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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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Search results

  1. Aileen

    Clostridium Butyricum - A Game Changer?

    I am wrestling with this question right now. Since constipation is a major problem, I am afraid to add any pre or probiotic in case it feeds/colonizes something in or too close to the small intestine. I also would rather avoid antibiotics if possible. I am wondering if using magnesium citrate...
  2. Aileen

    Ion Channel SNP Paper

    @Valentijn Just to be clear, the mutation is the "A1" column in Table 1 of the paper. Correct?? If so, I have only one homozygous mutation and that is not one considered significant. Most of my results are heterozygous (one copy of each). I believe you have my data, Valentijn. What is...
  3. Aileen

    Immunobiotics - a new therapy or more pseudo-scientific nonsense?

    Thank you Halcyon and Jonathan Edwards. Nice to know I was right but we shouldn't have to be scientists to decipher product labels at a health food store!!
  4. Aileen

    Immunobiotics - a new therapy or more pseudo-scientific nonsense?

    Accidentally stumbled across this product called "Immunobiotic Immuno-LP20" [link here]. It sounds great (doesn't everything?) but I am skeptical that it could do much. It seems to me that they are promoting this as a cross between a probiotic and a vaccine. It seems to be neither. It is a...
  5. Aileen

    Hashimoto's thyroiditis

    Sorry you are having such a frustrating time. I don't have hashi's but have had hypothyroid symptoms for years and even been on armour thyroid a couple times. No goiter though. You might try taking selenium. It along with iodine is key for the thyroid. Iodine is needed to make the thyroid...
  6. Aileen

    Voting over for Round 1 of Aviva contest.

    @frenchtulip I think you may be misunderstanding how they are picking the ideas that qualify for the next round. We must be in the top 15 in the large-prize division, not the top 20. They have changed things this year, and it is very difficult to find info on the site this year too! :( It...
  7. Aileen

    The Concealed Causes of "Thyroid Resistance"

    would supplementing iodine, rather than the hormones themselves be more beneficial?
  8. Aileen

    Nat'l ME/FM Action Network in Aviva contest for $100K for ME/FM Biomedial Research!

    @frenchtulip Sorry to be the bearer of bad news but this is a non-starter. Because there is time to fix this, I am going to detail exactly what I think is wrong with it. I hope others will offer their opinions too. If we are to win, we must get the general public and members of an insurance...
  9. Aileen

    Free Coursera course: Gut Check: Exploring your Microbiome

    This sounds pretty basic so I'm going to give it a try too.
  10. Aileen

    My new autonomic cardiologist wants to hospitalize me for tests!!!

    @Gingergrrl So sorry you are having such a rough time!! :hug: I thought the reason they started you on the Midodrine in the hospital was so that you could get proper help if you had a problem. Isn't that the point of being in a hospital?? :aghhh:
  11. Aileen

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Vegas, thank you for putting so much time and effort into that long and thoughtful post. You have some very interesting ideas. This definitely gives me something to explore. We are partially veering off-topic yet again so perhaps we might consider starting a related thread. Just not sure...
  12. Aileen

    CFS/ME needs to go viral.

    the car is a great representation Graham! :thumbsup: The only problem with the darned initials is that most people will see the word "me".
  13. Aileen

    Sleep reversal advice

    Has your son had a sleep study done? Some patients find treatable sleep issues this way. Try talking to the doctor just about his sleep issues. I'm another long time patient and have gone through multiple types of sleep issues. The "coming alive a couple hours before bedtime and up all...
  14. Aileen

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Just about everything I'm afraid. Things like perfume, cleaning chemicals, gasoline are really bad but also "natural" odours like food smells and cut grass. We have not been able to cook in the house for years due to my sensitivities. Today I managed to eat some canned salmon, but it had to...
  15. Aileen

    Has anyone heard of the "interferon status test" (measures leukocyte IFN alpha and gamma production)

    If we could get this kind of testing it sounds like one way of identifying a subgroup of patients. That would be huge!!
  16. Aileen

    CFS/ME needs to go viral.

    We are not required to use the letters M and E to come up with the words. It was natural to think of this first but the 'E' is presenting some challenges. Maybe the slogan should be 'M.E. is such and such'. Like Leopardtail's example 'Coke is it'. It should be a positive message M.E. is...
  17. Aileen

    CFS/ME needs to go viral.

    Hmm ... I think we need to keep the words themselves short as well. If a 10 year old won't get it, it's too complex.
  18. Aileen

    $2 Million Grant Awarded to Study ME/CFS Biomarkers

    Great news. The team at Nova Southeastern seems to be very good at getting grants. Perhaps Dr. Lipkin could get some help from them?
  19. Aileen

    CFS/ME needs to go viral.

    I definitely agree. "Excruciating" works for me. Do we really need to have one of the letters as a noun. Might it not work better if they are both adjectives? And the "different messages" angle could be a noun. For example. M.E. is ...Merciless and Excruciating. (period) (next line, the...
  20. Aileen

    Antibiotics

    The problem I have with silver is this: Once you put it in your body, how do you get it out? Silver is not an element that is part of us or that we have mechanisms for breaking down and excreting as far as I am aware.
  21. Aileen

    Resistant Starch--discussion of benefits/adverse effects only

    I've been using the other Swanson's product (FiberAid). I just ordered some of the other one (ResistAid) that you have been using. Now I'm really anxious for my order to get here!
  22. Aileen

    CFS/ME needs to go viral.

    Okay getting a bit silly now, but this just popped into my head. M= meteoric E= explosive projectile vomiting ... Yeah, that's right Dr. X at the front table. Better be careful what you say, I've got you in my line of fire! :lol:
  23. Aileen

    Resistant Starch--discussion of benefits/adverse effects only

    @ahmo Great news! :thumbsup: Which form of LAG are you trying and a what dosage?
  24. Aileen

    CFS/ME needs to go viral.

    If we are talking about a slogan to hammer home a message for a CDC or other govt body meeting or publicity campaign, how about this? M = Merciless E = excruciating pain Pain is my worst and most difficult to cope with symptom. Well, a number of pain symptoms actually. If we add in another...
  25. Aileen

    CFS/ME needs to go viral.

    I hadn't thought of that. It's never simple is it? :( Why is coming up with a simple idea always so complicated and difficult???:aghhh: I wonder about a challenge where you have someone without ME wear an "ME suit" to find out what it feels like, at least partially, and how hard it is to do...
  26. Aileen

    CFS/ME needs to go viral.

    Here's a funny animal video. [here] As an example, it would be fun to have that turtle pushing his ball down the side of the pool, playing with it at the finish line, while the man in the pool it is "racing" against tries to get to the end. In addition to the pool, maybe add ankle weights. Of...
  27. Aileen

    CFS/ME needs to go viral.

    Well, videos with cute animals tend to get people's attention. Maybe have a very slow moving animal on dry ground "racing" side-by-side with a big, burly, muscular guy in the mud, pool etc ... Of course, the animal has to be doing something cute at the finish line while the man tries to get there.
  28. Aileen

    Confused about chelation (the process) and chelated supplements -- what is the difference?

    @halcyon So, if I understand you correctly, if I buy, for example, "chelated molybdenum" then I would likely be getting more molybdenum used by my body than if I buy "molybdenum". Since I have MCS and have a hard time tolerating everything, if I don't tolerate the mineral very well then I...
  29. Aileen

    Confused about chelation (the process) and chelated supplements -- what is the difference?

    I read people are doing "chelation" and using things like ALA, EDTA or DMSA (whatever they are). I think this means they are using these substances to bind to unwanted items like mercury to escort them out of the body. But ... I read on the supplement labels that this "chelated" form of Vit or...
  30. Aileen

    High Iodine supplementation - Iodoral/Lugols

    Has anyone managed to decrease MCS symptoms, especially hypersensitivity to odours by using iodine?