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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. R

    In Memory of Rich Van Konynenburg.

    As most of you already know, there will be a public event honoring Rich: On Saturday, October 6th, at 10:30 a.m., a memorial and Celebration of Rich's life will be held at Cornerstone Fellowship in Livermore. This facility is very large, and anyone who would like to attend is welcome. 348...
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    In Memory of Rich Van Konynenburg.

    Heartfelt thanks for all of the kind words and condolences. Diana Van Konynenburg
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    A Tribute To Rich Van Konynenburg

    Thanks to all for the remembrances of Rich and for the kind words of love and support. They are of tremendous comfort to me and to our family. Diana Van Konynenburg
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    In Memory of Rich Van Konynenburg.

    Hello All. I have just finished reading each of the comments that have been posted on this thread. The outpouring of love and caring for Rich and for me is overwhelming. Thank you for being a big part of his life. He cared deeply for all of you. Someone mentioned trying to compile Rich's...
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    In Memory of Rich Van Konynenburg.

    Some sad news from Rich Van Konynenburg's wife Phoenix Rising Threads: A Tribute To Rich Van Konynenburg Video of Rich Van Konynenburg's memorial service now online Rich VanK Memorial Tree from PR Community. Rich Van Konynenburg, a photo montage This Sunday, Nov 18: Memorial Teleconference...
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    Methylation Pathway Analysis

    Hi, Gamboa. The methylation pathways panel from Health Diagnostics costs $295 in the U.S. From Canada, there would be additional shipping costs (via FedEx) and there would also be a blood draw, which you may have to pay for. I think someone else from Canada just posted about their shipping...
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    Dmsa/Methylation, rich fredd?

    Hi, August59. There was a paper published some years ago, and I think that Dr de Meirleir was one of authors, that said that most of the nickel comes in with food. It could be that processed foods are higher in nickel, because stainless steel food processing equipment, including the...
  8. R

    Myers cocktail anyone?

    Hi, voner and the group. Myers cocktails have provided temporary help to some PWMEs/PWCs. Many are deficient in at least some of the ingredients of the Myers cocktail, so it makes sense that it would help, at least to some degree. If you read the paper by Dr. Alan Gaby that nano posted, you...
  9. R

    You guys need to try this Now Acai, seriously!

    Hi, nan. Thanks for reposting this. There definitely seems to be more going on with acai than simply antioxidant support! In the context of the good old GD-MCB hypothesis (am I like a dog with a bone, or what?) perhaps acai is also lowering inflammation, which would lower oxidative stress as...
  10. R

    ESR - always low in ME??

    Hi, SOC. I don't think it's run routinely in the U.S., but it's a very inexpensive test. The blood is allowed to sit, and the rate of settling of the red blood cells is measured. I think doctors are more likely to order it if they are checking for inflammation. Best regards, Rich
  11. R

    What about inherited immune deficiencies?

    Hi, all. I just want to note that I think that Ian Lipkin is right in the statement reported below: "While leaving the viral question open Lipkin suggested the bodies response to viruses may play a larger role than the viruses themselves. People with ME/CFS could be reacting abnormally to...
  12. R

    Ya'lls thoughts on Nitric Oxide/Pall Protocol. Rich?

    Hi, all. My most recent response to Marty Pall, which was published in the Townsend Letter, can be found here: http://www.thefreelibrary.com/Response+to+comments+from+Professor+Martin+Pall+on+%27treatment+study...-a0292088387 Best regards, Rich
  13. R

    Rich - Methylation Results.

    Hi, Ema. As stated in what you quoted from Doctor's Data, the urine test is more sensitive. However, it is dependent on the kidneys operating normally, which they usually do in ME/CFS. Also, for some species, a high urine level does not necessarily mean a high blood level. Taurine is an...
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    Help needed - B12 Binding Capacity test result

    Hi, seadanc. AQG has given you some good info, in my opinion. Here's a site that gives a good discussion of this test: http://www.clinicallabtesting.com/sites/clc.nsf/c02b822416468c51852577d400624142/c8fefaf5ca76b24e85257934003f0299!OpenDocument Basically, it tells you how much more B12...
  15. R

    mito/muscle symptoms

    Hi, Sherlock and SOC. I think SOC basically has it right. Mitochondria produce ATP. The most difficult exercise when there is mito dysfunction is exercise that calls upon the mitos to continue to produce ATP at a relatively high rate. Muscles use ATP to relax their fibers to get ready for...
  16. R

    Second edition of Chronic Fatigue Syndrome: A Treatment Guide

    Hi, Andrew. My understanding is that there won't be a print version. I've also heard that it's possible to get free apps from Amazon so that you can read Kindle books without actually having a Kindle: http://www.amazon.com/gp/feature.html/ref=kinw_dp_pub?ie=UTF8&docId=1000493771 Best...
  17. R

    What about inherited immune deficiencies?

    Hi, Guido. I think that the immune abnormalities in ME/CFS are of two types: inherited immune deficiencies and immune dysfunction that results from the GD-MCB vicious cycle, after the onset of ME/CFS. There is lots of evidence for the latter. I'm interested in finding out whether the former...
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    Revised Simplified Methylation Protocol (August 25, 2012 Revision)

    Hi, Lilian. I presume that you have been taking the methyl B12 sublingually. If so, that's a big dosage of B12. I'm glad to hear that you have had some improvement in symptoms. If you would take methylfolate (such as in FolaPro or Metafolin or Quatrefolic) together with the methylB12 and...
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    Revised Simplified Methylation Protocol (August 25, 2012 Revision)

    Hi, AQG. If B2 or B3 are deficient, yes, the glutathione will become oxidized. If one continues to bring more in, it may be possible to keep the ratio of reduced to oxidized glutathione up inside the cells, because the cells will export excess oxidized glutathione if they are not able to...
  20. R

    Sulfur and Methylation

    Hi, Vegas. That's a new one on me. How would that work? How does AKG inhibit CDO? Have you tried this and found it to work? Thanks. Rich
  21. R

    Methylation Pathway Analysis

    Hi, arx. There are two types of tests that people are getting involving methylation. One is the Yasko panel, available from www.holisticheal.com (or using a 23andme.com panel to get most of the results of the Yasko panel). This is a genetic polymorphism panel, and it tells you what your...
  22. R

    You guys need to try this Now Acai, seriously!

    Hi, CAcfs. I appreciate your detailed descriptions of what Acai does for you, and your comparisons to the responses you experience from B12 and TMG. I continue to suspect that what Acai is doing for you is to give you a temporary boost in your glutathione level, especially in your skeletal...
  23. R

    oxygen hunger/shortness of breath question

    Hi, xrayspex. Here's another possible mechanism for air hunger in ME/CFS: The respiratory center in the brainstem regulates the rate and depth of breathing for the body by monitoring the level of CO2 and the pH in the blood it receives. If CO2 drops, it slows and shallows the breathing, so...
  24. R

    Epstein-Barr Virus and Autoimmunity

    Hi, heaps. I think you are on the right track in raising the subject of immune deficiencies. I have been thinking along these same lines, for at least a subset of the ME/CFS population, and in fact, I posted about this yesterday. So, great minds....:) I think it will be important to...
  25. R

    What about inherited immune deficiencies?

    Hi, all. Thanks for the posts, and I hope others will keep them coming. It may be that we will be able to identify a subset that does have inherited immune deficiencies, another subset that had a serious acute exposure to a toxin, and others as well. As you may know, in the GD-MCB...
  26. R

    Ya'lls thoughts on Nitric Oxide/Pall Protocol. Rich?

    Hi, CAcfs. I agree that paying attention to treatments that work, at least for some PWMEs, gives important clues. This has been part of my "M.O.", too. And sharing results with others is important, too, both because it may help them, and because we can start to see what works for quite a...
  27. R

    Ya'lls thoughts on Nitric Oxide/Pall Protocol. Rich?

    Hi, CAcfs. I'm really glad to hear that the acai helps you. If the model I have proposed is valid, I would guess that it must be helping to counter the oxidative stress, allowing glutathione to come up some, at least for a while. As I wrote before, antioxidants do help to counter oxidative...
  28. R

    What about inherited immune deficiencies?

    Hi, all. I'm reposting this from another thread to give it more visibility. With regard to the discussion here about immune abnormalities in ME/CFS, what I would like to see is a study that looked for the most common inherited immune deficiencies in PWMEs. I think it is well established...
  29. R

    Lipkin Study Press Conference 18th Sept

    Hi, all. With regard to the discussion here about immune abnormalities in ME/CFS, what I would like to see is a study that looked for the most common inherited immune deficiencies in PWMEs. I think it is well established that there is immune dysfunction after a person has developed ME/CFS, but...