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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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hi all. i am new to this forum. been lurking a while. not new to cfs. had for many years, but only diagnosed a few years ago. i read and post over at prohealth.
i have been reading this thread with interest! both me and my brother (only sibling) have classic cfs. i would think wpi may want some of our blood. we have all kinds of crazy high titers to ebv and hhv6. and i have had the rnasel test- with very abnormal results. so we would probably be good "candidates" to look for xmrv in.
does anyone know-- is this study free to participants? if not what is cost for bloodtest thru the study? i do have insurance- but have noooo idea if it might cover xmrv test-- prob not.
what is cost of xmrv bloodtest NOT thru the study (if i go thru one of my drs.)??
thanks!!!!!!!!!!!! this is an exciting time. i hope something works out to help cfs patients!!!!!!!!!!!!!!!!!! i have read that canada and australia have recently banned cfs patients from donating blood. yay!!!!!!!!!
bigmama2
OMG! Ya'll are Hi....larious! This deserved my best Texas accent.
does anyone know-- is this study free to participants? if not what is cost for bloodtest thru the study?.
i have read that canada and australia have recently banned cfs patients from donating blood. yay!!!!!!!!!
Where are all the other US folks who are in this WPI/NIH study??????? so far i only know of 5 people (all how are friends of mine, from Boston to San Diego) who have gotten their xmrv kits from WPI to be participants in this study. are there others? is there anyone on this forum who got contacted by the phlebotomy services folks??? anyone?
someone sent this to me. it is from the NIH database and she found the description of this study, which was awarded in sept 2009.
<http://www.researchgrantdatabase.com/g/1R01AI078234-01A2/NEW-STRATEGIES-TO-DECIPHER-THE-PATHOPHYSIOLOGY-OF-CHRONIC-FATIGUE-SYNDROME/>
NEW STRATEGIES TO DECIPHER THE PATHOPHYSIOLOGY OF CHRONIC FATIGUE SYNDROME
Judy Anne Mikovits, Research Director
Whittemore Peterson Institute, 6600 North Wingfield Pkwy, Sparks, Nv 89436
Grant 1R01AI078234-01A2 from National Institute Of Allergy And Infectious Diseases
Has anyone heard if we'll be notified of our study results within a certain time frame? Will be told as they are done, individual contacts, one by one, in order of how our blood samples were collected? Or will they wait six months until all the tests are done before we get our results? I have e-mailed Debbie to ask but if anyone else knows or hears could you please post that information? I'd hate to have to wait six months! Would be nice if they could do them in batches & let us know sooner.