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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Antiviral drug survey

Messages
26
Location
San Francisco Bay Area
Hi Everyone:
I don't know about you, but I find the forum format not the best way to obtain information on our experiences with treatments. I think that surveys would be a better way to gather information from a number of patients in one place. I just got an account at Survey Monkey and wrote up up a survey to try out the concept. The first survey is about our experience with the antiviral drug famvir (famciclovir), which I happen to be taking for my re-activated Epstein Barr virus. Other surveys to follow. I will post the results as soon as I get a sufficient number of responders. To participate in this survey, please click on the link below:

<a href="https://www.surveymonkey.com/s/CFSsurveys_famvir_shastamax">Click here to take survey</a>

All responses are strictly confidential. I'm just a CFS patient trying to help us better help ourselves. Many thanks for participating! Any suggestions are most welcome.

Shastamax
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
I did the survey shastamax. Hope this helps. Again, I take two 500mg tablets of Famcyclovir twice a day. My Doc increased it from one tablet twice a day in December 2012. I was on Valcyte for 13 months with some improvement. I am now on GcMAF. I just posted a video by Dr Kenny De MeirLeir in the blog section that you may want to watch. It's called ME and PAIN.
Namaste
 
Messages
26
Location
San Francisco Bay Area
Update on my survey project- just 8 responders to the famvir survey, but I'll post a link to the results later this week. My survey project may be obsolete due to the Chu/Jason survey which includes excellent questions about this and other prescription drugs for ME/CFS. Please take this survey. It can be found on the Phoenix Rising homepage or on Cort Johnson's new site Health Rising.
 
Messages
1
Can you repost the survey results link please? It's throwing up an error for me when I try to access it.
 

RUkiddingME

Senior Member
Messages
220
Location
Canada