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

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Search results

  1. shannah

    Federal Election in Canada 2021

    Thanks so much @Pyrrhus and @Aspen. We've had a terrific response to the letter with 900 Canadians cosigning to support it. Thanks to all those who signed and circulated it for us and for all those who responded so enthusiastically. To bring maximum awareness to ME in Canada during this...
  2. shannah

    Federal Election in Canada 2021

    A federal election in Canada is underway. Recognizing that nearly 600K Canadian patients with ME together with their families and supporters could represent potentially millions of voters, a few advocates collaborated on preparing a letter last weekend to send to each party leader. The letter...
  3. shannah

    Individual qEEG Research Assessments Released from Laurentian University

    Announcement From Millions Missing Canada Research Results Released: qEEG Assessments for ME Volunteers From Laurentian University During the summer of 2018, researchers from Laurentian University Neuroscience Department led by Andrew Pellegrini, visited 45 ME patients in their homes in...
  4. shannah

    Canada Millions Missing 2020

    A Campaign for Trying Times Leave No One Behind... is the theme of this spring’s Millions Missing Campaign for ME Health Equity in Canada — a fitting theme right now, as plans roll out across the country to gradually ease restrictions caused by the pandemic. Campaigning this year will...
  5. shannah

    Ian Lipkin on Rachel Maddow tonight re coronavirus

    I was on and off Plaquenil / Hydroxychloroquine for a few years as part of multi-drug regime while undergoing treatment for Lyme Disease. It was popular to prescribe for Lyme back then some 15 years ago but don't know if it still is. It's also used for malaria. I never noticed any benefit from...
  6. shannah

    Antibiotic kills bacteria that causes Lyme disease

    Because of the blurred lines between Lyme and ME, I wonder if this might have implications for some in the ME community. Since Stanford is involved with this research, would it be worthwhile for Ron Davis to touch base with this team do you think @Janet Dafoe (Rose49) ? "The new findings...
  7. shannah

    OMF Welcomes Alain Moreau, PhD, to our Scientific Advisory Board

    There's so much good news here: Dr. Moreau's official appointment to the Scientific Board of the OMF; the confidence Dr. Davis has expressed in Dr. Moreau; the optimism expressed by Dr. Moreau; and I especially like this part the sizable donation by a generous Canadian family specifically...
  8. shannah

    A New Canadian Initiative to Reach Our MPs

    A new Canadian initiative has been launched to reach out and educate our new MPs post-election. We hope you'll consider downloading the letter, sending it off to your MP and asking family and friends to do the same. Flooding their offices with our letters will raise awareness and help gain the...
  9. shannah

    Looking for other M.E. people in Ontario Canada

    Hi Shannon, @chickpea Yes, @ScottTriGuy 's right. Millions Missing Canada has many supporters all across Southern Ontario. You can connect with other advocacy minded folks here. If it's a local group for support that you're looking for, providing we have a moderator for the group, we can set...
  10. shannah

    My Hypothesis on Th2 to Th1 Immunomodulators in CFS

    I'm referring to the ones who can't tolerate it all, no matter the dose — who actually go downhill from it. Years ago, the theory was that this applied to people who had yeast issues, that the LDN would kick it up further, but I don't think that was ever confirmed.
  11. shannah

    My Hypothesis on Th2 to Th1 Immunomodulators in CFS

    Any speculation @Hip on why it backfires in some people and seems to make them worse?
  12. shannah

    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    @Learner1 Thanks for relaying your conversation with Dr. Naviaux. This has brought up some questions that don't seem to have clear cut answers. I'll just throw them out here for possible discussion. So if we still need to treat pathogens first, given the theory that autism harbours underlying...
  13. shannah

    Did finding an infection via Armin Labs have a positive influence on your treatment & recovery

    I haven't been tested by Armin Labs but jumped on the Igenex band wagon in the early 2000's. Both myself and another family member were treated with various regimes of antibiotics for years and neither of us recovered. I'm glad for the people who have regained their health going this route...
  14. shannah

    full moons

    @sunshine44 It's a well known phenomenon in the Lyme community that many of their symptoms get much worse during full moons.
  15. shannah

    POLL: Which text format do you find easier to read with ME/CFS blurred vision?

    I have lots of visual problems including blurred vision that fluctuates in intensity depending on how ill I am on any given day. I also have processing problems which I'm sure must play a part in my reading difficulties. I usually am able only to briefly skim material. If I want to zero in on...
  16. shannah

    Full-length video on the historic scandalous medical treatment of ME by Dr Macintyre

    My deepest condolences on the loss of your friend @Countrygirl There's a posting about her along with the documentary here: https://www.facebook.com/MillionsMissingCanada/posts/727059527655772?__tn__=-R and the ME Association has posted here...
  17. shannah

    Dr. John Chia Visit Recap

    @Dallase1 I'd love to hear if he's recommending anything new or anything other than Oxymatrine.
  18. shannah

    New EBV drugs in the pipeline!

    Some interesting excerpts from the link you gave @heapsreal ... "A large body of evidence indicates that infection with Epstein-Barr virus (EBV) has a role in MS. Prof Pender has shown that people with MS have decreased immunity to EBV which could allow the accumulation of EBV-infected cells...
  19. shannah

    Cortene Peptide for MECFS? "Curative"?!

    From the Cortene site: Trial Specifics Protocol: The trial design involves 18 patients, subjected to 2 exercise stresses (on a stationary bicycle), each followed by a 4-week recovery period, and separated by treatment (2x 3-hour infusions of the sterile drug solution, at 1 of 3...
  20. shannah

    Valcyte - what to expect ?

    Wondering if anyone has tried the generic Valcyte or knows if it's as effective as the brand name. I just talked with my pharmacist and all he was able to tell me was that the price is about 1/5 the cost of the brand name, three companies are producing the generic and there's a back order and...
  21. shannah

    New paper by Dr Geraghty:ME &BPS :a review of patient harm & distress in the medical encounter

    Is this sci-hub link okay to share on social media?
  22. shannah

    Calling all Brits: Mass parent revolt against Esther Crawley and PACE

    @Countrygirl Is this posted anywhere on social media that it can be shared?
  23. shannah

    International Canadian ME/CFS Conference May 3-5, 2018

    For those on Twitter, you can follow the live tweets at: https://twitter.com/MECFSconf_mtl
  24. shannah

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    The Lyme community talks about 'thick blood' all the time. Some feel serrapeptase, natokinase and other enzymes help, none of which did anything for me - except further deplete the finances.
  25. shannah

    New research package?

    I sent you a personal message.
  26. shannah

    New research package?

    @lnester7 There's the 'Summary of Recent Significant Findings in ME Research' (last updated May 2017): https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o
  27. shannah

    Eukaryotes in the gut microbiota in myalgic encephalomyelitis/chronic fatigue syndrome

    Interesting. Many of us have fungal issues that don't respond to treatment. Could this somehow be connected?
  28. shannah

    Dr. Skip Pridgen's Protocol

    Celebrex needs to be taken with food to prevent stomach upset. @cb2
  29. shannah

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    Is any expected completion date available @Ben H ?