facebook twitter

Please Excuse Us!

We apologize for the inconvinence but the forum will be down for a few days for maintenance.

Welcome, Guest
Username: Password: Remember me
Welcome to the MAC Lung Disease forum!

Tell us and our members who you are, what you like and why you became a member of this site.

We welcome all new members and hope to see you around a lot!
  • Page:
  • 1
  • 2

TOPIC: TV story on NTM

TV story on NTM 1 year 3 months ago #28261

  • BuzzyB
  • BuzzyB's Avatar
  • OFFLINE
  • Expert Boarder
  • Posts: 136
  • Thank you received: 15
  • Karma: 1
Maybe she was the only one they had time for, interview-wise and financially.

We will have our day AND our say. Just take it one step at a time.

Buzzy B)
The administrator has disabled public write access.
The following user(s) said Thank You: lrnarug

TV story on NTM 1 year 3 months ago #28260

  • lrnarug
  • lrnarug's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 30
  • Thank you received: 5
  • Karma: 0
Absolutely agree, the more that know about MAC, the bigger chance someone will figure out the answer. We should be having an open discussion, but apparently I rubbed someone the wrong way on the Facebook Mac Pulmonary Disease when I asked why she was our spokesman and why she became so important on the Facebook MAC page. She doesn't speak for any of us, just herself. We all have different symptoms and react to the meds differently, but her opinions ran on Chicago TV and the Research company out of NY. Nevertheless, I will continue fighting the disease and get my info from the medicals, not a Facebook expert. Thanks
The administrator has disabled public write access.

TV story on NTM 1 year 3 months ago #28259

  • BuzzyB
  • BuzzyB's Avatar
  • OFFLINE
  • Expert Boarder
  • Posts: 136
  • Thank you received: 15
  • Karma: 1
When you say they locked you out, do you know how and why they did this?

It sounds like they are not open to educating themselves about something on which they have profound ignorance. :( Saying you can't avoid the bacteria in water makes no sense, since it can easily be boiled.

Well, we need you here. On the bright side, if there is such a thing, at least more people are learning about MAC.



Buzzy B)
The administrator has disabled public write access.

TV story on NTM 1 year 3 months ago #28258

  • lrnarug
  • lrnarug's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 30
  • Thank you received: 5
  • Karma: 0
This is the story with video of a woman who was interviewed about her MAC experience. It's important to introduce the public to the disease, but she became the "expert", when I questioned her on the MAC Facebook they locked me out. The company who asked for 5 people to interview flew from NY to Chicago and drove to her small farmtown in Illinois to interview her in just a matter of a couple days, paid her $200. Have not heard if they contacted anybody else, I never got a call back, but not only did she get a call back, they spent thousands to fly in and interview her. There are so many others with stories to tell, but she has become the top expert in the MAC community I guess. chicago.cbslocal.com/2012/11/11/doctors-...n-cases-on-the-rise/
The administrator has disabled public write access.

TV story on NTM 1 year 3 months ago #28257

  • BuzzyB
  • BuzzyB's Avatar
  • OFFLINE
  • Expert Boarder
  • Posts: 136
  • Thank you received: 15
  • Karma: 1
To which story do you refer and who is "she?" I don't understand this interchange at all.

Please clarify.

Buzzy B)
The administrator has disabled public write access.

TV story on NTM 1 year 3 months ago #28255

  • lrnarug
  • lrnarug's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 30
  • Thank you received: 5
  • Karma: 0
Yes, I posted that. She was interviewed for NTM, but offered nothing we don't already know. Maybe the public got something from her interview, but it helped her get another interview by the NY research company, when nobody else was, who responded to their request. They flew from NY to Chicago then drove to her Kankakee home for the interview, in a matter of a couple days. Others said they would like to be interviewed and could use the money, but wonder if anybody else was interviewed? If you were, please let us know how it went.
The administrator has disabled public write access.
  • Page:
  • 1
  • 2