empty2void and Pat

Discussion in 'Chit Chat' started by boltchik, May 29, 2007.

  1. boltchik

    boltchik New Member

    Hey guys, I was just checking in on Mike's thread (on the other board) and it is deleted. Do you know what's up? I hope everything is okay. His other posts are still there. Kim :)
  2. mezombie

    mezombie Member

    Apparently the other one was pulled :(
  3. boltchik

    boltchik New Member

    I just went and read the updated thread. Thanks for getting back to me, I was worried. Kim :)
  4. boltchik

    boltchik New Member

    I am sure it was not your fault that it was deleted. Probably too many phone numbers. I wish only those posts were gone instead of the whole thread, it was very uplifting.

    It has only been one business day since you have tried to get a hold of the NP, so don't be too discouraged. You and Pat are doing a great thing. I still have some numbers, but it sounds like you have the ones you need.

    I am sure something positive will happen soon. It already has, people working together to help someone. Have a great night. Kim :)
  5. pat460

    pat460 New Member

    I've been thinking(yeah I know, dangerous). Hopefully Kelly will hear from her friend and that will work out, I know I'll add that in when I talk to The Man Upstairs tonight. But in case that doesn't work out, maybe we need a backup plan? So I was wondering if those of us that have any energy tonight or tomorrow could do some searching on the web and in your phone books for a support group or anyone who knows these illnesses and could advocate for him.

    I'm afraid that time is growing short and he is getting weaker. What happens if he gets too weak to post? See what I mean? Anyway, I have an unlimited phone plan and can call anywhere in the US without added charges. If everyone could point me in a direction, not give the number but just tell me how to find it I guess since we don't want more deletions, I'd be happy to follow through. This would be just a backup plan that we can put into play if Kelly doesn't have any luck tomorrow or Thursday maybe. If we see a post from her saying it's a no go, we immediately go into action.

    Just throwing out ideas here. What do you all think? Stupid idea?

  6. mezombie

    mezombie Member

    Pat, I think that's a good idea. I just wonder if those of us who have been following this aren't all tapped out. I know I am.

    Maybe someone could post this question about local support groups in the Tuscon, AZ area on the CFS/FM message board? That might bring in some "new" people.

    As to Mike's deleted post, I don't think it was anybody's fault or even had to do with the phone numbers. I'm concerned that it may have been considered OT by the moderators, and more suitable for the ChitChat board.

    Maybe we should ask Mike to move his thread here to make sure this doesn't happen again?
  7. pat460

    pat460 New Member

    Yes, two very good ideas. I had thought about asking him to move his thread. I'm kind of afraid to ask. He seems to trust Kelly more.

    I'll post about the support groups now.

    Thanks, Pat
  8. mezombie

    mezombie Member

    Paula Frighetti
    7133 E. 28th St.
    Tucson, AZ 85710

    She was listed as a CFS activist on a website, dated 1999.

    Who knows if she still lives there but maybe one of you can check this out and maybe find a number on people finder dot com or whatever it's called.

    I think I need to stop before I slide toward Mike's direction, healthwise...
  9. pat460

    pat460 New Member

    Thank you. You are so sweet to find that when you are so wiped out. Now rest. You've done more than your share. After everything settles down and returns to normal, we are gonna have to let Mike know about all of you behind the scenes angels he had on his side. This has been an awesome effort by a lot of people I think.

    Night, Pat
  10. boltchik

    boltchik New Member

    This website had a date on it for today. It may be helpful. Located in Tucson.

    6380 E. Tanque Verde Ste. D
    Tucson, AZ 85715

    non-profit organization
    research, education and patient advocacy for fibro and CFS

    There is a ph. number, which I will not list so it does not get deleted. But if you go to the site, you can get the number. If you have a lot of calls to make, pass this one to me, I will help you. Kim :)

    I will leave this on your other thread in case you check that one instead.
  11. findmind

    findmind New Member

    Left message on other board that asked if someone could please try to find Dr. Katrina BErne, the PWC who wrote Running on Empty books.

    I just feel she can help in some major way, she's a psychologist with CFS patients. I've met her and she's a kind and generous soul.

    She can't help if she doesn't know!

    Some one please call Phoenix info and ask for her number..she will return your calls. I used to have it 10 years ago, no longer do.


  12. budmickl

    budmickl New Member

    I just posted on the other board with this information.


    If you are having trouble locating phone numbers for any of your contacts, I have a paid subscription to a service that has detail listings. I did a search for Katrina Berne and got about 8 different numbers in AZ. If you want to use it, let's set a time to go to the chat room and I'll give you my info.

    It's 8:30 AM were I am and I have to leave in about an hour for most of the day. Hope to hear from you before I leave. If not, I'll check back in as soon as I can.

  13. pat460

    pat460 New Member

    I'm trying very hard to locate Katrina Berne, so far no success. Some help would be great! If you two can help find her I'll be glad to contact her.

    I've used the web white pages to no avail. I'll check in periodically. It's 10:07 here on the east coast.

  14. mezombie

    mezombie Member

    I found her website. Unfortunately, it only has her email address on it, no phone number.

    Maybe this will help locate her:


    P.S. I just remembered Dr. Berne is currently a CFIDS Ass'n board member. I left a message for Nova Bouknight at the CAA and hope to hear from her soon.

    [This Message was Edited on 05/30/2007]
  15. budmickl

    budmickl New Member

    can you jump to one of the chat rooms? i'll give you what i have on that doctor. i don't want to post it here.
  16. mezombie

    mezombie Member

    OK on my way
  17. budmickl

    budmickl New Member

    ARGH! Computer bleched, i'm back and going to diabetes room again. sorry!
  18. Rafiki

    Rafiki New Member

    I just found her website, too, but it's already here.

    I think it would be nearly impossible to contact her directly because she's an author. Once you get a book published, especially a popular one, the whole world beats a path to your door and you go underground to some extent.

    It's amazing that you have all managed to do what you have already done. Really makes one think that an ME crisis hotline and a central registry of resources is very much needed!

    I'm kinda lost regarding where things stand right now but I know there are some truly remarkable people on the case.

    You certainly are a force! Before this happened, did you know you were a force? Thank you all for showing us just what we are capable of.

    And, thanks to Mike for bringing out the best in everyone.

    Fingers crossed!

  19. mezombie

    mezombie Member

    Anybody capable of calling her and having a coherent conversation? I'm not, and I don't have all the info (address, tel nos, etc) I would need to relay.

    I can meet in chat and give the phone number to anyone who is up to this.

    Thanks heaps, Budmickl!
  20. pat460

    pat460 New Member

    You guys are on the ball! and I missed it? I'm really hurting today as the past couple of days has caught up with me now I guess. I had to lie down for a bit. I just made sure chat would work for me(my first time) and I'm willing to call if we can meet for the number. Hope I can keep up--I'm not a great typist.


    Just checked the other board and see you guys have it under control. Still around if you need me.
    [This Message was Edited on 05/30/2007]