• 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.

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

Search results

  1. C

    News on the Lipkin study and Dr. Mikovits

    I've just posted a new blog based on a telephone interview I had Dec. 9 with Dr. Ian Lipkin concerning his study on XMRV/HGRV and participation by Dr. Judy Mikovits. You can read it at http://www.cfsnovel.com/blog/?p=409
  2. C

    New Blog Post on ME: International Consensus Criteria at WWW.CFSNOVEL.COM/BLOG

    Check out the new blog post on www.cfsnovel.com/blog
  3. C

    carolinetanderson

  4. C

    New ME/CFS Blog www.cfsnovel.com/blog

    I just started a new blog at www.cfsnovel.com/blog The first posting is called "If Wishes Were Retractions." Enjoy!
  5. C

    Article: The Long Road: "Chronic Fatigue Syndrome: A Novel" Author Returns to 'Health'

    Just spent the entire weekend on the couch because if I moved I had trouble breathing. Doctor thinks it could be methotrexate induced lung injury. Will be getting a chest xray to see what's up. So anyone thinking of taking methotrexate should weight the risks carefully. They are very real.
  6. C

    Chronic Fatigue Syndrome: Lives Interrupted by Llewellyn King

    Unburied dead Here's a wonderful article about CFS http://whchronicle.com/2011/04/chronic-fatigue-syndrome-lives-interrupted/
  7. C

    "Chronic fatigue" cartoon in New Yorker.

    I don't think I even get the wording of the cartoon. "My stomach would hurt but I'm too tired?" Too tired for what? To go to the bathroom? Feel the stomach pain? Even realize that her stomach is hurting?. What does being tired have to do with a stomach ache? Would she feel a stomach ache if she...
  8. C

    Exercise Intolerance Article in fitness magazine

    I'm sure some of you won't agree with some of my statements here but I wanted the idea of exercise intolerance to be understood more throughout the physical fitness community so I agreed to do this interview. http://www.rmaxinternational.com/91.pdf
  9. C

    Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

    Dantini I would have been very upset if they said that getting worse doesn't happen. I had just moved to Washington D.C. and didn't have any friends yet in town and all my family was back in Ohio. I was dealing with it all by myself and it was a horrible experience. If I hadn't had that...
  10. C

    Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

    Dantini I am sorry you had such a bad experience with Dantini. I only had the one appointment with him and it went fine. When I got really sick after starting the antivirals I called the office and the person that answered said "If it gets too bad honey, you can just quit taking them, but...
  11. C

    Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

    U.K. The way the U.K. treats their cfs patients is criminal. All I can figure is that they know this is a virus and because they have a government sponsored healthcare system they feel they will have to pay so much if a biomarker is found that they would rather allow their own citizens to...
  12. C

    Dr. Mikovits's abstract for NYAS is online

    http://www.nyas.org/Events/Detail.aspx?cid=0918b8d8-9a46-4334- b194-23ade9c2a7aa
  13. C

    How long generally should you be on Anti Virals?

    Please check out my web site www.cfsnovel.com the page "Think you have CFS?". I have a section on when and how long to use antivirals. If you have evidence of viruses in your blood work, then going on antivirals can help. You may have to stay on them for two years. The idea is -- not that...
  14. C

    Article: From the PCR Side: the Cooperative Diagnostics XMRV Interview with Dr. Brent Satterfield

    Money interests I particularly appreciate how you pointed out at the beginning of the article how much Satterfield has invested in PCR. His entire career, livelihood and professional life is based around PCR. As he says, it's his profession. It doesn't appear he's looking for XMRV as...
  15. C

    Silverman research

    Anyone see this? http://www.prohealth.com/library/showarticle.cfm?libid=16024
  16. C

    Article: Comedown at CROI: XMRV and CFS at the Conference on Retroviruses and Opportunistic Infectio

    Maybe this is a well known study but it talks about the possibility that XMRV can be transmitted to lab workers. http://jvi.asm.org/cgi/content/full/83/14/7353
  17. C

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    Hi Cort, XMRV was found in three ways, not just in the way the contamination studies evaluated it. That can't be left out of the discussion. Also, the fact that four contamination studies were released at the exact same time to produce the most press is very suspicious to me. Who coordinated...
  18. C

    Comment by 'carolinetanderson' in 'CAA: GET and CBT effective'

    Two things 1) I love the name "no one gives a rats a** disease. If CFIDS or some other organization that spoke for the community put out a press release saying they were renaming the disease "no one gives a rats a**" you would get a lot of press :) 2) telling a journalist that their coverage is...
  19. C

    Demonstration at the CDC

    I'm sorry that I don't agree with a demonstration at the CDC. They 1) know EXACTLY what the ME/CFS community wants and have ignored it for decades. They KNOW. They DON'T CARE. 2) They are bureaucrats, which means they can't be fired. So all the protesting in the world will only make them dig...
  20. C

    Comment by 'carolinetanderson' in 'CAA: GET and CBT effective'

    Well said!
  21. C

    Comment by 'carolinetanderson' in 'CAA: GET and CBT effective'

    I've been a reporter for 20 years, 17 of those with a major international financial wire service and know a thing or two about how to handle the press. It is so completely obvious that McClearly is totally clueless. Whenever someone in the press asks you a question, you answer with the...
  22. C

    Comment by 'carolinetanderson' in 'CAA: GET and CBT effective'

    I've been a reporter for 20 years, 17 of those with a major international financial wire service and know a thing or two about how to handle the press. It is so completely obvious that McClearly is totally clueless. Whenever someone in the press asks you a question, you answer with the...