• 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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    Rituximab Phase III - Negative result

    I am wondering if the idea has been considered that Rituximab might have worked in the first patients who had both CFS and cancer because it treated the cancer, and that the cancer might have been contributing to their CFS even before they were diagnosed with cancer. I was treated this year for...
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    How to get people to sign up for easy no-cost fundraising programs? Why are people not?

    Thanks, Silencio! I did find that starting off with a question defining the audience seemed to work when I posted about Giving Tuesday last year. Your example sounds like when I've tried to write Google Adwords. You seem pretty good at it. :) Hope you don't mind if I use that as a template. I...
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    How to get people to sign up for easy no-cost fundraising programs? Why are people not?

    I've been posting about easy no-cost (money nor time) fundraising programs from time to time for a couple years, such as eScrip and Benefit Mobile. In that time, exactly 1 person other than myself has signed up. Based on thread view counts, I estimate that maybe 100-200 people have seen the...
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    OMF-You make these breakthroughs possible!

    Here's one I just Googled: https://shopitforward.com.au/ It looks like somebody would have to volunteer to contact them to add some Australian ME charities to their list.
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    OMF-You make these breakthroughs possible!

    eScrip and Benefit are U.S. only. Other countries have similar programs if anyone wants to research their own country's. I'm unable to test other countries' programs so haven't recommended any.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Yes, please. I posted two ways, as easy as AmazonSmile but with 10+ times the payout, for everyone to be able to help regardless of how much money you have to spare, here: https://forums.phoenixrising.me/index.php?threads/omf-you-make-these-breakthroughs-possible.61655/#post-1003021
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    OMF-You make these breakthroughs possible!

    I would like to encourage everyone to help OMF, Ron Davis, and the research team, and here are two ways to contribute even more money without cost to you! eScrip Through eScrip, your local grocer will contribute up to 5% of your purchases to the non-profits you designate. It doesn't get easier...
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    Support #MEAction Fundraisers

    You can contribute to MEAction (and other ME/CFS non-profits) even if you don't have money to spare or in addition to what you have already given by using the Benefit Shopping App where every purchase supports your non-profit with a 2-20% rebate. (That's up to 40 times the rate Amazon Smile...
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    Janet Dafoe in hospital

    The chocolate chip pancakes if they have them. Those were good. I think the usual advocacy also takes our minds off of having cancer which I find is much more emotionally and mentally difficult than living with severe bedridden ME/CFS.
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    Janet Dafoe in hospital

    OMG! Best wishes for your recovery.
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    Donate 2-20% of your everyday shopping to ME/CFS non-profits or to yourself! (Benefit Mobile)

    Continuing the momentum after May 12 and in honor of ME/CFS Awareness Month, let's help our researchers and non-profits do their work! Download the Benefit Mobile app (http://benefit-mobile.com) and use it at checkout for your everyday shopping, in-store and online, to support ME/CFS...
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    Donate up to 5% of your grocery shopping to ME/CFS nonprofits at no cost to you.

    In honor of ME/CFS Awareness Month, here is an easy fundraising action item to donate up to 5% of your grocery shopping to ME/CFS nonprofits at no cost to you. This is mainly for residents of the San Francisco Bay Area, California, and some other states in the U.S. Sign-up at http://escrip.com...
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    Research update from Prof. Ron Davis (video!)

    In the beginning of my illness when I was more severe, when I had blood drawn, I saw that the color of my blood was first a rusty brown orange, then a milky purple and glopped out of the line into the tube with the consistency of a blueberry yogurt drink. I sat there looking at that and wondered...
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    Research update from Prof. Ron Davis (video!)

    Thank you for this info. It is truly amazing how many irons in the fire Prof. Davis has. After reading Cort Johnson's latest interview with Prof. Davis where he provides more details about the "Weird Blood Project" in which they are finding slower blood flow from blood vessels to capillaries in...
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    Research update from Prof. Ron Davis (video!)

    Prof. Davis mentioned that he was surprised that they haven't found a microbe yet and mentioned looking for viruses. I recently saw a chart of diseases with the closest gene expression to CFS in which SIRS (systemic inflammatory response syndrome) was #1 and disease caused by parasite was #2. I...
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    MONTOYA STUDY needs more participants

    They just sent something in the mail to participants saying they had just finished recruiting 600 participants and will soon begin testing the blood. Yada yada explaining that medical studies take a long time, years, to complete. Well, fine, but then don't tell us at the beginning of the study...
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    San Francisco area - CFS Study - $1300 for healthy women

    Is there an "official" Web site with this recruiting information? That would be helpful for recruiting and reposting. Just curious, if anyone knows, were the CFS patients also paid $1300 for the study or they didn't need that incentive?
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    JPMorgan exec's Lyme infection spotlights need for quick treatment

    One of the better articles I've read about Lyme disease, recognizing the severity of the third stage.
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    Article: ME/CFS Recovery/Recovering Stories Requested

    This CFIDS Assn post and Suzanne Vernon's comment about studying people who had recovered reminded me of this thread. "How would you define "remission"?" https://www.facebook.com/photo.php?fbid=10150936923472108&set=a.74987762107.90825.47921632107&type=1&theater Also, still wondering
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    Exercise

    Test and experiment continually, within walking and outside of walking. Shorter walks, walking more slowly, avoiding hills, taking mini breaks during a walk, walking every other day, etc. I tried walking daily for a few years and my distance/time barely budged. Then I tried stretching, tai...
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    CBT/GET vs massage therapy

    Massage therapy has given me back a life in the last four months. From mostly bedridden for 5+ years to now doing activities almost every day with short lie down breaks. I was planning to write about after it progresses a little further. I don't even know what to say. First a quack put me on...
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    Doubt Cast on the ‘Good’ in ‘Good Cholesterol’

    Doubt Cast on the ‘Good’ in ‘Good Cholesterol’ http://www.nytimes.com/2012/05/17/health/research/hdl-good-cholesterol-found-not-to-cut-heart-risk.html Ugh... basic science 101... correlation does not imply causation, and strength of correlation has nothing to do with it either.
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    The Surprising Shortcut to Better Health

    That's why this is posted in "Other Health News and Research". Some people with CFS are more well than others, and some people are more well at some periods than other periods. I couldn't stand up for 5 minutes or sit for 1 hour for several years. At some points, I couldn't even roll over in...
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    The Surprising Shortcut to Better Health

    The Surprising Shortcut to Better Health http://well.blogs.nytimes.com/2012/05/04/the-surprising-shortcut-to-better-health/ Snippets:
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    Dont Just Sit There

    Dont Just Sit There http://www.nytimes.com/2012/04/29/sunday-review/stand-up-for-fitness.html
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    Post-Prozac Nation: The Science and History of Treating Depression

    Post-Prozac Nation The Science and History of Treating Depression http://www.nytimes.com/2012/04/22/magazine/the-science-and-history-of-treating-depression.html?pagewanted=all Interesting analogy: Mood -> Behavior or Behavior -> Mood ?
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    Article: ME/CFS Recovery/Recovering Stories Requested

    I am recovering in progress. Do you want my story now or in 3 or 6 months? Or updates at a few time points as it progresses?
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    Has anyone who has taken Valcyte developed cancer?

    I remember Dr. Montoya mentioned that one patient dropped out of the clinical trial to get treated for cancer but that it was unrelated to the trial, but did not say how they determined it was unrelated. Does anyone know more about this?
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    Yoga Video Recommendation?

    There's another thread here: http://forums.phoenixrising.me/showthread.php?13189-Yoga-Please-post-yoga-videos-easy-enough-for-people-with-CFS-here myyogaonline.com as mentioned above is the best I've seen for streaming video although I haven't tried a subscription yet. I just tried my...