• 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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Search results

  1. W

    High-dose manganese: could it be an effective treatment for ME/CFS? (Ron Davis Research)

    I drink black tea but my hair analysis showed low Mn. Drinking black tea does seem to increase Mn intake, but not markers of Mn status or expression of Mn-dependent enzymes according to this 2005 study in a sample population of students and staff at Kings College London. Influence of tea...
  2. W

    Podcast Special: OMF.

    @Martin aka paused||M.E. I'd love to see Dr Systrom. On todays Recover zoom he mentioned that he has $8MM in funding. I'd love to learn more about his current and future projects.
  3. W

    Dr. Sarah Myhill (UK)

    FYI - Here is the latest info on her. She no longer prescribes prescription drugs and prefers patients work on a management plan before seeing her. i.e. Her practice has changed significantly in recent years. https://drmyhill.co.uk/wiki/Patient_and_Non_Patient_Access
  4. W

    The immunological inconsistency in the IDO trap theory

    Selin & Gill received an R01 grant this year from NIH based on the pilot results, so yes, there will be a follow up. https://reporter.nih.gov/search/e_gWv6hqxUqC-hdOxPxaaw/project-details/10185392
  5. W

    The immunological inconsistency in the IDO trap theory

    The Selin & Gill study was a very small pilot study. The UK CureME Biobank team reported no difference with 251 ME patinets vs 107 controls and 46 with MS https://researchonline.lshtm.ac.uk/id/eprint/4652675/1/fimmu-10-00796.pdf
  6. W

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    Guys, please be accurate with what you say other people said - use the quote box to report what they actually said and provide context. Whitney is not a researcher and had just started writing and using the internet one year ago so please don't say he always says that every year.
  7. W

    Have there been any animal studies for CFS?

    Dysautonomia International funded some work on antibodies thought to be related to POTS on rabbits. Some ME/CFS folks have POTS, and most have orthostatic intolerance. Adrenergic Autoantibody-Induced Postural Tachycardia Syndrome in Rabbits, 2019, Li et al Open access here...
  8. W

    Dysregulated provisions of oxidisable substrates to the mitochondria in ME/CFS lymphoblasts (Missailidis et al., 2021)

    Glad to hear that! Might be an idea to start a Q&A thread. If it's not too late here are a few questions : * I would love to know more about collaborations - he has mentioned starting to work with Chris Armstrong for metabolomics. * How open are other researchers to discussing ideas. Have...
  9. W

    Abilify- Stanford Clinic Patients

    Sure. But the money to fund an RCT has to come from somewhere. NIH staffers have stated several times in the last year or two that they think clinical trials are financially risky to fund in ME/CFS as they are expensive, and the outcome is likely poor when we don't know what pathways to target...
  10. W

    Dysregulated provisions of oxidisable substrates to the mitochondria in ME/CFS lymphoblasts (Missailidis et al., 2021)

    I miss @Murph's and @nandixon's contributions to the discussions of scientific papers, especially this one being Australia based...... Hope things are not too bad with them.
  11. W

    Irritable Bowel Syndrome caused by MCAS? New report.

    Did you mean Rifaximin, sold under the brand name Xifaxan, to treat SIBO? I hear that sometimes longer courses or repeat courses of Rifaximin are needed. Crazy to think there are tests nowadays for SIBO when blank stares used to be the norm for IBS!!! I also had to address MCAS with Cromolyn...
  12. W

    Irritable Bowel Syndrome caused by MCAS? New report.

    I believe this is the nature article referred to: Local immune response to food antigens drives meal-induced abdominal pain https://www.nature.com/articles/s41586-020-03118-2
  13. W

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    @Pyrrhus Full text journal pre-proof copy link on researchgate : https://www.researchgate.net/publication/349183533_Insights_from_Invasive_Cardiopulmonary_Exercise_Testing_of_Patients_with_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome
  14. W

    Keeping a master list of all abnormal results in my case

    In case it helps here is some info on mast cell testing from ARUP. Overview https://arupconsult.com/content/mast-cell-disorders Testing Flow chart https://arupconsult.com/algorithm/mast-cell-disorders-testing-algorithm Genetic Testing if high Tryptase (D816V mutation. Possibly TPSAB1 testing...
  15. W

    How disabled do you need to be to get SSDI?

    @Strawberry Some good resources on the Massachusetts ME/CFS & FM Association Disability page. https://www.massmecfs.org/disability
  16. W

    How disabled do you need to be to get SSDI?

    Please read the sleepy girl website for details on applying for SSDI. Lots and lots of good information. https://howtogeton.wordpress.com/social-security-disability/ It is really important that you have one or more doctors supporting you. The more out of range tests you have that support your...
  17. W

    Question re: serum tryptase levels

    Generally in order to understand tryptase doctors use two tests of tryptase. First is a baseline on a good day. Second is a bad day where you are having a mast cell type reaction - that's if you are well enough to make it to the lab within 2 hours of a reaction. Doctors then look for a rise in...
  18. W

    ME/CFS Comic Series

    @WantedAlive This gives you an idea of the statistics for one tweet I made with your cartoon - 12,356 views (tweet posted earlier in thread). Others with a wider audience are tweeting too.
  19. W

    Abilify tolerance

    Neil McGregor believes HDAC is involved. Source : https://www.healthrising.org/blog/2019/06/15/emerging-insights-mcgregor-metabolism-chronic-fatigue-glycolysis/ He also talked about it ~28mins in at the 2019 Australia ME/CFS Conference https://mecfsconference.org.au/videos/neil-mcgregor/
  20. W

    Results of the German Cell Trend laboratory for POTS

    A dermatologist would be someone capable of performing the biopsy.
  21. W

    Results of the German Cell Trend laboratory for POTS

    Just FYI in case you were not aware. Several places now offer skin biopsy testing which would help confirm SFN Therapath : https://www.therapath.com/services/small-fiber-neuropathy-testing/ Mass General Hospitals : https://neuropathycommons.org/get-tested/skin-biopsy Thanks for posting -...
  22. W

    The Puzzle Solver, by Tracie White with Ron Davis

    Of course it is. Go for it! If you have the means and you want to help the Best Seller lists that use a count of paper copies sold you could consider ordering a paper copy for another person to read, eg family members.
  23. W

    Seronegative Sjogren, what's new?

    I'm afraid I can't think clearly to help on this - it is very confusing. I can't even figure out how you guys decoded the rsID's. Sorry. I am heterozyogus for rs5030737 (Exon1) but also heterozyogus for rs7096206 (promoter).
  24. W

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    Dr. Prusty is collaborating with Dr Naviaux both on the paper published in 2020 and on a current project.
  25. W

    Dr levine wants lab at labcorp, worth it?

    Have a look at Labcorp Lab in a Box to see if that service would work for you. There is an email and phone number on this page https://www.labcorp.com/provider-services/other-services/home-healthcare
  26. W

    Nanoneedle: can impedance measures really indicate the benefits of a drug?

    That would be an interesting experiment. But it is possible there may still be a series capacitive component that at 15kHz has a relatively small value compared to the resistive component at 15kHz. At DC = 0kHz, the series capaciance component if there is one could be blocking If you look at...
  27. W

    Nanoneedle: can impedance measures really indicate the benefits of a drug?

    The electrodes are only 30nm apart so it could be resistance. From the paper I seem to remember that they found that the real component of the impedance Zre, aka the resistance, was the main factor. Ahhh, that is the case. I wrote about it on s4me and included details from the paper...
  28. W

    Ribose: Why might it work for ME/CFS patients

    It might also help for those patients who have an autosomal recessive AMPD1 gene variant causing adenosine monophosphate deaminase 1 deficiency . https://rarediseases.info.nih.gov/diseases/547/adenosine-monophosphate-deaminase-1-deficiency I could never find a good reason why it is suggested...
  29. W

    Thermoregulation and body temperature

    The supplementary data has the raw values in Excel if you are interested http://www.mdpi.com/2218-1989/8/4/90/s1
  30. W

    ME/CFS Comic Series

    I created a Twitter thread of the comic so that the comic can be shared