• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. RCFSNP

    A Promising Pill, Not So Hard to Swallow (Fecal Transplant)

    I would like to try real transplants, but cannot find a source for the delayed release capsules necessary for insuring delivery to the small intestine. Anyone know a source?
  2. RCFSNP

    Comment by 'RCFSNP' in 'Help find the cause of CFS by Participating in a Research Study'

    Hi Alkt, Look at his web site: sites.google.com/a/georgetown.edu/baraniuklab/home and you will see that his CFS study is about documenting that even low levels of physical exercise and mental stress will cause changes in the way the brain fires. So, his study is not about emotions; more about...
    • RCFSNP
    • Blog entry comment
  3. RCFSNP

    Is your Senator on the Appropriations Committee?

    http://www.appropriations.senate.gov/about-committee/committee-members Yes ? Then write to that Senator. Use the address in my previous blog. Mention that you are from his/her state. You are asking him/her to reinstate the $5.4M for the NIH to do research on CFS. Take this opportunity to do...
  4. RCFSNP

    Funding for CFS Research at NIH:The Senate Appropriations Committee has cut our $5.4M.

    Please write to Senator Barbara Mikulski and ask her to reinstate this funding. We have no lobbyists on the hill so we have to be our lobbyists. Tell her how sick you are; that you are not able to contribute to society. Her address is : U.S. Senate Committee on Appropriations, Rm. S146A, The...
  5. RCFSNP

    Comment by 'RCFSNP' in 'Help find the cause of CFS by Participating in a Research Study'

    I think travel money is limited, but send Amber an email so you will know for sure.
    • RCFSNP
    • Blog entry comment
  6. RCFSNP

    CFS Exercise and Brain Scan Study - Upcoming CFS study with Dr. Baraniuk at Georgetown University

    Yes, Dr. Baraniuk's study is up & running. I participated the week of June 8th. Wonderful staff and careful arrangements for CFS patients at their research clinical center. If it would be easier, why don't you fly to BWI or IAD or Reagan and I will pick you up and drive you to the clinical center?
  7. RCFSNP

    Antibiotic treatment for chronic headache

    Hi Joe, I am a nurse practitioner. I came down with CFS 7 months ago. So, it is easy to parse out which symptoms are caused by CFS: the constant frontal headache and the constant dripping nose are caused, Dr. Baraniuck explained, by the CFS; not an infection. As a participant in his study at...
  8. RCFSNP

    Comment by 'RCFSNP' in 'Help find the cause of CFS by Participating in a Research Study'

    Hi Tammy, Yes, you ride an exercise bike for as long as you can. YOU pick the level of resistance. YOU stop the test when YOU want to. I thought I would not be able to do it, but did fine. The staff will answer any questions you may have (I had lots). Call 202-687-8231. Ask for Amber or Emma.
    • RCFSNP
    • Blog entry comment
  9. RCFSNP

    Here is a link to a great study I participated in at Georgetown University

    https://sites.google.com/a/georgetown.edu/baraniuklab/ongoing-studies You will have your own room in the Clinical Research Center, Dr. Baraniuk is a Mr. Rogers sweetie, his staff think of every detail to make you comfortable and I will pick you up at the airport and drive you right to their...
  10. RCFSNP

    Comment by 'RCFSNP' in 'Help find the cause of CFS by Participating in a Research Study'

    Thanks, Kina. Nansy
    • RCFSNP
    • Blog entry comment
  11. RCFSNP

    RCFSNP

    Nurse Practitioner
    • RCFSNP
    • Blog
    • Blog entries: 3
  12. RCFSNP

    Help find the cause of CFS by Participating in a Research Study

    I spent three days last week at Georgetown University's Clinical Research Center. I thought it was a good way to spend my birthday. Dr. Baraniuk is studying the effect of exercise on the brain. Dr. Baraniuk reminds me of Mr. Rogers and the nurses were constantly taking care of me and the rest of...