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

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Search results

  1. jpcv

    Investigating Fatigue and Exercise Intolerance in a University Immunology Clinic

    I this is a very provocative and interesting paper. Although it does not use any Criteria for ME/CFS , its patients clearly had many similarities with pwME/CFS. I suspect many patients described with FibroMyalgia in the study cohort in reality suffer from ME. I also liked how they structured the...
  2. jpcv

    Severe gut problems - No answers

    I had similar symptomsand what helped was a gluten free diet, lots of vegetables and less sugar overall Nuts Dark chocolate I tried probiotics for a while but they usually helped a little bit for a short span of time, unlike the changes I did to my diet . I did a SIBO exam and the result came...
  3. jpcv

    Is m.e. yet another form of EDS?

    Can you give us more detail about your muscle problems? I´ve had some issues also and maybe they have something in common/?
  4. jpcv

    SARS-CoV-2 Spike Protein Impairs Endothelial Function via Downregulation of ACE 2

    This paper should be of interest too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8267916/
  5. jpcv

    No viral onset = viral onset?

    I don´t remember any infection either, I remember I had symptoms like we usualy have in the beggining of an infection like fatigue, general malaise. I never had fever or another symptom suggestive of infection like diahrea, cough, shortness of breath. All I know is that a few days after my...
  6. jpcv

    Key question for those knowledgeable of Drs. Naviaux's and Prusty's theories

    I understand that purines are the way mitochondria "talks" to each other, but what causes the first danger signal that sets off this "danger" reaction?
  7. jpcv

    Post-sex exhaustion

    Only1-1.5 days of fatigue?! i it happened with me, I would be so happy!
  8. jpcv

    Post-sex exhaustion

    Hi, I feel the same but not every time. I´ve noticed that it depends not only on the orgasm itself but on the physical activity during sex. So I have learned to pace myself during sexual activity, this is very personal it depends on what kind of effort triggers PEM for you. Another question, do...
  9. jpcv

    Does PEM Severity Vary With Trigger Magnitude?

    For me it depends on the intensity of the exertion that triggers PEM
  10. jpcv

    Pulsed high dose methylprednisolone + inosine + inositol = cured?

    I tried prednisone 1mg/kg dose but it didn´t work for me.
  11. jpcv

    Driving my car is hurting me

    Thanks, I will try the lumbar cushion
  12. jpcv

    Need help trying to find my limits and daily routine

    I don´t plan my day, I follow my routine as strictly as I can. I try to avoid to do more than one extra thing a day, like going to the supermarket and to a medical appointment. I discovered my limits by crossing them and paying a heavy price. From this experience I built my routine. I do not...
  13. jpcv

    Driving my car is hurting me

    Hi everyone I had a small crash last December and since then I´ve been recovering well to my "normal" life but since then I´ve noticed one difference: Driving is causing me pain in my arms, my back and is making me more tired. I could drive up to 4 hours non stop before and now driving short...
  14. jpcv

    Why is nobody talking about this Enterovirus study?

    It would be interesting to submit ME patients to this same diagnostic procedure, the technology seems very reliable.
  15. jpcv

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Has anyone watched or seen in person Dr Maureen Hasnson´s talk and her mention of a viral infection?
  16. jpcv

    If you were recovered tomorrow, what would you do

    grab my surfboard and hit the ocean carry my son on my back around the house
  17. jpcv

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    It gives me horrible headaches
  18. jpcv

    Recovery by Physical trauma/pain?

    In the comment section in JAMA´s recent paper by Dr. Komaroff there is a very intriguing letter from a retired pysician. He says he encountered three patients who had a remission from ME after serious illnes or physycal trauma: -peritonitis -Broken arm -Severe burning of the hand The peritonitis...
  19. jpcv

    Should I start a ME/CFS clinic?

    I have postponed my decision because I went through a 3 month long bad phase of the disease last year. Although I´m better off now, I still haven´t made my mind about it.
  20. jpcv

    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    thanks
  21. jpcv

    is swimming(aerobic exercise) recommended for us?

    I´ve been a swimmer since childhood, and a good one. But as soon as I got sick with ME I had to quit swimming, because even swimming 25 meters would cause me a profound fatigue and sometimes very bad PEMs. So listen to your body and do not overdo it.
  22. jpcv

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    I would like to say thanks to @jeff_w and @JenB for telling their stories and for spreading the word about CCI and hypermobility. We have a WhatsApp group of patients and these subjects have been discussed recently. It turns out that one of the patients in the group has been found to have...
  23. jpcv

    Glial Activation and Expression of the Serotonin Transporter in Chronic Fatigue Syndrome

    https://www.sciencedirect.com/science/article/pii/S0889159118302423?via%3Dihub#b0175
  24. jpcv

    Glial Activation and Expression of the Serotonin Transporter in Chronic Fatigue Syndrome

    Very interesting, it seems that glial activation has been noticed also in Fibromyalgia
  25. jpcv

    Neuroinflamation detected in Fibromyalgia

    Very interesting article about neuroinflamation in FM, using PET-MRI with a tracer for glial activation. I think it has lots of interesting information regarding LDN, Duloxetine and how to asses brain inflamation. It also refers to the work of Jared Younger and Dr Nakatomi, from Japan. There is...
  26. jpcv

    Anyone here used HIV/AIDS treatment for CFS?

    No
  27. jpcv

    Anyone here used HIV/AIDS treatment for CFS?

    I´ve been taking tenofovir for the last 4 or 5 months for Hep B, it Works great for hep B but it didn´t change anything related to my ME
  28. jpcv

    My first appointment with Dr Susan Levine

    I´m having trouble getting a response from my e-mails, I´ve sent her at least 4 e-mails inthe last months and no response !
  29. jpcv

    My first appointment with Dr Susan Levine

    Regarding comuniction with her, I feel the same.
  30. jpcv

    Loss of TRPM3 ion channel function in natural killer cells from CFS/ME patients

    any comments, @alicec ?