• 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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    Article: Equal Pay/Equal Power/Equal.....Research Funding: the Campaign to End Chroni

    Love your blog Cort. Am posting it on my FB page today. I gave a talk in 1992 at the national Congress on Women's Health called "Not All in Your Head" focused on the conditions which disproportionately affect women but are dismissed as being fabricated or exaggerated. Ironically, my husband &...
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    A Doctor's Wake-Up Call on "Awareness" Day

    Wow. That's all she could say: Wow. (paraphrased from one of my favorite children's books). I can only echo everyone else's comments & try to add a focused strategy here. First: Dr. Yes--where in NY are you? My first recommendation is to send your story WITH THE DOCTORS' REAL NAMES FILLED...
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    References/Citations Needed

    I am writing a paper for the medical journal The Female Patient (which goes to 40,000 Ob/gyns & 20,000 nurse practitioners in the US) & am struggling with tracking down a few references for citations. Can anyone direct me to the source for the often quoted statement that "housemates & sexual...
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    Gynecological problems - Xmrv

    I am writing an article for the medical journal The Female Patient tentatively called "Why Gyn's Need to Know About CFS". Thsi goes to 42,000 ob/gyns & 20,000 ob/gyn nurse practitioners. I welcome any comments/input that women with CFS may have to make sure I don't miss anything. Yes, I have...
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    Sock It To ME: a community public art project to raise awareness and funds.

    I'm always happy to help. . .let me know when there's something newsworthy. Sorry I don't have time to go back & review this whole thread. My CFS focus right now is a book for kids/teens with CFS (& the people who love them) that I'm working on with my son. Signed publishing contract...
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    New!! Dr. Donnica and Dr. Enlander videos

    New cfs video on the doctors channel Here's the link to my most recent CFS video on TheDoctorsChannel.com. Remember that these are designed to be very short (1-2 mins). The way we made them, BTW, was that Dr. Enlander & just talked about the most basic CFS-related topics we thought were...
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    New!! Dr. Donnica and Dr. Enlander videos

    Thanks for all the great feedback (even about the hair--I've never had it curled before--I made the mistake of telling the hairdresser "just do whatever you think looks best" while I was studying my notes for my GMA Health segment that day!). I wouldn't typically use "medicalese" without...
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    New!! Dr. Donnica and Dr. Enlander videos

    Not sure if this is where I should post this, but. . .Just wanted to let you know that Dr. Derek Enlander & I just filmed some videos for TheDoctorsChannel.com on CFS. This site provides SHORT educational videos for physicians on a variety of topics. The intro to CFS video I did is available...
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    why is there no new xmrv news from wpi?

    My husband, children & I went to NYC last week to give blood for Dr. Derek Enlander's XMRV study. Unfortunately, it's blinded, so we don't get to know the results. While we were there, we made 3 short videos for TheDoctorsChannel.com to educate physicians about XMRV & CFS. I'll let you know...
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    DR OZ TODAY (12/3) on CFS/XMRV

    Sorry, I'm way behind in reading all of your insightful comments, but I just wanted to make sure that someone posted the link to the Dr. Oz CFS/XMRV segment on YouTube (I'm guessing that someone on this forum posted it?!): http://www.youtube.com/watch?v=_WEUC7hRXzM.
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    Please WRITE and THANK DR OZ SHOW

    Thanks to all for your input, both here & to those who sent me emails & FB messages. I apologize to those I may not have answered personally, but I have been traveling without a computer & my in-box is so swamped I may have read messages but not responded. Back now & trying to catch up.
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    Please WRITE and THANK DR OZ SHOW

    I asked the producer about posting the Dr. Oz segment on YouTube & she said they don't do that. She also said that the show does air internationally, but interested folks would have to check their local listings for times/topics. Sorry!
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    DR OZ TODAY (12/3) on CFS/XMRV

    Well, I finally got a chance to watch the Dr. Oz segment & to read all of your comments! Overall, I thought they did a terrific job although I was a little disappointed that some of my comments were edited out. The editing was masterful in a way--because if I hadn't been there I wouldn't have...
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    Dr oz preview - "simple stretching for xmrv"

    There's not much to say about it other than just as some PWC are sensitive to light (photophobia), some are sensitive to noise/crowds or any other kind of overstimulation.
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    Dr oz preview - "simple stretching for xmrv"

    Thanks so much to Dreambirdie for getting the ball rolling on this and for doing all the behind-the-scenes AGITATING to make this happen! Thanks to all for all of your support for my small part in this in advance of the show coming out. And, just a gentle reminder that if you do like the...
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    Dr oz preview - "simple stretching for xmrv"

    Urgent: Dr. Oz show My husband just informed me that when he went to Tivo the Dr. Oz Show for tomorrow, that there are 2 shows which air at different times, at least in our area. In our area, it's the 3pm show which covers the CFS segment. I would hate for people to be looking for the show...
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    Dr oz preview - "simple stretching for xmrv"

    Thanks to this group, I did persist with following up with the producers at the Dr. Oz Show and was given the go-ahead to write a companion article for the segment for their website. I only had less than an hour to get it together & they did get it up right away. They were great in allowing me...
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    Dr oz preview - "simple stretching for xmrv"

    I wouldn't say that they tied my hands. . .there were just ground rules and boundaries for the discussion. For example, with all due respect to the men with CFS (one of whom I'm married to and one of whom I gave birth to), this segment was intended to focus on CFS in women (although I did say...
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    Dr oz preview - "simple stretching for xmrv"

    As I recall, that was the first thing I said. Nearly word for word. I also emphasized the biologic basis of CFS.
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    Dr oz preview - "simple stretching for xmrv"

    Thanks Koan for explaining that. The other issue when you are a frequent TV doctor-guest is that you have to balance the feeling of frustration with not being in control with the potential benefit you can do with the bit of time/input that you do have. You also have to develop a pretty thick...
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    Dr oz preview - "simple stretching for xmrv"

    In defense of Dr. Oz, he is a VERY good cardiovascular surgeon, but CFS is not something he treats/knows much about/etc. Much like most other doctors. The Fox interview was clearly unscripted and an upcoming "preview" of several segments designed to get people to tune in. Give him a chance. ...
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    Dr oz preview - "simple stretching for xmrv"

    Another differentiating fact between CFS & depression! I was so prepared to discuss the differences between CFS & depression on the Dr. Oz Show, but didn't get to cover that topic. I had it down to 3 great sound-bites. Oh well--I'll have to wait for Oprah to call. . .!