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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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Search results

  1. E

    Article: Ampligen Study Sparks Hopes for FDA Approval of First Drug for CFS

    Whoops! My bad everyone! I just looked at Cort's date of publication - not the study dates. This study is really old. Thanks for the clarification everyone! :) E.
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    Article: Ampligen Study Sparks Hopes for FDA Approval of First Drug for CFS

    Cort - Where did you get your information from? As a patient receiveing Ampligen at one of the testing sites you mentioned and paying for it My doctor didn't know Hemispherx was running a double blind study! This drug is insanely expensive for my family and I know of patients at other sites who...
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    Comment by 'Evangelina' in 'please help...not sure where to ask but hoping i can get some help on issue'

    From a non-legal background there is always the legal term "Sue for Defamation of character" that might come in handy. E.
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    Ampligen approval granted extension by FDA

    Hemispherx is just keeping up with its paperwork. They needed an extension granted by the FDA to keep their AMP 511 going. As far as Chronix is concerned it is just my opinion that they are tryong to boost their investment capital. Hemispherx needs the AMP 511 patients so it can fund another...
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    Ampligen or Imunovir...Which to choose?

    Yes, I am on Ampligen - and doing amazing things! Feel free to email me for more info.
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    Have you been treated with Ampligen?

    There are quite a few people who have tried it or are currently on it. I would direct you to the following: https://docs.google.com/spreadsheet/ccc?key=0AllDPaztxjQDdFBkSHRPdkhZblRobzVWUTZUY3JGQ0E&hl=en_US#gid=0 I would read Kelvin Lord's Blog - it helped him greatly. His first blog entry...
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    Lower Dose Ampligen

    Hemispherx protocol is exceptionally liberal. You may start at whatever dose you wish. Most docs. prefer you start and at least try protocol first (200 mg and then up to 400). Peterson starts patients at very low dose (usually below 100 mg). If you do not tolerate the higher doses you may reduce...
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    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    I am a good listener, I hope. I try to be anyway. "I would have expected a replication of the original WPI paper" - Okay. This sounds like a great idea. I do not know why is was not replicated exactly. Has anyone asked Dr. Singh? Perhaps we can channel our efforts into a group email to...
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    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    Quote: (sorry I forget to hit the little box thingy) To post #139, 140 and 142: "I'm repeating myself, but tell me why my thought is wrong, and i will stop: Ila Singh has found 0 XMRV in 200 healthy controls plus 105 cases of ME/CFS. That's 305 subjects. This contradicts her earlier...
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    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    I am just going to toss in my two bits here. First of all - I have had CFS/ME for 20 + years. I am at the very least equal to almost everyone else here in the amount of suffering and pure hell (which in this case is a place and not a swear word) that I have lived through. Second - I want...
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    Suggestions needed for chronic Bronchitis

    Hey all - I had to have a chest x-ray yesterday and I have bronchitis (again). Over the past 5 years I have had pneumonia, and bronchitis almost constantly (4 pneumonias and bronchitis about every other month). I have been on every oral, IM and IV antibiotic that my docs can think of...
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    energy-saving hygiene habits (or lack thereof)

    What an awesome thread! I use the "barn method." When I was well enough to be around horses I learned how to get 1 very muddy, disgusting animal moderately presentable within a 10 minute window. The basics of this are: 1. Know what you intend to do at the end (are you going riding or just...
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    All the different test's, can we list them?

    I hope these haven't already been mentioned - CT w/ contrast EEG Trans-Cranial Doppler (to look for large ASDs and PFOs) 30-day Cardiac Monitors King-of-Hearts Event monitoring Tilt-Table test (for POTS/OI) Observational neurological testing (can you walk a straight line w/ your eyes...
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    Let's remember May 12th is International ME/CFS & FM Awareness Day on Facebook.

    Hi, I read your post on the International Awareness Day. I thought you might like to know that there are some other things you can do besides facebook. First of all I would order a batch of awareness wristbands. You can order them in shipments as small as 1 wristband from...
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    how old are you?

    This poll needs to be ammended so that you can also put age of onset E.
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    Getting Help from Civilians

    I think there are some things we can do inexpensively that would help focus people. First of all - we need a famous spokesperson. What about sending autograph requests to your favorite movie / tv stars and including a letter about your me/cfs and how tv / movies are the only thing you can...
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    Ampligen or Imunovir...Which to choose?

    I will keep you all posted. Thanks for the support. I will be starting infusions end of May. I think I'll take a page out of Kelvin's book and blog about it. Lol. It could be really funny since my system hates medications with a passion! E.
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    Ampligen or Imunovir...Which to choose?

    mojoey, Thank you for your post. That was a very interesting CBA. However, I think that (for me anyway) Ampligen is the way to go. After a lot of prayer this is what I feel is right. Thank you very much good luck with your protocol. :) E.
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    Ampligen or Imunovir...Which to choose?

    Thanks for the input. I guess my problem is that since Imunovir is easy to get (versus Ampligen which my doctor has only just started dolling out again) I was thinking that I ought to go for the one that is harder to get. Besides, since I have been googling Imunovir and haven't found scads of...
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    Ampligen or Imunovir...Which to choose?

    Hi folks, I hope your day is going better than mine. I was wondering which would you choose - Ampligen or Imunovir? Which one has a better track record of success? I can afford either and I can afford Ampligen top-offs if needed. I don't know what to choose. I just want to be as free as possible...
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    How to Handle the Loneliness and Isolation?

    Dear C, I was alone for 17 years. I finally started praying for a friend about 3 years ago. I was virtually housebound, but I tried to go to the library once every 3 weeks or so (hey, I needed some cheap thrills). I had been praying consistently for a friend for a few months and one day in...
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    Possible Ampligen 511 trial locations

    Relocating is difficult - there are tradeoffs to most places. I would consult with people living in specific cities before choosing where to move. Folks on PR would probably be willing to assist in this aspect.
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    Article: Hope for Ampligen-Breaking News!

    Is there any collective data available for public viewing? "Hemispherx has not committed to doing a "double blind" test--- this would be the kind of placebo trial where the drug company pays for the medicine, but only half the patients get the real drug. Sadly, that news did not come out of...
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    Chest pains and Pulse

    My heart and I have a complicated relationship. It likes to freak out. I had an ASD (Atrial Septal Defect) and I had it repaired 2 years ago. That didn't change any oddities in my heart rhythm though. :) I have had 2 holters and countless EKGs and I even wore a King of Hearts (gads - I thought...
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    Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the U.S.

    I personally think that we do need some media attention. However, since I don't want us all to end up with flares or relapses may I suggest the following? We need reporters! We need jounalists! I know you all are probably in a brain fog right about now (as I am), but follow my line of...