The CFIDS Association of America

Yeah for Dr. Oz! We need all the good publicity that we can get. People are very closed minded on the subject still. I run a support group and I have NO doctors to send patients to.

I know the feeling, Sherry. We had two CFS experts locally, both retired the same year, and now there is no one closer than 2 hours away. We can tell people who *not* to go to, but that doesn't help them to get better, just to not get worse from the wrong treatment.

A press release from the manufacturer of Ampligen about XMRV-related research: http://www.hemispherx.net/content/investor/default.asp?goto=652

Thank you for the information on Ampligen. I, for one, will NEVER take the drug. Dr. David Bell, the late Dr. Nelson Gantz and Dr. James Jones all told me that at least for me, Ampligen wouldn't be "a good thing". It wasn't for my two male CFS-patient friends, either. CFIDS Assoc, your info is ALWAYS solid - thank you!

Thank you for all the advice. I've wanted to get off the Amitriptyline for a long time but each time I try, I get horribly ill. Changes chemistry in the brain I guess.

Not advice, just suggestions and sharing info.....Yeah, I hear that about Amitriptyline. Good luck and happy sleep everyone!

When I took traz it knocked me out and I slept great... but then I was extremely tired, weak and brain fogged the next day. I decided that the hangover I got from traz was worse then the feeling I got if I simply didn't sleep well. Now, I the only reason I'll take traz (only a 1/4 of a 50mg tab) is if I've gone a few days without a good night's sleep and benadryl (great alternative for me) doesn't help.

Wow, I can relate to so many of you. I HATE the hangover effect of sleep meds. The next day I am week, foggy and extremely tired. But, if I don't take some sort of sleep aid, I wake up a zillion times a night. Night Sweats don't help that, either.

I agree that the lack of sleep, in the long run, is worse than the short term effect of the sleep meds. So, I try to arrange 2 days a week were I can sleep deeply using an aid, and I usually plan to be homebound the following day.

I have never tried Traz but I've been prescribed Lorazepam, Soma, Ambien and Buspar to sleep. Otherwise, the poor mans option -- some nyquil or 1/2 dose of Tylenol PM. ... Read More

I agree that you don't need full doses of any of these drugs. I find less of a hangover from Lorezapam and Buspar. Soma knocks me out for days. Also, I could never take Ambien...it made me halleucinate. Seriously, I thought they were singing showtunes on Law and Order and that there was a leprechaun in the corner of my Apartment...

Good to hear that.

So Glad to hear your grandma is doing better Casie :)

Ok, now this is interesting Jack. Brian, I had one mag shot (1 g) but didn't help at all, only made my leg hurt as well as my pocketbook. I was told I should feel an immediate effect afterwards. Since I didn't, I never got another one.

Thank you Jo; end of story for me ! ! !

Dr Ravindran of the Baranium/Georgetown study tells me that from the proteomic comparison between CFS sufferers and the healthy volunteers, they have identified specific proteins that separate the two groups.
But they still need more healthy volunteers for controls, in further studies.

Sorry I wasn't clearer in my post. Didn't mean to upset anyone! They have had many patients with CFS volunteer for the study (including myself); however, not many healthy people have volunteered for the lumbar puncture (go figure).

As Sue and Erik mentioned, they need to be able to compare results between healthy people and PWC's. Including my husband, they have had only about 15 healthy volunteers (not statistically significant).

Wow, that's actually thinking outside the box! Impressive!

Louise O'Murphy, that is a very good ideal. No one should be able to give blood with any kind of illiness. I was given blood back in 1952 when I was 13 month's old. I was very sick and my daddy was in the army, and someone gave me blood and i have been sickly ever since. But, too it could of been from being ill before that. But anyway, we should use our common sense and never give blood if we are ill from any thing.