• 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. M

    SF area: Can you help? Stanford is looking for healthy controls

    Living in nor-cal has its perks- I've been able to get my whole extended nor-cal family and friends on the hunt. Between friends and friends-of-friends, we're sure to turn up some volunteers. For such a worthy cause I'll message every fb friend in the bay!
  2. M

    VSL 3

    Thank you all for your replies. I'm going to try it after Xifaxin, I just REALLY hope it is worth the money. :)
  3. M

    VSL 3

    Hi, I am wondering if anyone has tried the VSL-3 probiotic and if it is worth the high price? Also, I know there is a otc version and a prescription version- has anyone found a difference between the two, and has anyone's insurance covered the prescription version? (I apologize if there is...
  4. M

    Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

    Purple, I sent in mine early this afternoon and received an acknowledgement email a few hours later.
  5. M

    ME: bitterest row yet in a long saga

    If The Daily Telegraph is working in good faith with Dr. Shepherd on a piece about biomedical research into me/cfs as Firestormm noted above, this would be a huge get for us. After all, regarding me/cfs the DT is certainly one of the more skeptical papers out there. I too will be waiting...
  6. M

    What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

    I usually don't post in the forums due to push-crash, but I found this thread very interesting. I tend to be in agreement with Dainty, nanonug, and the others who see the new term as not helpful to patients, particularly w/r/t the new healthcare law and its bevy of regulations and taxes. In...
  7. M

    Chase Community Giving - what other successful groups are doing

    I can't access the chase page right now, but I'm almost positive prizes are against the rules. If so, they need to be reported directly to Chase. Can someone access the Chase page and see if this is correct? It seems especially unethical if teachers are bribing kids.
  8. M

    Round 2 - Please Vote again For WPI. Time is short. Do it now!

    I hope it's not too late for this suggestion- I have found I'm getting the most help for votes from family members' college fraternity and sorority alumni networks. My brother's frat alumni chapter network has been voting like crazy for us, as has my cousin's sorority chapter alumni network...
  9. M

    Win extra $ for WPI/CAA by fllooding their Chase pages with comments - extra prize!

    Sasha- I agree we shouldn't email. It runs a strong risk of annoying them and sends a message that we don't think the rules as already established aply to us. I think that would be the quickest way to get us out of the running for any extra money.
  10. M

    Win extra $ for WPI/CAA by fllooding their Chase pages with comments - extra prize!

    I also agree with the poster who mentioned commenting directly on the Chase community giving page. Chase surely moniters that page carefully, so organizations willbe vying there to catch their eye. A strong showing by us would make them take notice!!!
  11. M

    Win extra $ for WPI/CAA by fllooding their Chase pages with comments - extra prize!

    Thanks Sasha for starting the new thread. We have to do this so anyone reading would feel bad about awarding money to a bunch of marching bands when it could instead lead directly to treatment for people suffering so greatly!!! Make the comments heart-wrenching but not hysterical. These are...
  12. M

    Article: Dollars For Research: the BIG Chase Contest Begins

    I posted this elsewhree but think it's worth posting her: Everyone- please flood the WPI and CAA pages with comments about the desperate and URGENT need for this money!!! Remember- even if we don't make the top 5, Chase still picks one extra charity it deems worthy for a 200,000 dollar...
  13. M

    Round 2 - Please Vote again For WPI. Time is short. Do it now!

    Everyone- please flood the WPI and CAA pages with comments about the desperate and URGENT need for this money! Remember- even if we don't make the top 5Chase still picks one extra charity it deems worthy for a 200,000 dollar prize!! We need to make our organizations STAND OUT and tug at the...
  14. M

    B-12 - The Hidden Story

    Is there a recommended amount of potassium for this protocol? Also, what type of potassium? I have tablets of 595mg potassium gluconate, but have read potassium chloride may be better at treating hypokalemia (sp?). Thanks!
  15. M

    B-12 - The Hidden Story

    Hi Freddd, I've been on Rich's protocol for about two months but since the hydroxo was doing nothing for me I decided to switch over to using methyl b12 instead. I realize now the result is I'm actually somewhere in between the two protocols. I decided I want to try yours, but am wondering if...
  16. M

    Rich Vank's Simplified Methylation Protocol Poll

    Thank you Rich. Unfortunately i can't afford the testing right now. However, my most recent amino-acid urinalysis showed normal levels of all aminos, with the exception of taurin(?) (I don't have them here in front of me at the moment). I am on magnesium but will try starting the other...
  17. M

    Rich Vank's Simplified Methylation Protocol Poll

    I've worked up to the full protocol and have been on it every day for two and a half weeks now. I'm not feeling anything, good or bad. Was wondering if it would be ok to try increasing the b-12, or is this a no-no? Suggestions?
  18. M

    Rich Vank's Simplified Methylation Protocol Poll

    Does anyone know how quickly the Perque b12 should be dissolved? I know that in the B12 thread Freddd and others state that sublingual B12 should take around 45minutes to dissolve in order to be effective, but I don't know if that applies to this protocol. I ask because my mouth produces a lot...
  19. M

    Rich Vank's Simplified Methylation Protocol Poll

    Hi Rich (and anyone else with who can help), After two weeks, I've slowly worked my way up to one neurological health formula vitamin per day. I'm wondering if it's ok to start the perque b12 now, or if I should wait until I'm able to handle two vitamins a day, per the protocol? Also, should...
  20. M

    Rich Vank's Simplified Methylation Protocol Poll

    thank you vegas for the info. i will keep taking it slow and steady.
  21. M

    TONIGHT (2/22) / TOMORROW -- Tell Katie Couric your opinion of PACE!

    I have a bad feeling about this...must stay positive. Will do my best to write a full letter.
  22. M

    Rich Vank's Simplified Methylation Protocol Poll

    yes anne_likes_red, the reaction was to the neurological health formula alone. i'm ok with dealing with the flu like symptoms, as long as i know i'm not damaging my body. that's why i was concerned about the abdomen pains.
  23. M

    Rich Vank's Simplified Methylation Protocol Poll

    ps- i accidentally started with 1/2 dose and not 1/4 dose- won't be making tha mistake again! don't know if that accounts for the side pain, whatever it is. i was still surprised the multivit alone can such a strong reaction- gonna be a rollercoaster when i actally get to the folate!
  24. M

    Rich Vank's Simplified Methylation Protocol Poll

    I started the multivit this weekend and had a strong reaction- fluish aches, muscle twitching, and pains in the flanks of my abdomen. i also felt a little more energy. i had been expecting bad side effects with the b12 and folate, but not the multivit alone. i've lowered the doseage and will...
  25. M

    Rich Vank's Simplified Methylation Protocol Poll

    Well, I decided to just order the ACtifolate. Better to go witH the right one from the start- I figure there's going to be enough complications for a while as is, no need to mess it up now. So to be clear- the protocol calls for both the Folapro and the Actifolate?
  26. M

    Rich Vank's Simplified Methylation Protocol Poll

    Hi Rich and everyone, I just received my supplements today and will be starting the protocol this weekend. I'm very nervous but also excited! One thing though- I accidentally ordered the IntrinsicB12/folate instead of the Actifolate (note- since the protocol is no longer up on cfs research...
  27. M

    Rich Vank's Simplified Methylation Protocol Poll

    Thanks Rich. I am also considering which order to start the supplements- am considering starting with the multivit to try to build up some potassium before I start all the B12. But I really have no idea what I'm doing, so any and all advice is welcome! Also recently found out I tested...
  28. M

    Rich Vank's Simplified Methylation Protocol Poll

    Hi- I'm new to the forum (though I've lurked for some time!). I am planning on starting the simplified protocol within the next few weeks. I don't know if the lab Rich uses is re-opened, but even if it is I can't afford the tests. I was wondering if there are any basic tests (preferably...