• 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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Search results

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    Dr. Neil Nathan's new book -- Toxic: Heal Your Body, from Mold Toxicity, Lyme Disease, MCAS and ...

    Dr. Neil Nathan has a new book coming out. _Toxic: Heal Your Body, from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness_ (to be released Oct. 9th). The foreword is written by Robert Naviaux, who is working with Ron Davis and is researching ME...
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    Emergency Hurricane Irma help for sick ME friend; super easy via Amazon “wish list”

    Hi all, if this post is not appropriate to post on Phx Rising, I'll totally understand, and please simply let me know or remove the post. I'm actually really worried about my friend described below. -- Rivka Emergency Hurricane Irma help for sick ME friend; super easy via Amazon “wish list” We...
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    The Time is N.O.W. - National Women's Advocacy Organization Joins the Fight for ME/CFS

    Hi all, this National Organization for Women "Issue Advisory" has been updated and had the necessary corrections made to it. We can now publicize it, if we wish. Here is it: http://now.org/update/issue-advisory-now-foundation-womens-health/ ISSUE ADVISORY: NOW Foundation Women’s Health...
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    ME Graphics and Advocacy Resources

    @ballard i want to thank you for your generous and loving illustration of my protest in front of HHS many years ago!! xxxoooo rivka
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    Group card to Senator Markey

    Here is a video of Senator Markey's opening remarks .
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    Group card to Senator Markey

    Please thank Senator Ed Markey (Democrat from Massachusetts) on this group card. He held a Congressional Briefing about ME on Capitol Hill last week. His opening remarks were FANTASTIC. http://www.groupcard.com/c/4aaYBR_Lyqe
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    Jen Brea and Senator Ed Markey Brief US Congress Members

    please thank Senator Markey on this card http://www.groupcard.com/c/4aaYBR_Lyqe
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    Rivka's ME essay in 3 publications

    An ME essay by me (Rivka @RivkaTweets) was recently published in three publications: 1) ProHealth "Celebrating a Massachusetts State Proclamation for ME Awareness" http://www.prohealth.com/library/showarticle.cfm?libid=30300 2) CMG625.com: A health industry website (!!!) “Recognizing the...
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    2017 ME/CFS Awareness Day Media Coverage (post links here)

    Hi again. I also got another essay published on ProHealth about how we just got a Massachusetts State Proclamation for ME Awareness Day. http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=30300 "Frustrated with the lack of movement on the national level to help people with ME...
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    2017 ME/CFS Awareness Day Media Coverage (post links here)

    Hi all, I got a piece published in Ms. magazine about ME. For some reason, the comments are not going thru moderation, but I hope they will soon. So if you can comment, that would be great. http://msmagazine.com/blog/2017/05/10/mothers-day-fighting-womens-health-equality/ This Mother’s Day...
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    By the way, this is an article I wrote about why we need help from members of congress. http://origin-nyi.thehill.com/blogs/congress-blog/healthcare/297440-congress-must-help-the-millionsmissing
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    Thank you, @Diwi9. Actually, I think we are all heros to each other. Any one of us who can make it thru the day/week/month/year/decade with this terrible illness, in the face of gov't neglect and media distortion about our disease, is a hero. And each of us can only do what our illness allows us...
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    Had a great initial (first) phone meeting with Dr. Joseph at Sen. Markey's office on Friday. 45 minutes, which is great. She asked good questions and seemed receptive to our community's concerns and needs. The first thing I said to her was that the main take away from our meeting would be this...
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    Success! We now have a phone meeting with Sen. Markey's senior policy health advisor slated for this wk or next. So I'd ask folks to not email her directly. However I don't think it hurts for the "thank you" phone calls to Markey's office to keep coming though. But on the other hand we don't...
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    @Sasha thanks for the suggestion. MEAction did edit the original article to reflect all these changes just a few hours after the original article went out. So I think we might be OK. But I can ask them.
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    The Lights need your blood! Recruiting now - important study - take part from anywhere (in the US)?

    But how do we contact the Lights to have them give our doctors the info?
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    Hi everyone! Thank you so much for your kind words! I sincerely apologize for an incorrect email address going into the article that is linked above, the article asking people to email the Senator. Update: Apparently the senator does not have an email address?! Besides, we have now heard that...
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    Daily Hampshire Gazette: Article on ME (Massachusetts, USA)

    Great ME news article in Daily Hampshire Gazette (Massachusetts, USA) Could folks please comment on this article (on the article's website), so the editors see how much we appreciate them for publishing such a lengthy article on ME...
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    ME article published in The Hill, an important Capitol Hill publication

    Hi all! The more comments on the article's website, and the more social media shares (from the site) we get, the more The Hill will want to publish future articles on ME. This is the publication that people who work on Capitol Hill look at.
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    ME article published in The Hill, an important Capitol Hill publication

    ME article published in The Hill, an important Capitol Hill publication http://origin-nyi.thehill.com/blogs...297440-congress-must-help-the-millionsmissing
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    In Memory of Tom Jarrett

    Hearing about Tom's passing and what must have been his utter lack of hope on ending his pain and suffering just tears into my soul. I am devastated. He was a really really good man. It was a pleasure to be in contact with him regarding the NIH demonstration he and his family led and then again...
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    Playful (yet sad) skit fr San Fran MillionsMissing

    Here is the skit on youtube Skit: Three Decades of Government Neglect Summarized in Five Minutes And here are all the videos from that SF demo, found on the MEAction youtube channel https://www.youtube.com/channel/UC2k7yUo-vOLXfsNCl8WSzgg
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    Playful (yet sad) skit fr San Fran MillionsMissing

    @taniaaust1 i'm so sorry this happened to you. please feel free to use the skit in your area, if you want. what area is that? i could try to come help you, but i'm not too too mobile.
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    Playful (yet sad) skit fr San Fran MillionsMissing

    @ScottTriGuy What a great idea! I don't have it in me to do this. Do you?
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    Playful (yet sad) skit fr San Fran MillionsMissing

    @Yogi Yes, there is a youtube video of the skit. I have to go ask someone for the link...
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    Boston Area Preliminary Research Subjects Welcome (VanElzakker)

    BOSTON AREA PRELIMINARY RESEARCH SUBJECTS WELCOME Michael VanElzakker of Tufts University, Harvard Medical School and Massachusetts General Hospital would welcome two types of Boston-area (Boston, Massachusetts, USA) people willing to be scanned with a PET MR machine. 1. Healthy controls...
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    Playful (yet sad) skit fr San Fran MillionsMissing

    Three Decades of Government Neglect Summarized in Five Minutes Playful skit performed at the San Francisco MillionsMissing protest By Rivka == DECADE #1: The 1980s == PATIENT 1: Whoooa, what is happening? I am an average person attending school, working or traveling the world. Suddenly, after...
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    Millions Missing Coverage

    all the millionsmissing news coverage is found here http://millionsmissing.meaction.net/press/news-coverage/ United States Broadbent: Chronic Fatigue Syndrome victims, 2.1 million in U.S., need your help, San Jose Mercury News, San Francisco Bay Area Tethered to my bed, I’m still fighting...
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    Millions Missing Coverage

    Another essay that mentions MillionsMissing. This is a local free newspaper in western Massachusetts, outside of Boston, MA. http://valleyadvocate.com/2016/05/23/will-you-take-my-disease-seriously-now/