This Board has changed

Discussion in 'Fibromyalgia Main Forum' started by BabsFl, Oct 12, 2009.

  1. BabsFl

    BabsFl New Member

    It has been awhile since last on and coming back I notice alot of changes..I am still reading post but I notice alot of them go unanswered..that used to not be..even if it was on a subject no one had answers for..people always acknowledged each other some talking to a good friend..seems so far more "technical" than like friends supporting each other like they used to..maybe I'm wrong...Ill keep reading...Always hoping for more answers..and a more pain free life :}
  2. FibroFay

    FibroFay New Member

    Good to have you here!

    It's not usually like this. The past several days the board has been crazy! The news of the retrovirus discovery has consumed the board and it's alot like a very busy highway here with everyone driving like maniacs trying to get to the answers as fast as possible:)

    I also notice we've had many new posters recently. Some seem more interested in getting information than in seeking support.

    There's still good people here. I hope you'll find good support as you get to know us.

    Take care.
  3. Shirl

    Shirl New Member

    Yes, Fay is right. All this new information that has just came out is the hot topic right now. Things will calm down soon as it usually does after something new gets a little old...

    Glad to have you back, and hope you find the support you need.

    Shalom, Shirl
  4. onset1990

    onset1990 Member

    I am new here are, coming in because of the XMRV report, and the board was abuzz with info. That's why I came. I wanted to hear what sufferers were saying about it (mainly because we know better than anyone what to think of new reports).

    But... after a day of posting and replying I realized I wasn't sure if this was a support board or more of a discussion board?

    I decided that I would hold back and watch others to see what people were using the board for. Yeah, I know, this sounds pretty neurotic, but this illness can make you neurotic!

    I did get the sense that the people here were sensitive, serious about our community (CFS sufferers) and involved. That was encouraging. Glad to be here.
  5. FibroFay

    FibroFay New Member


    You've been sick 19 yrs? It's been 14 yrs. for me. I hope we all get better soon. Maybe there will be new treatments with this new discovery. I hope.

  6. jasminetee

    jasminetee Member

    The people here have always been very supportive of me and others here. It's important to remember that many of us are suffering intensely and are completely out-of-commission much of the time and support takes energy.

    You can help make this place be more of what you envision. Be the change you want to see. :)

    [This Message was Edited on 10/12/2009]
  7. onset1990

    onset1990 Member

    I am one of the most guilty for going in and out of message boards. There are times when I am so out of it I can't think or type. I also can get very depressed and retreat from life. Then I come back. But my typing is always awful. I wish we could do away with upper case and punctuation (and spelling).
  8. jasminetee

    jasminetee Member

    you can do away with whatever conventions you need to in order to conserve your energy. we all understand and if someone doesn't then they aren't suffering like many of us are. i've enjoyed your contributions to this board and i don't think you or anyone else needs to feel any guilt at all. No guilt allowed! ;) Do what works for you.

  9. Shirl

    Shirl New Member

    Onset! you just hit a hot subject here, usually everyone here is very supportive of one another, so hang in there. The latest subject will finally get its day in the sun, and we will go back to normal!

    Again, welcome. You can try the Chit Chat board too, there are a lot of fun people there all the time.

    Shalom, Shirl
  10. skeptik2

    skeptik2 Member

    This is an unprecedented time for people with the so-called CFS and
    some FM patients, too.

    Of course we are a support board, but we have two events that are
    happening now that are historical in context:

    First, a CFS Advisory Committee
    meeting will be held Oct. 29 and 30 and we are all churning our brains
    to find a way to stop the CDC from making 'cfs' a psychosomatic
    illness based on our inability to cope with stress.

    Secondly, a retrovirus called XMRV has been discovered in 67%
    of patients from all over the country, by the Whittemore Peterson
    Institute, with help from the National Cancer Institute and the
    Cleveland Clinic. (Over 95% of the patients had the antibodies
    to this retrovirus in their blood. This is only the 3rd retrovirus ever
    discovered in humans, so it is a really big deal, ok?

    Please forgive us if we are a bit distracted from being there for
    you; I would urge you to read all you can (go slowly, there's so
    much information, and some of it is highly technical, but there
    are also posts and replies that explain things in laymen's terms,
    so it is more understandable.) If you don't understand something,
    post a question, will you?

    It's really hard to 'reach out an touch someone' when there is so
    many vital things happening that may affect the future for us all.

    Hang in there with us, we'll be sane in a few days or at least
    once the CFS meeting is over....well, then we'll be yakking about it
    for awhile.

    All you 'returners' and newbies: know we are working hard for all
    of us to someday have a proper diagnosis based on science, with
    hopefully treatments that will help us recover from these awful,
    devastating diseases.

    My best wishes to you,

  11. BabsFl

    BabsFl New Member

    Thats y I came back..This board has always been very supportive..I was hanging around to c if it had changed or if I was just missing something...I havent been on because I had my puter stolen...again..just getting back in the swing agian...thanks again