I know some of my fellow quilters suffer with this illness or know someone close to them who does. The CFIDS association of America is asking for our help with an upcoming FDA workshop. It's a five-ten minute survey and it will be a great help, here is the link...  https://www.surveymonkey.com/s/pt-focused-survey ..

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Comment by viki hagan on March 19, 2013 at 1:37pm

I totally understand.. my first diagnosis was lupus, knee pain and seeming sun allergy.. of course the fact that I come from a long line of pale redheads on my dad's side is responsible for that and I've had mild arthritis in my hands since my teens, finally starting to get worse the last few years...

Anyway, the other website I try to remember to keep updated is patientslikeme.com .. it's great, you can track your symptoms and reactions to stuff and there are lots of people there, if you feel like talking to them, with the same issues, sometimes it's nice to hear other people's coping techniques

Comment by rogue quilter Queen of the WIVSP on March 19, 2013 at 1:22pm
that has been my oppinion since i first read it. my earliest episodes seemed almost non- stop. there were good days of course, but not many. i worked long hard hours in my capacity as icu/er nurse. lot of stress. had been told after last episode of rheumatic fever that i had suffered extensive joint & cardiac damage from the disease and that i would eventually become afflicted with rheumatoid arthritis. since i started with arthritis in hands, fingers and right knee in mid teens, i assumed that w all the fevers, fatigue, all over pain, etc etc ...that i was finally ra+ . but my last internist tested me for RA & lupis every 6mo...always negative. after few years of this he and my other doc settled on cfids & endocrine disorder. it is so difficult to dx. mostly a subjective dx. no blood titers or reliable virology tests. at one time it was decided that the causative factor was the same as Gulf War Syndrome. supposedly i can go to Seattle, a 3 1/2 hr drive over the cascade mountain passes and enroll in diagnostic/testing/treatment programs. nothing available for me locally. ok...all fine and well...it is a marathon endurance thing to go and visit grd and son in portland. cannot drive it..hubby does that..because of arthritic issues. no way can i do weekly or even monthly seattle runs! so...this post of yours is sort of a wake-up notice to me. there is more on the net that there was when i first learned how to use it. i used to haunt the web, looking for forums, support, and info sites. sorta got away from it. there just wasn't enough out there. except for the lawsuits against the cdc and other poly bodies for misappropriate usage of funds designated by congress/senate for cfids research.
Comment by viki hagan on March 19, 2013 at 12:36pm

that question made me think too.. I went with 5 years but I think it was earlier than that, the cycles of fatigue were just much shorter and less frequent....I"m also glad they are using the ME, it makes our issue actually sound like an issue to be taken seriously

Comment by rogue quilter Queen of the WIVSP on March 19, 2013 at 12:03pm
thanks for the post viki. but on brain dead days like this, it will take a LOT more than few minutes. one question did make me sit up and think .. !!! .. when it asked how many years since first symptoms & ditto since dx ---- wow...never thought about it before other than in terms of forever. i will finish it later. another nap for now tho :))

oh, btw, interesting that they are using the myeloencephalopathy phrases - previously, cdc not allowed it in american articles because of fear that people would confuse the term with encephalytis. hmmmm.... need to get back to more serious internet reading. you lead - i follow

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