I NEED YOUR HELP

Discussion in 'Chit Chat' started by Mikie, May 30, 2014.

  1. Mikie

    Mikie Moderator

    If you can help me, I'd really appreciate it. PH and I have noticed that a lot of people read posts but only a fraction of them respond in the threads. I'm glad we are reaching so many people but it would be so nice, and very helpful, if we could get their feedback too.

    Can anyone help us understand what causes people not to respond? I understand that some people aren't familiar with our board and how it functions. I also understand that there are private people who don't want to involve themselves in the conversations here and on our other boards. Perhaps, some people don't feel as though they belong to a group discussing something. Other than these reasons, any input y'all may have would be most helpful.

    I know myself that being able to read and post with all the wonderful members here helps me to learn and share and it's part of my social/emotional life. We need that interaction with others. So, any help you can give us will be much appreciated. Go wild and brainstorm with this one. Thanks in advance.

    Love, Mikie
  2. Soul*

    Soul* Active Member

    Mikie is this specifically about the ChitChat board or in general?

    Just thinking out loud:

    In general maybe it also could have to do with that titles and boards do not make clear what a post is about. If someone with ME starts reading a post and it turns out to be about fibro or the other way around that could be a reason not to respond.

    Then ofcourse there are the biggest amount of people who have not signed up so can read but not respond even if they wanted to. Unless they sign up ofcourse and that to many is quite a big step since there is so much unsafety on the internet as well.

    To the chit chat board in specific I can imagine that it just is to overwhelming for people to respond since you don't want to respond to just one person and not to all the others when so many have shared their story.

    Then there simply is the fact that there are many days that people may be able to read tidbits here and there but responding requires a whole different energy and input that isn't always available.

    More specific titles would help, like with this thread I noticed many people already read it but no one had replied yet. If you would have included what exactly you needed help with less people would have read it probably but more might respond since they know before opening it what it is about.

    My wild brainstorm so far :p
  3. Mikie

    Mikie Moderator

    Thanks, Soul,

    You've made so many good points. Yes, more specific titles help and mine was too vague. Still, I figure a request for help usually gets results. I believe that so many of us are simply too exhausted to reply. Reading doesn't require the NRG that responding does. So many of us have brain fog and, I know this from experience, bad brain fog makes replying almost impossible.

    I just wish more nonmembers would sign up and members would share with us. I welcome new posters. I think many may feel they have nothing to add but once they start telling their own experiences, it helps everyone.

    BTW, I started here but it applies to the whole website forums. I know that I've been so down and out recently that I haven't been on the other boards as much as usual. The pain I've had with this hip is exhausting. So, I come here where my Online Family hangs out and y'all give me comfort.

    TO ANYONE WHO IS SHY TO JUMP IN, PLEASE JUST POP IN TO SAY "HI." WE WELCOME EVERYONE HERE AND WOULD LOVE TO MEET YOU.

    Love, Mikie
  4. Darrae

    Darrae Member

    Hi Mikie,

    When I first found this site, I was tentative. The first contact I attempted to make was in General Chat. I was thinking I'd like to just chat with one person first.

    When I got no response, I was confused. I thought maybe this was a "private" site and one had to sign up and I'd get all sorts of advertisements for medicines and remedies on my page.

    A day or two later, I tried the Porchlight and was delighted to find friends there that I could relate to. I, too, am wary of "signing up" on unfamiliar sites. Some of us are just not that confident with the internet in general.

    It took me a bit go get into the "swing" of things here on the forums. Now, I'm all over the place when I'm feeling well enough to sit up and babble. LOL Hope this makes a modicum of sense.

    Hugz
    Darrae
  5. TigerLilea

    TigerLilea Member

    Hi Mikie - I'm one of those people who don't post here that often anymore. Unfortunately, I think a lot of people left here and went over to Phoenix Rising which is much more research and treatment based which is what I am most interested in.

    When I'm going through periods of being very exhausted due to CFS I find that I can't think of anything to post even if a post is relevant to me. Other times I come here and the only posts are games and chit chat and have nothing to do with CFS or FM. As I'm trying to spend less time on the computer these days I usually just skip past those posts now. I also find that I read some of the posts and wonder what I have in common with some members. I have days I can barely function and I'm reading about their busy, very filled days, and wonder how they can manage what they do if they have a diagnosis of CFS and/or FM.

    I think Facebook is also a huge reason why people no longer participate on the forums. It seems since FB came along, forum participation has really dropped and not just in the CFS/FM community, but across the board. If you check out about.com, Delphi, and Yahoo, forum participation is very low.
    :(
  6. Mikie

    Mikie Moderator

    Thank you both for your responses. I really appreciate the feedback.

    Dar, I hope things are going better for you. Thank you for replying.

    Tiger Lilea, I like PR and get their newsletter. For a time, my computer wouldn't let me sign on. Cort tried to help but nothing would work. I haven't tried using my Firefox. Since the peptide injections have been so successful for me, I've stopped reading most of the research and treatment info. Seems that all the time, someone has "discovered" the cause of our illnesses only to decide that wasn't the cause and move on to something else. Same with treatments. I'm not sure why the peptide injections haven't caught on more but it's likely because Oxford Univ. doesn't make money off of them and keeps a pretty low profile. Also, there are only about 20 docs in the U.S. who use this treatment. I'm sure a lot of people can't afford them because ins. doesn't cover them, even though they are approved by the FDA but only if one calls them, amino acid solution injections. Even though I no longer suffer the symptoms of CFIDS/ME nor FMS, I do have other health problems but I am able to do a lot more now. Thank you for your reply too. The idea about FB is very interesting. I don't do social networking so am not on FB even though I am a member. I just keep up with my friends here. Again, thank you.

    Love, Mikie
  7. rockgor

    rockgor Active Member

    Hi Mikie

    Reminds me of Tevye in "Fiddler on the Roof". "I'll tell you the answer. I don't know."
    I know I have posted a welcome message to lots of new people over the years. In most
    cases I seldom saw more than a post of two from that person. All I can think of is
    that they didn't feel comfortable here for some reason.

    Is it too much like being a new kid at school?

    I am too old and feeble to have friends from school or work anymore. The board is my
    only social life.

    Could we ask our moderators to welcome each new person? Or have some greeters?
    The message should, I think, be individual; personal; not an automatic computer
    generated one size fits all.

    Hard to figure out. As Tevye said, "On the other hand, there is no other hand."

    Shalom
    Rock


    Well, look what I found. It's the message I typed 12 hours ago. I was the first
    responder to your post, Mikie. Looks like I never hit the "Post Reply" button.
    I suppose one reason people don't post much is that they are just not up to
    it. I get a little more feeble every day I think. Last night I left the milk out.
    Had to toss it this morning. But at least I didn't spill it so there's no need
    to cry.


    Rock
  8. jaminhealth

    jaminhealth Well-Known Member

    I probably "say" more than most here want to hear but I continue with my brain thoughts and personal opinions....from the looks of the "records" here I post more than anyone.....I don't think that "record" is necessary but it is here.

    I wanted to post to Tim (i think that's his name) about the letter to congress but my opinions are coming from long time on this earth and knowing congress battles....so I have said nothing there... jam
  9. Soul*

    Soul* Active Member

    Passes the first to post crown on to Rock ;)

    I was thinking next to everything mentioned already it might also have to do with a habit of being an onlooker instead of being looked upon.

    Like, many people watch tv, but imagine if all of sudden the people we are watching on tv would also watch us... I bet a lot less people would watch tv then. It can be comforting to read about situations that we can connect to but letting it connect to us is something else.

    I think that many of the boards have a big audience simply because people find comfort or enjoyment in reading it. Even the game boards have a lot of viewers and only a few actually respond. So I wouldn't see it as a bad or negative thing, or that something is missing, that people who view don't all respond, everyone simply picks out the things that are supportive to them like a buffet where the cook isn't a bad cook simply because you didn't put every single bit on your plate.

    Your care for everyone is much appreciated though!

    Also the Hi I'm new spammers aren't really helpful to feel safe to post. I just avoid those posts since up to now they all where Spammers trying to post malicious or commercial links.

    Maybe there could be a specific locked welcome forum/topic to welcome new members, I don't see one like that when I check the forums menu. With maybe an introduction of who the moderators are so that they know where they can get help and so they can introduce themselves without having to create their own board first. That would also partly solve the Hi I'm new spammers since they prefer to make their own topic with spam links. Actual new people with CFS/ME/FM most probably won't start with making their own topic, they just want to read and maybe post in an easy way without first having to learn the how to's of a forum.

    Another thing that stopped me from posting for a while and has changed my way of posting is the disappearing of whole threads that where full of beautiful supporting posts that where so nice to read and look back on. Though those posts are fun to make they also cost a lot of energy and when whole threads are wiped out when simply one member who started the thread leaves that is a big discouragement to post since it gets cleared so easily. And making your own thread simply to prevend your posts from being wiped out costs quite a bit of extra energy. I don't think that is a reason for new members to not post though, they most probably aren't aware of that their posts can get cleared that easily.
    Last edited: Jun 1, 2014
  10. Mikie

    Mikie Moderator

    Thanks again, all of you, for the feedback.

    I think we look at how many active members we have, and how many read the posts, as a positive. A lot of people are reading and getting info here. We just wish more would feel like joining in. It is part of our illnesses that we have to ration our NRG and reading is easier than composing. I have also noticed that people, who may have formerly been more outgoing before they became ill, feel more withdrawn after illness sets in. I find this in my social life in the hood here. I like my neighbors and have friends but don't want to go places with them except maybe for a lunch with only one or two at a time. Seems the older ones around here suddenly want to go out to noisy, smoky bars. Yikes! I already partied hearty and have no desire to do it now. There isn't enough Klonopin for me to be able to go where they like to go.

    Since coming off the prednisone, I'm feeling withdrawn and just want to stay inside and rest. I know that isn't good and I have to get out and get active again. I see the doc for my hip, which is much better, and if she gives me the OK, I think I'll return to the pool to see whether I can run in the shallow end. But, I digress...

    I think we've hit the most likely reasons people don't respond. I let PH know of this thread and am hoping it will help them. Thank you, one and all.

    Love, Mikie
  11. jaminhealth

    jaminhealth Well-Known Member

    I have to say Mikie, a lot of the older members who are gone had much more to offer and even some good debates which I'm not willing to do much anymore....I leave my info out there and it's up to others to check it out or pass it up....IN this world there are window shoppers and buyers.....I was NEVER a window shopper....when I wanted something I go for it.....

    Maybe a LOT more folks have greater social lives unlike myself....my social life is pretty narrow....but OK with what it is. jam
  12. Willow77

    Willow77 Member

    I came to the board years ago when it would move very fast. Everyone was so friendly and helpful. And then a few people were banned from the board, just disappeared and we were never told why. It seemed the board changed from a friendly helpful place to a very negative divisive place. The fights over holistic, organic, etc and western prescription based medicine became predominate.

    It just seemed that this wasn't a safe place to post anymore. I used to get panic attacks just from contemplating making a phone call, so to post something and risk getting attacked for it wasn't something I was willing to do, so I became a lurker. About that time my health took a downward turn and I was almost bedridden with pain and exhaustion. Things have improved all around the last few years so I feel physically able to socialize and have enjoyed reading the chit chat board but am not able to keep track of all the different people and goings on so feel I can't contribute anything. Not to mention my life is so small in comparison to the others that post.

    I know this is scrambled and rambling but I am to0 tired to revise it. Usually, if I want to post something, I will write, read it , it is either too negative or rambling so I delete it. That is another reason I don't post anymore. It can take an hour to write a small post and make it readable and by then I am not in the mood to share anything. When I don't feel well I am a curl in a ball in the corner and leave me alone type of person.

    So I guess it is many things that have led to not posting anymore but I still do read some.
  13. Mikie

    Mikie Moderator

    Hi, Willow,

    Thank you so very much for your helpful post. I do remember when there were some "wars" on the site and things seemed out of control. I wasn't involved as a moderator during most of it. Since that time, PH has done a lot to make this a safer place for all of us. Right now, if someone is rude or argumentative, you can click on Report and an admin person or a mod will check it out. Please, everyone, use this feature when you encounter spam or bad behavior. It really helps us.

    Willow, I'm glad you are doing better. I am too but other conditions can make me exhausted and, like you, I want to curl up too and be let alone. I am so glad you shared this with us. The more feedback we get, the better PH can make our experience here. A lot of people have read this but, true to form, few have replied. You did and I thank you so very much.

    Love, Mikie
  14. joanierav

    joanierav Member

    mikie you made me laugh so hard. talking about your friends wanting to go to the bars , now in their later years. i live in an "adult community" and its amazing how many senior woman ask me to go to the bars with them. my reply is always . "no thanks, it would be just my luck , that i would end up sitting next to one of my sons friends". that usually ends the conversation. im so glad, im done with the bar scene, ( altho it was fun while it lasted, i loved to dance) even if i was well , im not interested.

    i must admit mikie, in answer to your question, i hesitate to reply many times because im afraid im going to give wrong info. , or sound stupid. most times my thoughts become jumbled and then i cant seem to find the right words, and so i give up and delete it all. believe me this infuriates me. i would love not to have this problem.

    i have been with prohealth for yrs , through thick and thin. even when my good friends were banned, and all the arguing and criticizing were going on. you cant get rid of me that easy. i have always loved it here.

    you have poked me now , and i will try to put more effort into answering posts.

    also i am not computer savvy at all, i have written to the moderators asking how to post a question, and never gotten an answer. i knew how to do it on the old board but this one i cant seem to get the hang of.

    love, joanierav
    rockgor likes this.
  15. Mikie

    Mikie Moderator

    Hi, Joanie, now it's my turn to laugh about running into one of your son's friends.

    I thank you so very much for responding. You are not alone in having difficulty posting. I will often start a sentence only to have a word leave my pea brain blank. I usually try to find a way around it and, when I stop trying to bring up the word, it comes to mind. So many here have said they have problems posting either because of exhaustion, cognitive problems, or technical problems with the site. One thing we are very careful of here is not to let misspellings nor mistakes matter to anyone. However someone can get his or her ideas across is good enough. Most of the time, we know what was intended.

    Sorry if I "poked" you (laughing again :) but if it means we see more of you, I'm glad. I haven't been spending much time on our other boards and I really need to get back to the CFIDS/ME board. I've just been too exhausted to do much more than come here while I've been in pain and on steroids. When I have been there, there has been no arguing nor rudeness. Once in a while, we get something going on on one of the other boards but someone will flag the post by clicking on Report and I'll check it out. Most of the time, things are peaceful. If not, I want to know. Clicking on Report keeps the person who reports the problem anonymous.

    Joanie, again, thank you and I'm so glad to see you back.

    Love, Mikie
  16. Goatwoman

    Goatwoman Member

    Hi, Mikie--I still come as a lurker, and enjoy the porchlight posts. I think that people are still getting a lot of help from this board, even though they may not post.

    I'm rather nervous posting online. I'm doing much better, and enjoying retirement.

    Wishing you the best--

    Ellie
  17. Mikie

    Mikie Moderator

    Hi, Ellie,

    I'm so glad to hear from you and know you, at least, enjoy reading here. I am thrilled that you are better. Please know that anytime you want to post on the Porch, everyone there would love it.

    Love, Mikie
  18. What makes a forum successful or less so is really arcane knowledge. I don't know, most people don't either. What is necessary is a core group of active, engaging, and kind members that can ease new people into the culture. Then, of course, you need to advertise - I'm serious. The days when you could just make a site and wait for people to come along are long gone. The visual presentation is important as well - I prefer the simple forums with static pages, because that's what I'm used to. It seems that some of the most active and popular forums on the net are like this... Good luck!
  19. Mikie

    Mikie Moderator

    Emma, thanks for posting your response. This is the largest forum on CFIDS/ME and FMS and widely read. We just wish more people would post. ProHealth provides this website with a generous portion of the revenues from sales of its products. I've been using their products and have found them to be of the highest quality and very fairly priced; many are bargains. ProHealth is a sponsor for the other active, and more technical, research-oriented, website on our illnesses. PH also advertises on other websites too. They have an e-newsletter and a library here with some of the best articles by many of the leading researchers in our area of need. You can sign up to receive a catalog of products and the newsletter too on the Home Page. I hope you find as much good info and support as I have over the last 14 yrs.

    Love, Mikie