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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. C

    Book out now 'Science, Politics, .......and ME' by Ian Gibson and Elaine Sherriffs

    Hoo boy. I'm an editor and a book designer who deals quite a lot with self-published works. Having glanced at some of the text, I can tell you that I've seen much worse. It's probably had some editing already. That doesn't mean it wouldn't benefit from more substantive editing, mind you, just...
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    Article: Phoenix Rising YouTube Video Thread

    The guy I mentioned earlier, who e-mailed the video link to people he knew? Discovered that his cousin has had ME for 24 years. Yikes. He hasn't seen the cousin since before the disease struck -- they're only in e-mail contact -- so he might have never known otherwise. In other news, a...
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    Article: Phoenix Rising YouTube Video Thread

    Thanks to everybody who said nice things about the song. The images in the video, though, have added so much power. Ron the Drummer has been sending links to the video to everyone he knows. One of them e-mailed the link to people HE knows with the following comment: "I'm not asking anyone...
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    Phoenix Rising Video press release

    Thanks for all the replies! I think I have the quotes I need from people who participated in the video. I'm going to try to get a couple versions of the press release out by today for ME Awareness Day. After that, I'll be sending it out for ME Awareness Month. If anyone wants to relay a...
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    Another ME video by another musician

    "Misunderstood" is for sale on Mark Emmins' website! http://www.markemmins.com/ I'm not sure what's going on with the video. If you read his blog, it seems that strange things are afoot. But at least he got the song out before Wednesday. Not bad, given that he was recording it just last week.
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    Article: Phoenix Rising YouTube Video Thread

    I've started a new thread about a press release about this video in Action Alerts and Advocacy. I'm hoping to get the press release out to newspapers for ME Awareness Day on Wednesday, May 12. For the release, I'm looking for quotes about how the video affected people with ME, or how it...
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    I Remember Me/Stephen Paganetti

    I did a brief Internet search and didn't turn up anything. I'd love to know what happened to him too.
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    Dr. Donahue propagates the myth of graded exercise as beneficial for CFS

    Thanks for the alert. My comment didn't add much information, but I figure there's power in numbers.
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    Phoenix Rising Video press release

    Hey gang, I'm writing a press release about the Phoenix Rising video. My goal is to send it to newspapers before ME Awareness Day on Wednesday, May 12. To make it more interesting, I'd like to include quotes from at least one or two people with ME. There's tons of good material from the...
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    Article: FINE

    I've said this elsewhere, but the irony is that the pragmatic rehabilitation had no long-term impact on anxiety or depression. Even if ME were caused by psychological factors, as the psychologizers say it is, their solution wouldn't help.
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    Another ME video by another musician

    I'm looking forward to hearing/seeing the song too. Let's hope this is a trend. We need hundreds of artists on the case!
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    Another ME video by another musician

    A rock musician by the name of Mark Emmins is recording a song and making a video for ME awareness. He's asking ME sufferers who are "wiling to let the world see them bedridden and ill" to send pictures of themselves to use in the video. If you're interested, send your photos to...
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    Article: Phoenix Rising YouTube Video Thread

    *jumps up and down* I'm really happy to hear that Gracenote's relative donated because of the video. I hope she becomes one of many.
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    Why Antidepressants Dont Work for Treating Depression

    Another point I forgot to mention before hitting the post button ... I find it hard to believe that 10 percent of the entire population are on antidepressants, but many of you have firsthand experience of doctors pushing them on you when depression isn't your problem. THAT needs to be addressed...
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    Why Antidepressants Dont Work for Treating Depression

    I personally know two people who have been helped by antidepressants. One hasn't been able to get off them, but he hasn't tried to kill himself lately. Another weaned herself off Prozac with the help of her doctor. (The latter friend would totally agree with the original poster about...
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    Let's "adopt a sequence" (with funding) of an XMRV isolate!

    Enlightened Aha! Thanks Frickly. It just blows my mind that you could get a response so quickly from Judy Mikovitz herself. So, if I understand what she's saying, sequencing the genomes of people with XMRV will provide data about how the retrovirus interacts with different genes. Depending...
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    Phoenix Rising YouTube Video Thread

    That is one of my very favorite parts of the video. Exactly what I wanted to get across, and the image gives power to the words.
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    Phoenix Rising YouTube Video Thread

    I posted to the Whittemore Peterson Institute's wall on Facebook this morning. :)
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    Phoenix Rising YouTube Video Thread

    A word from Cinder Bridge's producer The feedback is starting to trickle in, all positive. The comments I most want to share come from Drew Raison. He's our producer, and he mixed down "Everybody Knows About Me." He also contributed to the arrangement -- he wrote and played those amazing organ...
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    Phoenix Rising YouTube Video Thread

    Hey, there it is! Excellent, thank you. I'll post the link tomorrow. :)
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    Let's "adopt a sequence" (with funding) of an XMRV isolate!

    If we want to get fundraising efforts off the ground, I think we need to elaborate a little bit. 1. What knowledge will we gain by sequencing? 2. What benefits will this have for ME/CFS sufferers? 3. What benefits might this have for the 3.7% of the population that is healthy and XMRV-positive...
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    Phoenix Rising YouTube Video Thread

    I've posted the link up on my blog and on Facebook. I told Teej, who doesn't use Facebook, that I'd post the link to the WPI's wall on Monday (when there would be more traffic). I think they'd appreciate the big ol' donate-to-WPI link toward the end. However, I posted something else to their...
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    Phoenix Rising YouTube Video Thread

    Congratulations on getting this thing together. Wow. The first frame really got me. It's beyond surreal to see someone else's envisioning of the person staring out the window. I had only ever seen that in my head. The "don't look sick" issue is a tough one. When I see the healthy-looking people...
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    Ila Singh talks XMRV, replication, drugs, and animal studies (article + video)

    Very exciting! One thing puzzles me, though. It was my understanding that some ME researchers suspected a retrovirus all along. Why didn't somebody like Nancy Klimas -- who also works with AIDS patients -- try putting ME patients on antiretrovirals for HIV long ago, just to see if they helped...
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    Design a Brochure

    I've spent some time as a professional copyeditor. If you like, I can proofread the text for you before you print it. E-mail it to susan (at) cinderbridge (dot) com. This is the kind of thing where you really don't want typos, capitalization errors, etc. :)
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    DSM5 - Ticket back to Reevesville

    Seeking clarification I went back to the Proposed Revision page for CSSD, and something occurred to me. Is this actually worse than what we have already? Don't get me wrong. I don't like the proposed "complex somatic symptom disorder" one little bit, for all the obvious reasons. But it seems...
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    Phoenix Rising YouTube Video Thread

    It's great the way this has taken off! Something to consider, especially given how difficult it is for people to send in photos: the video does not have to mimic every line in the song. "Two-ton weights that hold me down" is a metaphor for the way the disease feels ... it's not a metaphor for...
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    DSM5 - Ticket back to Reevesville

    My DSM5 comment Thanks, Khalyal. I followed the DSM5 link on your blog and posted the following comment: How do you propose to differentially diagnose "complex somatic symptom disorder" and a disease with a biological cause? If it's CSSD whenever doctors haven't found evidence of physical...
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    Psychology today: Dr Borigini health terrorists part 2

    That's disappointing. Pamela Weintraub is also a blogger for Psychology Today, and she had a post criticizing the CDC study linking ME with childhood sexual abuse. She's written a book about the politics behind Lyme disease -- Hilary Johnson wrote her foreword -- so she smelled a rat right away...
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    Phoenix Rising YouTube Video Thread

    Hey, thanks! You have the permission of the copyright holder (that's me) to make as many copies as you want and share it around. I want to get the song/message out there, and me describing it to people just makes it sound like a public service announcement set to music. :)