• 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

  1. R

    Gamma globulin

    Dr. Peterson put me on ivig, Gamunex-C 10GM every two weeks. A nurse comes to my house and gives me the IV. I have had three rounds and my next one is on December 8th. Dr. Peterson wants me on it for 6 months. This thread is to long for me to focus on and read. so my question is has anyone...
  2. R

    CFSAC Webinar: March 11, 2014 from 12:00-5:00 PM Eastern Time

    Is the meeting over? I forgot it was going on today.
  3. R

    Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

    Has Dr. Lipkin applied for a NIH grant for this work and been denied? Because If I write to the NIH or congress etc.. and ask for them to back this research project, the first thing they are going to say is he needs to apply for a grant. We need some way for him to get money with out having to...
  4. R

    Clinical Trial for Fibromyalgia and ME/CFS Patients

    Hey Sushi, Are you in this study?? Is the antiviral they us Famvir?
  5. R

    Clinical Trial for Fibromyalgia and ME/CFS Patients

    Is there anyone on this forum signed up for this study? And if you are, could you tell us what dose of Cellabrex and Valtrex you are on. Or if it's not Valtrex maybe its Famvir?
  6. R

    Clinical Trial for Fibromyalgia and ME/CFS Patients

    Just read this interesting new study on Corts website. http://simmaronresearch.com/2013/12/big-antiviral-trial-era-fibromyalgia/#comment-5357 http://www.cortjohnson.org/blog/2013/12/16/major-antiviral-trial-underway-fibromyalgia-open-treatment-possibilities/
  7. R

    CFSAC 1/2 day meeting today - Dec. 11

    I look forward to these meetings twice a year. It gives me hope and keeps me going to not give up. I love to listen to our advocates and those suffering with ME, fighting for our rights. This webinar I could not follow and don't know what happened at all. I tried to keep up by reading what...
  8. R

    CFSAC 1/2 day meeting today - Dec. 11

    What you said was perfect. I was so disappointed that there wasn't any sound. I only have a Cell phone and i'm not sitting on my cell for 5 hours. This whole thing is a mess.
  9. R

    CFSAC 1/2 day meeting today - Dec. 11

    2:00PM Liaison representatives - reports It seems like most of this time was spent talking about what their organizations do and who the are. The rest just seems like a repeat of what has been said before. The last presenter had some good things to say. I think it was the New Jersey association?
  10. R

    CFSAC 1/2 day meeting today - Dec. 11

    I'm still pissed there is no sound!! I've waited 6 months for this and I can't even listen to it. I'm not going to sit on my cell phone for 5 hours that's for sure. Fricken donkey idiots...pisses me off!!!
  11. R

    CFSAC Meeting Needs to be Rescheduled for a Two Full Day In-Person Meeting

    CFSAC Dec2013 <CFSACDec2013@seamoncorporation.com> 6:20 AM (3 hours ago) to CFSAC Greetings: Because of a snow storm in the Washington DC area, the Federal Office of Personnel Management has closed all federal govt. offices in DC. This includes the tech support we need for webinars...
  12. R

    November CFSAC meeting MOVED to December

    CFSAC Dec2013 <CFSACDec2013@seamoncorporation.com> 6:20 AM (3 hours ago) to CFSAC Greetings: Because of a snow storm in the Washington DC area, the Federal Office of Personnel Management has closed all federal govt. offices in DC. This includes the tech support we need for webinars...
  13. R

    ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

    Thank you, Wildaisy for starting this group thank you card. Great idea!!!
  14. R

    ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

    Great idea...Thank you for who ever came up with this idea.
  15. R

    ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

    Has anyone heard how the demonstration went? I'm sure Susan is on a plane right now headed to DC. BRRR
  16. R

    Genetic Cures for the Gut

    Interesting article, thank you for posting. I believe that most diseases are connected to the gut.
  17. R

    ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

    I really wish that I lived closer. I'd drag my carcass out for this event. Does anyone know how many people are going to join Susan or is she all alone?
  18. R

    Sebelius “Responds” to the Experts

    Sebelius must think we are complete idiots. WOW...HHS and Sebelius are making complete fools out of themselves. Thank god we have video and CFSAC minutes to prove that they are twisting the truth.
  19. R

    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    Thank you for bring this to my attention. I just left a post, it took me awhile to figure out how to sign in to post. Brain fog.
  20. R

    Help with raising funds for Prof. Lipkin's study

    Do we know how much money he needs for this study?? Thanks for the information below!!
  21. R

    Help with raising funds for Prof. Lipkin's study

    I would love to donate but I would like to know for sure that its going to where we want it to go.
  22. R

    HHS/IOM Contract CAN BE TERMINATED!!!

    Would it be ok to copy and paste this information and send it to our Government officials?
  23. R

    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    Just emailed the letter to her. I'm trying to figure out twitter right now and how to tweet. I have the list of people that was posted on another site. I have added/followed the people below but don't know how to tweet them? any suggestions? I will google it also @Sebelius #MECFS Patient...
  24. R

    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    Thank you so much for the information. I will send her the letter you provided below.
  25. R

    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    I live in Washington state and I have emailed Murray everyday and she just responded back. Read her response in BOLD below. I responded back to her email and will continue to do so. On this thread it was posted that we should all put pressure on Murray and Harkin. I'm curious why Murray? Is...
  26. R

    Signature to spread the current action alerts

    I received a response back from my Senator and posted her response below. I responded back that her response "I will keep your thoughts in mind" isn't what I was looking for. And once again pleaded our case. Has anyone else received responses back from their Senators? Thank you for...
  27. R

    FDA CFS and ME Teleconference - October 16, 2013

    When Dr. Enlander was asking where to apply for approval to use Rituximab, I had the feeling that he wanted to know where to apply for FAST TRACK approval. I was under the impression that with the FDA that having me/cfs on the list for FAST TRACK approval that there would be a special area for...
  28. R

    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    I am feeling your frustration!! This morning I posted multiple indentical threads across the forum. Trying to get the attention of other members and get them involved. Unfortunately it is against forum rules to do that so they were all deleted and my thread was put under advocacy. I didn't put...