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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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  1. E

    Diagnosed at 25 with CFS losing all hope

    I was thinking this as well. As soon as I stepped into Dr. Levine's office it was like "your mom has CFS so you must have it too." I guess she's counting from when I came in to see her back in my early teens until now, but that's wrong to assume. I went to see her when I was having issues with...
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    Diagnosed at 25 with CFS losing all hope

    Thank you so much for your response. I know there are a lot of people out there who get this at our age, and even kids who get it. It's definitely rough. I feel for you! If you ever want someone to talk to - I'm here :) One thing I suppose that worked in my favor is because I had to drop out of...
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    Diagnosed at 25 with CFS losing all hope

    Thanks so much for your response, I'm so sorry you've been going through this for so long. I am honestly not the biggest fan of Levine after all of this either, but I understand she's following the protocol I guess she thinks works. I will look into Dr. Demeirleir ASAP I would really like to get...
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    Diagnosed at 25 with CFS losing all hope

    I'm so sorry for everything you have been through with your children, as a single mother, and going through the ups and down of ME. It is truly the worst kind of pain to go through and I feel for you. I know I'm many ways I am lucky to have gotten this young, improving a chance for recovery. I...
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    Diagnosed at 25 with CFS losing all hope

    Hi Shawn - thanks for your response. A lot of doctors use antivirals like Valtrex/Valycyclovir or Valcyte for treatment of CFS to try and lower viral loads in CFS patients. Dr. Martin Lerner was a big proponent of this and has a lot of published research on this method with a lot of success. Dr...
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    Diagnosed at 25 with CFS losing all hope

    Definitely not echovirus and just coxsackie A according to my blood work copies. I was thinking this all started from whatever stomach bug I caught out of the country, but she seems to think it's from my elevated EBV (she tested IgG nuclear antigen - high and IgG VCA - high, IgG early antigen...
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    Diagnosed at 25 with CFS losing all hope

    Thank you so much for your kind words. It's comforting to see others who have gone through this and are still pushing forward. Exactly as you said, just at the time when my life is about to accelerate all of a sudden the brakes are on full force. I'm hoping that I'll improve and hopefully see...
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    Diagnosed at 25 with CFS losing all hope

    Been lurking on these threads for a while and wanted to share my story. My mom has had CFS since I was about 5, I don't really remember her ever being "sick" so I didn't really understand CFS. She was lucky in the fact that she was able to go back to work for about 10 years, and have a normal...