What do you think of the new forums?

Discussion in 'What do you think of the new forums?' started by PHXenMaster, Jul 26, 2013.

  1. gb66

    gb66 Active Member

    I have forgotten how to use it, it's been awhile. I'll have to read up on it again. I can't remember these functions for very long. Maybe someone will see our posts and give us some advice!

    I know you can have a conversation by typing in the screen name of one or more members, up to 5 I think. Then you can all have a private conversation with each other. I have some names written down in a book of some of the others that we used to chat with.
  2. freida

    freida Active Member

    Very glad to see you again, gb! :)

    Okay, i will try to read about it, when i am up to it.
    I think it is fairly simple. It is just hard for me and you ,
    to take in and retain new info and steps, due to our conditions .

    I woulld very much like to connect with you, though.

    I hope we can do it.

    Warm wishes to you, for today, gb, and any of our friends who may read this!

    Leah Freida
  3. gb66

    gb66 Active Member

    Leah Freida, I was thinking of asking the admininistrator if we could have a place for those who are homebound and/or bedbound. It would be so much easier to go there instead of looking at so many places. I really am too ill now to do much on here.

    There are degrees of disability with ME/CFS and maybe with FM also that a lot of other illness don't deal with.

    I know, for me, the symptoms have increased so much over the years and after 35 years with both these illnesses, as well as other conditions to cope with, I am about 98% disabled. Only leave home for medical appointments and can only be on my feet for about 10 or 15 minutes at a time. I've had to use a wheelchair for the last 3 years. What do you think about having a section for homeboun/bedbound sufferers?
    Last edited: Jan 14, 2014
    Soul* likes this.
  4. freida

    freida Active Member

    Gb66,

    It sounds good to me.

    I too am very limited ,
    and it makes a lot of living, different from other people, and very isolated feelings.

    I would welcome a chance to at least try what you said.
    It would be Helpful if they would give it a try.

    It is great to see you, also.
    Thanks for thinkng of an idea and for taking some actions on it. gb.
    A warm hello to you, today!

    Leah
  5. TigerLilea

    TigerLilea Member

    Freida and gb66 - All you have to do to see new messages is click onto "What's New" near the top of the screen underneath the banner and the green line that says "Forums Home" "Forums" and "Members". This new forum format is much better as all of the groups are together in one area, whereas before you had to leave one group to see messages in another group. Now all of the new messages from all of the groups are in one area and you can just click from one to the next. :)
  6. freida

    freida Active Member

    Tigerlilea,
    Thanks for that tip.
    It does help some.

    :)
    Leah
  7. gb66

    gb66 Active Member

    Leah, I sent two posts to the administrator about having a bedbound/homebound section but haven't heard anything back as yet. I hope they got my messages. I think I did it right.

    I noticed you mentioned post polio syndrome or post viral syndrome in one of your other responses. Do you ever wonder if this illness, CFS, is related in any way to some form of polio? My symptoms are so severe, much more so than a lot of folks on this board and it seems from reading your posts , that you are very ill also.

    I know it's hard to measure, but a lot of people do have more energy and are able to do a lot more than others on here. I was able to do a lot in the beginning even though I knew I was ill with something very strange. I did work part-time and went to college part-time for the first 7 years. Then, I just got sicker and sicker despite going to the doctors and doing my best to stay active.

    It was never about giving up or being depressed, I had a lot of things I wanted to do. I just continued to go downhill physically no matter what i did. Was this your experience? It started for me in 1978 with a viral like illness that was about 10 times worse than the mono I'd had as a teenager. I haven't had a well day since that time.
  8. freida

    freida Active Member

    Hello, dear gb66,
    It always feels good for me to see you.

    I have difficulties with this board, but i am trying to use it.
    Otherwise, i am so isolated,
    and feeling disconnected from all humans and from society.
    Some results of extreme limited life, disabilities. and homebound,
    with limited abilities and activities. even at home and modified greatly.

    I thank you for writing the admin with that idea,
    And for posting once in a while.
    It means a lot to me, to see you on any thread.
    It really does.
    I am glad to see you continuing to try to post, sometimes.

    Me too, i wanted to do so many more things with my life, but couldnt.
    I was Stopped in my tracks, around 40yrs old, about 20 yrs ago, now. I have tried so many things but have gradually worsened anyway, in spite of all my attempts to go on or to recover or improve.
    Yes, i am a lot more limited than most people on the boards seem to Be.

    There were some well documented , non-paralytic polio viruses
    that some of us may have had.
    They may have just seemed like ordinary illnesses to our parents at the time, or we had parents who did not have us checked by drs.

    Even though i had the polio vaccine in elementary school, when it was first given on mass,
    i could have had one of those actual viruses, beforehand, when i was younger than that.
    So it is useless to test for the antibodies. I have those either way.
    Like some known polio survivors who regained function, the second muscles may not last a lifetime.
    They can wear out.....have you read about post polio syndrome, that many get in mid- life?.
    I cannot rule it out completely.

    Post viral syndrome, too, seems possible too.
    I got sick with flu or something, and never recovered.
    Yes, much worse than some shorter previous bouts of something, including likely mono,
    Again, i was rarely taken to dr.

    Though, current research into damage to dna expression by cfids researchers seems most plausible to me.

    Does any of this sound like you?
    Last edited: Jan 15, 2014
  9. HornPlayer

    HornPlayer Member

    I don't like the new forum. I used to come to this forum daily. I rarely come now. I feel like a good resource is now lost to me.
  10. jaminhealth

    jaminhealth Well-Known Member


    HornPlayer, I'm not wild about this new forum, but obviously I'm ok enough with it as I post as much help as I can when I see something that I can add ...and I do enjoy posting other interesting topics, I think, in my opinion anyway....I've been here since late 2006 and don't recall seeing you here in all those years.....

    Why not stick around and post something from time to time....plus there are years of archieves here from many posts over many years......jam