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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. twilightsun

    overmethylation URGENT HELP

    Niacin (nicotinic acid) is what you want to stop the effects of overmethylation. It will most likely make you flush, and addition to my face turning pink, it made my hives come out. I was ridiculously itchy. But these effects went away after about an hour, and the relief I felt from stopping the...
  2. twilightsun

    Andrew Wakefield links autism to CFS

    The inability to replicate the man's results in subsequent studies and the falsification of data ("it was utterly clear, without any ambiguity at all, that the statements in the paper were utterly false."), the testimony of a former graduate assistant concerning the data that did not support...
  3. twilightsun

    Andrew Wakefield links autism to CFS

    I didn't see it mentioned elsewhere in the thread, but Andrew Wakefield is a fraud. The journal that published his infamous "vaccines cause autism" study printed a retraction. I wouldn't take anything that man ever said at face value. That being said, I do have Asperger's, as does my son. We...
  4. twilightsun

    Is all niacin in the form of nicotinic acid?

    I read the Wikipedia entry first, but I still have confusion, especially after having read this. The article suggests that niacin supplements in the U.S. are most likely to be nicotinic acid, but nicotinamide can also be sold as niacin. Many of the supplement labels I've been reading online only...
  5. twilightsun

    If "23andMe" is offline, where can we get tested?

    23andMe is still selling kits and analyzing DNA samples, but new customers can't get any health reports done. As @bel canto mentioned, you can still download your raw data. I think a lot more 3rd party apps, like Promethease, will crop up to fill the hole in health analysis.
  6. twilightsun

    Is all niacin in the form of nicotinic acid?

    I've seen @caledonia posting about how nicotinic acid is the fix for overmethylation, but I just want to clarify whether or not any niacin supplement is the same thing as nicotinic acid, or if there are different forms of niacin just like there are different forms of folate and B-12.
  7. twilightsun

    Interpreting Genetic Genie Results and Starting Supplementation

    Oh, I want to add about venlafaxine withdrawal: I haven't tried it myself, because I haven't had to come off of it yet, but Prozac is supposed to help temper Effexor discontinuation syndrome. Prozac has a half-life of one week, as opposed to mere hours. So if you end up having issues when you...
  8. twilightsun

    Interpreting Genetic Genie Results and Starting Supplementation

    I can't comment specifically on the Genetic Genie data, but I do want to mention to be very careful with your venlafaxine. I'm on 150mg daily, and that's as high as my doc will go with this particular drug. I'm not sure if you've ever experienced withdrawal symptoms following a late dose, but...
  9. twilightsun

    Is PEM only found in cfs?

    I'm sorry about your father's death. We found out my dad's cancer came back this summer, and my health took a downturn after his two close calls where we almost lost him again. I don't want to think about the inevitable. How are you coping now? I know that sort of emotional pain doesn't just go...
  10. twilightsun

    Is PEM only found in cfs?

    Oh no, it wasn't like that. He's very mind/body oriented, and the comment was meant to suggest he was glad that my primary care doc figured out I needed some ibuprofen to kill the inflammation (since the acetaminophen I'd been trying didn't touch it) - but telling me I had costochondritis didn't...
  11. twilightsun

    Is PEM only found in cfs?

    I remember the first time I went to the doctor (my primary) for chest pain a few years ago, and after making sure there wasn't anything wrong with my heart, she diagnosed it as costochondritis and prescribed my some high dose ibuprofen. (That did clear it right up.) The next time I saw my...
  12. twilightsun

    Is PEM only found in cfs?

    I'm curious how frequently others experience PEM after strong mental or emotional exertion, as well. Physical exertion definitely triggers it (and yet I still go shopping every Black Friday...) but I am currently experiencing a rather nasty crash related to mental exertion from yesterday. It...
  13. twilightsun

    MTHFS defect (folinic acid intolerance) - request for genetic data

    MTHFS, ST20-MTHFS 80136129 rs685487 A or G AG MTHFS, ST20-MTHFS 80136288 rs8033649 A or C CC MTHFS, ST20-MTHFS 80137560 rs8923 C or T CT MTHFS, ST20-MTHFS 80138571 rs2733103 C or T CT MTHFS, ST20-MTHFS 80138745 rs16971427 A or C AA MTHFS, ST20-MTHFS...