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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. Nina

    Anxiety & CFS symptoms activated by Eating/Drinking

    Histamine can be a huge problem even if there are no skin-based symptoms whatsoever. I tend to get the symptoms of anxiety without actually feeling "anxious" (if that makes sense) from histamine (increased heart rate, weakness, feeling faint, tingling and more). Although the fact that you...
  2. Nina

    Input requested on possible changes to simplified methylation protocol

    I'm not exactly a big success story (yet), so please take this with a grain of salt, but I'd like to add that for me implementing SAM-e was absolutely critical. That was the first time I actually noticed some improvement. I'm still completely bedridden but it has given me some quality of life...
  3. Nina

    Estrogen dominance: Does/did natural progesterone help you?

    Thank you so much, Ema. Yes, I took the test on day 20. I know that my adrenals are a problem but not as much as they used to. I ordered a cortisol saliva test as well and that came back a lot better than the last time. I was actually within the reference range for the first time over the whole...
  4. Nina

    Estrogen dominance: Does/did natural progesterone help you?

    Thanks for your replies, Justy and Dreambirdie. I've been taking agnus castus for over a year now and it helped to get my cycle up to 26/27 days again, which is good. But it didn't do anything for the other problems and obviously didn't help my body make enough progesterone. I'm reluctant to...
  5. Nina

    Estrogen dominance: Does/did natural progesterone help you?

    After suspecting I'm in an estrogen-dominant state, my latest saliva hormone lab tests showed I have high normal estrogen but below normal progesterone. Which indeed translates to a rather extreme estrogen dominance (recommended ratio: 1:200-300, mine: 1:10). And I'm not even nearing menopause...
  6. Nina

    Article: CDC CFS Program Changing Its Stripes, NIH Lags Behind in 2012: The Road Ahead Pt. III - the

    As long as they are still using the Empirical Definition and the Wichita Cohort, substantial change is impossible to happen. And for how long have we been promised changes to the CDC website? When some were made, it was usually for the worse. I wish I could share your optimism, Cort, but all...
  7. Nina

    Methylation - hair loss

    Wow indeed! Thanks for coming back here to report on your progress. I thought it was particularly interesting that an alternative doc found out about the tapeworm since my trust in kinesiology, bioresonance etc is basically non-existant (doesn't mean I haven't tried it though). Does...
  8. Nina

    ME/CFS specialist in Germany?

    Dr. Bieger is actually in Munich, so he may be a good choice. He's a private doctor though and unless you have private insurance it won't be covered. I haven't seen him myself but I might if I was well enough and living nearer. All the best to your friend!
  9. Nina

    Methylation - hair loss

    Thanks for the explanation, Freddd. Coincidentally I've been coming back to find more info about methyl-trapping just this week after reading this article: http://www.alternativementalhealth.com/articles/walshMP.htm I find it extremely hard to know which supps are helpful in the long run...
  10. Nina

    Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

    Just to be clear, by "severely affected" I am talking about people like myself (and I am still by far not at the most severe end) who are unable to leave their beds at all, often struggling to eat, talk, sometimes swallow or even breathe. Even on forums like these I feel like this group does...
  11. Nina

    Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

    I wonder if this is good news for the severely affected patients too? Since her "exercise" recommendations it seemed to me like Dr. Klimas is too out of touch with this patient group who needs help the most. Going forward, I hope each and every organisation and initiative will refuse to neglect...
  12. Nina

    Stuart Jones hearing with HPC for comments against Dr Myhill

    Great post, Mark, thank you.
  13. Nina

    Could we do something for Theda?

    I don't think the thread needs to be deleted as the intention is certainly good, it just needs a different name, like "how to help severely ill patients" or something. Thanks.
  14. Nina

    Could we do something for Theda?

    I would strongly suggest to change the title of this thread. The last I knew Theda was sometimes able to be online and I imagine she would be horrified to read this (I know I would!). Please would someone change the name of this thread to something more considerate. That being said, I am...
  15. Nina

    Mikowitz accused of manipulating XMRV paper

    Why anyone would accuse Mikovits of being "too emotional" or "too outspoken" and then go on to commend this girl Abbie Smith is beyond me. Double standards par excellence.
  16. Nina

    Chicago Tribune: Manipulation alleged in paper linking virus

    Great post SOC. I'm not sure why some are apparently so eager to roast well meaning people over the coals while applauding our most outspoken and nasty opponents. Some facts would be nice for a change.
  17. Nina

    UPDATE: BLOOD WORKING GROUP

    Ah, come on, Eric ;) Of course we don't *know* what would have happened otherwise, but we can take a pretty good guess judging by decades of experience! I registered on PR because of the Lombardi study. So did hundreds of others. We started connecting with others from around the globe. How...
  18. Nina

    UPDATE: BLOOD WORKING GROUP

    That would be applicable if the WPI had done this in their own lab, collected and prepared their own samples and chose a trusted person to blind and unblind the samples. AFAIK that's not what has been happening in the BWG Phase 3. If results are inconclusive or even if nobody was able to find...
  19. Nina

    UPDATE: BLOOD WORKING GROUP

    What a coincidence that all of this is now being published all at once... again. Can someone say orchestrated?
  20. Nina

    UPDATE: BLOOD WORKING GROUP

    The way this has all been prepared, I am 100% sure the BWG results will be negative and we will see yet another big media campaign dragging XMRV to its grave for the umpteenth time. Remember, this is just one more single study. There is still unrefuted evidence for HGRV infection in "CFS"...
  21. Nina

    Annette Whittemore on Nevada Newsmakers again

    I think it's extremely sad and potentially very harmful to patients that a certain group of people (with the help of the media) has managed to create a situation where many now feel that HGRVs is the make or break for the WPI. It is not. The WPI has a right to be wrong and continue their...
  22. Nina

    Methylation a problem but protocol doesn't help - what to do?

    Mary: Thanks for your input. I am slowly upping the potassium now. I used to take adrenal glandular extracts and that always helps to a certain degree but then usually gives me an intense "hyper" feeling that makes it impossible to continue. I still take B-vitamins and large doses of B5 and I...
  23. Nina

    Methylation a problem but protocol doesn't help - what to do?

    I have now uploaded my recent UAA test. The left column contains the latest results, the column right of the diagram contains my previous results. Reference ranges on the far right.
  24. Nina

    Methylation a problem but protocol doesn't help - what to do?

    Hi Rich, I have been taking the active forms of B12 for a long time now, including at least 1ml MB12 a day, so I guess this is unlikely to be the bottle neck. I'm not sure if Methionine got tested on the UAA panel but will look that up as soon as I can. I've been thinking about injecting...
  25. Nina

    Methylation a problem but protocol doesn't help - what to do?

    Hi Therron, histamine is a huge issue for me, too. Some sources list vitamine B1 and folates as contra-indicated but I know at least regarding the folates Rich doesn't quite agree so I have continued taking it. I may try and go without it for a while to see if that changes anything. Sea...
  26. Nina

    Methylation a problem but protocol doesn't help - what to do?

    Sorry for taking some time to update this thread but I have been really unwell. I will try to answer each of the suggestions you made and also post my latest lab work as it comes in, but will need to break it into several short posts. So please bear with me, I will get there :) Re: Freddd's...
  27. Nina

    Methylation a problem but protocol doesn't help - what to do?

    Thank you so much for your help and suggestions! rich: Thanks, as always, for sharing your knowledge and time so generously. It is very much appreciated. I will add my thoughts to some of the points you raised below (*****): To find out if the methylation cycle is still blocked, what other...
  28. Nina

    $$$ for WPI vote daily now in Vivint Round 2!

    WPI is my only hope of ever getting help and medical treatment that works for us. They are the only institute in the world that will have a clinic and research facility combined. That is the fastest way to get us answers. The government is not going to fund them, we need this money! As much as...
  29. Nina

    Methylation a problem but protocol doesn't help - what to do?

    Hi all, although various lab results suggest that methylation and mitochondrial function are at least part of the problem (I'm at the very severe end, 100% beridden), the protocol doesn't seem to help. I had been on the Myhill protocol for a couple of months, then on the SMP and lately...
  30. Nina

    Vivint will match your donations to the National ME/FM Action Network and to the WPI!

    The WPI is not out of the woods yet. The big players like Invisible Children (400,000 FB fans!) haven't even started yet. They would be able to take out WPI within a matter of days. Please keep voting for the WPI.