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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. MDL

    A Tribute To Rich Van Konynenburg

    Rich lived his life with passion and a deep sense of purpose; he leaves behind a rich legacy. He was a deeply compassionate and generous soul who never tired of reaching out and trying to help others. Everyone was invited to stand under his umbrella. He will be greatly missed, and his work...
  2. MDL

    Mitochondrial dysfunction - mainstream view in CFS or not?

    Hi GG, The following is something I wrote privately a couple of years ago to someone in this forum. I would add that diet and specific probiotics appropriate to your gut composition and problems, not a general formulation, are important. Glutamate is an issue for many people and is hidden in a...
  3. MDL

    Mitochondrial dysfunction - mainstream view in CFS or not?

    While the article requires careful reading, the findings closely track many of the points I have made in building my hypothesis; they strengthen the case for hydrogen sulfide as a legitimate focus for research into the underlying mechanisms of ME/CFS. In broad terms, the authors appear to...
  4. MDL

    Mitochondrial dysfunction - mainstream view in CFS or not?

    It's a very long story, but basically, we did everything we could do, short of going on extensive rounds of antibiotics and antivirals. Diet was key, particularly when she gave up dairy, gluten and sugar. The biggest improvement came when she gave up dairy several years ago, along with other...
  5. MDL

    Mitochondrial dysfunction - mainstream view in CFS or not?

    Rich, sorry about leaving the thread hanging. I started to respond but had to run off to the airport to pick up my daughter. She is the one who was so profoundly ill with ME/CFS that she had the worst tilt table results ever recorded at a very important hospital, among other findings. If she got...
  6. MDL

    Mitochondrial dysfunction - mainstream view in CFS or not?

    "Hydrogen sulfide (H2S) metabolism in mitochondria and its regulatory role in energy production." As a follow on to my previous comment, this evidence pertaining to mitochondria and hydrogen sulfide is very much on point. Basically, they are restating my hypothesis and confirming it, but...
  7. MDL

    CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

    Hi Cort--How are you? How hot is it in San Miguel? You asked for suggestions. Perhaps you could join this thread with the one on the same subject about Dr. Reeves in General ME/CFS news. I'd also suggest you include the slides I posted in the CDC Resource Center. They give first-hand information...
  8. MDL

    Mitochondrial dysfunction - mainstream view in CFS or not?

    Hi Rich, I presented a poster at the 2009 Conference titled "Hypothesis: Chronic Fatigue Syndrome is caused by problems of hydrogen sulfide metabolism and results in mitochondrial dysfunction". I also published a hypothesis in 2008 titled "Hypothesis: Chronic fatigue syndrome is caused by...
  9. MDL

    Dr. William Reeves dies

    Hi Cort--How are you? How hot is it in San Miguel? You asked for suggestions. Perhaps you could join this thread with the one on your column about Dr. Reeves. I'd also suggest you include the slides I posted in the CDC Resource Center. They give first-hand information about how this disease was...
  10. MDL

    Dr. William Reeves dies

    Sing, I hope you won't let it get to you for very long. I agree with your comments about good marks and giving him a pass. That is why it is important to present the facts, as unappealing as they may be.
  11. MDL

    Dr. William Reeves dies

    Whether William Reeves was a good fit or intelligent ( I think he was) is not what really matters. He was smart enough to know that, at least with respect to the CFS community, his words and actions mattered. In fact, they had broad, harmful consequences. Looking at the slides of a...
  12. MDL

    Visible and near-infrared spectra collected from the thumbs of patients with CFS for diagnosis

    "RESULTS: Vis-NIR spectra showed sharp peaks at 694, 970 and 1060 nm and broad peaks in the regions of 740-760 and 830-850 nm. As these peaks are possibly related to oxyhemoglobin, cytochrome c oxidase and water, levels of these factors were compared between the two groups. Statistical analysis...
  13. MDL

    Oxidative Stress and Mitochondrial Injury in Chronic Multisymptom Conditions

    Hi Justy, What we are talking about here is something fundamental to the creation of life, like oxygen, and yes, it is critically important-- it is a toxin that is also beneficial to us in many profound ways. The research on H2S is developing very quickly, and the picture that is emerging is...
  14. MDL

    Oxidative Stress and Mitochondrial Injury in Chronic Multisymptom Conditions

    It would seem to me that the following is rather on point: Antioxid Redox Signal. 2010 Jan;12(1):1-13. Hydrogen sulfide increases glutathione production and suppresses oxidative stress in mitochondria. Kimura Y, Goto Y, Kimura H. Source Department of Molecular Genetics, National Institute...
  15. MDL

    Sulfur Deficiency and Sun Exposure

    Hi Rich, It seems to me that the methylation block as described above, is a bit like, if you will forgive the analogy, having constipation. Yes, you can take a laxative, H2S in this case, and it may work, but the problem will likely return unless you address the underlying problems. As...
  16. MDL

    Sulfur Deficiency and Sun Exposure

    Hi Rich, Yes, but what I was asking was whether you still thought that the partial block in the methylation cycle was the key problem in ME/CFS. Can it explain the glutathione depletion, the B-12 deficiency and the loss of folates? If you fix the partial block, do people really get better...
  17. MDL

    Sulfur Deficiency and Sun Exposure

    Hi Rich, You seem to shifted your theory quite a bit toward sulfur metabolism. Do you really think that ME/CFS is all still due to a partial methylation cycle block? All best, Marian
  18. MDL

    Boosting Mitochondria Increases Energy, Leads To Viral Clearance

    Hi Navid, I am so sorry that you are very sick. I wish I could give you some advice, but unfortunately, I am not a doctor. The best advice is to find a good integrative doctor who can test you for allergies and pathogens, advise on your diet, and look at your genetics. On the question of...
  19. MDL

    Xpr1 is an Atypical G-protein Coupled Receptor that Mediates Xenotropic and ...

    Hi Alex, First of all, if you think that there is value in pursuing the arachidonic cascade, I would really encourage you to put it forward. We are all looking for answers and you obviously know a lot about this disease. As for H2S, I think that it has the potential to serve as a unifying...
  20. MDL

    Boosting Mitochondria Increases Energy, Leads To Viral Clearance

    Follow the H2S Trail... I have written about hydrogen sulfide as an underlying mechanism in ME/CFS. Mitochondria are organelles descended from ancient eukaryotic sufur-utilizing microbes and, believe it or not, mitochondria have retained this ancient ability to utilize H2S as a substrate to...
  21. MDL

    Boosting Mitochondria Increases Energy, Leads To Viral Clearance

    Followi the H2S Trail... I have written about hydrogen sulfide as an underlying mechanism in ME/CFS. Mitochondria are organelles descended from ancient eukaryotic sufur-utilizing microbes and, believe it or not, mitochondria have retained this ancient ability to utilize H2S as a substrate...
  22. MDL

    Xpr1 is an Atypical G-protein Coupled Receptor that Mediates Xenotropic and ...

    Hi Alex, I do believe in the underlying hypoxia/oxidative stress theories of ME/CFS, (which is not to say oxygen is toxic), and I think that H2S may go a long way toward explaining these findings. As for oxygen, rather than it being toxic, it may be a big part of the solution. What I like...
  23. MDL

    Anyone found any easier cleaning methods/tools to help the energy challenged??

    The hand-held steam cleaners may not be advisable for people with ME/CFS. You can stir up a lot of mold and bacteria with the steam, which is not exactly what you want to inhale. I knew someone who went on a cleaning spree for three days with her new hand-held steamer, then spent two weeks in...
  24. MDL

    Xpr1 is an Atypical G-protein Coupled Receptor that Mediates Xenotropic and ...

    Thank you for that suggestion. Here is another reference (which I find difficult to follow), but maybe you could put it into context: "H2S protects hippocampal neurons from anoxia-reoxygenation through cAMP-mediated PI3K/Akt/p70S6K cell-survival signaling...
  25. MDL

    Sulfur Deficiency and Sun Exposure

    Holding on to the salt Thank you, Gloria. I am wondering, if I may ask, did you recover after the hydrocortisone treatment? If so, are you still well? Have your aldosterone/renin levels stabilized?
  26. MDL

    Xpr1 is an Atypical G-protein Coupled Receptor that Mediates Xenotropic and ...

    We have to look at the role of hydrogen sulfide You will want to note the mention of forskolin in this first article" Vasoconstrictive effect of hydrogen sulfide involves downregulation of cAMP in vascular smooth muscle cells": http://www.ncbi.nlm.nih.gov/pubmed/18787076 A second reference...
  27. MDL

    marshall protocol

    Many thanks, Athene.
  28. MDL

    marshall protocol

    Hi Athene, Are you able to say which lab that is? As you know, the quality of the lab makes a huge difference. Many thanks. Marian