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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Cheers,streamlined and stopwatchy
Thanks once more to Cort, and all of you who provide such great information. I too can't believe all the good stuff coming out of NV and UT! Who would have thought. I had expected Dartmouth, Duke...but good ole' UT and NV? Glad I have a daughter in SLC if we are ever able to get treated at U of UT.
Meg,
Please , a lot of smart people come here to ski and then figure out how to stick around and play in the mountains and the desert. Ski one day (30 minutes from my old office) and three to six hours later your in one of at least nine National Parks and several (I've stopped counting) National Monuments. Half the people I know here came to ski and never left. I used to live in Palo Alto. It was faster to fly to Utah (stay with friends) and drive to a resort than it was to drive to the Sierras (much cheaper for multi-day trips and the powder days in the Rockies are to die for).
View attachment 1829
I've attached an image of the view from the trail just above my neighborhood. This was the view on my regular dog walks.
I better stop now or someone out there is going to figure out why I get so much out of sitting on the couch and complaining that I feel like hell.
<snip>The patients from the first study have all gotten their results - it would be nice of some of them checked in.
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You really don't want to know that the people performing testing may have nothing more than a high school diploma and OJT (on the job training).
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The tech performing your lab work may have no college background and may not catch something extremely significant in your blood work due to pure ignorance. Due to cost cutting measures, some hospitals will take whoever they can get to perform lab work.
Thanks for reporting back about this CBS.
According to the CAA research update page, the Lights included a multiple sclerosis group in their exercise study:
It'll be interesting to see if any of the multiple sclerosis or healthy patients tested positive to XMRV. It would be fascinating if it was only the ME/CFS patients with that clearly abnormal response to exercise who tested positive. That sort of correlation would be really significant I think.
If anyone tested positive that is! Trying not to count my chickens before we get the published results...
One good way to start gettting answers is to search the the Phoenix forums. Here's how
It takes a little getting used to, but it works OK once you're clued up with help of the above reference. It also helps others not to have to write out the same story twice.
Regards,
Maarten.