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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. SB_1108

    MillionsMissing 2018 Graphics

    Also MEAction has a letter to Collins that you can sign... https://www.meaction.net/2018/05/11/letter-to-francis-collins/
  2. SB_1108

    MillionsMissing 2018 Graphics

    Here are some quotes from articles in the past several years where Collins has promised to help the ME community: Collins says NINDS Director Walter Koroshetz is “determined to move pretty fast on this,” including soon issuing a new request for proposals to extramural researchers. “Give us a...
  3. SB_1108

    MillionsMissing 2018 Graphics

    It is very easy for someone like Francis Collins to reallocate funds. The increase that Collins gave ME last year was peanuts, he is trying to do the minimum possible. Unfortunately, ME continues to be a low priority for NIH. The first MillionsMissing protest began because of a desire to...
  4. SB_1108

    MillionsMissing 2018 Graphics

    These graphics were created by an award winning graphic designer for the 2018 MillionsMissing events. Feel free to share!
  5. SB_1108

    Polyphagia (excessive hunger/appetite) and ME/CFS

    Excessive hunger has been a major symptom for me since my onset of ME almost ten years ago. I've asked countless doctors about it but never found any remedy or way to manage it. Mine is pretty extreme. I eat large meals hourly and spend most of my income on food. All energy exertion goes to...
  6. SB_1108

    Reddit event with Francis Collins

    The AMA with Francis Collins has been posted on Reddit and people have started submitting questions. The way Reddit works is that the most upvoted questions are usually the first seen and the first answered. So please ask your question for Dr Collins or upvote one that has already been asked. So...
  7. SB_1108

    Acetate Smell

    @Learner1 Thank you this is helpful. The six foods I can eat are 1) Chicken, 2) Zucchini, 3) Kale, 4) Green Beans. 5 and 6 are more questionable... I can eat a SMALL amount of pecans to prevent myself from going into ketosis and I can occasionally eat some other lean forms of protein like...
  8. SB_1108

    Acetate Smell

    I have noticed that I can smell acetate/acetone on my skin, in my urine and stool. At first I thought it was ketones because it’s a sweet chemical smell but the ketone tests are negative. My Organix Acids test shows very elevated acetate as well as my stool analysis testing. The doctor...
  9. SB_1108

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    I’ve always read about EMF sensitivity in ME and Lyme patients but I’ve never believed it was a real thing. However I’m having a new “symptom” that I feel may fit that description and I wanted to get people’s thoughts on here. At night when before I go to sleep I turn my phone on silent mode...
  10. SB_1108

    Anyone heard of two siblings with ME?

    My sister and I both have ME. I was diagnosed in my twenties but she was diagnosed in her forties. In Jen Brea’s TED talk she mentions that ME sometimes runs in families. I’m not sure where that source was from?
  11. SB_1108

    Poisoning the Mitochondria

    I know this is an old thread but I've been reading through a lot of Radio's posts and he was really onto something with mitochondria poisoning by sulfide. He needs to be unblocked! I've been sick with ME since 2009 but I have had a worsening for the last two years. I have been all around the...
  12. SB_1108

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I did it for about a month without the oxygen concentrator but realized that I needed to change my supplements and buy the concentrator. So I’m about to start back next week. The reason why I needed the break is because I kept getting sicker (not necessarily related to the mhbot, just generally...
  13. SB_1108

    Post in /r/medicine

    /r/medicine has basically started deleting every ME/CFS Thread. I’ll be surprised if the mods keep it. They can be particularly nasty on /r/medicine towards patients. Example: https://www.reddit.com/r/medicine/comments/73t52q/the_cdc_finally_reverses_course_on_treatment_for/ And this is what...
  14. SB_1108

    Esther Crawley's BristolTEDx talk video (Nov. 2, 2017)

    I think we should just ignore this. Maybe someone who has already watched it could give a summary but let’s not add to the view count.
  15. SB_1108

    Berberine is toxic to the miotochondria

    SIBO and dybiosis
  16. SB_1108

    Berberine is toxic to the miotochondria

    An herbal antibiotic called Uva Ursi. However the year before trying Uva Ursi I had addressed vitamin/mineral imbalances and dysbiosis and I felt like that gave me the boost I needed for the Uva Ursi to help. Berberine seems to have reversed all of the prior benefits.
  17. SB_1108

    Paraprevotella: the cause of my atypical ME?

    I guess what I meant to say is, I've not read anything specific regarding DIY FMT being less effective than what is offered by medical providers including Dr. Borody or Taymount clinic... the success rates are generally the same. However almost all current research is based on cdiff treatment.
  18. SB_1108

    Paraprevotella: the cause of my atypical ME?

    I have considered it but it is difficult to gain access to helminths. Can you tell me more about this? I'm not aware of any methods that Taymount uses that would better preserve anaerobes? I did both the top down and bottom up FMTs. So I pretty confident volume isn't the issue. I have read...
  19. SB_1108

    Paraprevotella: the cause of my atypical ME?

    I definitely agree with you @Cheesus - no one supplement will fix this ridiculous disaster in my gut. The bile salts are just a supplement I'm considering ordering to see if it alleviates any of my issues since Dr Myhill recommends it. I have tried approximately 50 FMTs without much success...
  20. SB_1108

    Hyperbaric without extra oxygen

    I purchased the smallest Newtown... I like it, but I don't have any comparisons.
  21. SB_1108

    should i pay $90,000 for stem cells?

    As promised I am providing an update on my stem cell procedure... It's been almost four months since I received the stem cells and I have not noticed any improvements other than not needing my thyroid medication anymore. I was told to wait at least six months, if not nine months to determine if...
  22. SB_1108

    Hyperbaric without extra oxygen

    So I tried the fan and I love it! It definitely helps! It's almost a necessity I think? :) But I still decided to purchase the oxygen concentrator just to try and get the full benefit from HBOT. Will report back on how that works for me.
  23. SB_1108

    Paraprevotella: the cause of my atypical ME?

    I wonder if this product is worth a try... http://www.jarrow.com/product/284/Bile_Acid_Factors
  24. SB_1108

    Paraprevotella: the cause of my atypical ME?

    Just wanted to chime in and say that I also have an overgrowth of Prevotella and/or Bacteroides. I've tried every herbal and prescription antibiotic and they have all made it worse. The initial culprit of the worsening was caused berberine but other antibiotics like Rifaximin have only magnified...
  25. SB_1108

    Invisible Illness Protest/Advocacy Event

    I realize that Phoenix Rising has enough drama right now but I thought I would change the subject and add some new drama. ;) I would like to hear people's opinions on a new advocacy approach. I'm thinking of something similar to MillionsMissing but larger. I'm interested in reaching out to the...
  26. SB_1108

    Hyperbaric without extra oxygen

    I've been trying out my new HBOT this week and I have not been using an oxygen concentrator. After the dives, I have felt that I wasn't getting enough oxygen, which is the opposite of what I thought I would experience. The HBOT heats up the air about 10 degrees and it starts to feel really...
  27. SB_1108

    Berberine is toxic to the miotochondria

    Tried it - didn't work. Now I'm trying HBOT to see if that will help. But thank you for the suggestions - keep them coming! I will try anything! :)
  28. SB_1108

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    And the last sentence of my post (which you omitted above) was about that exactly. Regardless, discussing individual grants in relation to the overall program budget is pretty standard. Not trying to highjack the thread but Dr Davis' denial is a huge deal and there are multiple ideas for...
  29. SB_1108

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Omg you can't be serious!?! I'm glad the NIH is taking steps but this amount is not enough to make a difference. They need to ramp up funding substiantially before I will be sending any thank you notes. We should be receiving at least $188 million based on disease burden...
  30. SB_1108

    Berberine is toxic to the miotochondria

    I had a near remission (or at least the closest I've been to "normal" since becoming sick) in 2014. My doctor suggested I take berberine to address sibo (which I felt was the remaining piece of the puzzle to full health). In 2015 berberine permanently worsened my health. I have tried for years...