Anyone think there are fewer answers here?

Discussion in 'Fibromyalgia Main Forum' started by lvjesus, Jan 7, 2010.

  1. lvjesus

    lvjesus Member

    Back in 2004 when I was dx'd and found this site you could post a problem or a question and have tons of answers within a short period of time. Now it seems that whenever I post a question or problem I get very few responses and/or practical help. I just wondered for those who have been around for awhile if anyone else agrees?
  2. greatgran

    greatgran Member

    I have thought the same thing but thought it was just me. Would like the board to be like it use to be, but maybe its just me..

    Good post, I think.
  3. kbak

    kbak Member

    Yep, when I joined way back when it was a much better site. Things really changed when they put up the new site. I think a lot of people left or just don't participate anymore. It's to bad because this use to be one of the best sites out there. Now, not so much.

    Take Care,
  4. slammed

    slammed Member

    There has been a lot of progress made, but i don't think there are answers to the big questions yet: what is causing my illness, and how can it be healed?

    even with xmrv news, it still isn't certain about much yet; and it probably is a subset that doesn't apply to everybody, so there will still be a lot of "unknowns" even if xmrv turns out to be a help to some(still not certain it will), and a drug is found to fight it(another "still unknown").

    so, progress. . . yes. final answers. . . not yet.

    another positive way to look at your question is, that because so many inquiries have been answered over time , there's a lot more information held by all of us . we have learned a whole lot on this site and many are using that knowledge so that not as many questions are being asked?

    but i get your point too: it does seem that participation has slowed. the people who didn't adjust to this site and dropped out, plus the start-up of the other site Phoenix Rising might have drained some from here. i wish that isn't true, because there is no reason why someone can't be active on both sites. i'm hoping it isn't a competition thing between the two, bc we are a community. we don't need division, but do need unity. i sure hope that's how it will be.

    if i can ever answer anybody's questions here, i'm going to do it. there's still plenty of caring found here. we just have less people, i think you are right.
  5. spartanjt

    spartanjt New Member


    I've been here since 2003 & there used to be many more folks with actual expertise in the various problems associated with CFS/FM. Not sure why, but seems like when the format of the board changed a while back, a lot of folks just stopped posting. Thats too bad.
    [This Message was Edited on 01/08/2010]
  6. slammed

    slammed Member

    before the Valcyte study by Montoya, there was practically nothing that anyone could look forward to as being a possible "final answer". everybody was hanging on to managing our symptoms, and there is a lot to manage = there are lots of questions. the thing to remember now is, i think nothing has really changed from that era. Valcyte and other av's , not successful . it is still very important to continue to "manage symptoms".

    until whatever the cure is for my own subset(xmrv), i need to try to stay as healthy as possible.
    until whatever the cure is for your subset, it would be wise to continue to work on staying strong as possible.

    i'm noticing a tendency in myself to back off some, bc i think "A cure is coming!" > not wise. must remind self: nothing has really changed. keep on trying to do all the right moves.

    i will try to help answer all questions i can. what more can we do?
  7. TigerLilea

    TigerLilea Active Member

    It isn't just this board, or the other CFS/FM boards that have slowed down. I have found that since the inception of Facebook, Twitter, MySpace, etc., people have gravitated away from this type of board.
  8. lvjesus

    lvjesus Member

    I was just curious. Of course I am glad that it was like it was when I found it because it helped me more than anything else at the time. I think the Facebook/Twitter comment was a good observation and might be the explanation, or part of it too, but I think the main killer was when the site changed. It does not seem the same to me since and I really don't want to go to another site. I am a creature of habit if there ever was one, so it is not like me to join another site although sometimes I read on some if they come up in a google search or whatever.

    It seems things are not going back the way they were but then there are still a lot of good things here. I have bought some products that have really helped me and been able to tell others about those and others I am trying, so that is good. It is just hard when you really need some advice not to really get much like you used to.

    Thanks again everyone and God Bless
  9. hensue

    hensue New Member

    I had been going over to phoenix rising and no offense Cort. The new site sucks. I dont like it.
    I do not really know why? A lot of hard work went in to it.
    So it must be about change. We just do not like it.

    That is weird I felt like today I had to get back here where I belong.
    Even though Cort's site is very informative and very intelligent people on it.
    No offense Cort.

  10. gapsych

    gapsych New Member

    I like this new format except for one thing. You do not have to sign in to read replies. Because of this it is more time consuming, at least with our "DD time zone" and sensory overload. I find that sometimes I will just read as the effort to log in may seem daunting. If we only have to log in once it makes things easier. Boy that shows how debilitated we can be at times.

    Privacy is also an issue. When the format changed, I deleted my personal history. Sometimes it can be an incredibly small world. I probably should have changed my board name but did not.

    PH worked hard and diligently to make the new sight user friendly and they were very open to suggestions, but no board will please everyone.

    When the board was more active a post would be written and in a couple of hours might be on the second page. People would miss out on information.

    So sometimes it is just six of one or a half a dozen of the other. :D

    Take care.


    [This Message was Edited on 01/08/2010]
  11. kat0465

    kat0465 New Member

    i have been here since 2002, and it is quite different.
    People aent as friendly, but then theres a lot of new people who don't know each other.i guess thats part of it.

    the other thing is i think we are all just so tired, and get tired of being sick! it is all consuming, sometimes i know i just have to back off for a little while & try & forget the Horror of the disease.

    it's also hard to make friends, even if were all going thru the same thing.i still hang in & keep in touch( or try to)
    so your not alone in your thinking.
  12. healingnaturally

    healingnaturally New Member

    for the better again. I used to come here a lot and just today came back to see what is happening here.......there seems to be a lot, at least a lot of very intense information.
    I feel I am on to new things to try, but time will either prove me right or wrong, but for the moment I am excited about the possibilities......which lie in "nutritional balancing" and PEMF treatments.
    God bless,
  13. kerrilyn

    kerrilyn Member

    I joined in 2003 (2 yrs after I was diagnosed) and learned so much info and support from this board. It was mind-boggling how many truly brilliant people were here and giving such interesting info. I tried to take it all in, research/read constantly and process about 1/2 of what I read. LOL

    I disappeared for a couple years and did my own thing, working on getting better. I just came back recently and I could be wrong, but I get the impression there was drama on the board that I missed. The board has changed, not just in appearance and the addition of different categories, but a lot of the names who were wealths of knowledge are now gone. Whatever the reason, it's a shame many of them are gone.

    I came back around the time of the XMRV discovery, an exciting time to reappear and learn again. And I've been interested in the LDN information and things I've not heard of before, so there are still useful nuggets of info to be found here.
    [This Message was Edited on 01/09/2010]
    [This Message was Edited on 01/09/2010]
  14. munch1958

    munch1958 Member

    I agree -- this board is not what it used to be. I used to spend hours here but not anymore.
    I can personally think of about 45+ people that were kicked off this board (or left voluntarily) not that long ago because they saw Lyme being at the root of their illness.

    When those people found that they could get much better with treatment of underlying bacterial, fungal and viral infections, correcting hormone deficiencies, methylation problems, thick sticky blood problems and multiple vitamin deficiencies they took their knowledge elsewhere. Most of the old gang can be found on Lymenet and Facebook.

    That was and continues to be the "big drama" here. Any post not specifically aimed towards CFS and FM gets moved over to the Lyme disease board because a certain set of people complain. That means that most continue to try ineffective therapies and continue to spin their wheels trying to prove that "CFS and FM" are "real conditions" and not manifestations of a Lyme infection.

    Lida Mattman found cell wall deficient borrelia in 93.3% of the samples she tested from CFS patients and close 100% of those with FM tested positive for borrelia:

    When those people were forced to leave for "violating the rules" and many were provoked into that because of a difference in philosophy, we lost a valuable resource mainly people who had been there and done that and posted all about their discoveries and experiences along the way.
  15. gapsych

    gapsych New Member

    I would hate for people to think that PH kicks people off the board arbitrarily.

    If someone is kicked off the board it is because they were inappropriate. If someone is "provoked" to be inappropriate just because of a difference in philosophy, that shows lack of self control. It is up to the person who is posting to behave reasonably and take responsibility for his/her behavior.


    [This Message was Edited on 01/09/2010]
  16. quanked

    quanked Member

    I do not come here to find the grand answers--I knew when I found this site that there were none. I think your question does not refer to the grand answers. I found support and answers to questions about supplements/vitamins/drugs/etc. Lots of information about lots of things. I am amazed at how slow the board moves now. A post an hour and sometimes only every few hours.

    It has become somewhat unfriendly at times. There has been some "drama". We did lose a lot of people when PH changed the site. I think there was a kind of chat room for one of the categories that I can no longer find. It moved way to fast for me. My neurons do not fire that fast anymore. But it was very different than the posting board.

    I have noticed when someone responds to a very old thread I see lots of names that use to be very active here. I forgot about them and how much I liked some of the posters. I understand why some of them left. I found it hard to make the adjustment because of my dd. It is now very stressful when things in my environment change. I stuck with the board and came accustom to this new site and now I cannot recall much about the old site. I guess one plus to the horrific memory poblems I have is I forget not only the good but the bad also : ) I can tolerate watching tv shows over and over because I forget so much between one airing to the next.

    I am finding this site kind of frustrating these days. Maybe I need a break or maybe I should just check in less frequently because there is so little movement.

    I have vistited the phoenix rising site but I do not get it. It seems more informational and the discussions presuppose that the reader already knows a great deal and has a grasp of certain concepts--I do not see the support. I find it confusing and overwhelming. If I could grasp the theories and technical medical jargon then I would not be utilizing these sites as frequently as I do.

    I have ideas about some of the needs of some of us here and how they might be adressed but in the end I am capable of following through with so little that I just don't post them.

    I was thinking of posting my feelings about the technical information discussed here. I often feel quite overwhelmed when I read posts written for the medical practitioner. I am not from the medical field. I just cannot grasp what is being said but I know that I want to understand. Some of this stuff is so very important to me and others. I need it broken down into terms that I can understand. My cognitive functioning is not improving it is in decline.

    I am not sure how we can make this board meet more of our needs. Some are okay with how things are. I suspect that these members are higher functioning and are better able to cope with whatever happens. I use to be that way. Now I need help.

    I try to offer help when I can. But of course, I am limited. Early on, when I joined, I also would get prompt and numerous responses. Not so true anymore. There are some here who are very active and respond regularly and I appreciate this very much. But things have changed here for sure.
  17. gapsych

    gapsych New Member

    I think we all come to the board with different areas of expertise. We are all going through the same thing.

    I find it helps if I ask a person to clarify what they mean as there is so much information and sometimes it can be overwhelming. Also ask for websites dealing with the same information.

    If you feel up to it, please post. Everyones' opinion is worthwhile. Sometimes just reading that someone is going through the same thing is reassuring that we are not the only ones who experiencing what we are feeling. I think we "get" each other as we often read something and can think I know exactly what the person is talking about whereas people without this DD may not.

  18. lvjesus

    lvjesus Member

    Quanked, that was sooo funny about the bad memory and being able to watch shows over and over!! LOL That's me too! I know I have seen the show before but have no idea what they outcome is! My husband will say, "you have seen this one" and I say, I know but I don't remember what happened!

    My biggest missing issue is with experiencial posts. As we all know there are a lot of weirdness that goes with FM, like the time I got glasses for my blurry vision and 2 weeks later my vision was fine. I was able to post about it and find out in very short order that others have the same problem and it is due to FM affecting the eye muscles. Or my issue with the flourescent lights at work and found out about klonopin which was like a miracle for me.

    But recently when I was concerned about mold at work, about how it might be causing some symptoms, I really did not get much back. I don't mean to sound ungrateful for replies because I am not, but the information here just in the form of people who knew you were not crazy when you had some crazy new symptom seems to be lacking now. [This Message was Edited on 01/09/2010]
  19. spacee

    spacee Member

    Seems a lot of us joined about the same time. I don't think (no expert) that a board exists that was like this one. I go to FaceBook for info (Whittenmore-Peterson Institute) and I, for now, subscribe to Again for info. And I have joined the LDN and Methy groups at Yahoo but again that isn't like this site. You get emails from people asking questions and the emails of people answering them. So, I feel like I get the latest info but not the same as the old board felt.

    I think some people found other things that were the cause of their illness and, of course, joined those groups...mold, lyme. Who wouldn't? Cheney says that it is going to be very interesting to see what co-infections exist with XMRV such as Lyme. He also says that the LLMD's tell him that Lyme wasn't seen like it is now and it all started about the time of HIV.
    Just an observation by some docs. Not trying to say "why" thus far. I am sure they must be trying to figure it out.

    With Cheney's new machines, he has been able to see that while a lot of the symptoms are alike, how we respond to treatments is different. I think we have just about all seen that here.

    So, I still come here to check in and visit on the ChitChat Board. Seems like when there is a big somehow still finds it's way here. Munch has been a great help for people to get tested for Lyme, for example.

    But in a way, it is sad that as we are getting closer to knowing much, much more...this site which was like a "home" has changed. But I keep telling myself that nothing stays the same and change is just part of life. It helps me.

    ((Hugs)) Friends,

  20. lvjesus

    lvjesus Member

    I have to say that I googled for other FM boards last night and came up with a list and registered on one and read some. I probably will check that out for awhile. I can't do too many at once. I have a myspace and facebook, but don't spend much time there.