MY WASHINGTON DC TESTIMONY ON MAY10,2011

[Kathi]

Kathleen Varacallo Manganaro
This is the link to my CFS Advisory Committee speech on May10th in Washington, DC at the Health and Human Services Building.
http://www.youtube.com/watch?v=TkUVlQNQGB0&feature=channel_video_title

 

[pamb]

Thank you Kathleen, for speaking up so eloquently.

 

[Kathi]

If I can do anything so someone else doesn't experience what I went through and am going through now, it needs to be done... There is no excuse for what happened to me and it could have been prevented. Hopefully it will save someone ... somewhere.... before it is too late... We all have to do what we can to get the word out. This illness is insidious and really a living death.

Thanks PAMB so much for viewing this...

 

[Nielk]

Kathi,

I'm sorry for all you had to go through.
I've heard from many patients that they feel they got sick from mold and mold avoidance is the only way they can start feeling better.

Thank you for going there and giving your oral speech. There is a need for them to understand that aspect and you did a great job explaining it to them.

 

[Kathi]

NIELK, sometimes you have to speak up more than once for them to get the message. I will continue to do whatever I can do so there is understanding on this aspect of CFS.

Love your quote.... it sure put a smile on my face when I read it.

 

[*GG*]

Yes, thank you for your testimony, every little bit helps!!

GG

 

[Kathi]

Honestly, my impression is that we are speaking to the choir at these meetings. I think they are as helpless as we are....and their hands are tied.
I listened to the Director of Social Security about getting our CFS diagnosis into their " blue book" for adjudicators..... His response was that he has attended three other disease meetings and they wanted to get their diagnosis in the book too. Washington is not a place where action seems to happen swiftly. Perhaps the protestors that day were more successful... I am glad I went and glad to help, but gee why doesn't somebody get it yet!!