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I noticed many people here are being treated with antivirals. 

I asked about this at the Mayo Clinic and was told no, and my local doctors are clueless. So, I'm wondering if anyone has some suggestions on who might prescribe these.

Also, have antivirals helped you?

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  • Posted

    I find it interesting that the Mayo Clinic, which is supposedly one of the top medical facilities in the U.S., won't prescribe antivirals for ME/CFS. This tells me that they're not at the forefront of research in this illness. To get these antivirals, you need to go to a specialist in ME/CFS, and there are not that many in the U.S. Some of these specialists are Dr. Jose Montoya and his associates at Stanford, Dr. John Chia in Los Angeles, Dr. Dan Peterson in Incline Village, Nevada, Dr. Nancy Klimas in Miami, the Bateman Horne Center in Salt Lake City,and a few  others. You can probably use Google to find out more names. Also, maybe some GPs might be open to prescribing the antivirals if you were to print out prescribing information from these specialists. I believe that Jen Brea, who made the film "Unrest," is being treated and has improved with antivirals. Like any other meds for ME/CFS, these antivirals only work for a subset of people. I've tried some antivirals that Dr. Chia has prescribed, which haven't worked for me. For instance, I've tried some antivirals that are used for AIDS patients. But I'm still thinking of trying Valcyte.

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    • Posted

      Jackie - Thanks so much for your information. It's amazing how I just got more useful info from you than from all of my doctors. smile I will look into those doctors.

      I agree about the Mayo Clinic. They are great for diagnosing and for many things, but not when it comes to ME/CFS. I am going to do their program on it (which is combined with fibromyalgia) in case I can get any useful info at all, and I will ask the nurse specialist that I meet with about the antivirals, but my coordinating doctor absolutely shut me down about this. They seem convinced it is about stress, though they have no real reason to believe this.

      I used to suspect is was from stress too, but I've worked hard to remove stress from my life and have been off of work for 5 weeks and have only gotten worse despite everything.

      I'm ready to try another method.

      I'll gladly accept any more advice from anyone. I'd love to get better and head back to work.

      Good luck and I hope Valcyte works for you.

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    • Posted

      Just a few more thoughts. I was curious after reading your posts about Mayo Clinic, so I went on their website. I was pretty alarmed to find that their treatment recommendations for ME/CFS are cognitive behavioral therapy and graded exercise therapy. These treatments are recommendations of the PACE trial in the UK, which is now widely debunked. As a result, for instance, many medical organizations are removing those recommendations from their websites and do not promote these treatments. (I think this includes the CDC) Graded exercise therapy especially can do much damage, as it did to me when I tried it. Also, two more specialists in the U.S. that are highly knowledgeable about ME/CFS: Dr. Susan Levine in New York City, and Dr. Anthony Kamaroff in Boston.
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    • Posted

      I am also alarmed about the treatment recommendations at the Mayo Clinic, and surprised how quickly the doctor shut me down when I asked about antivirals. I happen to live about two hours from the one in MN, so I was hoping they would be able to help. I am going to have to travel further, which we all know is really, really hard with this condition. I am researching all of these doctors that you've listed for me to try to find one that looks best for me. Thanks again.

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  • Posted

    My integrative doctor in fort Wayne indiana does. Dr. Laselle ,and Im trying them now. 4 months but don't see a change, of course ive heard you have to take them for at least a year. Hope my liver can handle it! Are you near there by chance? I also want to try the cocktail iv thing. And accupunture. Heard good things. I really like massages also and hot epsom salt bathes. Sorry so late. Was reading old posts. Any luck so far?

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