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

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  1. V

    PR Collapse

    I'm leaving this group now. You all know where to contact me if needed :-)
  2. V

    PR Collapse

    Deleting messages isn't working. It's just doing a soft delete but storing the message. Might need to replace every message with a "." or similar.
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    PR Collapse

    I've been placed in the "suspected advertisers" group, so can't start new PMs, and no one can start a new PM with me. I can respond to existing PMs, however, so those can be used to keep in touch that way if needed.
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    PR Collapse

    You're all welcome to join us at http://savepr.freebb.net/index.php if you want to be involved with the planning process. It's the interim forum while we get the real one set up.
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    PR Collapse

    Gary made Sushi a moderator again on Friday or earlier, despite that she previously gave out personal info about forum members to her buddies on HR, lied about it, got caught, confessed, tried to unban Ema, lied about it a lot, and got caught...
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    PR Collapse

    They won't let anyone on the board. They only let Adin on because they need his technical expertise when they finish forcing Mark out. There's no way to force them to allow anyone on the board.
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    PR Collapse

    Janet won't let anyone else take control of PR. No voices of reason will be allowed into any part of the PR power structure. An anonymous source says that Gary told them that OMF (Ron Davis, Janet's husband) is analyzing his blood and that of some of his immediate family members. Gary is...
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    PR Collapse

    Hey, how come I didn't get a comment about being non-inflammatory when I mentioned I was being moderated?!? :angel:
  9. V

    Journal from my Moderation Cell, Day 2

    It is no less dark in my cell, but it has become less lonely. Another hapless inmate has been housed nearby, But hope remains as the Resistance prepares to flee to a promised land of plentiful subforums and sweet moderation. Dreams of my new life sustain me in this purgatory. Yours...
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    Journal from my Moderation Cell, Day 1

    12 October, in the year of our Lord 2017 It is dark and lonely here. Not only can I not speak to my loved ones, my incoming stream of "likes" have trickled off to such an extent that I fear they will not be sufficient to sustain me. Nonetheless I hear the faintest whispers of news from the...
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    PR Collapse

    I'm on moderation now. Can't post in the forums.
  12. V

    Opinions on de Meirlier

    A hostile takeover of the forum's board of directors, followed by gross mismanagement.
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    Mrs Sowester's Magic Beans

    They produce the most powerful farts.
  14. V

    Some concerns about homeopathy

    Homeopathic treatments aren't regulated, so there could really be anything in them, including something which can have an effect on nausea. Also, some products labeled and marketed as homeopathic are actually naturopathic ... so might contain substantial doses of natural remedies such as...
  15. V

    Support messages Prof. Meirleir

    People were going to do the same for Dr Nigel Speight (probably misspelled that), and were asked not to by him. It won't help with the court at all.
  16. V

    Mitochondrial Disease conference in Akron, OH - Fri Oct 13 & Sat Oct 14

    I got the same diagnosis in law school, 5 years prior to ME onset. Corticosteroids made it worse, but Intal (Cromolyn Sodium) helpeda bit. Though it went away after a while.
  17. V

    Mitochondrial Disease conference in Akron, OH - Fri Oct 13 & Sat Oct 14

    That one could be interesting, in the context of a possible relationship to ME.
  18. V

    Help interpreting amino acid test results

    The ones listed there seem to be normal things to find in the urine. So the lab is being sloppy about listing ranges.
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    I think the difference is that he's doing it in Europe, where socialized medicine has resulted in a very rigid process which most doctors follow. What he's doing would be (and is) completely normal and unremarkable in the US. Socialized medicine is mostly a great thing. But private doctors...
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    Help interpreting amino acid test results

    It means there shouldn't be a detectable quantity. So even a "trace" would be an abnormal result.
  21. V

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    There are plenty of studies showing that antibiotics are effective in people who have tested positive for bacterial infections. And that immune-modulators are often effective in people with documented immune dysfunction. And that digestive enzymes are appropriate for people with food...
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    Being on boards isn't a financial interest. Board members don't get paid. But the journalist does criminal stuff, so probably has little clue about the business aspects. The journalist also doesn't seem to understand (or ignores) that developing tests and treatments is normal and even necessary...
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    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    I read the longer Apache article, because the short ones were completely unclear about what the actual charges are. As near as I can tell, the problem is in importing Nexavir, 10 or so years ago. From my understanding, the article covers a lot of ground. It states that the etiology of CFS is...
  24. V

    Hypoglycemia and Ketosis - your thoughts?

    No, but a lot of researchers seem to be. Google Scholar has a large number of articles on the subject.
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    Organophosphate Dichlorvos and mitochondria toxicity

    Today is 25th anniversary of a cargo plane crash in the Netherlands which hit two large apartment buildings on the outskirts of Amsterdam. 190 liters of Dimethyl methylphosphonate (an organophosphate) was part of the cargo, though that was not made public until 6 years after the incident. From...
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    Hypoglycemia and Ketosis - your thoughts?

    Ketosis is at least one cause for it. I can't imagine it would be due to any meds I'm on. It has been elevated before in urine, years ago. At the same time it was high in my recent blood sample, it was also at the low end of the normal range in my urine.
  27. V

    Hypoglycemia and Ketosis - your thoughts?

    Except in my case, there were normal levels of glucose, with indications of ketosis at the same time :-P So it might not be the glucose levels causing ketosis.
  28. V

    Hypoglycemia and Ketosis - your thoughts?

    I've only paid much attention to blood sugar and ketones since developing diabetes. But here are my observations, in case they help. First of all, I'm never hypoglycemic. But when I was on gliclazide, my blood sugar would routinely dip below 5.0 (90), and I would always have a "false hypo"...
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    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    Nonetheless, they would use that access to produce junk research, spin the results, pollute the evidence base, and prejudice government institutions and the public against ME and ME patients. They should not be getting funded, nor having any other resources wasted on them.