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Video testimonials and social exposure
We all have been on several forums and sites trying to find remedies that give us relief to a certain extent. But this definitely doesnt get the medical attention it needs. There are few people who've posted videos on utube regarding their experience and even a tv show showcasing the same.
I'm a photographer/videographer/techie geek and was thinking of creating a video that i could share in different groups regarding our disorder. Most of us viewing this forum wouldnt step forward since "some" would want to keep their identities private. But if we somehow get 20+ people saying a few lines about their ordeal/experience/symptoms then it could reach the hands of a medical professional. And we could even share it with the MEBO group so they could give the attention it deserves.
A video would literally paint a better picture than having someone read through a forum. Just saying. Thoughts?
I'm a photographer/videographer/techie geek and was thinking of creating a video that i could share in different groups regarding our disorder. Most of us viewing this forum wouldnt step forward since "some" would want to keep their identities private. But if we somehow get 20+ people saying a few lines about their ordeal/experience/symptoms then it could reach the hands of a medical professional. And we could even share it with the MEBO group so they could give the attention it deserves.
A video would literally paint a better picture than having someone read through a forum. Just saying. Thoughts?
As someone who tries to put my experiences out there on youtube, I would be very interested in helping with any form of public outreach about PATM that I can. I understand @dontgiveuphope's cynicism about science (being an academic myself), but video evidence is always better than anecdotal evidence. True, a video will not convince even the most open-minded researcher to put in a multi-million dollar grant application to the NIH to study PATM, but do you honestly think spreadsheets of information from online surveys would do any better? Or ramblings on a website? I experience enough freakish reactions around me on a daily basis that I wish these experiences could at least be documented for posterity.
We need to start somewhere, and it's good to have a realistic end-goal. No, we will not get PATM into a scientific textbook within our lifetimes, we will not see the creation of a "Journal of PATM Studies", we won't even see any medical researchers get their PhDs studying PATM (because who would be willing to supervise such a dissertation?). But we need to do something that will get the disorder at least some degree of recognition, and a couple hundred people venting online isn't going to do it.
There's a lot of heavy lifting that needs to be done if we want to get any help for PATM. Yes, I know it's unfair to have to fight to get help, but as we PATMers know: Life's not fair. Of course, very few researchers would want to tackle PATM, for a variety of reasons. For starters, there's no battle-tested, agreed-upon way of even diagnosing someone with PATM (although Dr. Irene Gabashvili's research is a start), so researchers would be worried about the internal validity of any PATM study (i.e., do the participants in the study actually have this thing we call PATM?). Second, supposing that a researcher did settle on a way of operationalizing PATM, there would still be a significant sample size constraint - even if the researchers tapped into a rich vein of potential PATM participants, many of these participants would need to be excluded if they have other health issues that could interfere with attributing the findings to PATM and PATM alone. Third, even if the researchers managed to get a publishable study out of their endeavors, their endeavors would still only amount to just one study, and scientists are rarely convinced by just one study. And we're not even talking about a cure/treatment yet - we're just talking about getting acknowledgment for our condition.
So we're a long way away from getting where we'd like to be, but a clearly and responsibly made video would be a good start.
We need to start somewhere, and it's good to have a realistic end-goal. No, we will not get PATM into a scientific textbook within our lifetimes, we will not see the creation of a "Journal of PATM Studies", we won't even see any medical researchers get their PhDs studying PATM (because who would be willing to supervise such a dissertation?). But we need to do something that will get the disorder at least some degree of recognition, and a couple hundred people venting online isn't going to do it.
There's a lot of heavy lifting that needs to be done if we want to get any help for PATM. Yes, I know it's unfair to have to fight to get help, but as we PATMers know: Life's not fair. Of course, very few researchers would want to tackle PATM, for a variety of reasons. For starters, there's no battle-tested, agreed-upon way of even diagnosing someone with PATM (although Dr. Irene Gabashvili's research is a start), so researchers would be worried about the internal validity of any PATM study (i.e., do the participants in the study actually have this thing we call PATM?). Second, supposing that a researcher did settle on a way of operationalizing PATM, there would still be a significant sample size constraint - even if the researchers tapped into a rich vein of potential PATM participants, many of these participants would need to be excluded if they have other health issues that could interfere with attributing the findings to PATM and PATM alone. Third, even if the researchers managed to get a publishable study out of their endeavors, their endeavors would still only amount to just one study, and scientists are rarely convinced by just one study. And we're not even talking about a cure/treatment yet - we're just talking about getting acknowledgment for our condition.
So we're a long way away from getting where we'd like to be, but a clearly and responsibly made video would be a good start.
3 Comments
Hey @PATMsufferer, thanks for the nice input. I like your post and ideas. Personally, I’m not cynic about the video experiment. If you read my comments completely, I stated clearly that if the video experiment is going to have any chance of success it has to be done according to the strict scientific approach, and if not, it’s not going to work given that we both know how many sufferers here don’t understand what strict scientific experiments and evidence mean. Many here think they can just take videos of someone coughing beside them and that’s enough to convince Professors, like the ones on YouTube. As we both know those aren’t good enough to convince ordinary people.
For instance, let’s look at other diseases. On the video below, a group of Morgellons not only showed hard evidence of body sores but unknown fibers. There are hundreds of thousands of them. They collaborated with TV broadcasters to run their claimed unique fiber against the entire FBI fiber database and proved its uniqueness. Still the majority of the medical community today don’t recognize it or care to prove it.
https://www.youtube.com/watch?v=xsiJpuARHcE
On the previous videos I uploaded of Ellie James, a TMAU2 and probably with PATM, went from doctor to doctor and despite the hard evidence of smelling like dead fish, garbage and rubber, they told her she’s mentally ill and unhygienic.
Both of the above examples had better evidence but still weren’t taken seriously. Now Imagine if both conditions had less evidence like ours.
This is why I explained that a video made on PATM, has to be extremely compelling or they’ll just dismiss it. We may see them as rude but they have the power and we don’t. What this shows is that the medical community aren’t easy to persuade especially something that isn’t in the medical literature.
But in actual fact, I agree with everything you said. Your explanation on the various obstacles is great and interesting.
I agree we need to do something and start somewhere but wherever we turn, it cost. Even the internet we’re on cost. If we had the money, everything is easy. Any ideas?
Given the participant issue, the old survey reveals that US has 59 PATMers and UK 12. Other areas are much much less. So if there’s ever going to be participants for sample gathering, it will have to be done in the US. There’s the other option of sending samples via courier on frozen packages. All very easy if we have some money somewhere.
@PATMsufferer, how much do you think it takes to run a complete independent research on PATM? Let’s throw in our ideas.
If no one has any ideas how to finance this, I’m going to rob the nearest bank...hahaha.
For instance, let’s look at other diseases. On the video below, a group of Morgellons not only showed hard evidence of body sores but unknown fibers. There are hundreds of thousands of them. They collaborated with TV broadcasters to run their claimed unique fiber against the entire FBI fiber database and proved its uniqueness. Still the majority of the medical community today don’t recognize it or care to prove it.
https://www.youtube.com/watch?v=xsiJpuARHcE
On the previous videos I uploaded of Ellie James, a TMAU2 and probably with PATM, went from doctor to doctor and despite the hard evidence of smelling like dead fish, garbage and rubber, they told her she’s mentally ill and unhygienic.
Both of the above examples had better evidence but still weren’t taken seriously. Now Imagine if both conditions had less evidence like ours.
This is why I explained that a video made on PATM, has to be extremely compelling or they’ll just dismiss it. We may see them as rude but they have the power and we don’t. What this shows is that the medical community aren’t easy to persuade especially something that isn’t in the medical literature.
But in actual fact, I agree with everything you said. Your explanation on the various obstacles is great and interesting.
I agree we need to do something and start somewhere but wherever we turn, it cost. Even the internet we’re on cost. If we had the money, everything is easy. Any ideas?
Given the participant issue, the old survey reveals that US has 59 PATMers and UK 12. Other areas are much much less. So if there’s ever going to be participants for sample gathering, it will have to be done in the US. There’s the other option of sending samples via courier on frozen packages. All very easy if we have some money somewhere.
@PATMsufferer, how much do you think it takes to run a complete independent research on PATM? Let’s throw in our ideas.
If no one has any ideas how to finance this, I’m going to rob the nearest bank...hahaha.
I'm thinking that our best hope is to get Dr. Irene Gabashvili (or a doctor associated with MeBO) involved, since they seem sympathetic to our ideas already.
Right now, I think the most efficient thing to do would be to find the purest, most incontrovertible cases of PATM and get a doctor to do a case study on one of them (because case studies are also valuable in science - we don't necessarily have to aim for the gold standard of double-blind, placebo-controlled studies just yet). As you've pointed out (and I've found out from personal experience), few doctors would be convinced by any amount of video, anecdotal, or even interview evidence (no matter how well-presented) to undertake a case study, so we most likely want to contact people whose ears we already have apparently.
Since PATM is making me radically re-think my future career prospects, a part of me wants to use my savings to fly out to San Francisco myself and beg to be studied by Aurametrix. Of course, I'd contact Dr. Gabashvili ahead of time, try to convince her that I'm probably one of the severest cases of PATM she could ever find, and see if she's interested in doing a case study on me.
I don't know if she's a medical doctor herself (i.e., she might be more of statistician who analyzes massive amounts of existing data), in which case I'd actually be tested by other doctors - but she would know which doctors to send me to, since she's done the pilot study already.
With any scientific research, there would be costs associated with using people's time and facilities (not to mention an ethical review process for the research), so it wouldn't be as easy as just showing up at Aurametrix's doorstep, but I feel like this targeted approach would be the most efficient use of money.
Right now, I think the most efficient thing to do would be to find the purest, most incontrovertible cases of PATM and get a doctor to do a case study on one of them (because case studies are also valuable in science - we don't necessarily have to aim for the gold standard of double-blind, placebo-controlled studies just yet). As you've pointed out (and I've found out from personal experience), few doctors would be convinced by any amount of video, anecdotal, or even interview evidence (no matter how well-presented) to undertake a case study, so we most likely want to contact people whose ears we already have apparently.
Since PATM is making me radically re-think my future career prospects, a part of me wants to use my savings to fly out to San Francisco myself and beg to be studied by Aurametrix. Of course, I'd contact Dr. Gabashvili ahead of time, try to convince her that I'm probably one of the severest cases of PATM she could ever find, and see if she's interested in doing a case study on me.
I don't know if she's a medical doctor herself (i.e., she might be more of statistician who analyzes massive amounts of existing data), in which case I'd actually be tested by other doctors - but she would know which doctors to send me to, since she's done the pilot study already.
With any scientific research, there would be costs associated with using people's time and facilities (not to mention an ethical review process for the research), so it wouldn't be as easy as just showing up at Aurametrix's doorstep, but I feel like this targeted approach would be the most efficient use of money.
I think this is a well laid out idea. It looks realistic in regards to finance, time and limited resources we have.
The experiment to show whether PATM goes through glass or wall has been brought up several times in past years. Someone has just posted on the same issue recently - the Russian dude I think. A non patmer must be in a spacesuit, diving gear where he’s breathing directly from the oxygen bottle without breathing anything from the surrounding air. His nose must be in the diving mask too. A PATMer can come and sit next to him for 20 – 30 min. Observe the results.
I’m just saying this for the interest of listeners but honestly I know the outcome already 100%.
I’m just saying this for the interest of listeners but honestly I know the outcome already 100%.
2 Comments
It seems like this question could also be answered with a negative-pressure room - pretty standard stuff in most hospitals.
Yeah, true. Great idea. But I doubt anyone has access to such facility.
look--- just everyone STOP over analyzing an outcome.
Just everyone send in a 20 minute or kess time lapsed video of people reacting--make it a good one--not the crap ones you have seen on internet.
without showing yourself.--have family or friend film.
Send it in anymous to MEBO--labeled PATM.
Have everyone pick a date -- example Oct 1st 2018 - we all mail it to them on that date.
This way they get the videos at same time.
Leave it in their hands.
Lets see how they REACT. Not you.
Just everyone send in a 20 minute or kess time lapsed video of people reacting--make it a good one--not the crap ones you have seen on internet.
without showing yourself.--have family or friend film.
Send it in anymous to MEBO--labeled PATM.
Have everyone pick a date -- example Oct 1st 2018 - we all mail it to them on that date.
This way they get the videos at same time.
Leave it in their hands.
Lets see how they REACT. Not you.
1 Comments
For what? What do you expect in return from MeBO researchers? If they believe, the best they’ll do is collect samples from us, do experiments and get back to us with initial results probably next year.
Guess what? That’s what they’ve done, perhaps from last year and still progressing. That’s where we got our initial results from. Somebody please show this person the presentation link of their initial report and progress so far.
Guess what? That’s what they’ve done, perhaps from last year and still progressing. That’s where we got our initial results from. Somebody please show this person the presentation link of their initial report and progress so far.
This is a huge guess, but I believe 99% of PATMers are probably roaming around on TMAU, Halitosis, body odor forums. I’ve been to many of them and some describe symptoms as coughing and sneezing and not taken seriously by their doctors.
Old survey, reveals about 123 people participated so my guess is the other 99%, which is 12177 people, are not here. They are probably arguing with other people on their own forums.
Old survey, reveals about 123 people participated so my guess is the other 99%, which is 12177 people, are not here. They are probably arguing with other people on their own forums.
7 Comments
You could probably add in a small chunk of people who went through life not realizing they had it. It's definitely a rare disease but rare diseases are researched all the time.
I'd say there are also a lot of lurkers and if you look in the post from 2007 by HelplessHopeful, it has 8819 replies by many different users. I still have only cracked the surface on that thread, reading page 4. Many of these people post once their story and then leave.
Agree, there are probably sufferers who know they have it but also believe they’re the only one in the planet with the disease. They have no contact with other communities including us. Honestly, I thought I was the only one with PATM until the forum started 2007. Being alone is the scariest thing for most people.
For those of you that are biology majors, I just read that the Appendix is like a reservoir of good bacteria. So, when we take antibiotics, our gut gets wiped out of good and bad bacteria. The Appendix is supposed to release good bacteria back into the gut. Is there any truth to this.
I've heard that the Appendix did not really serve any type of function and people get them removed.
Any thoughts.
I've heard that the Appendix did not really serve any type of function and people get them removed.
Any thoughts.
Yes, ray2502, the purpose of the appendix was not fully known. I think it was only recently they discovered that – it’s our reservoir for our gut bacteria (good and bad). So if we have bad ones, associated with diseases, in there, diseases might persist.
Has anybody here on this forum had their appendix removed for whatever reason? Please respond!
I'm not aware but it will be interesting. I think if someone here had appendix removal they'd have yelled out already by now.
@PATMsufferer
Please talk me through on your ideas on how to carry out the experiment and make it compelling to capture some attention, at least the media.
Please talk me through on your ideas on how to carry out the experiment and make it compelling to capture some attention, at least the media.
3 Comments
An example of a compelling video that I would need assistance in making could be (I posted this research idea awhile back):
"
Find an office or classroom environment with at least 20-30 people who regularly use it (these 20-30 people need to be the same people throughout the experiment to control for within-subjects variation). Monitor this environment for, maybe, 1 hour per day (or however long a class might be) for 10 days to establish a baseline assessment of how many coughs and other PATM-type reactions typically occur within this group of people. After this 10 day control period, introduce someone with PATM into the environment and record reactions for another 10 days (1 hour per day at the same time as the control recordings). Remove the person with PATM and record the number of reactions in the environment for another 10 days. If you have ethical approval to do so, make video recordings of all of the observations so that coding of PATM reactions doesn’t have to be done in real-time and so that the codings can be verified by independent observers at a later time.
To really ratchet-up the rigor of this experiment, it could be made double-blind by telling everyone involved (i.e., the 30 people in the office/classroom and the person with PATM) that only half of the days will actually be recorded. So during every 10 day assessment period, only 5 days are actually recorded, and none of the participants will know whether any particular day is being recorded or not. Also, have an uninvolved research assistant determine which days will be recorded, so that the experimenters don’t know which days are being recorded either. If you can go down this double-blind route, it might also be good to increase the number of days of observations (e.g., instead of observing people for 10 days per condition, observe for 30 (and only record 15), making it a 3-month long study).
This study would be revealing, and if the experimenters went through the proper ethical channels, it could be publishable. Ethics requires that all participants give informed consent, or at least assent, to being observed, so the 20-30 people in the office/classroom need to know that their behavior is being recorded for a certain period of time (they, of course, won’t be told that we’re recording how many coughs or other reactions they produce – they need to be blind to our dependent measures). The person with PATM needs to be told that only half of the of observational period will be recorded and that the periods of recording will be determined randomly; this random assignment of recording periods lessens the ability of the person with PATM to manipulate the results of the experiment. The experimenters also need to be blind to when the recordings will take place, so that they don’t do anything to influence the results of the experiment during data collection. Also, during coding, the coders should not be told which condition of the experiment they’re coding (i.e., coders should be naïve people who simply are told: “Tally the number of coughs, throat-clearings, etc. that you observe in this video”; they should have no idea what the experimental conditions even are).
"
"
Find an office or classroom environment with at least 20-30 people who regularly use it (these 20-30 people need to be the same people throughout the experiment to control for within-subjects variation). Monitor this environment for, maybe, 1 hour per day (or however long a class might be) for 10 days to establish a baseline assessment of how many coughs and other PATM-type reactions typically occur within this group of people. After this 10 day control period, introduce someone with PATM into the environment and record reactions for another 10 days (1 hour per day at the same time as the control recordings). Remove the person with PATM and record the number of reactions in the environment for another 10 days. If you have ethical approval to do so, make video recordings of all of the observations so that coding of PATM reactions doesn’t have to be done in real-time and so that the codings can be verified by independent observers at a later time.
To really ratchet-up the rigor of this experiment, it could be made double-blind by telling everyone involved (i.e., the 30 people in the office/classroom and the person with PATM) that only half of the days will actually be recorded. So during every 10 day assessment period, only 5 days are actually recorded, and none of the participants will know whether any particular day is being recorded or not. Also, have an uninvolved research assistant determine which days will be recorded, so that the experimenters don’t know which days are being recorded either. If you can go down this double-blind route, it might also be good to increase the number of days of observations (e.g., instead of observing people for 10 days per condition, observe for 30 (and only record 15), making it a 3-month long study).
This study would be revealing, and if the experimenters went through the proper ethical channels, it could be publishable. Ethics requires that all participants give informed consent, or at least assent, to being observed, so the 20-30 people in the office/classroom need to know that their behavior is being recorded for a certain period of time (they, of course, won’t be told that we’re recording how many coughs or other reactions they produce – they need to be blind to our dependent measures). The person with PATM needs to be told that only half of the of observational period will be recorded and that the periods of recording will be determined randomly; this random assignment of recording periods lessens the ability of the person with PATM to manipulate the results of the experiment. The experimenters also need to be blind to when the recordings will take place, so that they don’t do anything to influence the results of the experiment during data collection. Also, during coding, the coders should not be told which condition of the experiment they’re coding (i.e., coders should be naïve people who simply are told: “Tally the number of coughs, throat-clearings, etc. that you observe in this video”; they should have no idea what the experimental conditions even are).
"
Thanks @PATMsuffer. Wow! Did everybody see that? That’s what I call a scientific approach… something that might get the attention of the scientific community.
@Jon3456, if you read this, this is what I meant by a video that follows the scientific approach. I think this a good draft to follow. Perhaps you’re not in school but maybe other scenes can be organized in a similar manner.
@Jon3456, if you read this, this is what I meant by a video that follows the scientific approach. I think this a good draft to follow. Perhaps you’re not in school but maybe other scenes can be organized in a similar manner.
What PATMSuffer has outlined is a great plan to execute but the probability of having such a large number of people together for the experiment is very unlikely. If someone can pull it off then definitely it would be a milestone in our journey.
Now onto highlighting the outcome of the experiment (coughs, throat-clearings, sneezes, rubbing eyes..). Individual A would have 6 coughs for instance while indB would have 20 sneezes and indF would've no reactions. This data might prove to be beneficial to the scientific community, since its a thought process. If someone is going ahead with this then we'll definitely look forward to seeing the result. God bless!
Now onto highlighting the outcome of the experiment (coughs, throat-clearings, sneezes, rubbing eyes..). Individual A would have 6 coughs for instance while indB would have 20 sneezes and indF would've no reactions. This data might prove to be beneficial to the scientific community, since its a thought process. If someone is going ahead with this then we'll definitely look forward to seeing the result. God bless!
I think the goal of videos is to get publicity. Get publicity and cross your fingers that some researchers are interested in doing experiments to prove/disprove it.
Maybe it's just a video pleading researchers to help. We shouldn't be taxed with the job of proving this.
Maybe it's just a video pleading researchers to help. We shouldn't be taxed with the job of proving this.
2 Comments
You never know. If the experiment is done right it might lead to funding and research. Morgellons pressured Govt and got theirs done.
Yeah, the video experiment is different from all the experiments on whether PATM travels through glass/wall/phones etc.
@Jon3456, thank you for those great ideas. They say that to present something to an audience, you have to know what they like, interest, expect and want to see etc.
The scientific community is no exception. There’s something that they expect to see if we want them to take things seriously. The scientific peer-reviewed-paper approach is something that came out from thousands of years of human history. Science didn’t start by itself. It somehow morphed out from older disciplines such as philosophy, old natural science and beyond that. They’ve found ways to make sure that assumptions, prejudiced & subjective ideas, false beliefs, false experimentation, false conclusions etc. can never get in the way of the knowledge gathering process - Academia.
Because of this very nature, currently the whole scientific community approach is very very strict. I’m afraid that what @Smellyorus mentioned is true; probably all the videos you’d make will only addon to their beliefs that PATMers are crazy.
If you allow me, let me explain the problem with interviewing people. In science, interviewing sufferers’ claims on how other people feel is considered subjective evidence. Subjective evidence in science is regarded an assumption and that is the opposite of science. Science is objective. And this is why the scientific community will just reject it immediately and even make fun of it. As I have said many times before, I’ve studied and worked with them so know how they see things. Many of them sometimes appear arrogant in lectures, regarding other people’s ignorance, and would offend an unfamiliar person.
In other words, the videos have to be designed with scientific method in mind, if it’s going to have any chance. Even that, I doubt it, I think it still wouldn’t convince about 80% of the scientific community. It’s because many false claims in the past have already tarnished our reputation. For instance, let’s take Morgellons. This disease started off on the wrong foot. Despite recent proofs that it’s most likely a real disease, 99% of the medical community has gotten stuck with the assumption that these folks are just mad. A few doctors have come out and admitted that only if researchers would look under the microscope once they’d see something weird. FBI database has revealed no record of these fibers existing anywhere except on patients but still scientific community aren’t convinced. What happened in the past is not easy to erase.
Nevertheless, you could make an experiment that is very compelling and hard to refute scientifically – via video but you’d need someone to help. You can have someone take videos of you sitting within a crowd and trying to engage with people within. For instance, you can have scenes in a bus, restaurant, train, movie theater, church, school etc. Do this 20 or more times. Make sure your aiding partner takes prior videos, let’s say 5 mins, of the crowd/group of people and seat where you’ll sit before the actual engagement. The faces and any area of the footage can be blinded/blurred easily with software afterwards. Almost all video editing software support this.
Now that would be scientifically relevant. If 95% of those people start getting allergies, get up and leave, that would be a compelling experiment and very difficult to refute. And even if most scientists don’t believe in PATM, they’d still not question the validity of the experiment. There’d be few scientists tempted to experiment afterwards.
One of the most unconvincing mistakes of PATM videos made, is that authors would go and sit far away in a corner and never engage, and worse try to hide filming people or tables 10 meters away and end up taking videos of themselves or his own table instead. Therefore, someone has to be doing the filming. When I first got PATM I never thought about taking videos but I was brave enough to sit with people closely and ask directly why they cough, sneeze and feel. I did this to almost anyone, including family, friends, schoolmates and relatives. I was able to do this early because I never believed it had odor and has allowed me to collect real and honest data.
Therefore, unless videos are taken in a similar scientific approach, I’m afraid it wouldn’t achieve the intended goal.
The scientific community is no exception. There’s something that they expect to see if we want them to take things seriously. The scientific peer-reviewed-paper approach is something that came out from thousands of years of human history. Science didn’t start by itself. It somehow morphed out from older disciplines such as philosophy, old natural science and beyond that. They’ve found ways to make sure that assumptions, prejudiced & subjective ideas, false beliefs, false experimentation, false conclusions etc. can never get in the way of the knowledge gathering process - Academia.
Because of this very nature, currently the whole scientific community approach is very very strict. I’m afraid that what @Smellyorus mentioned is true; probably all the videos you’d make will only addon to their beliefs that PATMers are crazy.
If you allow me, let me explain the problem with interviewing people. In science, interviewing sufferers’ claims on how other people feel is considered subjective evidence. Subjective evidence in science is regarded an assumption and that is the opposite of science. Science is objective. And this is why the scientific community will just reject it immediately and even make fun of it. As I have said many times before, I’ve studied and worked with them so know how they see things. Many of them sometimes appear arrogant in lectures, regarding other people’s ignorance, and would offend an unfamiliar person.
In other words, the videos have to be designed with scientific method in mind, if it’s going to have any chance. Even that, I doubt it, I think it still wouldn’t convince about 80% of the scientific community. It’s because many false claims in the past have already tarnished our reputation. For instance, let’s take Morgellons. This disease started off on the wrong foot. Despite recent proofs that it’s most likely a real disease, 99% of the medical community has gotten stuck with the assumption that these folks are just mad. A few doctors have come out and admitted that only if researchers would look under the microscope once they’d see something weird. FBI database has revealed no record of these fibers existing anywhere except on patients but still scientific community aren’t convinced. What happened in the past is not easy to erase.
Nevertheless, you could make an experiment that is very compelling and hard to refute scientifically – via video but you’d need someone to help. You can have someone take videos of you sitting within a crowd and trying to engage with people within. For instance, you can have scenes in a bus, restaurant, train, movie theater, church, school etc. Do this 20 or more times. Make sure your aiding partner takes prior videos, let’s say 5 mins, of the crowd/group of people and seat where you’ll sit before the actual engagement. The faces and any area of the footage can be blinded/blurred easily with software afterwards. Almost all video editing software support this.
Now that would be scientifically relevant. If 95% of those people start getting allergies, get up and leave, that would be a compelling experiment and very difficult to refute. And even if most scientists don’t believe in PATM, they’d still not question the validity of the experiment. There’d be few scientists tempted to experiment afterwards.
One of the most unconvincing mistakes of PATM videos made, is that authors would go and sit far away in a corner and never engage, and worse try to hide filming people or tables 10 meters away and end up taking videos of themselves or his own table instead. Therefore, someone has to be doing the filming. When I first got PATM I never thought about taking videos but I was brave enough to sit with people closely and ask directly why they cough, sneeze and feel. I did this to almost anyone, including family, friends, schoolmates and relatives. I was able to do this early because I never believed it had odor and has allowed me to collect real and honest data.
Therefore, unless videos are taken in a similar scientific approach, I’m afraid it wouldn’t achieve the intended goal.
5 Comments
"One of the most unconvincing mistakes of PATM videos made, is that authors would go and sit far away in a corner and never engage, and worse try to hide filming people or tables 10 meters away and end up taking videos of themselves or his own table instead. Therefore, someone has to be doing the filming."
I could relate to doing this since being around people itself makes me go crazy since whenever you look at someone in their face/direction, they end up giving you a stare or reacting. So filming them would be a task.
Its definitely not something that can be accomplished in one go. It would need efforts from several users going around and capturing such events. Having a second person doing it for you is a luxury which most of us dont have. But if there are two PATM'ers working together then they could visit one place and have one film the other+the people around.
I could relate to doing this since being around people itself makes me go crazy since whenever you look at someone in their face/direction, they end up giving you a stare or reacting. So filming them would be a task.
Its definitely not something that can be accomplished in one go. It would need efforts from several users going around and capturing such events. Having a second person doing it for you is a luxury which most of us dont have. But if there are two PATM'ers working together then they could visit one place and have one film the other+the people around.
That is true, I agree it's hard. I think what made me bold is the fact I believed very early there was no odor after asking family members and cousins which I trusted so much that wouldn’t lie to me. I also had many relatives who were doctors.
Nevertheless, I understand you, it’s not easy. But if you go pass that, you’d be surprise how many people you can share with.
Normally most people would listen but if you start to talk about things going through walls then most people wouldn’t consider twice that you’re off a little. So the best way is to just keep those ideas within the community and try to establish communication for help.
Nevertheless, I understand you, it’s not easy. But if you go pass that, you’d be surprise how many people you can share with.
Normally most people would listen but if you start to talk about things going through walls then most people wouldn’t consider twice that you’re off a little. So the best way is to just keep those ideas within the community and try to establish communication for help.
dontgiveuphope There is a smell when you are extreme PATMer.Average PATMers maybe they have also smell but it's rare.There are so many people which have problems with bad breath like me and I was previous on bad breath halitosis forum before I know that PATM is allergic reactions.So I was kind of halitophob before.
And what is important -people shouldn't be PATMophobs because not every person who coughs around them is due to PATM.My brother always coughs but he is a heavy smoker- he have constantly secretions from lungs and he says that he feels the cigarette smoke from lungs.It's disgusting - I am very sensitive to smells like cigarette smoke.
“ I am very sensitive to smells like cigarette smoke.”
Yeah, me too. I find sometimes I can’t breathe when someone is smoking.
Yeah, me too. I find sometimes I can’t breathe when someone is smoking.
Personally feel like video testimonials just make us look like mental health patients. I do think they could connect more sufferers to one another and bring awareness to the subject. But it has to be a good, neutral video that doesn't involve too many emotions. The best we can do is to make a video talking into the camera, explaining PATM, and then cutting away to example footage of people reacting.
For example, it was mentioned on here awhile ago that there was a video on a China news channel about PATM. The way the reporters treat it, it's like they're talking about getting abducted by aliens. By the way, I read through the entirety of China's PATM forum, and they're way behind us in what they know.
MEBO needs more help, they don't have enough funding/scientists, and it could be years before they release another report. We need to get other researchers to really believe in PATM and then dedicate their time to it. That's easier said than done. Another option is for us to get the relevant degrees and take matters into our own hands.
For example, it was mentioned on here awhile ago that there was a video on a China news channel about PATM. The way the reporters treat it, it's like they're talking about getting abducted by aliens. By the way, I read through the entirety of China's PATM forum, and they're way behind us in what they know.
MEBO needs more help, they don't have enough funding/scientists, and it could be years before they release another report. We need to get other researchers to really believe in PATM and then dedicate their time to it. That's easier said than done. Another option is for us to get the relevant degrees and take matters into our own hands.
4 Comments
Yes, the video shouldnt be entirely on people talking about the PATM topic. We'll need much more to it like clips/snippets of how its affecting people. Since privacy is a matter, obviously we'll have to blur our faces so they arent visually identifiable.
There are videos on utube when people have captured footage via hidden cameras in their bags.
MEBO is doing their best but im afraid they dont know the extent of the matter since all they've discovered is the FM03 enzyme. But they do know that there are other reasons but they dont have test subjects to prove anything. They did urine analysis based on choline content for TMAU. I've fasted for over a month on a green juice diet, literally starving myself off everything but didnt help at all.
I only hope everyone could contribute in capturing any reactions they can on their cellphones. And then we can compile them into a PATM evidence videol
There are videos on utube when people have captured footage via hidden cameras in their bags.
MEBO is doing their best but im afraid they dont know the extent of the matter since all they've discovered is the FM03 enzyme. But they do know that there are other reasons but they dont have test subjects to prove anything. They did urine analysis based on choline content for TMAU. I've fasted for over a month on a green juice diet, literally starving myself off everything but didnt help at all.
I only hope everyone could contribute in capturing any reactions they can on their cellphones. And then we can compile them into a PATM evidence videol
Jon3456, please allow me to clear a few things up because I know many don’t understand how science work in the real world. In movies some tests are done within minutes but in real life it takes months to years depending on circumstances.
MeBO didn’t discover the FMO3 enzyme. The FMO3 gene was discovered a little while back by British scientists in the 1990s – co-discoverers are Prof. Elizabeth Shephard and Prof. Ian Phillips. They discovered the relationship between the FMO3 gene, FMO3 enzyme and TMA. Now there’s claim of other contributing genes.
MeBO’s current research we are interested in, is not looking at the FMO3 enzyme, but looking at different odor groups. I know PATM, TMAU2, Halitosis were among them. These were volunteers that doctors couldn’t find anything wrong with them. What MeBO scientists did was to dig deeper and naturally they’d end up at the molecular level, and this is what they’ve revealed so far.
Everything cost money, that is real the problem. For instance, if I were a PH. D scientist and wanted to identify the different kind of metabolites in my blood or urine, I’d have to take samples and send them to a lab within the State and that could take months to a year which I have no control on. If I have hundreds of samples then it could drag on much longer because the lab itself probably has samples from other scientists queuing already. The cost could be in the tens-hundreds of thousands. And that’s just one test among many. If we had 2 million dollars, they’d have an explanation in 3 months. 10-20 million, expect it in 2-3 weeks.
From what I’ve experienced dealing with these people, MeBO researchers are probably the craziest researchers in the planet as most scientists wouldn’t even think twice about ignoring or make fun of us. So I’m really grateful to what MeBO researchers have done. What we think is viable evidence is a joke to most scientists. Videos will only make them laugh because most us have no scientific background to understand what evidence really means in academia.
MeBO didn’t discover the FMO3 enzyme. The FMO3 gene was discovered a little while back by British scientists in the 1990s – co-discoverers are Prof. Elizabeth Shephard and Prof. Ian Phillips. They discovered the relationship between the FMO3 gene, FMO3 enzyme and TMA. Now there’s claim of other contributing genes.
MeBO’s current research we are interested in, is not looking at the FMO3 enzyme, but looking at different odor groups. I know PATM, TMAU2, Halitosis were among them. These were volunteers that doctors couldn’t find anything wrong with them. What MeBO scientists did was to dig deeper and naturally they’d end up at the molecular level, and this is what they’ve revealed so far.
Everything cost money, that is real the problem. For instance, if I were a PH. D scientist and wanted to identify the different kind of metabolites in my blood or urine, I’d have to take samples and send them to a lab within the State and that could take months to a year which I have no control on. If I have hundreds of samples then it could drag on much longer because the lab itself probably has samples from other scientists queuing already. The cost could be in the tens-hundreds of thousands. And that’s just one test among many. If we had 2 million dollars, they’d have an explanation in 3 months. 10-20 million, expect it in 2-3 weeks.
From what I’ve experienced dealing with these people, MeBO researchers are probably the craziest researchers in the planet as most scientists wouldn’t even think twice about ignoring or make fun of us. So I’m really grateful to what MeBO researchers have done. What we think is viable evidence is a joke to most scientists. Videos will only make them laugh because most us have no scientific background to understand what evidence really means in academia.
Everything does cost money. As much as i know that a video wont give us a solution, i still feel it would something that would help others understand. Or perhaps it could even reach the media/TV (most news agencies/tv channels wouldnt even bother) that could run an article on it. Which then could reach some medical institution "somewhere"
Not sure if you were on curezone back in the days where a user named mpdela was very vital in providing useful information regarding halitosis and BO. But then she moved away to start independent websites to research more. It was her son who had the condition. DOnt recollect very well now.
But even so, we havent reached anywhere. The link you posted earlier from utube mustve been watched by so many as it outlines her ordeal to an extent.
Then again, if no one is up for it. Pointless discussing it :)
Not sure if you were on curezone back in the days where a user named mpdela was very vital in providing useful information regarding halitosis and BO. But then she moved away to start independent websites to research more. It was her son who had the condition. DOnt recollect very well now.
But even so, we havent reached anywhere. The link you posted earlier from utube mustve been watched by so many as it outlines her ordeal to an extent.
Then again, if no one is up for it. Pointless discussing it :)
@Jon3456
Hey buddy, please don't be saddened. I think it's not such a bad idea. I have some second thoughts. Give us your ideas of how it can be done effectively... I mean a little detail to convince more members.
Hey buddy, please don't be saddened. I think it's not such a bad idea. I have some second thoughts. Give us your ideas of how it can be done effectively... I mean a little detail to convince more members.
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