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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. S

    If ME/CFS was mentioned @ conferences like these!!

    Hey guys, I Got very frustrated when I received an email from AAPA which is an organization basically every PA is part of, that is national conference on chronic illness and once again not a single Mention of ME/CFS!! If we could get ME/CFS mentioned at conferences like this where thousands...
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    First time in remission with ketogenic diet

    Yes the first year is hard. I couldn't make many connections that first year. I did not see many results until at least 8 weeks off Gluten because of that withdrawal effect. I also wonder if a lot of this could also be a result of immune cell shifting and regeneration that has been studied to...
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    First time in remission with ketogenic diet

    I feel like some of this may be endocrine but I am convinced the worsening is endogenous opioid like withdraw. Since majority of us most likely have gut dysbios more gets through to our brain and gut dysbiosis also inhibits DPP enzyme?? DId you kick all grains at once?
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    First time in remission with ketogenic diet

    DO you think it is possible it is a gluten free and or grain free diet which helps heal gut dysbiosis vs just Keto diet? similar response to a GF diet for me at first!
  5. S

    The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

    Enteroviruses? Most viruses affect mucosa as well including the gut
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    NIH still needs patients

    HI I am not sure why that response I wrote months ago was just put on this thread and I am confused haha. I am not going to do treatment as anything I do to help AE makes ME worse visa versa. I am pretty much 99.9% positive of my journey to ME and how to correct it at this point If I just had...
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    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    I kinda did an experiment on myself pertaining to this decreased acidity as well. I noticed that my symptoms worsened substantially when I drank water with bicarb or added electrolytes which are mostly alkaline. I mean I get vertigo and decreased fat absorption ect. I started eating an apple...
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    Columbia Researchers Report They Can Predict 84% Confidence Level Testing

    I agree completely with the thyroid statements! I actually feel inflammation within my thyroid whenever I take herbs that are suppose to be antimicrobial. I also confirmed this by getting labwork one of the times I had this happen. My revere T3 and free T3 and T4 were both increased without an...
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    Columbia Researchers Report They Can Predict 84% Confidence Level Testing

    Yes but it has only recently been his goal to be the first to figure it out over the next 3 years! I only know this because I was creeping on his phone conversation while waiting for a meeting at Columbia. :nervous: I am not always a creep hahah. I just so happened to be there while he was on...
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    Columbia Researchers Report They Can Predict 84% Confidence Level Testing

    I agree about the antidepressants!!! I think one of the problems with the research through Columbia is that they just take patient samples from Clinicians who are contributing without minimizing variables like antidepressants and or diversity in many ways. Most people with ME due not have...
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    Columbia Researchers Report They Can Predict 84% Confidence Level Testing

    I am not going to message him yet. hahah I thankfully just received an email from one of his staff members with an application for their community advisory committee at Columbia which would work with the Researchers, clinicians, and community. I will be meeting with them and all member twice a...
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    Columbia Researchers Report They Can Predict 84% Confidence Level Testing

    For those of you who are not on linkedIn or not connected with Dr. Lipkin on LinkedIn, Here is what he shared the other day. Some promising news for the #MECFS community. In our most recent Nature Research (Publishing) manuscript, we explain findings that could provide insights into the...
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    Columbia Researchers Report They Can Predict 84% Confidence Level Testing

    This research confirms a lot of my own research. I am so pumped about someone like Dr. Lipkin who is suuper aggressive and competitive being on board with ME research! Do You know which clinicians Columbia is collaborating with for their research samples? Is it Just Dr. Levine?
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    CYP21A2 gene located in the highly mutagenic RCCX area may explain a genetic predisposition

    The RCCX theory explains a genetic mutation which may be the genetic predisposition for some people who develop ME. I know for certain my story fits with this theory and a lot of others as well. To put it simply, it is a mutation in the: There is a part of the genome, nestled among the immune...
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    NIH still needs patients

    Hi Brian, My name is Sarah. I recently applied to the NIH study this past month. I got ME 4 years ago, my last year of Medical school. My Life story pretty much fits ME criteria perfectly. I was a 2 sport collegiate athlete who went to school for 8 years and now I can not work after all my...