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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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Search results

  1. A

    The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review (O'Neal and Hanson, 2021)

    This is interesting... Case report: Clearance of longstanding, immune-deficiency-associated, vaccine-derived polio virus infection following remdesivir therapy for chronic SARS-CoV-2 infection https://pubmed.ncbi.nlm.nih.gov/36936936/
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    neuropsych testing?

    OK thanks. How much have people generally paid for these tests recently?
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    neuropsych testing?

    Does anyone know who is doing neuropsych testing for ME/CFS disability these days?
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    Anyone feel BETTER after getting the Covid vax?

    Harmful algae blooms produce toxins that can get airborne due to waves, evaporation, wind etc. I get very sick if I get near a pond or lake that has toxin producing Cyanobacteria with symptoms indistinguishable from CFS. I wouldn’t be surprised if those same toxins cause immune suppression. Most...
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    Permanent headache solution?

    I just had a scan show this as well. Did the antibiotics work for you?
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    Speaking to a neurofeedback clinician / researcher tomorrow. What questions should I ask?

    The problem with neuro feedback is that outside of a few well-defined conditions it really is the wild wild West. Practitioners have varying levels of experience ranging from a weekend course to years of experience. Even the ones that have a lot of experience don't really agree on which method...
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    Simon Wessely on Multiple Chemical Sensitivity (MCS): "related to expectations and beliefs"

    FWIW I developed MCS this year after exposure to several chemicals related to my car and repairing it/cleaning it. Antihistamines have no effect on the symptoms. Any similar substance causes the symptoms. I also have relatively significant mold reactivity.
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    Detection of Mycotoxins in Patients with CFS

    Any update on the current thinking for gliotoxin?
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Is there any literature suggesting that mycotoxins inhibit this process in the way it is being described? I ask because a lot of cfs patients report mold avoidance and or treatment has made them feel better.
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    Detection of Mycotoxins in Patients with CFS

    Do you still use the salt inhaler? Do you also feel this helps reactivity? Mine is bonkers... in need to take the edge off so I can try to treat. What have people found to help the intensification?
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    Fish oil Causing more fatigue?

    I wonder if some adverse reactions to "fish oil" have to do with the source of the oil? Many fish oils are in part from Mackerel and that fish is known to be high in histamine. I don't know if that translates to the oil as well, or just the protein. Whatever the cause, I don't do well on high...
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    Hypothyroid

    I think I developed ioaterogenic hypothyroidism when I had several scans that had iodine contrast die. Several months later I came down with CFS and when they tested my thyroid my TSH was borderline high at 3.8 and I had a small goiter. My antibodies were negative. I was put on a trial of...
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    Breaking News: ME is in the blood

    Well I hate to use an old computer term but why don't they just "diff" the me/CFS blood against a healthy control. Certainly that would be a good start. I think we have the technology now to do this, right? Then you'd know what proteins, toxins, pathogens, etc are different between the two...
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    Breaking News: ME is in the blood

    Transfusions usually are just red blood cells. How pure they are idk. But that's the intention. Does anyone know?
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    Breaking News: ME is in the blood

    If healthy cells put in ME serum poop out but not the opposite then I'd wager thet is a toxin in ME serum interfering with cell function. Either that or whatever caused ME that is in those cells takes longer than the time they observed to cause problems in the new host. I'd be a bit skeptical...
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    Detection of Mycotoxins in Patients with CFS

    Hmm I may have to try one of these foot baths. Do you think they help reduce reactivity? I have been trying mold avoidance and while I notice an effect my butt is kicked daily by exposures. I need to get to the point where I can improve my tolderance.
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    Are we close to a "unified theory" of ME/CFS? If so, what is it?

    Do any of these studies differentiate between active new mononucleosis and re-activation? A lot of people say they got CFS after mono, but how do they know they didn't already have EBV and then the immune system lost control due to another event? If there was a way to figure this out it would be...
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    Are we close to a "unified theory" of ME/CFS? If so, what is it?

    The Metabolomics data is interesting. However even if it is consistent across several studies, it doesn't say anything about what's causing the problem. I would think it's useful in helping narrow down the cause though. The thing that worries me about the Rituxan studies is the same. Perhaps...
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    Chris Armstrong's presentation for Solve ME/CFS October 20 2016 (metabolomics)

    Are we sure that oxygen is being delivered effectively from the blood to cells? The strange thing about ME/CFS is that sp02 looks normal, but V02 is not. So it would seem to suggest that oxygen is getting from the Lungs into the blood but not from the blood into the tissues. Or if it is its not...
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    Detection of Mycotoxins in Patients with CFS

    Has anyone used EDTA only? Also how long does it take to get passed the worsening of symptoms. I am on EDTA nasal spray and I think it makes me more irritable, tired, and my vision is kind of wonky.
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    No love of B2 here - a warning about riboflavin

    Has anyone had a metabolic work up with amino acid panels that suggest that they have one of the mitochondrial disorders that respond to riboflavin? My doctor does amino acid panels and some of the levels have been abnormal. But nothing has ever been conclusive. Also what is the SNP for MAO...
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    Feel better at high altitudes, no tolerance for humidity

    This phenomenon is reported in people who have had exposure to mold and/or biotoxins. Read about Dr Ritchie's Shormakers work.
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    Live tweeting from IiME conference, Friday 3 June 2016

    Thats too bad. It would be much easier for some of us if they offered a stream. Even after the conference, for the same cost of the DVD. It would save them the costs of making the DVD, and would open the audience to more people. Many conferences do this and there are sites that specialize in...
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    Live tweeting from IiME conference, Friday 3 June 2016

    Is there going to be a streaming link? I don't have a DVD player.
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    People's experiences of Bartonella

    I had a positive Bart test at Galaxy and was treated for approximately 9 months with Rifampin and Azithromycin. I don't think it helped my symptoms but my test did go negative. I'm not sure if I was just inadequately treated or if Bart wasn't a factor in my illness.
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    Jen Brea giving TED talk on 27 June

    So... streaming link?
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    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    Because Ron Davis is smart and motivated and the NIH hasn't taken the illness seriously or put more than superficial effort in? It's amazing what can be accomplished once someone smart focuses on a problem.
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    Gut bacteria destroyed after Flu, need help

    I started Align a few days ago (B Infantis) and its helping some. Maybe I'll try Jarrow Plantarum.
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    Gut bacteria destroyed after Flu, need help

    I think in my case what happened is something triggered histamine intolerance in my GI system. I think I have had some of this for a while, perhaps even before I had CFS, but its going bonkers now. I can't even eat meat without getting symptoms.