Phoenix Rising Articles

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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...

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Kim McCleary On the CDC's Five Year Plan

Posted by Cort Johnson

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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...

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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...

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Dr. Reeves at the CFSAC: Too Little Too Late?

Posted by Cort Johnson

Dr. Reeves produced the five year plan for the CDC's CFS research team. He was in his element. He seemed sincere and open; patients think of him as something of an ogre but you'd never get sight of that in his presentations. Kim McCleary later noted that he’s a master at the art of presentation. But one suspects that he’s masterful in the way that many government officials are. They’re always very nice but it’s often difficult to get a straight answer to a question.

The standard MO for dealing with an issue seems to be to give a history lesson. So when someone asked about the efficacy of the empirical definition Dr. Reeves spent 10 minutes going into depth about what is and how it came. He's not stating anything anyone doesn’t already know but the answer eats up time and ends up deflecting the original...

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"They Should Know!" - the ME-CFS Community Story Contest

Posted by Cort Johnson

ME-CFS Community - my favorite new website - is sponsoring a contest that, I think, can make a difference. We patients don't have much influence on the research or even (unfortunately) on governmental policies. We're not simply strong enough as a community to strongly effect either of those things. But we're very strong as individuals because we all have one thing that can reach out and grab someone by their throat: our stories.

Our stories can make more of a difference than just about anything else. Politicians and bureacrats do not respond to statistics - they're immersed in them all the time - but a good story- that really resonates. Good stories knaw away at people. They upset the status quo. They disturb their comfort level. They make the issue personal.

No one should go into the darkness...

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IACFS: MIA or A Force? - The CDC Review

Posted by Cort Johnson

The patient community and the CFIDs Association of America showed up for the comment session on the CDC’s CFS research effort but the research community didn’t. Except for Staci Stevens and Dr. Klimas and a brief statement on behalf of the IACFS/ME no other researchers spoke.

Time for the IACFS/ME To Step Up - The review process has highlighted some substantial holes in the ME/CFS community’s response to events. The CFIDS Association of America, with its report on the CDC, had its act together but thus far, our professional research organization - the organization that theoretically should be most embedded in this review process, the IACFS/ME, has almost completely missed the ball. Unfortunately they have missed the chance to influence the CDC’s research effort at the ground...

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The Next Step? Ashok Gupta at the IACFS/ME Conference

Posted by Cort Johnson

Ashok Gupta recovered from chronic fatigue syndrome (ME/CFS) patient almost ten years ago. His research into his condition lead him to develop a new theory of the disease and novel techniques for treating it. He believes that the fear center of the brain - the amygdala - has become chronically activated - causing the body to over-respond to virtually every stimulus presented to it. Over time this results in exhaustion, hyper-sensitivity, increased pain, etc. After treating patients for about five years in his clinic in London he created a DVD program patients can use to guide themselve through his program.

The cognitive behavoral therapy studies presented at the IACFS/ME Conference did not have good results. Ashok Gupta's - admittedly using quite primitive statistics - did. Are therapies utilizing...

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Systemic Change Needed: CAA Hits CDC Again

Posted by Cort Johnson


Patient anger towards the CDC’s CFS research effort has been high for many years and the patient comments provided many heartfelt and cogent critiques of the group at the public comments meeting but the CFID’s Association of America is in a different position. For one, after getting senate (Harry Reid) and congressional help they’ve dug deep into CFS research teams records for the past year - something no patient could ever do. With Suzanne Vernon, the former lab chief of the program, on board, they have a special insight into the state of the CDC’s research team as well. We knew they were fit to be tied at the low productivity of the group and what they’ve asserted is wasted money and mismanagement. But what about the rest of the...

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Patients Blast the CDC

Posted by Cort Johnson

The public review session on Monday in Atlanta was part of the CDC’s ten-year review of the program. Thus far the research program has received several internal reviews and an external review and is now in the process of creating a Five-Year Strategic Plan. The public review session Atlanta was focused on suggestions regarding the CDC’s future direction.

A Rocky Start - Amazingly enough, just months after Kim McCleary blasted the CDC for a lack of organization and planning the CDC exhibited those characteristics in spades. The meeting was announced just two weeks before it was to take place - giving people little time to prepare - or put aside time to attend. Since the late notice made getting to the site difficult and since traveling is too much for most ME/CFS patients anyway telephone call-in capability was essential but there...

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Dr. Cheney Goes His Own Way: the Virginia 2009 Lecture

Posted by Cort Johnson

Dr. Cheney gave a lecture on ME/CFS (chronic fatigue syndrome) on April 25th, courtesy of the Northern Virginia CFS/ME/FM and OI Support group. According to a report of the talk posted by Chris on CFSFMExperimental Yahoogroup on April 27th, Dr. Cheney, a creative physician and provocative speaker, did not disappoint. In a three hour non-stop, often...

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Batter Up! CDC at the Plate: On the Mound - The CFS Community

Posted by Cort Johnson

The 10 year review of the CDC's CFS Research program is winding up. They've taken an internal look and an external look at the program and an un-solicited outside look . They liked the external look - it glossed over many of the more substantial problems with the program - and were likely horrified at the 'outside look' they got from a very angry CFID's Association of America.

Now they want your opinion. Not very badly that's for sure; they announced the meeting for the outside community to chime in not long before it was to take place (April 27th). They may not want your opinion but they need it- badly.

The biggest CFS research program in the world is in bad shape; it's productivity has lagged badly over the past two years; it's become focused on child abuse; it's thrown millions of dollars...

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The Best, Worst, Biggest, Least...2008 in a Nutshell

Posted by Cort Johnson

Most Remarkable Achievement (of the Decade) - As funding at the NIH and CDC plummets a major research/treatment center, the Whittemore-Peterson Neuro-Immune Institute – begins to rise out of the deserts of Nevada just over the hill from Incline Village. The WPI is a testament to the tenacious commitment of three people; Annette and Harvey Whittemore and Dr. Dan Peterson.

Most Dramatic Moment: Kim McCleary of the CFIDS Association of America stands up in a federal advisory committee meeting (CFSAC) and rakes the CDC’s CFS research program over the coals for...

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‘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...

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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...

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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...

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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...

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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...

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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...

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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."...