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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. Woody

    Canadian Criteria -- What Additional Symptoms Do You Have?

    Have you checked Jodi Bassett's Hummingbird site? She has an extensive list there. Here's the link just in case you haven't seen it. http://www.hfme.org/themesymptomlist.htm
  2. Woody

    Article: Olympic Champion Supports ME/CFS

    Thanks for the link Cort. It's great to have anyone with influence step up for our cause! Hopefully it will encourage others to do the same.
  3. Woody

    CDC XMRV Retrovirology Study on CFS Published

    Good post. Thanks for the perspective, and appreciate the humor.
  4. Woody

    Severe pain in thighs

    I can relate to the chain saw, but I'm not sure where to start cutting!
  5. Woody

    Severe pain in thighs

    Sorry to hear of your pain in your thighs. This was one of the early symptoms that both my sister and i had/have. Mine are burning right now, but you seem to be in more pain than I am. I've found that regular movement, stretching, and elevation helps some in addition to what you've already...
  6. Woody

    Hope deferred ...

    I couldn't have said it better. I'd like to do something to make it happen for the next generation, letters, signatures, ... If help comes sooner, that would be great, at 56 maybe I'll see some of initial treatments. I'm just making the best of this DD that I can, and finding something good...
  7. Woody

    5th Invest in ME/CFS Conference - Programme May 24 2010

    Shrewsbury :Sign Good Job: Shrew, You've got some great ideas. It would be great for them to do a webcast, or capture the meeting on video and sell the DVD's. This should cover their costs and would be great PR to the ME/CFS world. I think they would feel some kind of public pressure...
  8. Woody

    The term "Post Exertion Malaise" is also insulting.

    Misconceptions As a H.S. coach for many years, the term Exertion Intolerance, brings to mind the athlete that needs a gut check. The type that is always with the trainer/physical theripist, and is late to practice. I can only imagine the other athletes reactions to a doctors note stating...
  9. Woody

    The term "Post Exertion Malaise" is also insulting.

    I really like the word disorder. It makes it clear to everyone, doctor, patient, and public that something is wrong. It can't get turned around and used against us. With that in mind, how about: Discrepant exertion amplification disorder, or DEAD :cheeky grin: *Meaning dead tired, dead...
  10. Woody

    Why Dont Doctors Listen to Women?

    Just wanted to add Thank you Dr. Klimas!:Sign Good Job: Maybe someone could send her a link, so she knows she is appreciated. Another thought, I wonder if the disbelief we encounter is propagated by a greater degree by male doctors?:Retro eek:
  11. Woody

    Why Dont Doctors Listen to Women?

    Shewsbury I really don't think that women are less believed than men. I think that we are all "branded" by the label, ingnorance ... Just look what Dr. Yes is going through with his doctors. It took me (male) over 7 years to get a diagnosis along with considerable medical abuse and...
  12. Woody

    The term "Post Exertion Malaise" is also insulting.

    How about something simple so both lay and professional people know that we do not react to exercise in a normal way, and it makes us sick? Maybe something like: post exertional disorder post exertional anomaly post exertional abnormality
  13. Woody

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

    Jackie I'm glad you PM'd him, and hopefully he'll be back on soon. I have to laugh at the mental picture of the rescue mission, with Pheonix Rising emboldened above the colors. Don't forget you need to claim the territory, "State of Confusion" and you're are certainly entitled to proudly wear...
  14. Woody

    Clothes sensitivity?

    Marco Athene. I fear my 'going commando' might be even scarier than your going bra-less. With always wearing loose waistbands its an accident waiting to happen. Marco, be careful of the tumbleweeds if you go cammando!:Retro eek:
  15. Woody

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

    Can someone PM Dr. Yes? Thanks Dreambirdie for sending the e-mail. I've beem lurking on this forum for awhile, but just started posting recently, yet I feel like I know the infamous Dr. Yes. I think he took quite a gut shot yesterday, and am concerned that he has not replied in any manner...
  16. Woody

    Clothes sensitivity?

    I can definately relate. Comfortable, broken in levi's, 100% cottton tee shirts with a loose neck, no watch, or ring, and barefoot when I can get away with it. Swimming/floating in a nice warm pool is bliss!:Retro cool::victory:
  17. Woody

    My doc offered to put me on Raltegravir

    I agree 100%. These types of matters need to go through you medical professional. Any private infomation gleaned from the WPI needs to stay private, as well as off these boards for the good of our community and the WPI. I'm open for freedom of choice as long as the person walks in with eyes...
  18. Woody

    Article: How to Answer "What's Wrong With You?"

    \ I agree, a simple, but somewhat vague answer is usually best. I usually say, I have a chronic illness, then deflect. If they bring it up again, I tell them that I choose to focus on the positives, and deflect again. It works every time for me. Quick and easy even when the fog is heavy.
  19. Woody

    Help get US govt funding by watching CFSAC meeting live online Mon May 10

    Somehow i missed the url, can someone please post the address? I have 3 computers here at home, do we get counted as 1, or 3 if all 3 computers are playing the video?
  20. Woody

    CFS etc over on Bad Science

    Do I detect a hint of sarcasm, topped with a copious amount of reality?:Retro eek::Retro biggrin: