First Annual PATM Conference – Next Weekend in Texas (Express Edition)?

[LaserShark8]

Hello everyone,


There is a Morgellons conference happening this weekend in Austin, TX organized by Charles Holman foundation.


They have 2000 attendees, many medical speakers.


They also started in obscurity and no one believed them, but they have had a lot of progress since 10 years ago.


We, PATM people do not have an organization and to be taken seriously we need one.


For us, a Morgellons conference could be an opportunity to meet open minded medical professionals and introduce our medical condition to them and network with them to see if there would be interest and to see whether they would want to work with us. I am sure there are many people here who would go to see a doctor in a different state if they knew they would be taken seriously.


What I want to propose is to do a first PATM conference in Austin next weekend, as there are many people with PATM in Texas and this Morgellons conference is happening.


We meet and brainstorm and create an outline of our goals and put a foundation to some sort of official PATM organization.


Either before or after this we send a scout to Morgellons conference to network with doctors and maybe get some tips from organizers.


Maybe if the Morgellons foundation would be willing we could also do a quick presentation on PATM to those who are interested?


I know this is a short notice, but I did not see this until a few days ago.


It is happening Saturday Apr 29 to Monday May 1. Here is the official page:

http://www.thecehf.org/morgellons-2017-conference/

If it does not work out then maybe we could organize something at some later time.


I am not from Texas, but if there will be reasonable interest I can travel, teleconferencing is also an option.


So especially if you’re in Texas or are willing to travel for such a meet up - maybe we could make something like this happen next weekend and send a person or two to the Morgellons Conference?

[throwaya]

Hi LazerShark,

I agree with pretty well everything you said. I think it would be great to have some people represent the PATM community at the morgellons conference. The doctors  at the conference will be more open minded and hopefully we could get their opinion on parallels between the two diseases. If all goes well we could see if they'd be open to do some research in return for financial compensation.

Also I support the idea that we need to start pushing this disease forward like the morgellons community did. It's a long path to gain medical attention, but a foundation is definitely where it starts. I think we have the volume of people  but we need a formal foundation if we ever want MDs to take us seriously.

I'd love to fly down but I can't due to personal obligations. Hopefully you get some buy in from some PATM suffers in the region.

All the best

[Tang82]

I need to see a PATM specialist that deals with morgellons. I'm positive morgellons definitely has something to do with PATM.

[dontgiveuphope]

With all the morgellons suffers scratching and everything it's more like a toxin overload. If you've got no bad tooth fillings, chances are it's the same gut permeability problem with PATM that allow toxins to leak into bloodstream. We need to heal the gut by replacing all bad microbes (produce bad toxins) with good ones. There's no better way but FMT.

[dontgiveuphope]

Pick a good healthy donor and do it 10 times at least, straight in a row. Doctor will give you a diet for about 2-4 weeks to follow.

[dontgiveuphope]

As a matter of fact I haven't done it but that's my destiny. A doctor has confirmed that TMAU2 patient was healed by this but wasn't sure of the long term effect given the patients carried on with their lives and never reported back. MeBO clinical trial showed there's no real difference between PATM and TMAU2 at least in this preliminary phase of the report so chances are, whatever heals TMAU2 will heal PATM too. If morgellons are of gut permeability causing toxin overload then it should work for morgellons as well.

[LaserShark8]

Hello everyone,

Just want to let everybody know that this is, obviously, not happening.

I expected this to be a most likely outcome, after all one week notice is nothing for most of us.

My biggest expectation was for Texans to sign up and I thought if there would be at least 3-5 people I would attend as well. This was a good try anyhow.

Thank you JoelAnon, da16424 and Nursmind and anyone else following this thread for your support.

I was thinking about going to Morgellons conference by myself, but since there were no other PATM attendees, I decided against that.  I live far, the outcome of that would be questionable and for now I have other ways to invest my time and money towards a possible solution to PATM. At the same time I still think it would be good to start thinking about our problem in a more organized manner, the success in solving this mystery would be accelerated with combing our mental, time and financial resources. It is already happening to a big degree, but I think we could do better.

I read through a lot of the topics on this board and I do not recall anyone here reporting being taken seriously by their doctor.  This PATM condition is bizarre, so it is hard to blame your average physician, but this is a problem and should be our #1 priority.

Even though we did not go to the Morgellons conference - we can still try and reach out to Morgellons-minded doctors and if we do it as a group our chances should be better.

Financial incentives work too  -  we could create a financial pool to be used to pay Morgellons or Mold-literate doctors (whom we would choose as a group), to initiate a proper doctor-patient conversation to make them start describing our condition and symptoms.  If we get a group of doctors to take us seriously it would be a BIG step to further the research into PATM.  
This would also allow us (at least those who live in North America, or those willing to travel) to actually go and talk to some of these professionals about PATM without expecting a psychiatrist referral on our way out.

I might start a separate topic for this repeating everything that I’ve mentioned above, but, for now, if you have been following this thread – please reply below if you support starting some sort of PATM organization and are ready to invest some of your time into developing this idea.

Thanks,
LaserShark8

[Nusmind]

A very good idea. It's time to unite the community forum visitors PATM. Unfortunately, I live far away, and I have no money to come.

But I believe that the community PATM will conduct conference calls at least once a year. At least small groups who lives nearby.
I hope that we will find doctors who are more open to the perception and study of PATM.

If we typed a large group from this forum, then doctors will be more likely to make a correct diagnosis of each and to choose the appropriate course of treatment. The ratio of doctors to a large group is a little different than one visitor.



Очень хорошая идея. Пора объединять сообщество посетителей форума PATM. К сожалению, я живу далеко, и у меня нет денег, чтобы приехать.

Но я верю, что сообщество PATM будет проводить конференции хотя бы раз в год. Хотя бы небольшими группами, кто живет рядом.
Надеюсь, что мы найдем врачей, которые будут более открытыми к восприятию и исследованию PATM.

Если наберется большая группа с данного форума, то у врачей будет больше шансов поставить правильный диагноз каждому и подобрать соответствующий курс лечения. Отношение врачей к большой группе будет немного другой, чем к одному посетителю.

[LaserShark8]

Thanks for the support guys, would be good to find someone from Austin, or at least close enough in TX probably easier for them to travel than anyone else.


Noone else wants to spend a weekend in Austin? Or if you live there give me a tour of the city? We can make everyone sneeze at some decent steak house! :)

[da16424]

If you decide to go, keep us updated. I don't live anywhere near Texas and I'm preoccupied with finals, but I hope that someday I we have an in-person meetup for people with this.