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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. M

    Question re: the ICC Criteria and Ion Transport issues

    Has it already been posted? https://www.sciencedirect.com/science/article/pii/S2213158219303924#bib0032 "The role of Ca2+ in relevant astrocyte support and/or oscillatory performance of RAS neurons is yet to be established. It is also worth noting that neuroinflammation has been observed in...
  2. M

    Research on ME/CFS and Pregnancy?

    Another pregnancy guideline from the Bateman Horne Centre: http://batemanhornecenter.org/wp-content/uploads/2016/07/BHC_PregnancyGuide.pdf
  3. M

    Research on ME/CFS and Pregnancy?

    I know this thread is a bit older @RebeccaRe but I just saw this video on youtube from the Bateman Horne Center:
  4. M

    Progesterone the hate story

    That's a very good question. I can't answer it. I wouldn't say that problems with progesterone in pwME are a hint to better avoid pregnancy. Maybe progesterone just causes trouble in balancing homeostasis and pwME cannot cope with that? You would need to ask pwithoutME and problems with...
  5. M

    Progesterone the hate story

    Yes, I know, doctors can never tell why some people don't tolerate synthetic medication or hormones... and they never have an explanation... I was also thinking about blood pressure (which was very low in my case, too) and vascular reactions but hormones have such a complex impact and are...
  6. M

    Progesterone the hate story

    No, I didn't, you can just apply it anywhere on your skin. It's said to have better effects on thin skin (like the inner side of under arms or the hollow of the knee) but in my experience it doesn't matter where you apply it, progesterone finds its way through any skin even the sole of your feet...
  7. M

    Progesterone the hate story

    Hi @pattismith, same for me: I've tried transdermal progesterone, not capsules, and I felt like it nearly killed me. I was (and perhaps still am) low in progesterone. After taking a hazelnut shaped amount of prog. cream for 10 days ( I think it's one tenth of one capsule) at night I felt great...
  8. M

    Great German radio feature on ME

    So good to hear from you @Joh :);) and, of course, the radio interview!
  9. M

    #MillionsMissing Germany, May 2018

    Live Performance watching now: https://www.facebook.com/mmissinggermany/videos/1867129640251782/UzpfSTE4NDg2MDQ2MDg3NzA5NTI6MTg2NzEzMTMyMzU4NDk0Nw/
  10. M

    #MillionsMissing Germany, May 2018

    @Joh thanks so much for keeping us informed :) :):hug: It's a great location for MillionsMissing!
  11. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    Take good care @Wonkmonk especially with the high dose Vit C!
  12. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    Became slightly stronger, but had also relapses due to infections but recovered faster. I actually don't know what's more effective: Taking IVs each day in a row or taking them once or twice a week to give the body a chance to "use" the Vit C or react to it in some way...
  13. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    :thumbsup: I remember the same effect. Could even drive a car for a short time :-) I was thinking about other reasons for immediate positive effects of infusions: Could also be due to an increase of blood volume. And most PwME are low in/have low blood volume? (Anyway, Vit C positive effects...
  14. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    As for me it took 24 hours to notice any effect of IV Vit C and it lastet for 3-4 days. I'm excited how this is going to work out for you @Wonkmonk! Did you apply the infusion yourself or did you go to your GP?
  15. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    @Wonkmonk is there any evidence for that? I'm asking because that would be interesting as Vit D also makes me worse (but if my Vit D levels are higher e. g. sun exposure I'm feeling better). I never had problems with IV Vit C or oral.
  16. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    Hello @Ema do you remember what kind of Vit C that was (brand name or composition)? How is the ozone applied? Did it let drop your virus titers or just made you feel better and more energetic?
  17. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    @Wonkmonk @pamojja the Vit C I got was a ready-made solution that had to be mixed with the saline.
  18. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    @Wonkmonk The first five IVs were soluted in 500ml NaCl, they took about 1 - 1 1/2 hour (was very long but also the nurses weren't that experienced and the infusion stopped sometimes). The following weekly infusions were soluted in 200 or 250ml NaCl and took about 20-30min (I changed doctors...
  19. M

    High-dose intravenous Vitamin C effective against Epstein-Barr-Virus?

    I can only share my experience (but no real scientific data ;-) I once had 7,5 g Vit C IV five days in a row for one week, and after that 7,5 g once a week: No side effects (no diarrhea etc.) but felt better, especially I had less brain fog and more energy overall and little bit more muscle...
  20. M

    Now very severe HELP

    Hello @Gingergrrl @MartinDH yes I think Martin is asking about that. As for myself I've never taken blood thinners while bedbound and in a crash. But maybe someone else can share experience with that?
  21. M

    What has helped improve your energy the most?

    That's so interesting @pattismith. Do you know of any research or publications stating that besides the anecdotal reports you mentioned here?
  22. M

    Comment by 'mari_gold' in 'Trip to the charite in Berlin, part 12'

    Hello @TiredSam :-) great report, still have to go through it all though. Can you tell what is meant by "neuromodulatory drugs", Antidepressants?
  23. M

    Research on ME/CFS and Pregnancy?

    Thanks @RebeccaRe for your question as it is the same that I'm asking myself lately. Thank you @i-lava-u and @Lipac for your precious mum-with-ME-reports! It's so good to have someone sharing experiences like this.
  24. M

    Dire new German guidelines for ME.

    Hi @Joh and @MartinDH, I also wanted to mention the thread in the https://www.s4me.info forum. You are so fast Joh :-) Yes, MartinDH, go for the German Association for ME/CFS! It's definitely a good thing!!! On the Unrest page there is also a filmscreening in the South listed (Freudenstadt...
  25. M

    Dire new German guidelines for ME.

    @Countrygirl some boats are not enough, I fear :( Maybe even build another Chunnel... Thanks @Joh for posting some details about the new German guidelines and the German ME/CFS reality in practice. @MartinDH so true what you wrote ... and really sad. A friend and I also made comparisons with...