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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. Rebeccare

    What careers did we all. Do before becoming sick?

    It's creative and marvelously fulfilling when my brain and body are working well enough. But sometimes I wish I got into a profession that required a little less brain power, and (when I was spending time in a classroom) a LOT less exertion.
  2. Rebeccare

    What careers did we all. Do before becoming sick?

    It's fascinating to see what all of you studied in school and did for work! I also got sick while in college. While I somehow managed to graduate with a bachelor's degree in special education and an initial teacher's license in severe disabilities, I never was able to work full time (student...
  3. Rebeccare

    Chills from Mestinon?

    What a coincidence! I was just here for the first time in several weeks so your post is perfectly timed. Maybe I was feeling Judee vibes coming in my direction :) I was not checking my BP or HR then. In retrospect I probably should have, but I didn't get a blood pressure cuff until starting...
  4. Rebeccare

    Comment by 'Rebeccare' in 'RANDOM THOUGHTS On dealing with the New Year before it can deal with us.........'

    May 2023 be the year that we can all embrace the wisdom of the slow, yet long-lived tortoise. Your post made me think of Woody Guthrie's 1943 New Years resolutions--have you ever seen them before? They're listed out in the link below, if it's too hard to read them in the image...
  5. Rebeccare

    New research on why people get colds in the winter: cold noses!

    I was just reading about a fascinating study in which scientists theorize that the temperature of your nose explains why people tend to get more colds when it's cold out: https://hms.harvard.edu/news/why-upper-respiratory-infections-are-more-common-colder-temperatures The key is an element of...
  6. Rebeccare

    PATIENT-LED RESEARCH COLLABORATIVE ANNOUNCES $4.8 MILLION IN BIOMEDICAL RESEARCH AWARDS FOR LONG COVID AND ASSOCIATED CONDITIONS

    Here's where at least $2 million of that money came from: https://patientresearchcovid19.com/patient-led-research-collaborative-receives-3m-in-funding-for-long-covid-research-from-balvi-a-new-fund-for-high-impact-covid-projects-from-ethereum-co-founder-vitalik-buterin/
  7. Rebeccare

    Specific ways brain fog affects everyday life activities

    That sounds very similar to my experience! That's typical, I think, for someone with ME/CFS. The issues tend to mainly be with working memory, short term memory, attention, concentration, processing information, and executive functioning. Looking down at my watch and not being able to...
  8. Rebeccare

    Alternatives to Fosamax?

    @lenora , here are your posts in a new thread!
  9. Rebeccare

    Comment by 'Rebeccare' in 'RANDOM THOUGHTS ….What, rose colored ones aren’t good enough ??!? How about green-tinted glasses for pain ???'

    This is yet another one of those studies that falls under the category of: "How did it ever occur to them to study this??" The simplest solutions are my favorites. And so few side effects--other than the world turning green!
  10. Rebeccare

    Comment by 'Rebeccare' in 'Flittering and Skittering About - NEW SONG with a Music Video'

    Between the music and the stylized graphics my first response to this video was: "This looks like an amazing video game!" Please do let me know when "Howard's Fantastical Electrical Wheelchair Adventure for Playstation" is released. It looks like it has the potential to become a cult phenomenon.
  11. Rebeccare

    Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases -- Atlantic Article 9-26-22

    MODERATOR'S NOTE: SEVERAL POSTS HAVE BEEN MOVED TO A NEW THREAD CALLED "WOULD YOU DISMISS ABUSE AS A CAUSE FOR ME/CFS?"
  12. Rebeccare

    Comment by 'Rebeccare' in 'RANDOM THOUGHTS … The Difference Between ‘Smart’ and ‘Genius’ Is Knowing When Your Tent’s Been Lifted? Really ??!!??'

    I'm pretty sure I saw a bag of mini Milky Way Midnight bars in the store the other day. They are quite good!
  13. Rebeccare

    Abilify- Stanford Clinic Patients

    MODERATION NOTE: SEVERAL OFF-TOPIC POSTS HAVE BEEN MOVED TO A NEW THREAD CALLED 'ATTITUDES TOWARDS ME/CFS RESEARCHERS.'
  14. Rebeccare

    Landmark study finds causal link between nature walks and stress reduction

    I wonder if virtual reality technology would still have some benefits?
  15. Rebeccare

    Comment by 'Rebeccare' in 'Above and Beyond (w/pictures): from Here to There in My Power Chair - Bridges and Overpasses Edition'

    Or the 'Sunny Day Went for a Walk' thread (it can be a walk or a roll) https://forums.phoenixrising.me/threads/sunny-day-went-for-a-walk.79617/ It makes me incredibly happy to see how much independence you have gained.
  16. Rebeccare

    Not all your posts to me are being alerted to me for some reason. I am sorry if I do not respond this is why!

    This happens to me as well; it's a quirk in the forum software. If you receive an alert about a thread but don't click on it and go to the thread, then you will not receive subsequent alerts about that thread until you have gone back to the thread and gotten caught up. One way to make sure...
  17. Rebeccare

    Histamine as an inducer of symptoms in IBS

    That was actually my mother's experience. After a series of serious illnesses she became allergic to just about everything. She also started having GI issues, which didn't seem to be connected to the allergy issues at first. She was on the verge of being diagnosed with IBS when one day she...
  18. Rebeccare

    Blood Tests to Rule Stuff Out - Should I be looking for anything?

    I don't think so. I've had all of these tests, and the only one which is ever off is ANA, which is an unspecific measure of autoimmunity. As you said, they're mostly to rule other things out and not to identify what's going on. These testing recommendations from the ME/CFS Clinician...
  19. Rebeccare

    Studies on Hydrogen Water and HRV Biofeedback Recruiting

    Oops! Yes, that's a typo; they really do seem to suck at making flyers :headslap: But I first saw this flyer on Solve ME/CFS Initiative social media, and I don't think they'd pass along something that wasn't legit...
  20. Rebeccare

    Stanford Study on PEM and Crashes Recruiting

    I recently saw that Snyder Lab at Stanford University is recruiting people for their study on PEM and crashes. Participants have to be in the United States with ME/CFS, Long Covid, or chronic Lyme, and must have PEM that lasts at least 24 hours. It looks like they'll send you a kit to collect...
  21. Rebeccare

    Hydrogen Rich Water for ME/CFS - Friedberg Pilot Study

    They're recruiting for another study on hydrogen rich water: https://forums.phoenixrising.me/threads/studies-on-hydrogen-water-and-hrv-biofeedback.88232/
  22. Rebeccare

    Studies on Hydrogen Water and HRV Biofeedback Recruiting

    I just saw this poster for two studies going on at Stony Brook University in case anyone might be interested. I had previously done a different home study with them and it was an easy and positive experience. Dr. Fred Friedberg is the principal investigator.
  23. Rebeccare

    Hayfever - Anyone suffering?

    This is what things looked like in my state two weeks ago: So yes, I think I'd say that the amount of allergens in the air this year is particularly bad, as are many people's reactions to them!
  24. Rebeccare

    Late pandemic immune dysregulation? Opportunistic infections and unexplained pediatric hepatitis

    I wonder if this this similar to the way that measles can affect the immune system, or are there different processes going on?