• Welcome to Phoenix Rising!

    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

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    Whitney's message poster link

    This is amazing! Thank you so much! I am so amazed and impressed with your entire family. You are truly an inspiration to us all. You are giving us hope. You are changing the world. Thank you :)
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    A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    This is HUGE. A huge step for the ME/CFS community and for all of the patients suffering. I am so impressed with Dr. Davis and what he has been able to accomplish so far. When you think of the funds that they are working with compared to other diseases that get billons- he has already...
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    Lactated ringers?

    Does anyone here get lactated ringers or saline IVs on a regular basis as a treatment? If so, what is the regime you follow? Do you think it helps? I've been getting lactated ringers once a week. I usually get around 400-500ML, the bag is warmed and they run it slowly. I think it helps a...
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    Flu & ME/CFS

    How long does it take you to recover from the flu when you have ME/CFS? I've been sick for almost 14 years and it actually started with mono & the flu, but I haven't had it since! This year, everyone got really sick with the flu and I did too. The worst seems to be over in terms of congestion...
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    Research on ME/CFS and Pregnancy?

    Sorry, I meant to respond sooner, but got the flu :( I have tried estrogen/progesterone in the form of several birth control pills. They made me seriously, seriously ill and I think they could have even caused or contributed to my CFS state, because I began my decline after taking them. They...
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    Research on ME/CFS and Pregnancy?

    Well, I was the opposite.. even worse during pregnancy. I did try progesterone cream and felt extremely bad. I also got really bad while taking birth control pills (may have even partially triggered this). Strangely, I feel somewhat better while nursing... (not a lot, but I see a difference)...
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    Poetry & Art for ME/CFS

    Make sure to vote for your favorite poems and art! There are some absolutely beautiful submissions. Actually, I really love them all!! They are so touching and really capture what it's like to have this disease. They are making the top results into a video, I think...
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    Latest Research out of OMF

    This is what I received in my email from The Open Medicine Foundation - a new research study has just been published on Red Blood Cells and ME/CFS. I have attached the synopsis below. It is VERY exciting! It looks like they may have a biomarker/diagnostic test soon! Study...
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    Holidays

    Just wanted to send a little message for the holidays. I know it can be a hard time for "normal" people, but I think especially so for those of us fighting this illness. I think for some reason, it's easy to feel "alone", even when surrounded by family because it's another reminder of how...
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    Funding CFS Research

    The Open Medicine Foundation has been making a lot of progress into the etiology of ME/CFS. As a result of the latest symposium, 2 anonymous donors have stepped forward and agreed to TRIPLE any donations received for the next month. That means $10 would be $30, $100 would be $300, etc. I know...
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    Dr. Ron Davis Presents ME/CFS Research at the 2018 IIMEC Conference

    Another thing I forgot to mention was that he said that sometimes people feel better after getting sick. Some have thought it was the antibiotics or fever, but he thinks it could be the bacteria of the infection? Very interesting. I am not sure about the gene, definitely something I would...
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    Odd B12/Iron Bloodwork!

    I am not sure about the B-12. However, the ferritin is really low. I had issues with this during my pregnancy. My levels were 6 and I was having severe POTS symptoms. I did a lot of reading on it and ferritin levels need to be at least 80 to see improvement from POTS, fatigue, and hair loss...
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    Dr. Ron Davis Presents ME/CFS Research at the 2018 IIMEC Conference

    Thanks for posting. I did watch it. I am blown away at his brilliance and his commitment to CFS. I had tears of joy after watching this video. So impressive. I did a little summary, from what I gleaned. It is very complex, so I may not have gotten everything right, but this is the best I...
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    23&Me

    Thanks for the insights!
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    Research on ME/CFS and Pregnancy?

    Hi Rebecca, I have not been able to find a lot of research on pregnancy and CFS either. Personally I have been sick since a bad case of mono in 2005, I also developed POTS. I had a very early miscarriage before getting pregnant with my first child. With my pregnancy, I had very severe morning...
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    Despite being exhausted, do you have trouble sleeping during the day?

    Yes, it's very frustrating. I've even had a sleep study and they couldn't find anything wrong!? They found that my oxygen was dipping to 92% and I had 8 respiratory events an hour, but it wasn't enough to qualify for treatment. I guess your oxygen has to dip below 88% and you have to have 15+...
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    23&Me

    Has anyone done any of the genetic testing like 23&me? If so did you find anything that was helpful for your condition? Just curious. Thanks!
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    What induced your ME?

    I was very healthy, but within a period of weeks, I got a severe case of food poisoning, followed by a severe case of mono. At this time I also had a terrible reaction to a birth control pill and a flu shot while sick. I think that the birth control pill weakened my immune system, making the...