Phoenix Rising Articles

On good days, I mostly operate on cruise control, with the occasional moment of brilliance and quite a bit of vegetative regeneration. I can handle most things especially if they are routine and familiar. Bring in something new, though, or something I haven't dealt with for awhile and it's a whole new ball game. One I don't tend to win.


I used to be pretty smart, and a darned good multi-tasker. Just sayin'. I could give homeschooling advice on the phone while sorting out two or three squabbling kids, writing notes to myself and making lunch, and still have brain-space to spare. That all changed with ME/CFS.

I know that everyone runs into snags when they're learning something new, or revisiting something they used to do. The accompanying challenges that I deal...

Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We're probably not getting much of this elsewhere. So if music is so good for us, why is it so hard to have it in our lives? Why, for many of us, is music so exhausting?


Sorry, I have no real answers to these questions. Just more stories.

I think I was a fairly typical adolescent of the 1970s. I spent as much time attached to my little transistor radio as I could. Like many teenagers, I didn't have a great deal of control over my life. I didn't like school and I immersed myself as much as possible in a world of music.

I spent time with friends who were musicians. I lived with a musician for five years starting in University. We often had piano keyboards and drums in...

We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.

Take my family just as one example. I remind myself that my life used to be much harder. I don't have to worry that our bills can't be paid or that we can't feed our family. I no longer deal with the kind of pain, cognitive dysfunction and neurological weirdness and terror spawned by ME/CFS that I used to on a daily basis.

Listen, I'm grateful for the respite. But that doesn't erase the losses and their consequences and scars. It doesn't magically remove the boot print of ME/CFS and the poverty and the isolation...

Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling it ... or not.



For the newly ill, though, life is suddenly full of ominous shadows and question marks. I'm betting all of us old ME/CFS veterans can remember the first time everything was ripped away, regardless of how many years ago it happened. There's no pain quite like that first onslaught.

I remember the Herculean challenge in my early stage of illness of trying to be a mother and wife at Christmas time. I used to bake and decorate and do the holiday shopping. I belonged to community groups...

The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?

Summer is my best season, hands down. Fewer ME/CFS symptoms get in my way. After a while, I tend to forget that this is a summer hiatus ... but I am reminded around the end of August or early September.

And that's because the subtle but inexorable ME/CFS decline would begin. The lessening of hours of light, the warmth dissipating make for an unpleasant picture of what happens to me every autumn.

It would really throw me off at first. Even after all these years, I never am prepared for this loss. I have to make a conscious decision to slow down my pace even more, and I'd have...

Jody submitted a new blog post:

August 8th, 2018: Understanding and Remembrance Day for Severe ME

Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.



Can you read these words I've written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn't see or hear me. I'd be behind a closed door in my bed, trying to block out any sound or light.

Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You'd be surprised how much work that can be...

This section contains all the articles that have been published by Phoenix Rising over the years. As you will see if you browse here, some of the articles are outdated--either the research has been superseded or retracted or the article features an event or campaign that is now in the rear-view mirror.

To make the currently relevant articles more prominent, we would like to create an archive section where we could house articles that are part of our history but are no longer current enough for members to want to comment on them.

If you would like to volunteer to work on this--at your own pace, with no deadline--please write to me through a conversation. This is a fun job--browsing through history.

Phoenix Rising Team submitted a new blog post:

Ottawa IACFS/ME CFS Conference IV: The Immune System!

Posted by Cort Johnson
Montoya Calls for New Research Focus

The Immune System! The ever-present, ever complex immune system - a place of so many hopes in CFS and such a tough nut to crack. In his opening address for the Infectious Pathogens section Dr. Montoya pointed out how inconsistent study results have made it difficult to get a handle on what’s going on. The natural killer cell dysfunction findings are solid and there’s a good deal of evidence for an inhibited Th1 and a dominant Th2 response but inconsistent results across major parts of the immune system (T-cells, tumor necrosis factor (TNF-a), IgG levels, IFN-y) have made it difficult to...

Phoenix Rising Team submitted a new blog post:

Posted by Cort Johnson


Hemispherx has published a major study on the effects of Ampligen (Rintatolimod) on CFS. Ampligen has been under the gun since the FDA's refusal to approve the drug in 2009, pending more study.

A Big Blow - In what journalist (and Hemispherx critic) Adam Feuerstein called a 'staggering blow', in Dec. 2009, the FDA told Hemipherx that it could not approve Ampligen's use in ME/CFS until...

Jody submitted a new blog post:

International ME/CFS and FM Awareness Day Is On May 12, 2018

by Jody Smith


Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.

It is a lesser known fact that Florence Nightingale was bedridden for her last half century thanks to an unidentified chronic illness. Florence would have understood us.

We still don't get the world's mainstream press on our day. But here again, we're making inroads. And there are more of us standing on our shaky legs in more parts of the world.

Why are we intent on...

I didn't find anywhere this article from 2012 by Cort, so I post an extract :

http://phoenixrising.me/research-2/...nic-fatigue-syndrome-by-cort-johnson-aug-2005

begining of the article:

Brain metabolic activity in CFS
Three studies have examined metabolic functioning in the brain using proton magnetic spectroscopy (MRS) (Chaudhuri et. al. 2003, Tomoda et. al. 2000, Puri et. al. 2002). The levels of three metabolites (N-acetyl aspartate (NAA), choline, creatine) in the brain are examined using this technique.

Puri’s study found that CFS patients (a) have significantly higher levels of choline in the occipital region of the brain than do controls and (b) exhibit an abnormal choline gradient between the motor and occipital cortex (Puri et. al. 2002).

Chaudhuri’s study found increased choline levels in the basal ganglia (Chaudhuri et. al. 2003). A very small...

Jody submitted a new blog post:

When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS

Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...


The holiday season just doesn't live up to the hype, especially for the chronically ill and their caregivers. You people with ME/CFS know all too well what I'm talking about.

I am one of the lucky ones, and I know it. My symptoms are generally mild and while they keep my life small, I'm able to do more than many who have ME/CFS.

Today I drove for 20 minutes to a shopping plaza and picked up a few things for Christmas, then drove back home. For some people, this sounds like no big deal...

Jody submitted a new blog post:

Severe ME Day of Understanding and Remembrance: Aug. 8, 2017

Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...


Once again, August 8 is important for those of us with ME, especially for those whose illness is quite severe. I've seen Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance in a few places with the words in a different order. I'm not sure what the original was.

I do know that whatever order the words fall into, this is a day to honor and turn the spotlight toward those who of necessity live in the dark, in the...

OverTheHills submitted a new blog post:

Invest in ME Conference 12: First Class in Every Way

OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.


Friday the 2nd of June was a big day for me, I’d never been to a medical research conference before, and I’d been looking forward to it as a major life event, no matter what the content. As ME patients we are used to being ignored, abused and denied, or at best fed crumbs, but everything about this conference was First Class.

Top...

MEMum submitted a new blog post:

The 12th Invest in ME Research Conference June, 2017, Part 2

MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.


You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF or to...

OverTheHills submitted a new blog post:

The 12th Invest in ME Conference, Part 1

OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.


The 12th Invest in ME International ME Conference (IIMEC12) was held at One Great George Street on Friday June 2nd, 2017.

You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF or to...

Richard7 submitted a new blog post:

Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey

I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is only the epilogue that was significantly changed between these two versions. ~ Richard7

Never Give Up submitted a new blog post:

Julie Rehmeyer's 'Through the Shadowlands'

Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...


A riveting new book by science journalist, patient and ME/CFS champion, Julie Rehmeyer, has just hit the stands. "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" details Julie's illness and its impact on her life.

Her story is likely to parallel yours, the descent into illness; the search for answers in the sacred science and medicine; coming up empty; feeling abandoned to the ravages of disease; coming to terms with new realities...

Jody submitted a new blog post:

May 12, 2017, Is International ME/CFS and FM Awareness Day

International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...


Can you believe it's been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence Nightingale's birthday. This famous English army nurse played a role in the creation of the Red Cross and originated the first school of nursing in the world.

She also had a debilitating, unnamed chronic illness which left her bedridden for the last 50 years of her...

Jody submitted a new blog post:

Phoenix Rising: The Gift That Keeps on Giving All Year Long

This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...


Phoenix Rising is a community that I will always love. Seven years ago I stumbled upon this place in its early days. I had been isolated and lonely for a number of years because I have ME/CFS, and finding this place and these comrades in disease was life-changing for me.

As is the common story with ME/CFS, I had gone through the personal culture shock of having had a perfectly fine social life, personal life, family life, and the ability to do most normal things with only the normal amount of struggle —...