• 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. shastamax

    Petition for more NIH funding

    If you haven't already, please sign the petition! It's stuck at about 960 signatures and we need many more. Thanks! http://www.thepetitionsite.com/490/782/145/more-nih-funding-for-mecfs-research/
  2. shastamax

    The Call for Opposition: Challenging the P2P and IOM Processes

    Beg to differ, but the IOM report is the best thing to happen in my 20 years of having this illness. I'm not brainwashed. I'm as mad as the rest of you about the lack of progress. But consider that the IOM report has generated a highly prestigious place to refer doctors and others who still...
  3. shastamax

    ME/CFS Short Fiction

    I made an audio recording of a short fictional story I wrote with an ME/CFS theme. I hope you enjoy it. https://soundcloud.com/shastamax/the-next-best-thing/s-w0gzO
  4. shastamax

    Petition for More NIH Funding

    Yes, I am Marilyn Lemmon and am an ME/CFS patient. I have had it for 21 years and just decided to try my naive hand at being an activist.
  5. shastamax

    Petition for More NIH Funding

    Thanks to everyone for signing. We're over 400 signatures now. I'm going to get as many as we can over a reasonable period of time. Let's get to 1000 and see if we still have momentum. After that it goes to Francis Collins, head of the NIH, and to the CFS Advisory Committee. I will also...
  6. shastamax

    shastamax

    • shastamax
    • Blog
    • Blog entries: 3
  7. shastamax

    Petition for More NIH Funding

    Please sign and share. Suggestions welcome. http://www.thepetitionsite.com/490/782/145/more-nih-funding-for-mecfs-research/
  8. shastamax

    Petition for More NIH Funding

    Here's a link to the petition, started by an ME/CFS patient. Please sign if you're a USA resident, share, and any suggestions welcome! http://www.thepetitionsite.com/490/782/145/more-nih-funding-for-mecfs-research/
  9. shastamax

    LDN Survey

    Question 9 has an answer option that addresses the problem of taking multiple drugs and not knowing which drug(s) are helping. I have added the word "lasting" to the first question about side effects. I added 2 questions at the end about lowering the dose due to side effects. Thanks for the...
  10. shastamax

    LDN Survey

    Great! You were fast- the ink was hardly dry! Many thanks for participating.
  11. shastamax

    Antiviral drug survey

    OK folks- I posted surveys on LDN and Imunovir under this same forum topic. I'm working on a valcyte survey. Again, the correct link to the famvir survey, which currently has 10 responses, is: https://www.surveymonkey.com/sr.aspx?sm=PHGDaRnMQqUxbw7CRDrLj7xAFZA6vvfQVTTqHd1ScRM_3d
  12. shastamax

    Imunovir/Inosine Survey

    Hi Everyone: I don't know about you, but I find the forum format not the best way to obtain information on our experiences with treatments. I think that surveys would be a better way to gather information from a number of patients in one place. I have an account at Survey Monkey and wrote up up...
  13. shastamax

    LDN Survey

    Hi Everyone: I don't know about you, but I find the forum format not the best way to obtain information on our experiences with treatments. I think that surveys would be a better way to gather information from a number of patients in one place. I have an account at Survey Monkey and wrote up up...
  14. shastamax

    Antiviral drug survey

    I'm just learning how to do this. Here's the link that should work. Thanks for letting me know about the problem. https://www.surveymonkey.com/sr.aspx?sm=PHGDaRnMQqUxbw7CRDrLj7xAFZA6vvfQVTTqHd1ScRM_3d Should I do more of these surveys? What do people think?
  15. shastamax

    Antiviral drug survey

    Here's a link to the results of the famvir survey so far. Thanks for participating. http://www.surveymonkey.com/analyze/?survey_id=39759326&OPT=NEW
  16. shastamax

    Antiviral drug survey

    Update on my survey project- just 8 responders to the famvir survey, but I'll post a link to the results later this week. My survey project may be obsolete due to the Chu/Jason survey which includes excellent questions about this and other prescription drugs for ME/CFS. Please take this survey...
  17. shastamax

    Antiviral drug survey

    Thank you. Cheers back attcha!
  18. shastamax

    Antiviral drug survey

    Thanks for participating. We have 5 responders so far...not bad for the first day. Once it gets up to about 20 responders, I'll post a link to the results.
  19. shastamax

    Antiviral drug survey

    Hi Everyone: I don't know about you, but I find the forum format not the best way to obtain information on our experiences with treatments. I think that surveys would be a better way to gather information from a number of patients in one place. I just got an account at Survey Monkey and wrote up...
  20. shastamax

    Please tell me your famvir/famciclovir story

    I just got diagnosed with reactivated EBV. My first 250 mg famvir dose caused insomnia. I'm supposed to take it 2X per day. I'm wondering about side affects and successes with this drug. Thanks!
  21. shastamax

    Just back from Dr. Nancy Klimas

    Start low with the amitriptyline- 5 mg was plenty for me for several weeks until my body adapted to it.
  22. shastamax

    Sensitivity to Specific Activity

    Clarification. I used to be able to do some photography with no problem. Sometimes I kept at it too long, and brought on symptoms. This was not surprising, as I was doing an amount of physical activity that would tend to bring on symptoms with other activities. Now, I barely touch the camera and...
  23. shastamax

    Sensitivity to Specific Activity

    I started a new hobby (photography) several years ago and because I love it so much, I tended to often do too much physically while photographing, which brought on symptoms. Now, just picking up the camera and taking a couple of shots sets off symptoms even though this is way below my threshold...
  24. shastamax

    Just back from Dr. Nancy Klimas

    The change in sleep meds was because doxepin is a little more sedating. also, our bodies addapt to both drugs (higher dose needed over time to get the same effect) so she recommends switihgin back and forth between dox and amitrip to minimize this.
  25. shastamax

    Just back from Dr. Nancy Klimas

    The switch in sleep meds was because doxipen is a little more sedating. Also, our bodies adapt to both drugs (I started at 5 mg amitrip and am now taking 25), so switching back and forth between the 2 drugs will minimize this effect. I've been quite happy with amitrip- it's the only thing I've...
  26. shastamax

    Just back from Dr. Nancy Klimas

    Hi everyone: Yes, the appointment was long and disorganized, but I've been to worse, believe me! The really important stuff felt very good-i.e. I felt like I was in the hands of someone who is as likely as anyone to help me. I was prescribed Imunovir and low dose naltrexone. She also wants to...
  27. shastamax

    Just back from Dr. Nancy Klimas

    This was my first visit to Dr Klimas, although I've had CFS for 19 years. I was generally impressed. If you go, here's what to expect: The office is currently not very organized. I was told to mail my new patient paperwork to them, but they couldn't find it for awhile and I had to fill it out...