Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 30, 2009.
i think many people have gone to the Pheonix Rising forums...
i started posting there, too.
I think between the change in the look and the squabbles that have gone on has led to this... just my opinion. I know there seems to be more "competition" as well.
Ladybug, I am not talking about you here but when you mentioned PR, I had to chime in. Post over there but please keep posting here as you often have valuable information.
I do not mean to be disrespectful to Corts site, but MD, I don't know about the rest of the site, is offering hope to people when there is no way his treatment cured him. It is not scientifically possible and this will make people with our DD look like the crazies that some people want to believe about us.
People are desperate for a cure, I know I am, and he is just getting people's hopes up with this pseudoscience.
I do believe that while it is certainly possible he was sick, homeopathy, neural therapy, muscle testing can not cure anyone and are extreme even for people who believe in alternative medicine.
I think what is going on over there is so sad and distressing.
Now the XMRV is scientific, and time will tell what will happen in the future but at least it is science based medicine.
I belong but just read, he, he. My feelings about Dessin have nothing to do with him getting well. I am glad he is better but the rest is woo. Magical thinking.
I think the situation is going to backfire and a lot of people will end up with ruined reputations by association. I would hate to see that happen.
This is my opinion and will take responsibility for it.
[This Message was Edited on 11/30/2009]
I have enjoyed years of reading posts here but I now find the WPI Facebook page more interesting and up to date. I still check in here but matbe others have gone there to.
Just to see what they say
Me, too...I go to all the boards. It is good to get different perspectives,
I think. I like the new cfsun-tied blog, our very own Khaly's, very much!
PH has been instrumental in helping us all learn about 'CFS', and I
have learned so much here. They at least do understand the illness,
and they have always tried to offer products that help with the symptoms
while the CDC is 'diddlin and fiddlin' around, LOLl!
I think since the XMRV findings came out, a lot of people have been
either confused or scared away; this sounds like SERIOUS stuff, a
retrovirus, for heaven's sake, and there have been many here who
may not have the real 'CFS', but some other problem that needs to
be addressed. Plus, there were the ones who wanted to just deny us
our right to actually be sick, not just depressed, and the new XMRV
may have helped them some other place to vent their indignation, LOL!
The board now is discussing real issues, real science, and not
unproven, un-replicable endorsements. We are all finding our own
way to treat our symptoms, whether allopathic or homeopathic or
both, and the discussions we've had here are vital to others' well-
being because they focus on trying, and hope.
Keep up the good work, you 'oldies'; the 'newbies' need you!
ladybugmandy how are you?
Just want to say im here!!!!!!!!!!!!!!!!
I haven't been posting on CFS/FM anywhere else, though. I think ProHealth used to be one of my two favorite sites, and I would check it at least once a day. Somewhere around the spring, I started to feel like my interests were being drawn in another direction.
I've been dealing with CFS now for at least 10 years (never thought I'd say that!), and FM for about half, but due to several different treatments, both conservative and alternative, I am doing a lot better. Crashing is still an issue -- it took a couple of days after cleaning before Thanksgiving to be 'myself' again. Dealing with doctors is still an issue, etc. My normal is not the same normal as the general public. But I am doing better.
And I have to say it, I was getting tired of the squabbles here. Who posts what on which board -- I didn't care enough to wade through it anymore. I've been a member of this board since there was only one forum, and when I joined, the group had just gone through a big upheaval. This has happened several times since then.
Frankly, the things I'm using to complement the more standard treatments (and even the more standard treatments) were and would be criticized, although there would be some interested as well. But I've got non-CFS/FM things on my plate, too, and I've cut my board participation to focus on those.
So I come here to check up on the general trends and answer questions or lend support every now and then. Some of the people I used to see here on a regular basis are gone, so while I'm not an 'old timer' as much as some others, I'm definitely a senior citizen when it comes to the journey I've traveled.
But I haven't left completely just yet!
hi fibrolady...i don't remember who you are ...sorry my brain is totally shut down now. you sound very nice, though.
the pheonix rising boards seem very good and there is a lot of interest in XMRV ...but it won't let me post. it keeps asking me to log in over and over. i got really tired of it.
i should check out the WPI facebook page again; i'm sure its amazing.
i will keep posting here....i have come to like it here a lot...but i wish there was more activity.
I'm over at the Phoenix Rising forums too. There is a lot of good information there. I sometimes I'm also at the cfs-info forums. And I still scan here every couple of days.
I also try to skim the CFSFMExperimental yahoo group and CFS_Yasko yahoo group. But I hardly keep up with that.
I'm actually trying to cut back, because sitting at the computer is hard on me. But then I get lonely and need to connect in some way, so I start reading. I need to balance this better.
[This Message was Edited on 12/03/2009]
Come over to the chit chat board for a visit now and then. It's about
the only social life I have left.
im on facebook but new to it do they have a cfs board there? i do not know of other boards what are some good ones besides this one which i like.
FB would be difficult as we don't always want our identities to be known... there's always something to be considered when you use it, so a lot of pros & cons.
CFSFMExperimental yahoo group was way too much info for me to digest/keep up with, wish they would transfer to a board similar to this.
I do still enjoy chitchat here tho...
and still feel good about helping newbies here as I can. I guess I'm also considered a 'senior citizen' lol, which I will be officially soon and am already in some places...
I was over at the chit chat board last night. I could not stay long. I'll try to get there more often during the day.
not to say don't go there too, but think about it: this is where we have learned almost all that we know.
Separate names with a comma.