WHAT HAPPENED TO OUR FORUM!!!!???? We have been pushed to the side again.

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by patcfs, Oct 7, 2015.

  1. patcfs

    patcfs Member

    What happened? I come here and see that everything is gone! Fibromyalgia seems to have a lot of posts and attention, as it often gets in our society. But, ME/CFS has nearly NOTHING!!? WHY???
    bretzie likes this.
  2. JKN913

    JKN913 Member

    Hi patcfs,

    I know how you feel. I check in on a couple different forums and the FM gets much more traffic than the CFS/ME. It is frustrating for me too as much of what is debilitating for me (severe flu-like symptoms and post exhertional malaise) isn't what seems to be bad for them. I can identify with their pain, although I think theirs is much worse than mine. It would be nice if more cfs/me people would chat.

    I notice that these posts get read, but no body really comments much.
    bretzie, patcfs and bct like this.
  3. jkennedy

    jkennedy Member

    The Phoenix Rising site is a great source of info on ME/CFS. It's very active.
    bretzie, patcfs, inprog and 1 other person like this.
  4. QuayMan

    QuayMan Member

    I'
    The set-up is a bit frustrating: you can't post any message with links till you have five posts and one or more likes. The sorts of posts I tend to make include links. Understandable on one level in terms of stopping spammers but it can put people off.
    rizzajo and patcfs like this.
  5. Soul*

    Soul* Well-Known Member

    Pat I think they divided it up per request since advise given for fybro often doesn't apply to M.E. and the other way around.
    Which is actually a good thing but he only thing they didn't do is actually recategorize the messages to the right forums so all old M.E. posts are still on the fybro forum too.
    You can let them know if a post is on the wrong forum but it would make more sense if all the posts would also be on the M.E. forum (too) so it doesn't look empty like you said if they don't have the ability to sort it out. That way all our sharing doesn't go to waist on the M.E. side.
    patcfs and bct like this.
  6. inprog

    inprog Member

    Yes, a lot of people got "set down" for it and so after awhile they move on. What we feel might be abusive is not abusive and just makes sense for more normal feeling people. It takes a lot of energy to deal with something that seems to be an uphill struggle and negative and it seems uphill because of our condition. Others without CFS take it in stride, I imagine. I have a little sign on my wall to remind me. "If it's not Heavenly, just let it be."
    bretzie likes this.
  7. patcfs

    patcfs Member

    The biggest problem is actually that 99% of the ME/CFS questions and answers are now dumped into the FIBRO section! ...When it was together, it was no problem, because there were so many overlapping symptoms overall. To separate by dumping 99% into Fibro and then leaving ME/CFS alone in the cold is very very very damaging and hurtful! ...And if it was going to just be too difficult to hand-pick the differentiations between ME/CFS and Fibro, then they should have left it as-is, or they should have left everything as-is from a certain time-point, then started new posts under the new forums. ----Now, all of the past ME/CFS posts are dumped into the Fibro forum, and we are left to start over from the bottom again!

    It angers and hurts me because I have been loyal to this forum, and now I feel very very shut-out. And I know that many many others feel the same way as well! ......It is true, lots of people look at this and agree, but we need more comments in order for them to know how it has hurt us!

    Thank you all for commenting and starting a very important discussion on this!!
    bretzie, Waynesrhythm and bct like this.
  8. JAM338

    JAM338 Member

    It has been quite awhile since I checked in here. I was stunned to find the CFS/ME has been pushed to the side....AGAIN. While there are distinctions between FM and CFS/ME, many people have BOTH, which was the benefit of the boards being integrated. Separating them makes no sense and sadly renders this board rather useless. For those looking for CFS/ME information, a much better resource is either Phoenix Rising or Cort Johnson's new board. When I first joined ProHealth about 2006 (ish) this was an astounding board with some of the best advie and participation. Every time ProHealth has subsequently changed the board it has been less useful. That resulted in the establishment of Phoenix Rising Board, and many of the participants on ProHealth left in droves to Phoenix Rising. ProHealth seems to be wanting a Fibromyalgia. What is odd is that I saw on the FM board a post regarding Jose Montoya MD, Infectious Diseases at Stanford. Dr Montoya does NOT work with FM. He is Director of Stanford's CFS/ME Clinic which is part of their Infectious Diseases Dept. Dr Montoya is my doctor.
    Waynesrhythm and bct like this.
  9. tracygirl10

    tracygirl10 Member

    Well I just joined here. Can we start it up again? Would really like to talk to some others. I've had Me/ cfs for 25 years and either it's wearing on my heart last 6 months or I've got a coinfection of possible lymes? Going to demand a test. My doctor insists it can't be that. Ugh.
  10. mippyd

    mippyd Member

    @patcfs

    I see your point. I just did a forum search for 'Chronic Fatigue Syndrome' restricted to thread titles only and yes threads solely related to CFS are in the Fibromyalgia forum.

    It would be simple for a staff member to do a search like that and move all those threads to the ME/CFS forums.

    I wonder if there is a reason that this hasn't been done. :) It would make ProHealth easier to navigate for those interested in ME/CFS only.
    tooks and bct like this.
  11. rizzajo

    rizzajo Member

    Agree!
  12. cgstar4

    cgstar4 Member

    changed going to pr forum bye
  13. Mikie

    Mikie Moderator

    Hi, Kids,

    I'm sorry to see this frustration. So many of us have CFIDS/ME and FMS. I think that is why they were combined. Now, it would seem to make sense to divide these conditions. I have found that often people with CFIDS/ME are hungry to read but may lack the energy to respond. Yes, Phoenix Rising is a good site and is kind of a sister site to this one. This site has some good articles on treatment and research for CFIDS/ME. Be sure to subscribe to the e-newsletter here to receive the latest info. BTW, in addition to these illnesses, I also have Sjogren's Syndrome, an even worse fatiguing condition. Fortunately, I have gotten to a point where, most days, I can function pretty well but don't have much endurance. FMS often hitches a ride on people with other immune/autoimmune illnesses.

    Love, Mikie
  14. Mikie

    Mikie Moderator

    Dear Bev,

    I'm not sure what you mean by 'over moderaton,' but the things we look out for are spammers using this site to sell their products, people posting their e-mail addresses and those who post inappropriate language. Our members can private message one another but, for our members' safety, e-mails are not allowed in the posts which are public here.

    If you want to private message me, I'd love to hear from you.

    Love, Mikie
  15. TigerLilea

    TigerLilea Active Member

    Mikie, I think that Bev was referring to Phoenix Rising being over-moderated, not PH. :)
    BevL likes this.
  16. TigerLilea

    TigerLilea Active Member

    Unfortunately, most people left this group and went over to PR after Cort started it. Things really changed there once the group became a registered non-profit. Cort lost control of the group to the board, and it has never been the same since. I find it quite funny that the head moderator over there was banned from this group because of her posts, yet she rules over there with a very tight reign.

    This group is mostly about friendship and support, whereas PR is about research and advocacy.
    BevL likes this.
  17. Mikie

    Mikie Moderator

    Oops, Sorry,

    I did think you meant PH. I had a problem with my browser back then and couldn't post on HR. I have now been able to but, due to time and health constraints, I just haven't been able to do both websites. I do get Cort's e-mails so have been able to see the latest research and treatment news. I have great respect for what he has done. I know that PH and HR are like sister sites with cooperation between them. I would also hope our CFIDS/ME forum would be more active.

    Thank you both for your input and for straightening me out. Right now, I have body and brain fatigue as I continue to fight my kidney stone problem. I find out this afternoon whether my stones are a result of parathyroid disease. If so, I'll likely require another surgical procedure. Any prayers would be sooooo appreciated. I keep all of us in mine daily.

    Love, Mikie
  18. TigerLilea

    TigerLilea Active Member

    Mikie, I'm sorry to hear about all of your health problems lately with your kidneys. I do read the "Porch" but don't usually post on there. Sending healing prayers your way and hope that you are feeling better soon.
  19. Mikie

    Mikie Moderator

    Dear TigerLilea,

    Thank you so very much for your kindness. I appreciate it. Good news is that I don't have parathyroid disease so won't have to have surgery for that--just the procedure on the left side. Stone is 13mm. Yikes! Glad you read the Porch. I know everyone would love to hear from you there. There isn't much excitement on the Porch but we kinda like it that way.

    Thanks again.

    Love, Mikie
  20. rogitgarg4411

    rogitgarg4411 Member

    Our members can private message one another but, for our members' safety, e-mails are not allowed in the posts which are public here.