This makes me wonder about why you'd choose to bury your lobbying in a support forum for patients who aren't researchers rather than a forum where only researchers hang out? A medical or science forum would not only put you in contact with the community you say you want to reach, but also with people who would teach you how understand the stuff you're researching.
http://aspher.org/pg/profile/yrforum
http://www2.warwick.ac.uk/fac/soc/ier/ngrf/
https://www.alzforum.org/login?destination=my-alzforum
Remember the context of the forum you are posting in. If you were posting all this, using the language you have used, in a forum for scientists, you wouldn't have too much of an ethical problem. But you are posting in a forum for epilepsy patients who're in dire need of proper treatment. The number of people who know how to question and pick apart poor studies is not all that high, so when you say, "We know that the gut is the origin of epilepsy because 'This Study'", a lot of patients will start to believe it. When you say, "The rate of success for anti-convulsant therapy is incredibly low,' a lot of people will take it at face value instead of checking the numbers for themselves to find that you are wrong. When you say, "Take these pills for anorexia," someone might do it, and become very ill. You're saying these things in an ecosystem of new diagnoses who are terrified about what their future will look like. Among them are people like myself, who most definitely have epilepsy that originates in the brain. If I came across your statement about anti-convulsants and medical treatments being largely unsuccessful in my early diagnosis when I was stressed and terrified beyond belief already, you'd have pushed me over the edge.
It'd be more ethical to check your facts properly, and to use less certain language when you're presenting studies that haven't been replicated on humans or statistics that you don't understand. You've presented an enormous amount of opinion in this thread, about everything from anorexia to drugs to blood sugar levels, from diabetes to heart disease to cancer. Not even a trained medical professional is willing to offer opinions to patients on all of these things single handedly. That's why we're sent to specialists who practice in the field of neurology, or cardiology, or oncology. Yet you use language that suggests you know more than all these medical specialists combined, in an environment where patients who are very ill hang out looking for suggestions for their treatment.
I'm also concerned that you think you can help people with epilepsy without an understanding of what epilepsy is? You've researched all your gut-origin premises without ever having researched what a seizure disorder is. When you're shooting a burglar in a pitch black room full of people, you're more likely to hurt people than to help them. You have to turn on the light, or let the guy steal the silver. You need to know what you're doing before your suggestions can stop being dangerous to patients.
We do make suggestions to one another in this forum, but you'll see that we're clear about the context of those suggestions: "My doctor said x but it didn't help', 'My doctor did this and it helped', 'I don't know if this is true but X, so ask your doctor about it", "I found this study. It says there might be a link between carrots and epilepsy. I wonder how it will turn out or whether it's true. What's your opinion?" In other words, we speak as though we are not doctors, because we aren't doctors.
You're also not reading the studies you post or properly researching their context, which wouldn't be a problem if you weren't suggesting to patients that they follow your suggestions. But if you are going to post studies around patients, please give everyone the respect of reading them and researching their background. The lasseiz-faire attitude you've displayed thus far with the studies you present doesn't have respect, compassion, or concern, for the patients here.
There's no trouble with lobbying for research in a group of researchers, and there are many, many forums for researchers, none of which you're using for your lobbying. There is trouble with treating patients, and telling patients things you don't understand. There is trouble lobbying for research in a community of patients without paying attention to the honesty of your language.
http://aspher.org/pg/profile/yrforum
http://www2.warwick.ac.uk/fac/soc/ier/ngrf/
https://www.alzforum.org/login?destination=my-alzforum
Remember the context of the forum you are posting in. If you were posting all this, using the language you have used, in a forum for scientists, you wouldn't have too much of an ethical problem. But you are posting in a forum for epilepsy patients who're in dire need of proper treatment. The number of people who know how to question and pick apart poor studies is not all that high, so when you say, "We know that the gut is the origin of epilepsy because 'This Study'", a lot of patients will start to believe it. When you say, "The rate of success for anti-convulsant therapy is incredibly low,' a lot of people will take it at face value instead of checking the numbers for themselves to find that you are wrong. When you say, "Take these pills for anorexia," someone might do it, and become very ill. You're saying these things in an ecosystem of new diagnoses who are terrified about what their future will look like. Among them are people like myself, who most definitely have epilepsy that originates in the brain. If I came across your statement about anti-convulsants and medical treatments being largely unsuccessful in my early diagnosis when I was stressed and terrified beyond belief already, you'd have pushed me over the edge.
It'd be more ethical to check your facts properly, and to use less certain language when you're presenting studies that haven't been replicated on humans or statistics that you don't understand. You've presented an enormous amount of opinion in this thread, about everything from anorexia to drugs to blood sugar levels, from diabetes to heart disease to cancer. Not even a trained medical professional is willing to offer opinions to patients on all of these things single handedly. That's why we're sent to specialists who practice in the field of neurology, or cardiology, or oncology. Yet you use language that suggests you know more than all these medical specialists combined, in an environment where patients who are very ill hang out looking for suggestions for their treatment.
I'm also concerned that you think you can help people with epilepsy without an understanding of what epilepsy is? You've researched all your gut-origin premises without ever having researched what a seizure disorder is. When you're shooting a burglar in a pitch black room full of people, you're more likely to hurt people than to help them. You have to turn on the light, or let the guy steal the silver. You need to know what you're doing before your suggestions can stop being dangerous to patients.
We do make suggestions to one another in this forum, but you'll see that we're clear about the context of those suggestions: "My doctor said x but it didn't help', 'My doctor did this and it helped', 'I don't know if this is true but X, so ask your doctor about it", "I found this study. It says there might be a link between carrots and epilepsy. I wonder how it will turn out or whether it's true. What's your opinion?" In other words, we speak as though we are not doctors, because we aren't doctors.
You're also not reading the studies you post or properly researching their context, which wouldn't be a problem if you weren't suggesting to patients that they follow your suggestions. But if you are going to post studies around patients, please give everyone the respect of reading them and researching their background. The lasseiz-faire attitude you've displayed thus far with the studies you present doesn't have respect, compassion, or concern, for the patients here.
There's no trouble with lobbying for research in a group of researchers, and there are many, many forums for researchers, none of which you're using for your lobbying. There is trouble with treating patients, and telling patients things you don't understand. There is trouble lobbying for research in a community of patients without paying attention to the honesty of your language.
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