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

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Search results

  1. A

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    I was unaware of this Never heard of it, i should look more into it. I personally do not think ME/CFS is caused by the gut. That said if for example it is a persistent infection some patients may have that infection in their gut so it might be their personal cause to our common disease...
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    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    A couple thoughts, one is that you could also use an enema or suppository instead of Shellac, just to be sure the delivery is to the colon. Also i am curious if @Hip had ever had a colonoscopy. The reason is that the prep is a clean-out solution that removes everything from the colon so the...
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    Ellie Fry, of The Mirror, publishes Millie's story: 'I can't walk, talk or eat - doctors don't believe what's wrong with me and I think I'm dying.

    At some point there needs to be professional consequences for doctors who violate their Hippocratic Oath.
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    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    Has anyone contacted Bernie Sanders himself and explained the plight of ME/CFS?
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    Ellie Fry, of The Mirror, publishes Millie's story: 'I can't walk, talk or eat - doctors don't believe what's wrong with me and I think I'm dying.

    Glad to see this. And they didn't get any of those PACErs to give an "expert" opinion on air made of lies.
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    Ellie Fry, of The Mirror, publishes Millie's story: 'I can't walk, talk or eat - doctors don't believe what's wrong with me and I think I'm dying.

    I like it, there was another instance a few years back here on PR where the mom was afraid of crossing the hospital, would not engage a lawyer and would not get outside help of any kind. I often wondered what happened to that patient, i assume they were medically tortured till hospital sent them...
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    AI reveals huge amounts of fraud in medical research | DW News

    I'll be much happier when PACE is retracted. Its not only fraud, it did not need AI to weed it out.
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    I have more sense than a team of Neurologists

    I re-read my post and i realize what i said could be interpreted as disagreeing with you which was not my intent. I meant they as in the neurologists that led to me creating this thread. Again my mistake on not explaining myself well.
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    I have more sense than a team of Neurologists

    Thanks Unfortunately FND is Hysteria with a new name and a boatload of pseudo scientific rationalizations. They need to make their house of cards sound plausible thus they have invented a "new paradigm" to give it legitimacy. BTW that "legitimate" FND website they frequently quote was created...
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    I have more sense than a team of Neurologists

    I had a sleep neurologist appointment yesterday, went fine, was just a followup. While there is no new treatment to try the neurologist made me laugh by observing that everything else with your medical conditions is falling apart but your sleep pattern seems to be the most stable part of your...
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    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    No worries, i very much understand what you want to accomplish and i agree with your goal. Do feel free to send something, it might help, especially if they are sent many letters. Just stick to the facts and explain that you want them to do better is my advice.
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    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    This is why the legal system and the media are needed. I am glad this story is now in a mainstream publication. I hope someone who knows someone gets it covered by the BBC. These people are not interested in learning, they are determined to use force and lies to murder an innocent patient...
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    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    I would skip the why do you abuse me/cfs patients lines, that is just going to make them lash out as they think they are doing god's work. The explanation that what they are doing is discredited however is exactly what they need to hear over and over and over again. These crazies like to...
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    I have more sense than a team of Neurologists

    Of course
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    I have more sense than a team of Neurologists

    I'm so sorry to hear that 😭 In my case i have tried all the common nutrients and they had no effect beyond correcting deficiency (i had a B12 deficiency) and folic acid reduces my headache severity. Do check out my Everything I have tried thread and if there is anything i have missed let me...
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    gaining weight after omega 3 (fish oil) supplementation after only 1 week??

    Everything from pesticides to heavy metals and more. We even have to be careful eating fish because of the mercury.
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    gaining weight after omega 3 (fish oil) supplementation after only 1 week??

    Alpha predators concentrate and accumulate persistent toxins. They move up the food chain. Egads. I'm also gaining weight as the ME progresses despite my not very large food intake, energy we do not use is stored. That said there are so many things that can affect weight from thyroid to...
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    gaining weight after omega 3 (fish oil) supplementation after only 1 week??

    Thanks for the vote of confidence :thumbsup: Its been the same discussion from thread to thread, the all meat diet is supposed to cure a huge number of diseases but the claims never stand up to scrutiny or simple common sense. Then the adherents pretend the conversations never happened and the...
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    gaining weight after omega 3 (fish oil) supplementation after only 1 week??

    I am tired of your misinformation. I didn't reply to your last post to not cause arguments, so i'm just leaving things here.
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    gaining weight after omega 3 (fish oil) supplementation after only 1 week??

    This is very strange, losing weight then gaining so much with not enough calories to account for it. How weight is regulated is not fully understood, calories in/calories out/excess is weight is simply incorrect. From hormone changes to microbiome composition to birth control pills and more...
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    Ron Davis Update

    Nope, just made it a bit harder to think straight, as if i had taken a very small dose of a sleeping pill.
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    Supplementing Manganese might unblock the Urea Cycle?

    @triffid113 your posts make me think of Hepatic Encephalopathy
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    I have more sense than a team of Neurologists

    His suggested treatments would work about as well as all that stuff from Acme that Wile E Coyote uses. However these neurologists are no super geniuses. I am reminded of this meme:
  24. A

    I have more sense than a team of Neurologists

    Because i pushed down with one leg while pushing up with the other (for leverage) and that i get dizzy when tired and lifting my hands over my head. And i refused to jog in the hallway. And that i only have multiple white matter lesions on my brain MRI and not anything else that indicates a...
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    I have more sense than a team of Neurologists

    Nope.
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    I have more sense than a team of Neurologists

    I likely have POTS but at a much lower severity than most ME/CFS patients. When i get up i can feel faint, and there are a few other issues But they are not a big deal, they are just normal to me and not at a severe level. When i am near the PEM threshold i have more issues with energy...
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    I have more sense than a team of Neurologists

    Given that they tested me for Parkinsons they are most certainly using GET on people who have half a dozen or more different conditions. I an see them getting people with ME/CFS Depression EDS Pots Seizures Sleep Apnea Osteoporosis Injuries/intractable pain Brain tumours Brain injury Workplace...
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    I have more sense than a team of Neurologists

    It is, what i find interesting is the circular logic, they have invented "irrefutable" explanations for everything and they act as if they cannot be wrong. And when you explain that 2 plus 2 does not equal 5 they turn on you. It is a cult built on a house of cards. Agreed. Confirmation bias...
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    I have more sense than a team of Neurologists

    They seemed a bit bothered about my non 24 hour circadian rhythm disorder diagnosis, i got the impression they wanted to claim it is also a symptom of FND but since a neurologist diagnosed it my guess is they thought they could not get away with that. I might be wrong on this but it is a strong...
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    I have more sense than a team of Neurologists

    So i went to the appointment and it was with the same neurologist i had the last appointment with, i did not know it would be the same person as i was dealing with a brain clinic and this is a physiotherapy centre. Of course he wanted to know if i accepted i have FND and that his treatment...