Phoenix Rising Articles

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A Personal Lesson in Humility

A Guest Blog By Laurel

(Laurel, a young woman with magna cum laude from Tuft's University, has a severe case of ME/CFS. In this poignant blog she talks about some of hard lessons she learned (which everyone with this disorder should contemplate) and provides a personal look from the world of the severely afflicted.

The CFIDS Association of America recently took a poll in which, among other things, they asked their members which personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope.

So I guess I should have known who would be towards the bottom of this list, and which stories were among those that generated the least amount of interest. Who did they not want to hear...

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CDC Quickly Breaks First Promise

Posted by Cort Johnson

CDC/CFSAC BLOGS #2​

International Workshop - Clinical Management of CFS​

This weekend, Labor Day, marks the traditional ending of summer in the US. It will also mark the first promise broken of the CDC's Five Year Strategic Draft Plan. Six months ago Dr. Reeves promised to hold an international conference on the management of chronic fatigue syndrome (ME/CFS) in the summer of 2009. That was the last we heard that project. (Which suggests...

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Dr. Chia On Oxymatrine, Autoimmunity, ME/CFS and FM

Posted by Cort Johnson
Dr. Chia posted a lengthy response to some of the questions asked regarding the last Oxymatrine post. (I added the headers)

Dr. John Chia:

Interferon and Oxymatrine: First of all, oxymatrine or equilibrant is used alone without interferon in almost all of the patients. I only used interferon-alpha 2a to help reducing the muscles pain often worsened by the use of oxymatrine. Interferon was used in patients who had major relapses immediately following discontinuation of this immune modulator and marked increase of myalgia with restart of 1/2 tablet of the herbal product. The use of interferon helped the patient to get back to full doses of oxymatrine within a 2-3 week period. The use of interferon does not increase the overall response to the herbal product.

Fibromyalgia and ME/CFS...

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Dr. Cheney Goes His Own Way - Again

Posted by Cort Johnson
In April Dr. Cheney startled ME/CFS patients he announced that based on echocardiographic testing, that several commonly used supplements, some of which he had previously championed , were actually bad for ME/CFS patients. They included glutathione/whey protein, coenzyme Q. 10, D-Ribose and Vit D. Now he’s casting doubt on another core treatment; omega-3 fatty acids (fish oils).

Dig Deeper! Dr. Cheney Goes His Own Way: the April Virginia Conference

Dr. Cheney is using something he calls ECHO Terrain mapping to assess the effectiveness of chronic fatigue syndrome treatments. This appears to involve placing a substance on the patients skin and then measuring their IVRT (speed with which the heart expands during diastole). Substances which increase IVRT are believed...

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The Wave Begins? Swine Flu, ME/CFS and the CDC

Posted by Cort Johnson
THE CDC/CFSAC BLOGS #1

Dr. Ken Friedman, board member of the IACFS/ME, just reported the first documented case of a person coming down with chronic fatigue syndrome (ME/CFS) as a result of getting the swine flu virus. This is what he said:

A Hard Hit Group Swine flu is often innocuous but when it does cause trouble appears to hit young people harder than older people - presumably because young people haven't been exposed to anything like it in their lifetimes. Most of the deaths in the San Diego...

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Dr. Chia Produces Herbal Immunodulator - Oxymatrine

Posted by Cort Johnson
Dr. Chia, an infectious disease specialist focusing on chronic fatigue syndrome (ME/CFS), has finished the production of a pure form of Oxymatrine, an alkaloid derived from the Sophora plant in China. Oxymatrine is used to treat many diseases including hepatitis and cancer there. Oxymatrine has been an important part of Dr. Chia's protocol for several years and it played an integral role in returning his son, Andrew Chia, to health.

The concern over the purity of products coming from China prompted Dr. Chia to produce a more stable and effective preparation of Oxymatrine called Equilibrant. He took the opportunity to add other immune factors to the mix. He stated that

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Looking Back - At the CFID's Association

Posted by Cort Johnson

John Herd's recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts we've seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the post's tone was mild the post itself too often lapsed into a kind of seamy and mostly baseless conjecture we see too often.

Essentially the post asserted many of the CFID's Association's activities over the past few years derived not from an intention to benefit the patient community but were simply callow money grabs. It's an idea that's been passed around again and again in discussion groups. This is what it said

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Headhunter On the Prowl

Posted by Cort Johnson

Hachet Woman - Hilary Johnson is doing what she does so well-she's taking heads. She's never been about 'support', she was an investigative journalist after all. Her metier has always been holding up a bogeyman and then cutting it's head off.

Born with a golden pen her darting, evocative and often voluptuous prose engulfed a community that raged at the pitiful federal response. Osler's Web was a tour de force of investigative reporting, a remarkable achievement for anyone, let alone someone with a severe case of ME/CFS. Yes, she had her white hats and her black hats, the good guys and the bad guys even back then; there was never anything subtle about her world view but she told a great story and it fit with many peoples experiences.

Real Speak. And she's still swinging her hatchet. But is she swinging it too freely? Has...

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The Tortoise and the Hare: Lessons From an Incorrigible Overachiever

A Guest Blog From Lisa Johnson

(Lisa Johnson, a former marathon runner, first came down with chronic fatigue syndrome (ME/CFS) in 2003. She temporaily recovered and returned to her 'hare-like' existence only to suffer a severe relapse in 2004. She has been unable to work since then).

Aesop’s fables date from the 6th century BC. He published in excess of 300 fables, ancient pearls of wisdom. (Aesop collected the fables, he didn't write them). Who doesn’t remember the famed fable, “The Tortoise and the Hare”? Until I became an ME/CFS statistic, I dismissed it as a silly child’s tale. Face it, in our culture we are groomed to become high achieving hares.

The Hare - The theory of Type A and Type B personality originated in the 1950s. Many of us who develop ME/CFS share characteristics of...

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Recovery.....and Reaction

Posted by Cort Johnson

"PLEASE REPOST PUBLICLY"

In a recent post, (marked “Please do not repost publicly”) Jodi Bassett noted her ‘outrage’ at Mike’s story of his recovery and declared herself ‘absolutely disgusted’ by Mike’s attempt to spread it. After only the most superficial acquaintance with the treatment procedures she declared it ‘harmful’

We were rather astonished. We’d offered the story because we thought it might offer some hope. What could have made this maven of medical correctness so angry? Apparently the suggestion that Mike had myalgic encephalomyelitis tipped her over the edge. Although we referred to Mike’s condition as ME/CFS throughout the paper Mike’s belief that he had myalgic encephalomyelitis was too much and a rather incoherent e-mail (see below) resulted.

An ME Patient: Mike had an acute onset from which he never...

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Listen To M.E. - An ME/CFS Recovery Story III: Renewal

Posted by Cort Johnson

Click Here for Part I/ Part II

When we last left 'patient X' he was in a semi-coherent state and had trouble tolerating even mild stimuli without pain. Emaciated and in pain he had essentially resigned himself to dying. Then, remarkably enough, he heard of doctor in his own area whom, he was told, was successfully treating ME/CFS. He would take one last chance.

A Leap of Faith A few days later I decided to take the leap of faith. I crawled into my dad's car. We arrived at the doctor's office where I crawled my way into the lobby. I laid in the lobby until my name was called. Dad lifted me up onto the table and the doctor walked in.

At this point I could only stay conscious when I was...

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Listen To M.E.-An ME/CFS Recovery Story: Part II - Implosion

Posted by Cort Johnson

To Read Part I Click Here

When last we left 'patient X' he had spent a night in a New York mental facility after collapsing with exhaustion and telling medical personnel that he had myalgic encephalomyelitis/chronic fatigue syndrome. Now back in California, with his health failing he's going from clinic to clinic trying to find some help.

A Desperate Search. For the next 6 months I would run around from clinic to clinic trying treatment after treatment. With each treatment I just got sicker and sicker. At the end of 6 months, which was March, 2007 I was almost completely bedridden and was down from 180 to 165 pounds.

I called my dad to go to a new clinic with me and let him know what was going on with my health. They told him...

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Listen To M.E. - An ME/CFS Recovery Story: Part I

Posted by Cort Johnson

This is the most extroardinary recovery story I've ever heard. I'd known this person before his health had completely fallen apart. He'd participated heavily in the ME/CFS forums and had obviously studied this disease intensely but he'd basically slid off a cliff. His case of ME/CFS had progressed far, far beyond what most people face, and quite frankly, I shuddered to think of what he was going through. I'd offered my feeble idea's- which he gently brushed aside - and then he disappeared. The next thing I expected to hear was that he was dead. That was over a year ago. About early May I got an e-mail from him. This is what he told me...

Yea, I had asthma, a good amount of anxiety and chest infections twice a year but I was never too sick to stop from running cross country, playing basketball...

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Warming Up to Health at Ncubator

Posted by Cort Johnson
The Recovery(ing) Stories #1 (Occasional stories from recovered or recoverying patients)

A new website/blog called Ncubator recently caught my eye. Jody Smith, the websites creator, has an unusual talent for explaining issues in a very personal, down to earth and clear way. The articles were just a delight to read and at times touched me deeply. (see If a Tree Falls in a Forest )

Jody’s really been through the wringer with ME/CFS; her symptom signature included tremors, IBS, difficulty standing, severe fatigue, weight gain, hair falling out, stabbing pains, dysregulated sleep, vertigo, etc. Along the way she had to stop working and close down a very productive website but over the past year or so she’s experienced a significant return...

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Dr. Logan on H2S, Fiber and the Gut

Posted by Cort Johnson
Dr. Logan is a board certified naturopathic physician who graduated magna cum laude from the State University of New York. An invited faculty member at the Harvard School of Continuing Medical Education and published researcher he is the author of "The Brain Diet" and the co-author with Dr. Alison Bested of a recently updated book on chronic fatigue syndrome (ME/CFS) - "Hope and Help for Chronic Fatigue Syndrome."

He was willing to follow up a substantial comment he made to the "H2S Creator Speaks" blog with this full interview.

_____________________________________________________________
A good number of chronic fatigue syndrome patients do experience gut pain...

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My CDC

Posted by Cort Johnson
My CDC team is very different from the present one. My CDC is a true leader in this field; my CDC is at the hub of the ME/CFS research effort, my CDC interacts extensively to benefit all. My CDC is a lean and mean and innovative team that we can all be proud of. What exactly does my CDC team look like? My CDC team:

Interacts extensively with research community at large. Always on the lookout for new breakthroughs my CDC communicates frequently with all different aspects of the broad ME/CFS research community. My CDC doesn't just support efforts like the Whittemore Peterson Institute - its on the ground floor assisting them to get off the ground. (My CDC would never be out of communication with a major project like the WPI. This CDC has never been in communication with them.) My CDC is a known and trusted hub of the ME/CFS research effort...

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Last Chance at the CDC: the CFID’S Association’s Critique of the Five Year Plan

Posted by Cort Johnson

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Our opportunity to impact the CDC's CFS research program ends after tomorrow (June 30th) The CFID’s Association of America has just released a critique of the five year review that’s longer than the draft plan itself. It’s a very impressive forward thinking document that’s also a great resource for building your own critique of the program. Below is my take on the CAA's major points.

Simply e-mail the CDC at CFSResearchPlan@cdc.gov to give them your input.

Program Lacks Innovation - perhaps the most damning criticism of a research plan is that it's just not very good research.The CDC's only major research project will use brain imaging techniques to assess the effectiveness of two...

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Originator of H2S Theory Speaks

Posted by Cort Johnson

Dr. DeMeirleir made a big splash when he announced at a press conference that he had uncovered a new and important factor in chronic fatigue syndrome (ME/CFS) called hydrogen sulfide. What was lost in the flurry that followed was the fact that if it was not for an inquisitive mother of a daughter with chronic fatigue syndrome that press conference very well might never have happened.

Years before hydrogen sulfide had become even the smallest blip on the ME/CFS research community's radar screen a rather remarkable woman named Marian Dix Lemle was developing a theory suggesting that it could lie at the heart of this disease.

I first met Marian Lemle two years ago at the IACFS/ME conference in 2007. She had written a paper proposing that the excessive production of hydrogen sulfide gas had put ME/CFS patients into a kind of...

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Registering Dismay: the CDC's (Platinum) Patient Registry

Posted by Cort Johnson

CFS has a long and twisted history with the CDC but perhaps nothing in it has been odder than the strange story of their Patient Registry. This project involves contacting physicians in a small county in rural Georgia (Bibb County, population 150,000) and having them refer patients to the CDC. The patient is then screened by telephone to determine if they might have CFS or unexplained fatigue. If they might then they’re invited to spend a day taking tests at a clinic to determine if they do. The patients that end up with a confirmed diagnosis of CFS or unexplained fatigue will, potentially, be followed for a number of years to see how their disease progresses and will be eligible to participate in future studies.

That's all well and good; no one’s complaining about the idea of having a patient...

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A Fibromyalgia Cancer Connection?

Posted by Cort Johnson

Whittemore -Peterson Neuro- Immune Institute researchers have uncovered a possible cancer subset in chronic fatigue syndrome (ME/CFS) (See The Hit of the Conference: IACFS/ME Conference II). In this guest blog Yvonne Kenney, the founder of the Fibromyalgia Coalition International, reports on some preliminary evidence suggesting that the cancer problem may not be limited to ME/CFS. More evidence suggests that high levels of pain lead to increased rates of mortality not just suicide but possibly from heart disease, stroke and other illnessess.



FM/CFS/ME patients are told that these illnesses are not fatal. This is simply wrong! I have spoken with more than 10,000 patients over the past 11 years and concluded long ago that FM/CFS/ME patients...