• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. veganmua

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    What's the petition link?
  2. veganmua

    Tracking CCI / AAI MRI & Treatment outcomes

    Hi, would you be willing to share the name of the neurosurgeon in Belgium? Also, if you (or anybody) has any information about getting this diagnosed in the UK, I'd be grateful. I'm currently waiting for a rheumatology referral to get assessed for EDS, who can then refer me for MRIs. I want to...
  3. veganmua

    Is it possible to have IVIG in the UK? How and from who?

    I'm not holding out much hope for getting it on the NHS, but wondering if it is possible privately.
  4. veganmua

    Please vote! Poll: Best UK ME research charity to donate to?

    I want to put collection boxes in some local shops and businesses, but I can't decide which charity to choose. I know one of the UK charities supported a proposed trial run by some of the old PACE characters, but I can't remember which one that was.
  5. veganmua

    Putting collection boxes in local shops and businesses

    I want to raise money for ME research by putting collection boxes in local shops and businesses. Initially, I wanted to raise money for Open Medicine Foundation, but I think I will stick to a UK charity to avoid confusion or complications. My shortlist is - ME Association Ramsay Research...
  6. veganmua

    Do I need to tell my doctor if I have Australian flu?

    I am so ill, I have severe ME anyway. Is there anything they can do, or will they just tell me to take painkillers and wait until I'm better. Been really ill for a day and a half.
  7. veganmua

    Has anyone heard of Saikosaponin A?

    I've heard it's an immunosuppressive here http://S1567576909001349.com/science/article/pii/S1567576909001349 And it also treats a mouse model of adhd https://www.hindawi.com/journals/ecam/2017/2695903/ So would it be any use for treating ME?
  8. veganmua

    Detox from Tattoo Ink

    Yeah, I love tattoos, but that study put me off. I do wonder if there is a higher incidence of certain ailments among heavily tattooed individuals. It's not clear if the ink accumulation is having measurable affects. Are there any other studies out there?Apparently there are safer inks, such as...
  9. veganmua

    In what form is B12 stored in the liver?

    Yup, B12 or just cobalt, which allows the cow's gut bacteria to produce the B12, which gets reabsorbed. Our gut bacteria can do this but as non-ruminants, our intestines are too short for it to get reabsorbed.
  10. veganmua

    In what form is B12 stored in the liver?

    They get B12 from the bacteria that produce it living on the grass they consume. But all cows raised for human consumption are supplemented with B12.
  11. veganmua

    Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

    I've been looking into it and it seems CBD is metabolised by the same liver pathway as my antidepressants, so taking them together could cause toxicity. I'm already on a very high dose, so I doubt it'd be safe! Annoying because I was hoping it could treat my RLS and periodic limb movement disorder.
  12. veganmua

    Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

    A vegan keto diet is certainly possible, but adding low FODMAP into the mix will be tricky. I guess I could see if a dietitian would be willing to draft me a meal plan? I've been thinking of trying CBD oil, but I wouldn't want to try anything containing THC. I'm 'straightedge', don't even...
  13. veganmua

    Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

    Hindsight is 2020 isn't it?
  14. veganmua

    Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

    I do drink protein shakes and eat coconut oil for saturated fat. I also put liquid aminos (a condiment) on my food. I supplement methylcobalamin and hydroxycobalamin. I'm already on a low FODMAP diet for my IBS, not sure how feasible adding keto to the mix would be. Do you have any links to...
  15. veganmua

    Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

    I haven't been able to work as a makeup artist since 2015, and I would say I wear makeup once to twice a month now. The thing is, I've tried a lot of supplements in my quest for wellness, and I've never had a bad reaction. Usually there's no difference or improvement. Medications tend to have...
  16. veganmua

    Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

    I'm getting so much worse. Looking for anything I can do to improve the situation
  17. veganmua

    Write to your MP in 5 minutes about the ME/CFS NICE Guidelines

    Thanks! Done and forwarded to a couple of family members too.
  18. veganmua

    PIP refused for CFS - worth appealing?

    Hi, could you tell me more about this legal clause?
  19. veganmua

    Is Poop Doping the Next Big Thing?

    People might start stealing athlete's poop and selling it on the black market! Or should I say, brown market! :lol:
  20. veganmua

    Is Poop Doping the Next Big Thing?

    A lot of human gut bacteria haven't even been discovered, and most of the good bacteria isn't available to take as a probiotic. We may know it's there, but unless someone is culturing it and putting it into pills, a poop transplant is your best bet!
  21. veganmua

    Is Poop Doping the Next Big Thing?

    I think there'll be poop banks soon. Like sperm banks, you can read info about each pooper before you choose the perfect donor for you. People will be bidding for celebrity poop on eBay in the hope of receiving the bacteria responsible for talent! :D
  22. veganmua

    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    I have MTHFR and a few other mutations in methylation related genes. Supplementing with methylfolate, methyl & hydroxycobalamin and other methyl support supplements did little for me. For me, and perhaps many others, I think methylation is just one part of the puzzle. I watched this episode...
  23. veganmua

    Is everyone from Phoenix Rising and at the London Conference safe tonight?

    I knew that, I was watching the news reports about it for hours, and I used to work in London a lot. I have no idea why I typed Tower Bridge! Damn brain fog! Thanks for correcting me, though. At least I got the right bridge in the map!
  24. veganmua

    Is everyone from Phoenix Rising and at the London Conference safe tonight?

    Well, the attack was at Tower Bridge, and the Conference is in Westminster. Hopefully, everyone from the conference is staying close to the venue and didn't decide to go out to London Bridge. But obviously, I haven't heard anything! Pic- The conference venue vs London Bridge at the top...
  25. veganmua

    should i pay $90,000 for stem cells?

    If you have $90,000, I would suggest donating to charities doing real research like OMF.
  26. veganmua

    Severe ME/CFS Homebound Study

    Hmm... Can they not send out nurses for homebound patients?
  27. veganmua

    Got treatment in the EU and doing well starting remission

    Which autoantibodies were associated with Rituximab response? I'm thinking of getting autoantibody tests, and I'd like to know where to start!
  28. veganmua

    How do I get an ATP profile test in the UK?

    You can get the test from biolab.co.uk. I believe it is part of the MECFS profile. For more information you can email them at lab@biolab.co.uk. Good luck.
  29. veganmua

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    Can anyone TL: DR the mass of text at the beginning for the brain fogged among us?
  30. veganmua

    Janet Dafoe's Birthday Donation Campaign!

    I tried again on Facebook, it looks like the PayPal option has been removed. I put all my card info in, then it wouldn't go through as it wouldn't accept my UK postcode.