• 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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  1. PANDORA

    Phoenix Rising CFSAC Live Commentary

    Mark, we will try to provide here some live info during the meeting once again, as we have done in the past. I think this is fabulous. In collaboration with Speak Up About ME and others, Denise is gathering a list of everyone's testimony during public input. We will share the list here too so...
  2. PANDORA

    HASHTAG FOR CFSAC MEETING ON TWEETER

    I also found out that #CFSAC is already registered in the healthcare hashtag project. So it looks like it is a good choice. and for all the reasons you mentioned too. There is only so many characters we can use on Twitter. Someone has suggested #CFSACTION and #CFSACACTION to indicate action...
  3. PANDORA

    HASHTAG FOR CFSAC MEETING ON TWEETER

    Friends, what hashtag should we use while tweeting about the CFSAC meeting? We would like to generate great buzz during the meeting. Including urging folks to watch the live stream. I have posted a poll below. But here are the questions as well in case someone would like to reply with an e-mail...
  4. PANDORA

    Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

    Thank you Cort for this interview with Dr. Dan Peterson. Here at PANDORA we are excited about Simmaron and its great potential. Keep reporting about the good initiatives that are finally coming forward on ME/CFS and other NeuroEndocrineImmune diseases. The best is yet to come! Marly Silverman...
  5. PANDORA

    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    APA DSM5 - PANDORA ALSO SUBMITTED INPUT IN 2010 Here is PANDORA 2010 letter to APA on DSM5 In addition through our urging Shelley Foote, a clinical psychologist who is associated with the Dade County Psychological Association (DCPA)...shared with PANDORA last year: "Had our DCPA full-day...
  6. PANDORA

    Article: ME/CFS Protest Sparks Media Coverage

    A hearty Thanks to Susan, Andy and to all who participated in San Francisco. While they are demonstrating in SF, Dr. Kenneth Friedman, Rebecca Artman and I were in a meeting with the CDC. A long 5 and half-hour at times spirited, frank, engaged conversation with Dr. Beth Unger, Kim Hummell, Dana...
  7. PANDORA

    Article: M.A.D in May #5: The 'Support ME/CFS Research' Day

    Hey Cort, Don't forget to include the NEI Center too. Click here for PANDORA's latest announcement on the NEI Center. You can donate either on PANDORA's web site at www.pandoranet.info home page through Google, on our PANDORA Facebook page or on our web site Paypal donation page or on the...
  8. PANDORA

    Article: Chase Community Giving Contest Is Back!

    AS A FORMER WIINNER PANDORA IS NOT ELIGIBLE Even if we had not won last year, our name would not be listed on this round because our budget is less than $50K a year. You would not find our name on the list. You would not be able to vote for us. Now you have 8 votes left after voting for WPI...
  9. PANDORA

    Letter to Sen. Barrasso from Ann Brewer, Executive Secretariat Director, N.I.H.

    Mya, I am reading the thread you started. First, I want to thank you for writing the letter to your Senator Barrasso) He has a strong background in medicine (He is a doctor) and he might be able to raise the good questions that need to be raised. He is also a Republican and in order for the...
  10. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Eric, I like your ideas/suggestions for a coalition of organizations. There is why I am mentioning over and over the sense and the urgent need to unite to do joint efforts. More and more I hear this from patients across the U.S. and overseas. Marly
  11. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Thank you for your kind words in reference to our role on the Baldwin Case. It was a difficult case it took months to get it resolved. It was such a frustrating time for all concerned. But I am glad Ryan is home now safe and sound. Yet their plight continues. How do you make a family, who has...
  12. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    You make a good point. We actually are often on the same page. I had a conversation once on my facebook with an individual who blasted me for not donating or raising money for WPI as well as not working on issues that the patients considered important. When I cross referenced her issues with...
  13. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    t-shirts and banners at the CFSAC meeting answer the t-shirts was printed and created by Time for Action organizers. The banner/cards Act Now printed and created by PANDORA.
  14. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    need to stick together Willow, I agree that we need to stick together. Marly
  15. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    reply to Garcia Hi Garcia, Since I wrote what you quoted, i think it is important to respond to your concern. My take is that I cannot change the past. I can only learn about it and ensure the same mistakes cannot be made on my "watch" meaning as a patient advocate and representative of...
  16. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Golden Rule (of Engagement) - Do unto others as you would want others do unto you. Jace, I am a follower of the Golden Rule (of Engagement)- Do unto others as you would want others do unto you. There are two issues discussed in my blog post. One the paragraph Mindy wrote about Dr. Nancy...
  17. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Waste of energy to turn on each other... Cort, It has been encouraging to see that many like you have expressed the same sentiments. We have now an opportunity to make history. We cannot remain stuck in the old ways. Funding for biomedical research like you expressed is fundamental. We...
  18. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Yes, we do have to stick together! thank you. Emmanuelle, thank you so much for your inspiring words. I love your quote "Yeah, I'm "tired" ... we all are. But one small step taken by a million people is a million steps .." Wow right back at you! Marly
  19. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Biomedical research is the KEY - no more hand-outs for NEIDs! You are correct. All of these competing interests do not make easier on patient advocates and organizations representing patient to navigate the land mines. We must join together in promoting the items/the topics we all agree or the...
  20. PANDORA

    Article: Time to Make a Difference Together by Marly Silverman

    Thank you! Francelle, This was one of the most difficult things I have had to do in a long time. It further opened my eyes to two main items: 1)That I am not alone in my frustrations. 2) And that there is so much that we need to do within the community to build mutual trust so we can drive...
  21. PANDORA

    Tiime To Make a Difference

    "For having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions, even on important subjects, which I once though right but found to be otherwise." Benjamin Franklyn Once again I am excited about what is to come in the...
  22. PANDORA

    Let the World Know what You Think of WPI and PANDORA and get them $5,000

    Dear Justin, I want to thank you for your support of PANDORA. We had some difficulty registering for the Guide Star $5KGiveway, but we are now all set to go. It is important to know that while we would like very much to receive $5K, it is not the only goal we have. In fact we have been asking...
  23. PANDORA

    Comment by 'PANDORA' in 'Make the Turnips Dance - Raise Money for Phoenix Rising!'

    I voted again today. We need to vote every day! Let's get $10K for Phoenix Rising.
  24. PANDORA

    Comment by 'PANDORA' in 'MLV-Related Viruses - an explanation'

    Bob, Cort and others, you'all understand this process and the jargon much better than I do indeed. I always enjoy reading the reports from individuals like you. The science behind XMRV is indeed complicated and for me as a lay person with CFS-ME gets even worse. But this is what I understood...
  25. PANDORA

    CDC and NIH Funding

    For the NIH CFS go to http://report.nih.gov/rcdc/categories/
  26. PANDORA

    New, Improved Project ENOUGH!!! thread

    Hi There, This is Marly Silverman, There is a cause-project on Facebook that could use your participation and I believe it could enhance what you are doing also. Check it out at http://www.causes.com/causes/511536 The cause now has 634 members and it has raised $1,154. Spread the word...
  27. PANDORA

    Comment by 'PANDORA' in 'The 'Optimize Dr. Bateman's Research' Fundraiser'

    Hey Cort donation was made. I posted this great project on my personal FB acount. Cort can you share a bit more about CBS? Also the links to attachment 2194 and 2195 are not working....I hope this will go viral. Marly
  28. PANDORA

    Comment by 'PANDORA' in 'The 'Optimize Dr. Bateman's Research' Fundraiser'

    Cort, I will make a personal donation too and will post on my personal page as well on FB and will spread the word through PANDORA too. Marly Silverman
  29. PANDORA

    Discussion on WPI facebook of a NEI center in New jersey???

    Hi Valia, This is Marly Silverman, from PANDORA. I believe I need to answer the question you posed here. First of all, it is important to note that PANDORA embraces Chronic Lyme Disease aka persistent Lyme disease. We do it for many reasons as it is stated in our mission statement...
  30. PANDORA

    Comment by 'PANDORA' in 'A WPI in New Jersey? Support NEI Center'

    Cort, Thank you for this wonderful post of support for the NEI Center. There is so much to do to get this off the ground. The petition will complement our efforts. We need as many signatures we can gather in support for this center. We are expanding a program titled Advocates...