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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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    If CFS may have autoimmune aspects to it, is it dangerous for us to take immune modulators?

    I am not one of the "one day I got sick and never recovered" people. My initial diagnosis was autoimmune vasculitus.I had positive ANA. I was able to work for 4 years until everything I tried stopped working. I will check into the herbs, thanks for the links. Something natural is preferable to...
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    If CFS may have autoimmune aspects to it, is it dangerous for us to take immune modulators?

    Hemispherx restricts us since it is still a stage 3 clinical trial but thanks for the suggestion. I have used several antiviral like Valcyte,Valtrex and the dreaded Vistide. Using a combo of Ampligen and Vistide in 2015 brought me close to normal function. Unfortunately, no treatment protocol...
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    Update on Ampligen Availability in the US

    I have severe ME/CFS (required to participate in the trial). When I first started Ampligen, I was barely able to care for myself and had to hire drivers to get me to the infusion center. The effects were not immediate but after several months, I started getting better. I function at a much...
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    A Town Designed for ME/CFS Would Have...

    Great wish Iists. Mine is simple , find out what causes this and cure it. We all just want our lives back.
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    Update on Ampligen Availability in the US

    Ampligen is being used in the USA but it is 200.00 per bottle and we use 2 per week. I know of no sites recruiting patients. Not all patients respond but those who do see great benefit. Hemispherx currently has an early access program in Europe and Ampligen is approved in Argentina.
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    If CFS may have autoimmune aspects to it, is it dangerous for us to take immune modulators?

    I have been on immune modulator drug Ampligen since 2010 and it has been life changing. Much better function and quality of life. Too bad it is not FDA approved so that others could benefit. It is not for everyone, but for those who respond, it is amazing. The open label clinical trial is...