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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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  1. tymewarp#9

    Compression garments for orthostatic intolerance

    FYI, FlightHelmet.com has some size Small in stock- I just this afternoon received mine, Sm reg in "very good" condition (I'd been waiting & praying & intermittently watching since summer for my size!)- I have been wearing for several hours now, & I know it's too early to tell, but the...
  2. tymewarp#9

    New Theory Links Depression to Chronic Brain Inflammation

    Thanks for this, Diesel; I'm going to need to mull this over a while! Seems like it might be simple (relatively) to experiment with - tho I don't like popping ibuprofen, acetominophen, etc. Interesting, nonetheless!
  3. tymewarp#9

    What binders does everyone use while treating BIOFILMS

    -Just wondering the same thing..
  4. tymewarp#9

    Misfolded Neural Proteins Linked to Autism Disorders

    Leela, thanks for posting this (more to try to wrap my 'bent proteins' around..!) t.
  5. tymewarp#9

    NEW! - UK DEPT. OF HEALTH to BAN ALL ME/CFS BLOOD DONATIONS from NOV 2010 (from MEA)!

    If someone gave blood saying "No I don't have CFS" and then, after it had been pumped into someone else, said "Ho ho, actually I do have CFS", what exactly would be the punishment? Because, since CFS is all in our minds, we only have it if we SAY we have it. If say we haven't got it, and claim...
  6. tymewarp#9

    Easy Solution to Treat CFS - Dr. Oz

    Letter sent. Thanks Everyone, for firing me up, too! (*phew!*) -t.
  7. tymewarp#9

    Easy Solution to Treat CFS - Dr. Oz

    I am completely "fogged in" and deliriously tired & probably this isn't the best way to do this, but I just wrote kind of a general letter (started out intending a concise, advocacy kind of message, but I can never seem to write something which doesn't morph into a long ramble! :headache::Sign...
  8. tymewarp#9

    A Senator Responds to a CFS Letter

    Right On, Ballard; ThankYou for doing what is so difficult for so many of us.. THANKYOU!
  9. tymewarp#9

    Reminder!! WPI opening on saturday - donate money

    KC22, that is a wonderfully thoughtful way of transforming your loss (((Hugs)))
  10. tymewarp#9

    Article: Standing Up For ME/CFS: Rivka Takes on Washington

    Rivka, You Rock! THANKYOU:victory:
  11. tymewarp#9

    Excessive Heart Rate Response to Orthostatic Stress in POTS is Not Caused by Anxiety

    Thanks Everyone, for all this info; maybe helps explain why I call ME/CFS/FM the "damned if you do, damned if you don't" disorders, regarding exercise. Physical activity can simultaneously help some of my symptoms, while making other symptoms worse :Retro mad:. Maybe this also hints as to why...
  12. tymewarp#9

    What makes CFS such a hard-edged illness?

    I'm sure there are other illnesses which elicit responses of disgust, disbelief, etc. from ones family/friends & doctors, but I'll bet ME/CFS tops the list. Even mental illness -also 'invisible' in many cases- now gets more respect (after hard battles fought by activists). Couple that abuse...
  13. tymewarp#9

    Post-mental-exertion malaise

    I have so much recognition with what you are all referring to here. The repercussions from mental work (for me, especially work with numbers & accuracy) can be dreadful; I've felt almost paralyzed, almost unable to drive home from work. Highly emotional situations can do the same, only with far...
  14. tymewarp#9

    "Brain Fog"

    Absolutely- stuffed with cottonballs, a couple hundred pounds of them. Another 'sensation' which drives me nutso is so hard to describe: I've labeled it "veiled"; my vision is technically OK, and yet I have the sense of a semitranslucent veil being over my head and eyes. It's as if the...
  15. tymewarp#9

    Hungry all the time

    The Ongoing Battle- I too battle the nagging munchies, and have actually felt hungrier AFTER a full meal than before. Most definately it's worse when I'm short of sleep, in fact I think I very often use eating to actually keep myself awake. Sleep deprivation makes my appetite voracious (isn't...
  16. tymewarp#9

    Comment by 'tymewarp#9' in 'Walmart Strikes Again'

    Carrigon, I am so sorry! :sad: That is really scary- and shows another facet to these 'syndromes', one I've not learned much about yet (all I know is that I DON'T LIKE going thru the detergent or pest-control isles of any store!:scared:) Pulling for you to recupe ASAP, and get that bloodwork...
  17. tymewarp#9

    Comment by 'tymewarp#9' in 'educating your doctor and you'

    Great Thanks for this!!!
  18. tymewarp#9

    Healthzone Canada article: Clinical depression often blamed before diagnosis of fibro

    natasa778, Thanks for pointing us to this article; it is classic.
  19. tymewarp#9

    What Types of Fatigue Do I Experience Poll

    The brainfog is the most distressing for me, & also the most persistent; I only get a handful of days out of a YEAR where I feel mentally clear (and I am very envious of normal people; they have NO IDEA how lucky they are). My brain does that 'shut-down' thing too, which is obviously embarassing...
  20. tymewarp#9

    What Is Your Body Temperature? Rethinking 98.6

    First off, I have three thermometers and they ALL show a different temp by up to a degree difference (such great quality control). Anyhow, I'm usually somewhat below normal. But a while back, I felt 'up'; my mind felt unusually clear, I had more energy than usual, and on a hunch, I took my temp...
  21. tymewarp#9

    Anyone Else get ill after exposure to sunlight - not just the heat

    WOW: My jaw is dropping, because yet once again this forum has shown me that I'm not completely nuts, afterall! (I know this thread has been around awhile, but I felt compelled to chip in.) I KNEW I felt worse after being in the sun, but got the old 'furrowed brow' response from family/friends...
  22. tymewarp#9

    A Doctor's Wake-Up Call on "Awareness" Day

    tee-hee! ....the image of that so-called 'dr.' getting embarassed and his knickers all up in a twist, as he attempts to comprehend some of the more recent scientific papers! HA! I'd not thought of that! :)
  23. tymewarp#9

    Im sad

    Shrewsbury, THANKYOU for having started this thread, and to the other posters; this is exactly what I NEEDED to read/hear, too. The communication difficulties are for me the most heartbreaking part of this disease(s) and I am in complete empathy with you. I now am taking a deep breath and not...
  24. tymewarp#9

    A Doctor's Wake-Up Call on "Awareness" Day

    Dr Yes, this is why I'm so afraid of people in the healthcare industry, and you are a hero for attempting to REASON with such a 'difficult' doctor (to put it nicely). I wish to be like you! (Bravery, self-control, utter tolerance in the face of that abuse - you are amazing!) I'm glad you shared...