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Phoenix Rising Articles

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

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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:
Regrettably I must inform you that the first case of post-swine flu CFS has been reported to the IACFS/ME (the International Association for Chronic Fatigue Syndrome/ME).

The patient is a 15-year old male New Zealander who contracted H1N1 on a trip to Mexico and never recovered.​

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...

Dr. Chia Produces Herbal Immunodulator - Oxymatrine

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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

Equilibrant, containing oxymatrine and a number of immune modulators. This herbal preparation, a dietary supplement, is made from the...​

Looking Back - At the CFID's Association

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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
In turn fewer and fewer patients supported the CAA which showed dramatically...​

Headhunter On the Prowl

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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...

The Tortoise and the Hare: Lessons From an Incorrigible Overachiever

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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...

Recovery.....and Reaction

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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...

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

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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...

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

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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...

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

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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...

Warming Up to Health at Ncubator

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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...

Dr. Logan on H2S, Fiber and the Gut

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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...

My CDC

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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...

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

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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...

Originator of H2S Theory Speaks

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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...

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

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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...

A Fibromyalgia Cancer Connection?

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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...

Annette Whittemore's Next Big (BIG) Project

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Annette Whittemore's Next Big (BIG) Project

Posted by Cort Johnson

Annette and Harvey Whittemore pulled off something of a miracle when they convinced the state of Nevada to help them build the first chronic fatigue syndrome (ME/CFS) research, treatment and eductation facility in the world.

The medical establishment, after all, has been almost as hostile to ME/CFS patients as the disease itself. The Whittemore-Peterson Neuro-immune Institute is an affront to the medical community’s disregard for this disease - a beachhold of hope that chronic fatigue syndrome (ME/CFS) patients can cheer about. But Annette Whittemore has always had a large vision and she wants more - much more.

What do armies do after they establish a beachhead in hostile territory? They move on - and that’s what Annette Whittemore proposes to do; if she has her way the WPI will be just the beginning of a larger...

Kim McCleary On the CDC's Five Year Plan

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Kim McCleary On the CDC's Five Year Plan

Posted by Cort Johnson

“I was sitting there yesterday (during the CDC presentation) feeling like my head was going to blow off my shoulders”

The CFID’s Association of America has been leading the way on the CDC review. Kim McCleary sits through every CFSAC meeting - not an easy task in that often mostly empty room - and takes notes. It was the contrast between what Dr. Reeves said the program was going to do and what it actually did that apparently triggered their investigation. Projects that were supposed to start didn’t, others that started seemed to drag on and on and they seemed to have lost their zest. The CAA began taking a deeper look. When the ten year review came up they reported their findings. They called for more accountability, for a strategic plan with specific goals, for more creative research...​

The Roar Mounts: Professionals Call For New Leadership at CDC

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The Roar Mounts: Professionals Call For New Leadership at CDC

Posted by Cort Johnson

They came one after another. First came the call from IACFS/ME President Fred Friedberg. Their first recommendation - Dr. Reeves should go. Then came the CFSAC , after virtually no discussion ( a real rarity in this group) - new leadership is needed at the CDC. My mouth gaped open. I heard Robert Millers wife Courtney softly exclaim "Yes!" Several of these people have worked with Dr. Reeves for years, yet there was no hesitation at all, they all agreed Dr. Reeves should go and the group forwarded that recommendation to the secretary of the DHHS.

The unanimity is remarkable; all the professional organizations, most of the support groups, many of the patients - the roar, if the CDC chooses to listen to it, is getting deafening. The CDC personnel can’t have expected this. Sarah ssss from the CDC...

The Big Breakthrough (!)(?)

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The Big Breakthrough (!)(?)

Posted by Cort Johnson

Some bloggers have jumped all over the announcement by Dr. De Meirleir that an important cause of ME/CFS has been found. This is, they say, the ‘big breakthrough’. But is it? With just the abstract in hand let's take a look at what little we know.

The Announcement - Dr. De Meirleir has been in this business awhile. He was the foremost proponent and investigator of the idea that RNase L was’ it’ in ME/CFS. While RNase L does not appear to be ‘it’ in ME/CFS it was an important contribution to the field. Dr. De Meirleir publishes frequently in the scientific literature and has treated many chronic fatigue syndrome (ME/CFS) patients.

By holding a press conference - something researchers rarely do - Dr. De Meirleir is putting his reputation on the line. This suggests, of course, that he strongly believes he has found something of...