia. At the time I was reading about this subject, only a handful of surgeons in the country were advocating this.
Actually, it occurs to me that since the chiari malformation involves strange symptoms, the neck, and the spinal cord, it might be more directly relevant to your problem. There should be plenty of info available on the web.
In any case, it is possible that there are other surgeons out there who are alt med enough to consider your proposal.
Good luck with your pursuit.
posted by Clay201 at 4:23 PM on November 11, 2006
fourcheesemac, because it crosses different fields, I need more than one sympathetic doctor. I need them to collaborate. Also, more research needs to be done to find a solution (I think I understand the cause. the solution isn't obvious).
So go out and find more than one sympathetic doctor, and try to find some specialists who will work together.
In most respects, your primary problem seems to be delusional thinking.
posted by fourcheesemac at 12:00 PM on November 12, 2006
So go out and find more than one sympathetic doctor, and try to find some specialists who will work together.
In most respects, your primary problem seems to be delusional thinking.
posted by fourcheesemac at 12:00 PM on November 12, 2006
1. Is there a standard format for proposing a medical theory to explain a disorder?
Go to medical school or a science doctoral program. Obtain an MD or PhD. Join a major research project or write your own grants to start one. Build a lab and research team. Obtain necessary human subjects clearance. Recruit subjects. Do the science. Publish it in a peer-reviewed medical journal.
Real standard, actually. And there's no shortcut.
posted by fourcheesemac at 12:01 PM on November 12, 2006
Go to medical school or a science doctoral program. Obtain an MD or PhD. Join a major research project or write your own grants to start one. Build a lab and research team. Obtain necessary human subjects clearance. Recruit subjects. Do the science. Publish it in a peer-reviewed medical journal.
Real standard, actually. And there's no shortcut.
posted by fourcheesemac at 12:01 PM on November 12, 2006
While I was looking through grad programs in biomedical engineering, I came across this, which might interest you:
http://spinepain.seas.upenn.edu/
posted by scalespace at 7:48 PM on November 13, 2006
http://spinepain.seas.upenn.edu/
posted by scalespace at 7:48 PM on November 13, 2006
This thread is closed to new comments.
posted by TedW at 6:51 AM on November 10, 2006