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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. gretac

    Article Living With ME/CFS in the Holiday Season :Year After Year

    Yes to all of this! And then they get so used to it that they forget it exists, forget what it really does to us and our lives.
  2. gretac

    Article Living With ME/CFS in the Holiday Season :Year After Year

    I love this: our "jewels of energy" - because they are that to us, much moreso than to people who are well: each bit of energy is precious and irreplaceable, like jewels! That's beautiful; I'm going to use that with my family and friends. It communicates so much more than the spoons metaphor...
  3. gretac

    New study out of Australia

    Hi, @alicec - could you link the thread again? I'm not finding an active link to it in your post. thanks!
  4. gretac

    New study out of Australia

    All I know is that vit D is important for the absorption of calcium in healthy people, but I don't know enough to properly answer your question!
  5. gretac

    New study out of Australia

    Thanks for this - I only scanned through it so far - wow, good, broad coverage of most of the options!
  6. gretac

    New study out of Australia

    but it makes sense - seems like a good working hypothesis
  7. gretac

    New study out of Australia

    Thanks, @matsli for connecting the dots so clearly!
  8. gretac

    New study out of Australia

    Thanks!
  9. gretac

    New study out of Australia

    Great - thanks
  10. gretac

    New study out of Australia

    http://www.sciencealert.com/one-of-the-biggest-myths-about-chronic-fatigue-syndrome-just-got-destroyed "The breakthrough came after researchers from Griffith University identified that patients with CFS/ME were far more likely to have single nucleotide polymorphisms - DNA typos - in the genetic...
  11. gretac

    Transcript of Solve ME/CFS webinar with Dr Unger, Sept 2016

    Yes. She fumbled in response to this question (if you listen to the audio), and was at best less than clear and transparent in her response, as you pointed out. Claimed we need more "studies." Kudos to Dr Nahle for pushing her a bit on that. If CBT could help me "control my illness," guess...
  12. gretac

    Transcript of Solve ME/CFS webinar with Dr Unger, Sept 2016

    First, thanks for all of this, Andy! From p. 4, Functional Impact: Shown in SF36 Scores, 2nd paragraph: I think she says "relative sparing" - i.e., Mental Health and Emotional Role Functioning are spared by this disease - as can be seen clearly by the graph --- hooray, great finding! Do you...
  13. gretac

    Congress proposes to slash CDC's ME/CFS budget to zero

    Response today to my query whether Mass CFIDS Association will post updates on their advocacy progress, including what they find re: how and why the decision was made, as well as of course if funding will be restored there or moved elsewhere: "Yes, that’s a very good idea. I will probably write...
  14. gretac

    Congress proposes to slash CDC's ME/CFS budget to zero

    Wow, Cort did an amazing job reviewing all the ups and downs of CDC research over the years, in a neutral, objective manner that evaluates what they did that helped and what they did that hindered our progress. It's great to have such a comprehensive - and comprehensible! - review all in one place.
  15. gretac

    Illness is not our true self/soul

    @Gingergrrl thanks for such a warm welcome! I probably never did post an introduction, just plunged in. I've been on and off (mostly off!) these forums for several years, but very intermittently, with big gaps in between (like months or years, probably!) It's been a long time this time. I get...
  16. gretac

    Congress proposes to slash CDC's ME/CFS budget to zero

    Here's their webpage: http://www.masscfids.org The progress report above was from an email response to me, not posted on the website as far as I've seen
  17. gretac

    Illness is not our true self/soul

    @Gingergrrl I was so drawn to the title of your thread! It's such a good truth to remember/be reminded/remind ourselves of: yes, this illness is not our true self/soul. We are much bigger than that, our core self is. That's what keeps me going through all the fluctuations - that there's a core...
  18. gretac

    Reframing slowing down

    Yes! I've often reframed the enforced quiet and slowed pace of CFIDS as like being a monk or a hermit on retreat. I have a chance to "pray" (shorthand for meditate, practice mindfulness, send healing energies out for peace, etc.) for the world in ways I wasn't able to in my pre-illness life of...
  19. gretac

    Illness is not our true self/soul

    I love the themes in this thread from over a year ago. Your comments, @ahmo remind me that "This too shall pass" can be a great mantra, too - for me it's actually helpful whether I'm doing well or poorly: obviously when I'm doing poorly it's helpful (especially when I remember to take my...
  20. gretac

    Have you had this realization?

    No contradiction: Truth is multi-faceted and far more vast than the "ism"s you're bringing up. Energy and matter are different manifestations, but highlly interrelated, not mutually exclusive.
  21. gretac

    Prajapati - A Spiritual Master Who Looks After and Guides Animals

    I also like this! (that you link to in your sig, Wayne) "When you sing HU, you may notice a feeling of peace, warmth, and comfort as it fills your world with love" - [3-min. video]
  22. gretac

    Nexavir is the same drug as Kutapressin

    Hi, Sushi A friend just wrote me that Nexavir is no longer being manufactured - she has a supply through October and is worried what will happen then. Do you know anything about that? or about other sources e.g., those mentioned a few years ago, i.e., de Meirleir's 4ME or BioMer in New Zealand...
  23. gretac

    Restore CDC funding for CFS

    Yes, I appreciate knowing it's there! I'll bounce over to that one from now on - thanks! :)
  24. gretac

    Restore CDC funding for CFS

    Yeah, you'll see other similar sentiments on the thread that Bob linked us to, above. But, really? I don't get how it's in their best interest to have us all disabled, for anyone's sake! Not that that stops people making poor decisions in no one's best interest!
  25. gretac

    Congress proposes to slash CDC's ME/CFS budget to zero

    And here's the update from the Massachusetts CFIDS Association already: "Actually, one of the appropriations committee staffers has reached out to us and I will be speaking with him by phone on Thursday, so we are getting action from this email campaign already. Also several of us from the...
  26. gretac

    Restore CDC funding for CFS

    Oh, thanks! Sorry to duplicate threads - I didn't see anything on a quick (and undoubtedly processing-impaired) scan through the threads. At any rate, lots of folks are responding to the Mass CFIDS Assoc. email; they've already been contacted by one of the appropriations committee staffers, and...
  27. gretac

    Restore CDC funding for CFS

    The Massachusetts CFIDS Association sent out this alert that the Senate Appropriations Committee has completely eliminated funding for CFS research at the CDC. Email links and text that can be copied and pasted are included in their post, copied below. I found it easiest to copy the Subject...
  28. gretac

    Extensive list of published, objective medical abnormalities in CFS/ME

    This site http://paradigmchange.me/me-medical-abnormalities/ links to a 172-page PDF that lists research studies establishing objective evidence, with a mini-abstract describing each study and findings, here...
  29. gretac

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    @caledonia , I really like this idea of @Valentijn 's: it answers the concerns I expressed over at your ME Advocacy website, which I'm reposting here: I applaud the energy (lol!) behind this. Most of this looks awesome. I have two - turns out, three - misgivings: First, I am concerned about the...