• 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 (FM), 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. Tony

    Nexavir is the same drug as Kutapressin

    Thanks Sushi, I wonder what happened for Nexco to tell me that? Maybe something awry with our customs...will have to check.
  2. Tony

    Help me find some facts! :)

    There's this from the CFIDS society in 2010 referring to a 2004 study: http://webcache.googleusercontent.com/search?q=cache:iVtBtWwSCkIJ:www.um.es/lafem/Actividades/CursoBiologia/Consultas/Actual-chronicfatigue.pdf+&cd=8&hl=en&ct=clnk&gl=au "For others, CFS has a profound impact, and they may...
  3. Tony

    Nexavir is the same drug as Kutapressin

    I was using Nexavir/Biopressin, then 4ME, then back to Nexavir due to availability. In 2013, Nexco Pharma in the US told me that they were no longer manufacturing Nexavir so that avenue closed. This also meant their New Zealand partner could no longer produce Biopressin (Nexavir by another...
  4. Tony

    The H2S Test Poll Part I: ME/CFS Patients

    I think because if you take too much Betaine you can get the runs. So just with the main protein meal may be enough for most? Everyone's a bit different though, as always...
  5. Tony

    Bravo Probiotic vs. the original maf314

    This post by Suzanne might be the answer: http://forums.phoenixrising.me/index.php?threads/maf-314-all-natural-gcmaf-plus-probiotics.11623/page-8
  6. Tony

    Does brain fog ever go away with treatment?

    Hi Redline, I'd keep looking for a decent doc who doesn't fob you off. There could be various explanations for your lowered cognitive function. Possibly a form of orthostatic intolerance with less blood being supplied to the brain, gut dysbiosis etc. Each of us is a bit different so you...
  7. Tony

    where to get MAF 314?

    MAF314 is made by mixing the proprietary ingredients with cow's milk and colostrum. The 'cooked' mix then becomes yoghurt like in it's consistency. Prof Ruggiero explains it here:
  8. Tony

    Nature's Bounty $20,000 Voting Contest:help, FAQs and Updates (Vote from any country)

    Reach for the Rainbow staff and coordinators are now voting for us! They will hopefully very soon ask their members to vote for ME/FM Action Network too. So please remember to also vote for Reach for the Rainbow daily. Their votes could win us 3rd and ours 1st for them.
  9. Tony

    KDM and sleep

    The IACFS/CE Primer (2012) mentions clonazepam (Klonopin) at very low dosage, 0.25-1mg as well as Gabapentin and others. Clonazepam is also an anti-seizure drug. I see Cort produced this last year which is a great guide to various expert ME/CFS doctors thinking on sleep...
  10. Tony

    Vote from Any Country for ME/FM Charity to Win $20,000!

    Reach for the Rainbow staff and coordinators are now voting for us! They will hopefully very soon ask their members to vote for ME/FM Action Network too. So please remember to also vote for Reach for the Rainbow daily. Their votes could win us 3rd and ours 1st for them. Alberta Animal...
  11. Tony

    Has anyone had experience with the CFS Discovery Clinic in Donvale, Melbourne, Aust.

    Regarding food intolerances, Prof De Meirleir finds that about half of ME/CFS patients have fructose malabsorption and a smaller group lactose intolerance (20%). Some have a problem with casein, a protein in dairy. While not everyone has a problem with foods, with these relatively high...
  12. Tony

    Please vote for ME/CFS Australia this month. $5,000...

    I checked with the organisers and it's only Australian residents who are eligible to vote. Sorry folks, I should have checked earlier... It doesn't matter much this time as we're 400 odd votes behind. Maybe John could enter again another month.
  13. Tony

    Please vote for ME/CFS Australia this month. $5,000...

    Bumping this one...we're a long way behind and need many more people to vote. $5,000 makes a big difference to a small organisation like ME/CFS Australia.
  14. Tony

    Please vote for ME/CFS Australia this month. $5,000...

    $5,000 up for grabs. Please vote for John Holdings dream and win for ME/CFS Australia. Thanks...:) http://sunsuperdreams.com.au/dream/view/help-save-lives-myalgic-encephalomyelitis Vote once during this month, February, 2013. May as well do it now...!
  15. Tony

    2nd and final round voting for ME/CFS Australia till Dec 31

    A message from Alison Copley, CEO, ME/CFS Australia via Co-Cure today: ME/CFS Australia( VicTasNT) is the Australian Tupperware Charity of Choice for the next 6 months. A big thank-you to the 2,090 voters from around Australia and overseas from every continent who got behind our organisation. We...
  16. Tony

    Looking for a good doctor in Brisbane

    This list may be helpful, but you may wish to call first to see how they treat ME/CFS. http://www.acnem.org/modules/mastop_publish/?tac=32
  17. Tony

    2nd and final round voting for ME/CFS Australia till Dec 31

    Thanks for the info Purple. I didn't know that about the Tupperware demonstrators. That's great! I think one thread is enough but that's just my view...
  18. Tony

    2nd and final round voting for ME/CFS Australia till Dec 31

    Taken and slightly edited from a message from the CEO, ME/CFS Australia. Please vote a second time. Voting closes Monday DEC 31st at noon. In this 2nd round ME/CFS is lagging terribly, we are well behind in 2nd place. Our FIGHT for ME needs your vote now. Our logo currently has 430 'likes' but...
  19. Tony

    Australian Specialists including Neurologists

    Hi Tania, you could try and get your doc to speak with Dr Chris O'Callaghan who specialises in OI and knows a bit about ME/CFS. He's spoken at several ME/CFS conferences here in Melbourne. Address: 455 Upper Heidelberg Road, Heidelberg, VIC 3084, PH: 94592699 Just to add the correction re...
  20. Tony

    De Meirleir and sugar

    I have a bottle of Now Foods, Better Stevia which is labelled as zero carbs. There are other products that contain added things mixed with stevia that may give the product some carbs.
  21. Tony

    De Meirleir and sugar

    "With its steviol glycoside extracts having up to 300 times the sweetness of sugar, stevia has garnered attention with the rise in demand for low-carbohydrate, low-sugar food alternatives. Because stevia has a negligible effect on blood glucose, it is attractive as a natural sweetener to people...
  22. Tony

    Gluten 'Sensitive'? lab results..

    Hi jack, If you have a sensitivity to gluten then malabsorption could be an issue. Gluten can harm the villi which we absorb our foods through in the gut. As global suggests, do a trial for (at least a month?) and see if you notice anything. Fructose malabsorption could also play a part...
  23. Tony

    In Memory of Rich Van Konynenburg.

    It's very sad to hear this news. Rich was a wonderfully generous man who helped many people, in many different parts of the world.
  24. Tony

    Voting for a student with ME/CFS (non facebook)

    Thanks for clarifying Alex, I got a couple of contests mixed up... Sorry folks, it does require Facebook....!
  25. Tony

    Voting for a student with ME/CFS (non facebook)

    Apologies for the incorrect heading. This contest does require Facebook. I just saw this from the Sth Australian society website (though the url was incorrect on their site...) A young NZ student with ME/CFS is hoping to win a $10,000 scholarship to help her study psychology. Voting ends...
  26. Tony

    De Meirleir and sugar

    As far as I know, stevia is fine as an occasional sweetener...according to wikipedia it's mostly glucose. http://en.wikipedia.org/wiki/Stevia#Mechanism_of_action With diets, it's probably more individual. Some sugars are fine for some people in small amounts. I find it easier to just avoid...
  27. Tony

    De Meirleir and sugar

    Most likely depends on the individual's gut makeup...some will, some wont is my guess...:) But on a breath test after a fructose challenge, people with fructose malabsorption will produce more hydrogen and some more methane than "normal".
  28. Tony

    De Meirleir and sugar

    Yes, table sugar is equal parts glucose and fructose. It is generally well absorbed by those with fructose malabsorption in very small amounts. We're all different but generally sugar is best kept to small amounts in our diet. Personally I eliminated all additional sugar for many years then...
  29. Tony

    Low E-Coli and Very High Lactococcos Lactis

    Maybe. But Bioscreen in Melbourne require the sample to reach them within 48 hrs. They provide the sample kit, how to etc. Email is customerservice@bioscreenmedical.com.au You may not really need to use them? In the US there's another lab that Prof De Meirleir uses (he used Bioscreen for Aust...