• 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. Diwi9

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Welcome back, Cort! I have been off the board for some time now, but for users of this site, please realize that Cort is making it so that PR can remain a viable and functioning site with its vast documentation of content preserved and accessible. Running an independent message board via the...
  2. Diwi9

    Hypnic jerks preventing sleep onset

    I dealt with exactly what you describe. I didn't do anything to specifically target these ticks, but they eventually went away. I will only get them know if I'm in a crash or need to rest but have to stay awake, like waiting at the doctor's office.
  3. Diwi9

    Article Part 1: Millions Missing in Mexico

    Sadly, Mexico is one of the most overweight countries in the world. Multi-national food corporations have targeted poor communities with over-processed packaged foods and soda. Diabetes is rampant and projections for continued increases.
  4. Diwi9

    The good news: cause of muscle weakness ME/CFS discovered

    If these sodium levels are indicative of over-exertion, it would be amazing to have some kind of a sensor that could indicate when a patient's exertion is about to reach over-exertion. It strange how certain symptoms have been ignored for decades. Like everyone is focussed on fatigue, but the...
  5. Diwi9

    Has anything helped your "brain fog"?

    Mild HBOT, about five dives per week for about 80 dives with oxygen. Also, NAC.
  6. Diwi9

    Anthony Komaroff research presentation (video) for MassME 2022 annual meeting

    Thank you for that clarification, he does seem to be tiptoeing a nuanced line.
  7. Diwi9

    Anthony Komaroff research presentation (video) for MassME 2022 annual meeting

    There are some concerning statements Dr. Komaroff makes in this interview, especially around exercise. No ME/cfs specialist should be discussing a patient trying exercise without mentioning careful heart rate monitoring, something any doctor trained to deal with ME/cfs *must* be trained on...
  8. Diwi9

    Serum of Post-COVID-19 Syndrome Patients with or without ME/CFS Differentially Affects Endothelial Cell Function In Vitro (Flaskamp et al, 2022)

    Interesting. My VEGF was very high when I was tested in 2017. I know others have had that finding too.
  9. Diwi9

    Jennifer Brea is missing ***Update: Found Safe!***

  10. Diwi9

    New Findings: Sarin Gas & Gulf war Syndrome.

    Here is the paper, it is open-access: https://ehp.niehs.nih.gov/doi/10.1289/EHP9009
  11. Diwi9

    New Findings: Sarin Gas & Gulf war Syndrome.

    Here's a news clip from the BBC with a short interview of the lead researcher Dr. Haley:
  12. Diwi9

    New Findings: Sarin Gas & Gulf war Syndrome.

    Two points on this. Some of you know I lived in Saudi Arabia throughout Desert Shield and Desert Storm. Many soldiers reported to us that their chemical sensors were going off in the desert, particularly after destruction of a major Iraqi weapons site...something the Pentagon denied for years...
  13. Diwi9

    New Findings: Sarin Gas & Gulf war Syndrome.

    Wikipedia's content on PON1: https://en.wikipedia.org/wiki/PON1
  14. Diwi9

    New Findings: Sarin Gas & Gulf war Syndrome.

    I've only seen this article pointing to sarin gas exposure and the PON1 gene, not the actual published study. If anyone finds it, please post. The study involved ~1,000 veterans and claimed to be the most definitive finding yet. https://www.bbc.com/news/health-61398886
  15. Diwi9

    Article Part 1: Millions Missing in Mexico

    @Pyrrhus - This is an incredible piece of work you have composed. PR is lucky to have a polyglot willing to reach out and discuss the status of ME/CFS sufferers in other parts of the world...that because of language barriers, patients often don't hear from or know about. Thank you for the...
  16. Diwi9

    Article Doctors with ME Confront the Taboo of Suicide

    A few years ago, I tried opening up a dialogue with that group. There was zero interest or follow through despite the person I spoke to on the phone being personally interested.
  17. Diwi9

    Article Doctors with ME Confront the Taboo of Suicide

    Good work and thank you for this quality piece, @Bronc!
  18. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    @hapl808 - I hope better explanation arises for the reaction. Since the vaccine triggers a massive immune reaction for me, it must be in that camp...something about that response dampens the PEM mechanism. Many symptoms remained, but they were things I could manage/tolerate. PEM is...
  19. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    It has been exactly four weeks since I entered the partial remission. It is over. It was a fun ride and I really enjoyed myself while it lasted, even having house guests, going downtown, grocery shopping, driving, and even kayaking. The biggest pleasure was just being able to do things on the...
  20. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    I didn't consider the vaccine a prognosticator for my illness, but just something going wonky with my immune system as I had also developed allergies around this time and was having frequent mouth sores. I have noticed that many people seemed to have developed ME/CFS around 2009. So, maybe a...
  21. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    @Gingergrrl - I have the MBL deficiency gene mutation, so I asked my doctor for the blood test to check my levels and I was totally deficient. This is how LabCorp describes the purpose of the test: The determination of MBL concentrations in serum may be useful for the elucidation of suspected...
  22. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    If it helps at all with my subtype, I have the mannose-binding lectin protein deficiency genetic mutation and when tested, I was completely deficient. There is no specific consensus on what MBL deficiency means longterm, but obviously it accounts for a part of the compliment immune system being...
  23. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    Hahaha! No remission has ever been full. I find this illness to be a kaleidoscope of symptoms. Some appear for a while and fade while other reappear for a time. My course changes throughout the day...gotta keep things exciting, you know?
  24. Diwi9

    Looking for noise canceling headphones

    No, I am not bedridden, but I wear my headphones most of the day and sleep with them. I replace the pads every few months and use replaceable covers for the pads. I change the covers every time I shower. This is my regular thing, for six years now.
  25. Diwi9

    Looking for noise canceling headphones

    I have Bose Quiet Comfort 35 II, I have had the 25 series. I believe there are now a 45 series out. Not cheap, but they work and I wear headphones for most of the day. They don't just help with blocking sound, but with sensory processing issues as I can focus on the sound I want to. You...
  26. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    I have tried to contact Dr. David Strain over multiple platforms and have contacted my ME/CFS specialist, Dr. Chheda. I haven't received a response from either. I would really like someone to take an interest in my vaccine response since the pattern is clear. My PEM in the past has been very...
  27. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    I had lots of fevers, MCAS, and SIBO at the beginning of my 2016 relapse. Those have mostly remitted and only happen here and there now, especially during PEM. I've never had anaphylaxis. My ME symptoms regularly skew toward neurological issues: sensory, proprioception, cognitive/memory...
  28. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    I have had improvements over the years to anti-virals and SIBO treatment. Hydrocortisone has helped my pain symptoms, but I then had to get back on anti-virals. Nothing has been as profound as the the post-mRNA vaccines. The baseline of my ME seems to have improved over the past year that I...
  29. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    Hi @Gingergrrl - I hope I answer your questions correctly because it is late and I have become overwhelmed by the ME/CFS categorizations and random research findings over the years. I do believe in subsets, but I don't think I fit cleanly in any or haven't had the proper follow up diagnostics...
  30. Diwi9

    Third partial remission (no PEM) post-Moderna mRNA vaccine

    I have a very intense response to the vaccine that starts about 8 hours after the injection and lasts 36 hours after symptoms begin. Since I've had three boosters, it's become a predictable pattern. I spike a fever ~102 and develop body wide muscle/joint pain and burning sensations over my...