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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. voner

    it seems ron davis may have a new potential treatment

    @Rachel Riggs, can you update us on the status of the OMF funded study refered to in this: https://www.omf.ngo/update-metabolomics-validation-study/
  2. voner

    High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome

    here is a site for the "Tarlov Cyst Disease Foundation", for those who are (like me) are interested in learning about Tarlov Cysts. https://www.tarlovcystfoundation.org/info/
  3. voner

    Ejection fraction question

    @HTester, here is the description of Dr. Systroms Mestinon trial... https://clinicaltrials.gov/ct2/show/NCT03674541?cond=ME%2FCFS
  4. voner

    Whole Genome Sequencing and Analysis of ME/CFS (Solve ME/CFS webinar video)

    I am about 35 minutes into the video and at this point there is some interesting info on MTOR and energy regulation genes... tiny study of 8 or 9 patients and they are discussing anomalies in single patients, so it is very very speculative... I have not watched the video further at this...
  5. voner

    Mestinon side effects?

    @Learner1, If you trial Huperzine A, I would like to hear of your comparision of it to Mestinon. I quit Mestinon due to the side effects you mentioned.
  6. voner

    Is insulin resistance the cause of fibromyalgia? In a subset of fibromyalgia patients, metformin dramatically improved pain

    thanks @Hip for posting this. Spectacular results that they are claiming! here is brief write up of the study: https://www.sciencedaily.com/releases/2019/05/190507145523.htm they seem to be also claiming, without saying so, to have found a potential biomarker..? pretty big claims for...
  7. voner

    New clinical trial for Mestinon

    Mary, The specialists familiar with this would be an electrophysiologist, cardiologist, or a neurologist with specialty in autonomic systems or a ME/CFS specialist. in the past I’ve been able to get family practitioners to prescribe it. It has side effects you need to be aware of.
  8. voner

    New clinical trial for Mestinon

    very interesting, I have always wondered about the physiological dynamics of Mestinon when it works . here is a quote from the trial description that describes Dr Systroms thinking (my bolding of the text):
  9. voner

    Biomarkers from Plasma Metabolomics of ME/CFS Implicate Redox Imbalance in Disease Symptomatology

    @pattismith, that is a great diagram of the AMP/IMP pathways. I went down this AMP/IMP wormhole a couple times because I ran my dna results thru Prometheaus ad it flagged A homozygous defect in AMPD1. Here is what the report looked like: ...... rs17602729(T;T) AMPD1 deficiency homozygous This...
  10. voner

    Muscles pain, weakness, cramps. Diamox vs Mestinon

    @Mel9: myasthenia gravis: https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036 I had a simliar response, but eventually had to quit mestinon because I could not tolerate the gastrointestinal side effects. The time release form helps with the every 6...
  11. voner

    Nebula.org--discussion

    hey, I signed up at Nebula.org and it took me less than an half hour to sign up up and answer all the questionnaires. I chose the most open acess to my data and in all have 550 points and I can get another 100 points for transferring my 23andme or ancestry data to this site.... I guess I have...
  12. voner

    Neural Reset Therapy eliminated fibromyalgia pain

    Very interesting. Thanks for the details. They’re quite helpful. Do you have any allodynia? So you noticed changes in 1 to 2 treatments I am how long has that held?
  13. voner

    Neural Reset Therapy eliminated fibromyalgia pain

    Ema, would you please be more specific as to which specific symptoms resolved, the time frames involved & /#of treayments. thanks.
  14. voner

    Looking for help with some new symptoms

    Rachel, Another item to check is your blood pressure measuring device. I’m not sure if it’s still true, but a few years ago it used to be true that the wrist devices were much less accurate than the ones that attached to your upper arm.
  15. voner

    Looking for help with some new symptoms

    Rachel, have you heard of the poor man’s POTS test? when you feel up to it, give that a try. You can Google it or you can use this version of it from Dr. Cindy Bateman’s office: https://batemanhornecenter.org/assess-orthostatic-intolerance/ For me, I did not have varying blood pressure...
  16. voner

    Looking for help with some new symptoms

    Rachel, I second @Sushi's suggestion of a heart rate monitor. The other possibility that comes to mind is your puffy face maybe indicating some sort of allergic reaction? it may be time to start a daily diary where are you note all the important information for ferreting out this issue...
  17. voner

    The Scientist: Probiotics’ Effects on the Microbiome Vary Widely

    https://www.the-scientist.com/news-opinion/probiotics-effects-on-the-microbiome-vary-widely-64760 interesting write-up of 2 different small studies looking at probiotic supplementation and, and in one, fecal transplants. One more area that will need a lot more research.
  18. voner

    Naviaux: Metabolic features and regulation of the healing cycle-A new model for chronic disease

    If you mean, " is this a recent publication?“... yes, August 2018 . https://www.sciencedirect.com/science/article/pii/S1567724918301053?via%3Dihub
  19. voner

    Thought I had POTS: turns out it was SA node dysfunction!

    Sushi, great to hear you got some relief and feel better and thanks for the post. What are your thoughts on your experiences with " autonomic specialists“... were they fooled by your symptoms also? if so, any ideas on why?
  20. voner

    Bartonella Streaks?

    @sb4, here is a long video about bartonella: here is the website for Galaxy Diagnostics (both of the people in the video are involved in this company) , who have developed some tests for Bartonella infection. https://www.galaxydx.com/ here is a reference to Buhner's book on bartonella...
  21. voner

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    @ScottTriGuy, thanks for posting that podcast. The podcast really helps me start to understand mtor, etc.. and its role in metabolism etc. Dr. David Sabatini sure is a clear communicator and an expert on Mtor! it appears there’s a lot of scientific interest in mTor and human longevity...
  22. voner

    Naviaux: Metabolic features and regulation of the healing cycle-A new model for chronic disease

    Looks like an update/rehash of his Cell Danger Response theory thinking.... I have not finished reading this, but there is a short mention of ME/CFS that includes this quote: https://www.ncbi.nlm.nih.gov/pubmed/30099222 I found it available on Sci-hub.
  23. voner

    HBOT for ME/CFS/CFIDS

    @HGParrot, Thanks for your posts. what were/are your specific syptoms and which ones have improved? Do you have autonomic system issues? Pain issues? Hypersensitivities? etc.
  24. voner

    ME/CFS alert latest episode (exercise intolerance)

    here’s an anecdotal story. 20+ years ago, Long before I had any competent medical advice or knowledge of ME/CFS terminology, I used to call postexertional malaise, “the kickback the next day, etc”. Then I was prescribed Pyridostigmine for other reasons and I swore that it lessened “the...
  25. voner

    Promethease--homozygous for AMPD1. I need D-ribose?

    I have this deficiency also. I also suffer from its major symptom, "muscle pain upon exertion". I have consulted with a neurologist with experience in treating patients with this deficiency and I've also have consulted with a geneticist who's very knowledgeable about this subject and they both...
  26. voner

    Angiotensin II Type 1 Receptor Autoantibodies in Postural Tachycardia Syndrome, 2018, Yu et. al.

    Wikipedia says it’s a little over 20 years old and it’s inexpensive.
  27. voner

    Angiotensin II Type 1 Receptor Autoantibodies in Postural Tachycardia Syndrome, 2018, Yu et. al.

    and!! Dr. Julian Stewart has completed a double-blind clinical trial study on young POTS patients using losartan, but I could not find any publication about the study. Perhaps he has not published yet? https://clinicaltrials.gov/ct2/show/NCT01210430 can anybody find this study...
  28. voner

    Angiotensin II Type 1 Receptor Autoantibodies in Postural Tachycardia Syndrome, 2018, Yu et. al.

    ...and losartan significantly decreased her allodynia. That’s almost unheard of.
  29. voner

    Angiotensin II Type 1 Receptor Autoantibodies in Postural Tachycardia Syndrome, 2018, Yu et. al.

    well.... take a look at this case (n=1) study paper... full paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4142820/pdf/jcad_7_8_41.pdf pretty interesting. Losartan extended her exercise tolerance also.