How can we get this board to be more active

Discussion in 'Lyme Disease Archives' started by maps1, Oct 9, 2009.

  1. maps1

    maps1 Member

    Canlyme and lymenet are great for information but I really miss what we used to have on the CFS board. So much warmer and friendlier.

    Any ideas on how we can get that one going.

    Also was wondering how others on the "who has lyme" list are doing, would be nice to hear from some of them.

    regards
    maps
  2. Nanie46

    Nanie46 Moderator

    Hi maps,

    I wish I had the answer to this one...but I don't.

    Sorry.........

    take care,

    Nanie
  3. victoria

    victoria New Member

    I suspect it's partially because there are older/bigger sites concerning lyme... that people migrate to just simply because there's more info elsewhere.

    Add to that the fatigue/physical distress we all go thru while herxing that makes it hard to keep up at times. And other factors: ie, I've been off as an example because of moving and having problems getting an internet connection.

    all the best,
    Victoria

  4. rck213

    rck213 New Member

    Have tried to participate on other Lyme message boards and find sometimes there is more criticism than support.

    We are all different and affected differently by this disease. A few feel they have all the answers and intimate if we are not cured it is through some fault of our own, not what someone who is really trying hard to have some "quality in life" wants to hear.

    I now blog to keep friends and others who are interested updated.



  5. munch1958

    munch1958 Member

    Yes, I too miss the old days when we had many more Lyme patients posting freely over on the main board. There was a lot less censorship. There was no "big push" to have non-topic posts about Chit Chat, Parkinson's or MS moved over to other boards ever. Why was Lyme the one singled out? Hmm, it sure makes me wonder.

    As for people that don't want us to post on the main board.... I'm just not understanding their motivation. I still maintain that the root cause of CFS is Lyme and that Fibro is just a descriptive term for Lyme disease but then I'm just preaching to the choir.

    It seems like a certain few are in such deep denial because they want to see CFS/FM become a "real" diagnosis. Yes, the symptoms are REAL but the disease name is all wrong. If the wrong thing is being treated the patient never really gets better. Maybe some people want to have a hopeless mysterious illness is all I can figure?

    Another thing... The way the exclusion criteria is written for CFS and FM state that -- Once someone is diagnosed with another condition, say for example hypothyroidism, that explains the symptoms then the patient is no longer considered to have CFS according to the strict definition of the disease. To me, that says, CFS and/or FM are just temporary diagnoses or a stepping stone to a correct diagnosis.