Phoenix Rising Articles

‘The More You Know the More You’ll Want to Give’: the first Enteroviral Foundation Opens

  • 336
  • 0
Phoenix Rising Team submitted a new blog post:

‘The More You Know the More You’ll Want to Give’: the first Enteroviral Foundation Opens

Posted by Cort Johnson

I first met Lisa Faust at the Symposium on Viruses in 2008. She was at a table with a group of women all of whom were battling a similar sounding illness. They were definitely the acute onset infectious disease subset. My mouth dropped as I listened to their stories; some were on complete disability, others had had harrowing but slow recoveries – nobody was close to healthy. Most counted themselves very lucky to be able to get to the conference at all. There were Montoya patients on Valtrex, Chia patients on interferon, other patients on Lyme treatments.

Lisa had really been through the wringer. The managing partner of Contemporary...

Dan Moricoli at the IACFS/ME Conference

  • 247
  • 0
Phoenix Rising Team submitted a new blog post:

Dan Moricoli at the IACFS/ME Conference

Posted by Cort Johnson

Dan Moricoli was no shrinking violet before he came down with chronic fatigue syndrome (ME/CFS) three years ago. A business owner, internet marketer, motorcycle racer, skiing enthusiast and deep-sea fisherman Dan was, in fact, something of an adrenaline junky. At sixty Dan’s idea of coming down from the stress of work was to race motorcycles. But this disease got him, as it does with everyone, to reassess his priorities. After getting stricken with a severe case of ME/CFS on a fishing trip Dan turned his considerable talents toward an area he knows very well, the internet.

The internet is, of course, an essential component of many ME/CFS patient’s lives; for the most severely ill...

The NIH On the Clock Pt. III: It's Raining Money

  • 275
  • 0
Phoenix Rising Team submitted a new blog post:

The NIH On the Clock Pt. III: It's Raining Money

Posted by Cort Johnson

That's right - in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to a 30% increase in the NIH's already enormous budget. This year the NIH will have to find a way to spend 10 billion dollars more than it did last.

The question for us is, of course, is whether any of that money will trickle down to chronic fatigue syndrome (ME/CFS) projects. The NIH's ME/CFS research program - always paltry - has declined by...

Coming Home: Dr. Peterson at the IACFS/ME Conference

  • 285
  • 0
Phoenix Rising Team submitted a new blog post:

Coming Home: Dr. Peterson at the IACFS/ME Conference

Posted by Cort Johnson

Reno (the Littlest Big City in the World’) is not your typical conference destination but it was hard to imagine a better spot for the 9th International IACFS/ME meeting. Much water has passed under the bridge since the plight of those Incline village residents made headlines across the country thrust this disease back out into the open. At the time Dr. Peterson was living the good life with a small practice in a resort town in Sierra Nevada ski country.

Deluged with ill patients that summer of 1984 his life would change forever. The CDC would come and go, ‘yuppie flu’ would become a byname for this disorder , another unfortunate name would be coined, a national...

Roadtrip - Reno Conference

  • 359
  • 0
Phoenix Rising Team submitted a new blog post:

Roadtrip - Reno Conference

Posted by Cort Johnson

I didn’t intend to blog about my trip to the conference but the trip was for me, like for other ME/CFS patients, half the battle. Several people I talked to at the conference noted how difficult travel was. My ability to travel has increased greatly over the past few years. I no longer worry about being done in by fumes at the airport or of being unable to breathe on an airplane. Nor am I worried about the physical exertion of travel – as disturbing as that can be. But this trip demonstrated how tenuous that grip on health can be.

My trip was a 600 mile journey by car from Las Vegas to Reno. Until I (somehow) got a new car two and half years ago a good part of my life revolved around dealing...

On the Clock Pt II: The Winners and Losers in the NIH Money Game

  • 279
  • 0
Phoenix Rising Team submitted a new blog post:

On the Clock Pt II: The Winners and Losers in the NIH Money Game

Posted by Cort Johnson

Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year with some diseases winning big and some losing big; a tight budget does not mean that a disease is doomed to a stagnant budget.

THE BIG LOSERS: Each of these diseases or conditions has taken huge hits in funding over the past five years.

Disease
Funding Decline (millions)
Percent Decline

Acute respiratory distress syndrome
-24
33.00%

Anthrax
-145
58.00%

Cerebral Palsy
-6
27.00%

Chronic Fatigue Syndrome
-1
20.00%

Cystic Fibrosis
-47
37.00%

Estrogen
-42...

From the Wastebasket to the Inbox; Progress in Chronic Fatigue Syndrome (ME/CFS)

  • 316
  • 0
Phoenix Rising Team submitted a new blog post:

From the Wastebasket to the Inbox; Progress in Chronic Fatigue Syndrome (ME/CFS)

Posted by Cort Johnson

Dan Moricoli, the creator of the CFSKnowledge and the me-cfsCommunityCenter has just posted a fascinating account of his recent discussion with Dr. Nancy Klimas, a prominent ME/CFS researcher and physician. It seems that researchers are much closer to cracking some significant problems than we know.

The one essential problem in ME/CFS is finding a biomarker - a unique test result that differentiates it from other diseases. How important is finding a biomarker? From Dr. Klimas:

"Just think for a moment, what it would mean to the millions of sufferers of ME/CFS if any doctor could run a test which would clearly, indisputably identify the patient as having the disease, EVERYTHING CHANGES."...

Zombie Patients From the ICU

  • 340
  • 0
Phoenix Rising Team submitted a new blog post:

Zombie Patients From the ICU

Posted by Cort Johnson

What do infection, stress, over-exercising and the intensive care unit have in common? Different researchers believe that each can trigger a chronic fatigue syndrome-like (ME/CFS) state. A recent article in the New York Times added a short stay in the intensive care unit (ICU) to the list.

Anecdotal evidence suggests that a significant percentage of ICU patients experience significant and sometimes disabling fatigue, cognitive problems and mood changes after being discharged from the ICU unit. Particularly compelling was the case of a high school athlete who, after a week in the ICU unit battling pnuemonia, deteriorated greatly after being discharged. A year later this former athlete tested below normal in fitness with his mother proclaiming that...

On the Clock Pt I: the NIH and ME/CFS (chronic fatigue syndrome)

  • 322
  • 0
Phoenix Rising Team submitted a new blog post:

On the Clock Pt I: the NIH and ME/CFS (chronic fatigue syndrome)

Posted by Cort Johnson

We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC's chronic fatigue syndrome program and slamming - in a federal document - the horrible performance of the NIH's ME/CFS program. The only thing that's happened to change that viewpoint is the implosion of the CDC's program; things are still as bad as ever over at the NIH.

Despite the chronic fatigue syndrome communities obsession with the CDC the NIH program is arguably the more important one. It's the NIH, not the CDC that's the center of medical research in the US. The CDC has traditionally been in charge of command and control operations regarding disease outbreaks (Centers for Disease Control) - but it's the NIH...