• 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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Search results

  1. B

    Feel terrible after taking lactulose

    The lactulose is designed to feed the problematic bacteria in the upper intestine for the purposes of the test. Your adverse reaction suggests that you might have SIBO, unless it's just your lower intestinal bacteria reacting. If you test positive and get treatment then the bloating should clear up.
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    Dr Shepherd and Nathalie Wright talk about ME and PACE on BBC Scotland 20th Feb

    Thank you CountryGirl. It starts at exactly 2:45:30.
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    URGENT: Your stories needed for debate in Parliament on ME 20th Feb at 11 am

    Here's a link that takes you directly to the start of the debate: http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:00:54
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    URGENT: Your stories needed for debate in Parliament on ME 20th Feb at 11 am

    Carol Monaghan MP on PACE: "When the full details of the PACE trial become known this will be put down as one of the biggest medical scandals of the 21st century." Carol Monaghan MP on PACE: "...the impact of the PACE trial on those with ME has been devastating."
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    Schnitzler syndrome

    Thanks @Silencio. That's very interesting. It's a rare illness that sounds very much like ME. There are some symptoms that aren't typical of ME, such as a hives rash (but I think some of us get hives). It also sounds very much like MCAS ( mast cell activation syndrome ), which a number of us...
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    Open-label pilot for treatment targeting gut dysbiosis in MECFS...

    This paper has got a helpful and interesting description of the nature of ME and it's symptoms and complications. Is anyone familiar with the authors? I don't recognise them. The lead author works in the psychology department at Victoria University, Melbourne. .
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    Stool Analysis - Recommendations?

    Have you thought about having a breath test for small intestine bacterial overgrowth (SIBO)? If positive, the treatment is Rifaximin 600mg or 1200mg or 1800mg per day for two weeks. SIBO test (UK): https://www.invivoclinical.co.uk/pr...ulose--small-intestinal-bacterial-overgrowth-
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    Sidereal has left this group and also RAG

    Tom has been evicted! But dolphin is still with us. Probably just as well to get rid of one of them; I think it might have become difficult to cope with the two of them!
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    New Option

    I'm going to have a break now.
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    Sidereal has left this group and also RAG

    OK, Tom, I'll evict Tom K as soon as you've acknowledged this post.
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    Sidereal has left this group and also RAG

    Tom, have you subscribed to a number of threads?
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    Sidereal has left this group and also RAG

    I think that nails it. I wish this wasn't happening either. But, at some point in our existence, we were going to have to make complicated decisions, so this process was probably unavoidable at some point in our future.
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    Sidereal has left this group and also RAG

    Hahaha @ Tom/Dolphin! :)
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    New Option

    Yes=7. No=0. No vetoes.
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    Sidereal has left this group and also RAG

    Tom, I've invited Tom.
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    Sidereal has left this group and also RAG

    I've had private discussions about Keith in private messages because they couldn't be had on the main forum. And that's all I've had private discussions about of substance.
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    Sidereal has left this group and also RAG

    Val, please just take a break rather than leaving. We will sort this issue. And we can vote for the next admin if it's a crucial issue. Val, we've never disagreed before so please don't let any disagreements between us in this thread come between us. I think we all just need a break.
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    Sidereal has left this group and also RAG

    Val hasn't posted in the "sidereal" thread since you were evicted, so there may be a delay in receiving alerts. So I don't think these alerts tell us anything useful.
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    Sidereal has left this group and also RAG

    User is going to continue monitoring his alerts for a while, as a non-member. If it's an issue, then we can easily migrate to a new RAG group.
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    Sidereal has left this group and also RAG

    User should be back any moment.
  21. B

    Question I received about independent reanalysis

    I think the analysis in itself is no use to a legal claim. Neither is the data. It's their erroneous justification for the post-hoc recovery criteria that is open to challenge. The analysis would help demonstrate why a spurious definition of recovery is so unhelpful and misleading.
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    Sidereal has left this group and also RAG

    Thanks Anna. Good idea!
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    Group Members

    Test Post. Please ignore.
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    New Option

    Yes=6. No=0. No vetoes.
  25. B

    New Option

    Test Post. Please ignore.
  26. B

    Time to vote!

    Test Post. Please ignore.
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    Sidereal has left this group and also RAG

    Test Post. Please ignore.
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    Sidereal has left this group and also RAG

    User, I'll evict you for precisely 10 minutes and I'll immediately post a comment in a number of threads in the group. Keep an eye on your alerts. When you 'OK' this post, I'll evict you.
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    Sidereal has left this group and also RAG

    Of course, you'll have to trust me to reinstate you... Mwhahahahaha.... (evil laugh)...
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    Sidereal has left this group and also RAG

    I'll post in this thread immediately after I've evicted you.