• 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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  1. Z

    Scientist Ron Davis Interviewed by WBUR in Massachussetts (6 minute 23 of Q&A)

    I think a form of stemcell therapy. I read a research article about stemcell therapy helps to heal mitochondria in mice... maybe through this centeral control circuit. So taking your own stemcells... and filter the best ones and inject via IV. A one time solution.. In this article other...
  2. Z

    Calling all betaine hcl - pepsin experts

    Hi I had helicobacter p. I think for long time. But my hbp. did not give me any troubles such as ulcer, GERD, stomach ache etc.. After a meal I did feel gas in the lower part of GI. This started after having ME. I felt bloathed feeling in stomach area and later in the intestinal area. After...
  3. Z

    Sepsis and mitodisfunction cured by stemcells

    Sepsis is mentioned recently in me/cfs research and by researchers. They say inflammation in me/cfs looks like sepsis. Only difference is that in me/cfs it looks more like slow chronic low grade sepsis instead of acute sepsis. I read this article about injecting mesenchymal stemcells in mice...
  4. Z

    Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Japan is working on a second study on braininflammation. They started in sept. 2017. It is difficult to complete an extensive study like this with 100 or more subjects in a couple of months. Maybe one year work needed, find patients, collect data, analyse data, write paper, review paper...
  5. Z

    Metabolism shift T cells exhausten vs T cells senecence

    Thanks guys .. I found it also interesting to read the work of OMF is doing, one of the researcher of Standford..thesis: damage mitochondrial dna leading to difficulty or slowing of enzyme proccesing. When looking at picture of senescent Tcells it goes along with damaged mitochondria. We are...
  6. Z

    Metabolism shift T cells exhausten vs T cells senecence

    What happens when people get a virus with T cells and their metabolism? In this book it is explained..especially in this part. Source: the metabolic challenges of iimmune cells in health and disease. T cells in this case cd8+ can get exhausted (eg hiv virus) or senescence ( in case of ebv...
  7. Z

    Now very severe HELP

    I had and still have problems with chewing, swalloing and stomach issues. My esophegus cramps up and it feels like burning pain and very dry feeling in the mouth and esophegus. When food reaches the stomach it is as if a stone is in my stomach. It hurts so bad. When swalloing the food sticks in...
  8. Z

    Now very severe HELP

    Eat light and small portions spread during day. Low carbs..
  9. Z

    Now very severe HELP

    Liquid iron did not help me at all..and in it is lots of additive that is bad for your gut. The doctor at hospital gave me an iv iron direct in blood. But also this gave me allergic reaction. But it is good to test ferritin and hemoglobibe etc..again. I think the crash it is a accumulation of...
  10. Z

    Now very severe HELP

    https://www.wellnessresources.com/news/low-iron-linked-with-muscle-health-sleep-disorders-mood-stroke-mitochondria This article explains the consequences of low ferritin very well. Many aspects are found in me/cfs and fibromyalgia....lactic acid build up, mito dna damage, brain, dopamine...
  11. Z

    Now very severe HELP

    Search ↓ Full text Serum ferritin is an important inflammatory disease marker, as it is mainly a leakage product from damaged cells. Kell DB, et al. Metallomics. 2014. Show full citation Abstract "Serum ferritin" presents a paradox, as the iron storage protein ferritin is not synthesised in...
  12. Z

    Now very severe HELP

    Hi I wanted to ask whether you have checked level of iron in your blood. Especially feritine..if your stock on iron has dropped like in my case to level 8. Normal feritin for women is 20-100, men 20-250. In my case it was in 2011 4 and later 8. So this also contributed to low oxygen in...
  13. Z

    Blood parameters indicative of oxidative stress are associated with symptom expression in CFS

    Very interesting. My thoughts on this.. Methaemoglobin: red bloodcells which carries oxygen due to the hemoglobine is callled oxyheamoglobin. When hemoglobine fails to carry or bind oxygen this leads to methaemoglobin. I asked my self what if our red bloodcells can not cary efficient amount of...
  14. Z

    2016 Ramsay: Research Team 1 Update February 22, 2018

    Was wondering what myo inositol is and which diseases show a peak ? https://radiopaedia.org/articles/myo-inositol-peak Myo-inositol is one of the compounds images with MR spectroscopy (MRS) at both 1.5T and 3T and is seen to resonate at 3.5 ppm chemical shift (right of the choline peak)...
  15. Z

    Neurologic Abnormalities in M,E, A Review Komaroff et al

    Japanese study on brain inflammation in me/cfs. 120 subjects. A follow up on 2014 with 9 subjects Here you find initial study proposal: https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000033257
  16. Z

    D lactic acidosis and me/cfs have similarities

    Hi I tried for one year to do gluten free and sugar free diet...not yet knowing anything about this lactic accumulation in the body and blood. I felt a bit more energy, less GI problems, less pain. After one year i crashed anyways. Looking back it had to do with my work. This took too much...
  17. Z

    D lactic acidosis and me/cfs have similarities

    https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-017-1229-1 This article has already been posted Sorry. How to delete this post? Researcher looks at symptom similarities between this two diseases. Everything comes together: mitochondrial dysfunction, lactic acidosis...
  18. Z

    Continues T cells activation and metabolic changes

    Pyruvate controls the checkpoint inhibitor PD-L1 and suppresses T cell immunity https://www.jci.org/articles/view/92167 "Oversupply of the glycolytic intermediate pyruvate in mitochondria from CAD macrophages promoted expression of PD-L1 via induction of the bone morphogenetic protein...
  19. Z

    Research update from Prof. Ron Davis (video!)

    Could anyone on this forum deliver the following message or question to the scientists like Ron Davis, Mark Davis etc... Can pd-1 checkpoint pathway be involved in me/cfs and explain the starting point of this disease. Low pd-1 expression on T cells lead to overactivation of immunesystem and...
  20. Z

    Blocking pd-1 checkpoint eradicates HIV

    Pd-1 checkpoint is a receptor on T cells, B cells...endothelial cells It downregulates immunesystem Blocking this pathway has been proven to combat cancer types e.g. lungcancer, melanoma.. A case study of one person with lungcancer and hiv showed after treament with this pd-1 blocking medicine a...
  21. Z

    Making mitochondria healthy combats Alzheimers

    https://sciencetrends.com/researchers-find-healthy-mitochondria-can-combat-alzheimers/ Hoe important is it in Sience to look at a disease from a different angle and outside of the box. This study done on Alzheimers shows it. Maybe scientists develop tunnel vision and forget to look out side...
  22. Z

    Continues T cells activation and metabolic changes

    Continue linking PD-1 receptor to me/cfs and ongoing activation of T cells PD-1 receptor ( programmed cell death) you can find this receptor on b cells, activated t cells, macrophages. Function: downregulates activated T cells ( negative regulation of immune response) Link with Mark Davis...
  23. Z

    petscan on brain inflammation ?

    Thanks for leting me know...so perfusion of the brain is a known problem with me/cfs. What is the tracer called? You know the specific name?
  24. Z

    petscan on brain inflammation ?

    @Research 1st Thanks for elaborating on the cons and pros. It would be helpfull if people who have done petscan on braininfl. Would report on this and we can gather this data you mentioned.
  25. Z

    petscan on brain inflammation ?

    I know that if nothing shows up it does not mean there is nothing wrong with the brain..it depends what you look for..but petscan with PK11195-PET or the most recent pk...can maybe give answer whether inflammation is present...
  26. Z

    petscan on brain inflammation ?

    Good luck...hope to hear from you and your result.. What are they looking for in your case with spect? Do you get a tracer infused in your blood and what does it look for?
  27. Z

    petscan on brain inflammation ?

    Who has done petscan on brain inflammation? And what were the results? Thank you.
  28. Z

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Hi...see study in japan from 2014...however small sized study..they used PK11195 during Petscan..neuroinflamm. was reported. Now, sept 2017, they started on replicating finding in bigger cohort of me cfs patients. And they us [11C]PBR28.