Yesterday Russian PATMer wrote to me. Here is his story.
Today I rode in the car with one person on a single object outside of the city. The duration of the trip is half an hour approximately. I saw him for the first time. The heat outside is about 40. Windows closed and air conditioning running in the car. The driver said that he is allergic to ragweed. He said he was saved only in the car... I immediately swallowed hard, anticipating myself position... It was nice and fresh the first 10 minutes. I even forgot about PATM. The guy was strong for 10 minutes. And miracles began then. He began to rub his nose. I even began to fear that he will forget about the wheel. He sneezed 3 times in a row when we drove up to the object. We got out of the car. And he is running snot... We were talking on the way to the object. When we went back he was gloomy and silent. He sucked snot all the time...
Scientific discoveries are made at such observations in life.
This is our chance. We know now how we can prove that people are allergic to us.
We will invite people with allergies to participate in the experiment.
They will not react to ordinary people. But they will have an allergic reaction to PATMer.
This is good evidence allergy people on PATMer.
We can hold a conference with PATMers. At the conference to conduct experiments in the car. We can test whether allergic people on PATMer.
We need to find allergy sufferers to experiment.
We can measure the distance at which the allergic person starts to react.
I got a job in one office. The girl worked in the office with me. She was allergic to fish. Even the smell of fish. Only marine fish. She started to cough a lot every day. And the skin became red.
To start any such organization we need people to actually commit their interest in it even if anonymously for now.
It seems like we have people wanting for the problem to be solved, but not that many want to participate directly, which is not going to work for creating a patient lobbying or research organization. I don’t think anyone is going to do it for us.
Some time ago I was looking for partners to go to Morgellons conference with - that was a very short notice, but if I remember correctly I got a whole two replies on that thread. And I was not just asking for someone to go to that conference with me - I was also asking for people to express their general interested in such things/events/organization. So yeah - that’s the way to go, especially when we have 60 people participate in the walls/phone poll!
To start looking for funding we need to figure out what we need that funding for and to figure out that we need an organization of at least I don’t know – 5-10 people, willing to commit some time to this. That’s how these things start, that’s how every other patient organization started I bet.
I therefore propose to create an organization. So it's official. We can create multiple organizations in different countries. We have to think how best to do it legally. To make a website with a forum for our organization. A multilingual website is good. I like the official community of trimethylaminuria. But not comfortable to chat there. Russian PATM community does not want to communicate in an open forum. They're used to the private chat. But these are minor details.
Non-profit organization may receive a grant to study PATM allergies. We need doctors and scientists. First we have to do everything ourselves. First we have to prove that the phenomenon PATM Allergy exists. Only then we can get grants, to set up a laboratory and start researching. It is a long process, but we need him to start. To register the organization. To make a website with a forum. To collect patients. To prove that there is a phenomenon PATM allergies. Find doctors and scientists. To get grants. To create the lab. Only then a scientific study will start this strange phenomenon PATM allergies. Eyes are afraid, hands do. Person going will master the road.
And sorry - yes, I agree with the need of a non-for-profit, let's just see how many people seriously fully support this idea this time around, maybe we just need to keep this thread afloat so more people see it in the next few months or so.
Science (from Latin scientia, meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe.
Science usually describes the effort to understand how the universe works through the scientific method, with observable evidence as the basis of that understanding; a way of understanding the world through thought and experimentation.
From Wikipedia, the free encyclopedia.
Science begins and ends in the laboratory. Tail of science stretches from laboratory experiments to theoretical interpretations of this experience. Life is broader than science and lab. Science still does not know the phenomenon PATM allergies. But while we notice a strange phenomenon. We need to put this strange phenomenon in the lab.
Random shooting in a taxi is a good idea. You can do the shooting and in other areas. For example in cinemas. But we have ultimate goal - to learn how to replicate the experiment any day. The problem of the experiment in the laboratory - not all people are coughing and not always. But there is an assumption that people with allergies react to PATM person at every meeting through minutes or hours. Other people can not react at every meeting and not immediately. It may depend on the immune system or other parameter.
To check allergy sufferers, stay close to them, but not hurt for a long time. If this is confirmed, it will be possible to prove in the lab.
But we still need to describe what the phenomenon PATM allergies. Description, properties, symptoms and complaints of patients, medical tests, statistics, etc. For this we need the patients themselves. You can certainly first conduct the experiments. But we still have to unite in one community. Even if we have different versions of the causes of the phenomenon PATM allergies. Therefore it is necessary to cross through theirself point of view. To give chance to other versions. We don't know what it is. Allergy, infection, etc. We have a common goal. Official recognition of the existence of the phenomenon PATM allergies.
We all may have our own reason. Additional difficulties arise in this case. But I hope there will be something common.
What can we do today and tomorrow? We can start with this.
We need to see the reaction of people with allergic in the hospital. Outside the office of the allergist. If there is a lot of reactions in the corridor, it will be possible to conduct experiments in the laboratory. We can to eat more sweet for increase reactions.
These studies should be useful for allergists. New unexplored area of the allergy appears.