• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Hope123

    2023 IACFS/ME Conference: Register now for Early Bird rates!

    2023 International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) Scientific and Medical Conference REMINDER: Register before July 2 for Early Bird rates! 2 weeks left! Online registration runs through July 21, 2023...
  2. Hope123

    2022 IACFS/ME Conference: Register before July 4 for best rates!

    The 2022 IACFS/ME Virtual Medical and Research Conference will take place online from July 27 - July 30, 2022! This will be IACFS/ME's 15th Medical/ Scientific Conference. The exciting, informative program includes: Workshops covering research- and clinic-oriented topics Oral presentations of...
  3. Hope123

    IACFS/ME August 2021 Virtual Conference: Register Now!

    To expand access to the IACFS/ME Conference to patients/ caregivers/ the public, IACFS/ME has created a new registration category for people who want to attend ONLY the patient/ public lecture series on August 19. Register BEFORE 8/ 12 and the price for IACFS/ME members is $50 and for...
  4. Hope123

    IACFS/ME August 2021 Virtual Conference: Register Now!

    2021 IACFS/ME Virtual Scientific Conference August 19 - 21, 2021, 10:00 AM - 3:30 PM EDT Registration is now open for the 2021 IACFS/ME Virtual Conference! Register before August 12, 2021 for the best rates! Registration closes on August 18 at 10:00 AM Eastern Daylight Time (New York City...
  5. Hope123

    IACFS/ME August 2021 Virtual Conference: Call for Asbtracts

    Hi, everyone, if you are involved with research, please consider submitting your research or workshop proposal for the 2021 IACFS/ME conference. The Deadline has been extended to May 17, 2021 at 5 PM New York Time. See prior post above for submission information or click here for details...
  6. Hope123

    IACFS/ME August 2021 Virtual Conference: Call for Asbtracts

    Hi, everyone, if you or someone you know would like to submit a research abstract or workshop proposal for the August 2021 Virtual Conference, please see below for more information. Registration for the conference itself does not start until around July. Thanks. 2021 IACFS/ME Virtual...
  7. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    Here is a 10-minute video made specifically for this conference to help people with Zoom. You can also access the slides presented.
  8. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    Are you worried about using Zoom Webinar? Are your concerns preventing you from joining our August 21, 2020 IACFS/ME Virtual Conference? If so, join us for our LIVE Conference Attendee Rehearsal. This short 10-minute presentation will familiarize you with how to join Zoom and also the Chat/...
  9. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    This is a reminder that registration for the IACFS/ME 2020 Virtual Conference closes at midnight (12 AM) August 20, THURSDAY, i.e. one day before the 8/ 21/ 2020 meeting. This is to ensure every registrant receives the link to join the meeting and the meeting program in a timely manner. Visit...
  10. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    We will have several mainstream reporters and well-known ME/CFS writers/ groups reporting on the meeting. That has been the tradition for many years. Most patients who follow any of the well-known groups or writers will read/ hear about the meeting via these channels. We may also produce our own...
  11. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    We are excited to have SMCI and OMF be sponsors for the meeting. However, sponsorship of the meeting is not related to the selection of presentations. All sponsors are aware of that. We select presentations based on scientific merit, not on whether an individual, organization, etc. sponsors the...
  12. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    No, the Conference will not be on Youtube. However, registered attendees will get a link to the conference video afterward that they can review if they cannot attend live or cannot watch the meeting at one sitting.
  13. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    Hi, Gemini, Most Zoom meeting have used Zoom Meeting rather than Zoom Webinar. It is likely that Zoom Webinar has the same features but I want to check before answering for sure. In our past meetings, about 30% of attendees are from outside the US so we want to assure that not just US but...
  14. Hope123

    Register for the IACFS/ME August 21, 2020 Virtual Conference!

    Hi, everyone, I hope you will be able to join us at IACFS/ME's August 21, 2020 Virtual Meeting. IACFS/ME is a 30-yr. old international, professional organization of clinicians and researchers dedicated to researching and taking care of people affected by ME/CFS. Many of the clinicians and...
  15. Hope123

    CFSAC Meeting June 20 -21 2018 Announcement

    I'm not annoyed at her for her work but she could have thanked the government officials and others WITHOUT the disparagement of patients and advocates. THAT was not needed nor is it helpful.
  16. Hope123

    CFSAC Meeting June 20 -21 2018 Announcement

    Arrghhhhh :eek: ......Amrit Shazhad is continued to lecture the patient community about "our lack of objectivity." That really torques me off. A lot of people have advocated 'objectively' for years to decades AND it's BECAUSE of that, COMBINED WITH PASSIONATE advocacy that has pushed the...
  17. Hope123

    CFSAC Meeting June 20 -21 2018 Announcement

    I agree with you. I'm not sure what history she has with the patient advocacy community but patients and their supporters have been working VERY hard for years to get the government to respond. People who are new to this community think we are "demanding" too much don't know the history and how...
  18. Hope123

    CFSAC Meeting June 20 -21 2018 Announcement

    Trying to watch today. As usual, the ability to access CFSAC is horrible. Couldn't access the webstream this morning and was told that the link on the current CFSAC website is WRONG. WRONG: URL: https://www.mymeetings.com/nc/join.php?i=PWXW7447575&p=5959754&t=c Called CFSAC up and they told...
  19. Hope123

    May 12, Sacramento, CA: Unrest Screening and Panel Discussion

    May 12, Sacramento, CA: Unrest Screening and Panel Discussion WHAT: Screening of Unrest hosted by Sacramento, CA councilwoman Angelique Ashby Panel Discussion with Staci Stevens, MA - Workwell Foundation [pioneered 2-day CPET testing]...
  20. Hope123

    Your Dream Place for an IACFS/ME Conference: Take the Poll

    There are several groups working on ME/CFS at Stanford. They work together on some projects and on others, they work independently. Note that the Stanford event you are referring to was not sponsored by IACFS/ME but by the Open Medicine Foundation. When IACFS/ME held their 2014 meeting at...
  21. Hope123

    Your Dream Place for an IACFS/ME Conference: Take the Poll

    Thanks for asking this question, Cort! It's always interesting to see what locations people are interested in. A lot of the decision where to hold the meetings is based on FUNDING and RESOURCES. The average conference takes about 18 months to plan and costs close to $150,000 - $160,000 US each...
  22. Hope123

    UC Berkeley: Free screening/ discussion of Unrest February 20

    THANK YOU to everyone who helped make this event a success, whether you attended in person, watched it live or later, or helped us spread information about the event! There were almost 250 people attending or watching the event live while the livestream to date has been watched by almost 2,800...
  23. Hope123

    What makes CFS different from somatoform disorder

    I'm not usually on the forum these days but this statement you made stands out. Which study are you referring to? I'm genuinely curious as I collect these articles. Because if it is this 2017 one, what it shows is that in MS patients, MS subjects were able to reproduce their cardiometabolic...
  24. Hope123

    Chair of NICE Review invited

    Although they don't ask for it, one thought would be to write them and nominate someone for that position. Or write someone you would like and ask them to consider the position. I don't live in the UK though.
  25. Hope123

    UC Berkeley: Free screening/ discussion of Unrest February 20

    You are invited to a FREE screening and scientific panel discussion of Unrest hosted by the University of California, Berkeley School of Public Health! This event is being held as part of UC Berkeley's School of Public Health's Dean's Speaker Series. Co-sponsors are the Stanford ME/CFS...
  26. Hope123

    Rituximab Phase III - Negative result

    There was a typo in my original quote which is why you found it confusing! It should say, "if you have LOW IgG...........some of this group might benefit from IVIG." Interestingly in pediatric CFS, there is a 1997 trial by Kathy Rowe showing benefit but has not been replicated. For adults, the...
  27. Hope123

    Rituximab Phase III - Negative result

    Now that is interesting. Thanks for sharing your history. You might have posted this before and since I'm mostly off-forum, I likely missed it: did you ever have other signs of inflammation, e.g. elevated ESR, CRP, cytokines? The news is sad but I do hope that they will follow up on looking at...
  28. Hope123

    IOM Criteria to Be used in Research for NIH Center of Excellence

    Researchers and clinicians conduct research on theories, treatments, questionnaires, diagnostic tests, etc. that they originate all the time. Your argument would be similar as saying Jason cannot conduct research on the DePaul Symptom Questionnaire because he developed the Questionnaire. All...
  29. Hope123

    How to get the attention of scientists/ clinicians: PubMed Commons

    Hi, Jenny, I placed the post under "Research" because this is where most comments about research are -- from what I remember anyways -- and the "Members" area is restricted. I want the maximum number of people to see this. In terms of the Journal Clubs, I don't know how that works. I have an...