• 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.

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    No Longer Naive in the Ways of The Beast

    And even when the solutions have not been found for this person or that one, for this symptom or that, we will continue to be there for each other. Even when all we can say is that it sucks, and that we are thinking of them, we are making a difference for each other. Well Said, Jody! This is a...
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    August 8th – Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

    Thanks so much for the AWARENESS. I am housebound and often confined to bed and just knowing that this organization is out there, and that there are others struggling just like me -- it gives me hope. Thank you.
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    Phoenix Rising Board Statement Re: Cort Johnson’s Announcement

    I realize that I'm late to be posting a comment here, but I just want to thank Cort for the work he has accomplished here. He gave a voice to those of us who are too sick to speak up, and he explained medical research in a way that allowed us to both understand and hope. Thank you, Cort...
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    Facing Christmas With the ME/CFS Community at Phoenix Rising

    Thanks, Jody! It is always good to be reminded that there are other people suffering, other people willing to commiserate, other people who KNOW firsthand what it means to struggle with ME/CFS. It is good to be reminded that I am not as isolated as it sometimes seems. Merry Christmas to you, too!
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    New Website for Alabama Patients

    It is amazing how something seemingly small can mean so much. As a CFS patient living in Atlanta, GA, this site just buoys my spirits. CFS can be so isolating and here in the southeast there are scant resources. I am a little jealous that Alabama has created such a site before Georgia. I...
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    Short Survey for Center in Southeast

    Tina, Thank You for your efforts! I know I'm late in posting a comment, but I was looking to see if there was any new news. I did fill out the survey back when you first posted the alert -- just knowing that somebody is thinking of opening a center here in the southeast is hopeful. I'm in...
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    Feeling Old? Research Suggests You May Be: Newton on ME/CFS - Part I

    Thank you again, Cort! Phoenix Rising and You provide hope where none exists. This research sounds so plausible. It totally resonates with me. Would this not also explain why some of us feel so bad 24 or even 48 hours after exersion? If the acids in the blood are building up, wouldn't that...
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    Listening to Roger King (author) and Wilhelmena Jenkins (scientist) on thier CFS

    I thoroughly enjoyed hearing Wilhelmina Jenkins and Roger King talk, but I was angered by the lack of a prepared moderator. At times W.J. and R.K. would almost seem to discuss issues among themselves and not really know when to move on. At one point, R.K. paused in the conversation and said...
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    Let me ask you this...

    I occasionally have days when CFS has become too much. I cannot trace back to the breaking point and there is rarely a single event that pushes me over the top; there is just a day like any other that becomes too big. Today is such a day. And there is the inevitable question: What to do? I...
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    Comment by 'Liz' in 'My Letter to the APA'

    Thank YOU, Nermalina, Jewel and Nico! I've been in bed for days and not checked back until now. Many thanks for the feedback. -Liz
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    Comment by 'Liz' in 'Can we talk about dying?'

    This is very interesting. I had never heard of the heart failure theory... But, after enduring years of chronic illness, don't we all think about dying? Doesn't every CFS patient yearn for a kind of release that modern medicine cannot yet provide? I hope that the mountain you live on, gives...
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    My Letter to the APA

    As a CFS patient, I have the perennial, wearisome task of making my case that I am not crazy, Im sick. CFS is not a psychological disease, but an entirely physiological one. It is a disease that has walloped me every day since I first came down with what I thought was the flu on the second...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Thank you AGAIN, Phoenix Rising for giving CFS patients a voice. I posted a letter to the ASA -- it is only one of many, but I hope they get the point.
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    Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

    I am just reading this for the first time and I'm fascinated by the fact that very specific antivirals seem to work for some, and not for others. I have developed such a hyper-sensitivity to medications that the idea of trying a new antiviral actually scares the hell out of me. I have tried...
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    Comment by 'Liz' in 'Be-ing and Accepting (Quality of Life Blogs #2)'

    Such a good discussion! Thank you, Cort for such a thought provoking article -- it is gratifying to hear so many voices.
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    Article: Becoming Visible In Vermont: "Invisible" An ME/CFS Film

    I agree with the whole shebang except for the "acceptance" debate. I was going to say that this blog entry made me feel less alone, which is true. The part that troubles me is that while acceptance is necessary, I find it to be a very dangerous word because even if I accept that I'm bedridden...
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    Article: Standing Up For ME/CFS: Rivka Takes on Washington

    Well Done! Thank you, Rivka. Such a simple, brilliant idea. Very powerful. I did send the letter along to K. Sebelius. Great contact.
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    Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

    Thanks, Cort! This sounds like the best kind of news... Why am I worried? Is it because I'm too sick to get out of bed, or is it because, like Cruzgirl suggested, a positive XMRV result might not apply to all CFS patients? I keep waiting/hoping for the next great CFS discovery, but I'm scared...
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    Article: Dreambirdies Striking New CFS Video--CFS Patients Address the CDC

    WOW! It's like listening to the play-by-play at a baseball game. Very thorough -- Well Done! From those of us who can't get out of bed -- THANK YOU!
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    Comment by 'Liz' in 'Focus'

    Carrigon, You make a valid point, and it continues along the same lines of CFS being forever misinterpreted as merely "fatigue". I know from reading your recent blog that you're feeling terrible today. Go lie down! We can discuss this later.
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    Comment by 'Liz' in 'Focus'

    Sensing Progress (GREAT Name), Your quote, -- I'm with you!
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    Comment by 'Liz' in 'Focus'

    Victoria, Thank you for the feedback. You echo the experience of so many CFS patients... How is it that we as patients seem, at times, to have a better grasp of CFS than the researchers?
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    Focus

    For weeks Ive been livid whenever I think about the recent XMRV study published by the CDC. The part that has me so riled is that 50% of the patients, or cohorts had not even consulted a physician. 50%! These patients do not have CFS as I know it. These patients arguable do not have CFS at...
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    Comment by 'Liz' in 'How to Make Money While Sick in Bed'

    Wow! Good stuff. Thanks so much for sharing.
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    Comment by 'Liz' in 'CFS Similarities'

    Brown-eyed Girl, Such interesting feedback! I do hope your cancer diagnosis is more treatable than CFS, but my heart goes out to you -- one disease at a time is enough! You mentioned those patients who were "dismayed" by the lack of available treatements, and only last week I was contacted...
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    Article: The CDC XMRV Study: How Not to Find XMRV?

    My Anger Only Grows Cort, In reference to the CFS cohorts, ("The authors noted that 50% of the patients in their study had not consulted a physician and that 75% of them had a gradual onset.") Why, oh why would the CDC utilize patients who had not even consulted a physician?! These are CFS...
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    Comment by 'Liz' in 'CFS Similarities'

    Cloud, I often think that the up and down, rollercoaster ride that is CFS is the worst part. We seem to get better only to get worse without ever really being able to trace the "whys". I've been in bed all day and have no explanation for the crash. I would explain myself, if I could.