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    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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  1. Karena

    Edward Shorter to give talk on CFS at NIH

    Great letter, Mary! I don't think it's too inflammatory. Maybe I'm just having a stupid day, but I don't understand where Koroshetz is coming from. It sounds like a lot of gobbledygook and double-talk to me. Shorter is a social historian (http://www.dredwardshorter.com/bio.html). How do his...
  2. Karena

    Chronic fatigue patients more likely to suppress emotions

    I wonder if the doctors who dismiss us have alexithymia. They seem indifferent to our problems and unable to understand why we feel certain emotions (anger, frustration, etc.) Regarding the study on suppression of emotions, I can't figure out where they're coming from. Are we hypochondriacs who...
  3. Karena

    Has anyone on this site cured him or herself of CFS/ME? Did I?

    I just stumbled across this thread, too. Thank you for pointing out how reasonable @minkeygirl's request was. I honestly don't understand @overtrain's reaction. Why be mean to someone who's suffering? Why play some kind of mind game and/or make her go back and re-read earlier posts?
  4. Karena

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    It may be natural, but it is the right thing to do? They turn their backs on countless current and future patients because a small percentage exhibit bad behavior. Doctors and scientists who make an honest effort to help us are often revered by the patient community. Maybe we should create an...
  5. Karena

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    Obviously, no one should be sending insulting personal emails to people at the NIH, particularly those not responsible for flaws in the upcoming study. But the notion that scientists would abandon ME/CFS research because their feelings are hurt infuriates me. In the real and virtual world...
  6. Karena

    Horrible Stress?

    Well said!
  7. Karena

    Horrible Stress?

    That's really good advice. It seems as if people living with ME/CFS need to live by different rules. Your father's advice is great for most folks. I used to follow it. Now I'm lucky to get the most important things done in a semi-slipshod way. I'm constantly reevaluating priorities, so my life...
  8. Karena

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    I asked for a good reason! But I like the explanations offered by Comet and jimelis.
  9. Karena

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Has anyone offered a good reason for Walitt's selection? From my point-of-view, he should be the last person involved in a study this important.
  10. Karena

    NIH phonecall and Q&A, Tues 8 March

    Walitt's infamous FM video continues to be picked up and promoted by some in the medical establishment. I noticed it on the March 2016 home page of www.currentpsychiatry.com. I'm very excited about the NIH research project. However, I don't understand why Collins or Nath won't address our...
  11. Karena

    Conversation about Walitt (Split Thread).

    I agree that this is nonsense. Mental illness is not a mystery. If we all suffered from well-established mental problems, we would probably be receiving treatment. Given the success of psychotropic drugs and therapy, many of us would probably feel better and be able to do more than we're doing...
  12. Karena

    How to respond to my doctor...

    It's good that they're taking your case and treatment seriously. Just be sure to discuss all of your concerns with the doctors. Maybe your local doctor could be involved somehow. At least, he or she should be aware of the Valcyte in case you have problems. Good luck!
  13. Karena

    Cartoon reinforces negative stereotype about ME/CFS

    I received the same message, too!
  14. Karena

    Cartoon reinforces negative stereotype about ME/CFS

    I just sent a message on the Blondie contact page, and it went through. I wrote the following, which I hope sounds OK. (If it doesn't blame it on my stupid brain!): Just want to add my voice to the many people who were offended by the Feb. 25 strip referencing chronic fatigue syndrome. You...
  15. Karena

    How to respond to my doctor...

    I'm happy you saw Dr. Natelson and Dr. Levine. At least, you'll probably get as good care as anyone with CFS/ME can get in the U.S. I also appreciate the POTS tips from you and JaimeS. Sometimes little things can mean the difference between being able to go out for a short time or having to...
  16. Karena

    How to respond to my doctor...