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Phoenix Rising Articles

CFSAC Pt I - The Art of Evasion

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CFSAC Pt I - The Art of Evasion

Posted by Cort Johnson
It was as if someone had transported the CFSAC committee to a different planet. Down from their small perch on at top of the building into the main lobby with the banks of lights shining down and three cameramen following their every move one wondered if this might be what the future looks like.

The people who followed the proceedings got a taste of everything; the stirring science, the banal presentations by the ex officio's, the piercing questions by the CFSAC members, (the not so piercing questions), the powerful presentations by the patients, the Orwellian government speak, the mind numbing rules. It had everything, good and bad, that our federal government can offer.

The Art of Evasion - If the future was upon us it was hard to tell from watching the first part of the meeting. Watching the government officials...

Teflon Woman

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Teflon Woman

Posted by Cort Johnson
With her smile and her ingratiating matter Dr. Hanna is the NIH’s Teflon woman for ME/CFS. As Dr. Reeves punches up his next dazzling 20 minute PowerPoint presentation Dr. Hanna throws her few tidbits into the mix and shuts up. It's remarkable how little interest there has been in what is arguably the most important federal institution for chronic fatigue syndrome (ME/CFS)

She has shaded the truth repeatedly yet she is rarely taken to task. After she told us that no more Centers of Excellence were being built (one reason why we couldn't have one) we saw COE's going up right and left. She promised to reinvigorate intramural group on chronic fatigue syndrome but all that group did was take a lot of funding that was purportedly on 'chronic fatigue syndrome' and spend it on other things. The Roadmap Initiative she promised several years ago simply...

The Alpha Dog

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The Alpha Dog

Posted by Cort Johnson
Tantalized by the opportunity to make a difference the ME/CFS community let loose on the CDC over the past year. To its credit the CDC’s review process allowed for that.

Missing the Forest for the Tree - The CDC, however, is not the main game in town - they’re not the alpha dog we vitally need to tame - not at all. Perhaps because they’ve made more blatant errors than anyone else the CDC’s has always assumed an outsized importance in the chronic fatigue syndrome community’s mind.

There’s certainly no disagreeing that they’re important - they are; they’re tasked with doing research, interacting with public health officials, educating physicians education, documenting prevalence and costs, identifying risk factors , etc. but they are not our most important federal agency; in fact they're not even close.

The Alpha Dog - This is...

A CFS Chart on Every Doctor's Wall

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A CFS Chart on Every Doctor's Wall

Posted by Cort Johnson
Chronic Fatigue Syndrome (ME/CFS) is complicated. That’s bad enough for patients but for many physicians it’s entirely too complicated - the last person they want to see walk thru their office door is a chronic fatigue syndrome patient. Given the lack of chronic fatigue syndrome specialists - that’s a big problem - there are no substitutes for educated primary care doctors.

Dr. Lerner believes his Energy Point Index Score would help doctors greatly with their ME/CFS patients and that it should be on every doctor's office wall. The EPIS is a simple chart that allows patient to quickly evaluate his/her activity levels. It ranges from zero (Bed-ridden) to 10 (Normal).

A Key Factor - If Dr. Lerner is correct your ‘energy level’ is the key factor in...

XMRV - the Potential For Change

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XMRV - the Potential For Change

Posted by Cort Johnson
“A supernova (pl. supernovae) is a stellar explosion. Supernovae are extremely luminous and cause a burst of radiation that often briefly outshines an entire galaxy”​

This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out - still an if - one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now. The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now. One wonders if any disease has had such a dramatic turnaround as this one may be in store for.

Finding ‘IT’ - If the WPI is right about XMRV the scientific community has finally been given what they've been asking...

XMRV - Hope and Caution

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XMRV - Hope and Caution

Posted by Cort Johnson
Who Are Those Guys? Gazing at the distant cloud of dust raised by his dogged but mysterious pursuers Butch Cassidy turned to the Sundance Kid and with some awe muttered "Who are those guys?" Despite all their tricks that posse had stuck on their trail like glue. Has the Whittemore Peterson Institute's posse caught one of the slippiest preys in all medicine? Or will a significant subset of ME/CFS patients slither through their hands?

A good part of that answer may depend on the answer to "Who are those guys?" Specifically when WPI researchers called the subjects of their study chronic fatigue syndrome (ME/CFS) patients just who were they talking about? And who will end up having this virus? Answering that question will determine if the WPI posse can corral the whole disease or just a portion of it.

Lets take a close look at...

XMRV - Puppet Master?

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XMRV - Puppet Master?

Posted by Cort Johnson
The idea that XMRV could be a kind of 'puppet master' (eg. Dr. Bell) that allows other infections such as EBV or HHV6 or Lyme or enterovirus to become exacerbated is generating discussion. Dr. Coffin suggested such in his article "A New Virus For Old Diseases". Dr. Huber, a researcher studying endogenous viral elements in ME/CFS has suggested that XMRV might be able to unlock endogenous retroviral elements in our DNA. Based on the limited results from his clinic Dr. Cheney speculated XMRV could be a factor in autism and ADHD and (wondered about arthrits, asthma and cancer!). Dr. Mikovits has reported that XMRV can be found in autism and 'atypical MS' patients. Its all a bit overwhelming.

XMRV/XAND Information Center

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XMRV/XAND Information Center

Posted by Cort Johnson
The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appears to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute prompted a flood of stories across the major media outlets and scientific publications including Nature, Scientific American, the New York Times, (two articles), NPR, Fox News, LA Times, etc.

Amid concerns that the blood supply was contaminated the NIH officials announced they'd already held a conference on the issue. The Whittemore Peterson Institute rapidly conferred a new name for what it believes are a cadre of XMRV diseases - XAND (X Associated Neuroimmune...

Game Changer

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Game Changer

Posted by Cort Johnson
"Hopefully this will finally make people change their attitudes to this disease." Dr. Judy Mikovits

The news had been in the air for the last week; the Whittemore Peterson Institute was going to publish something big - really big - on Friday. Then early Thursday the news was out - a retrovirus had been found in many if not almost all ME/CFS patients. The media had prepared themselves well - feature stories shot up on the Wall Street Journal, LA Times, NPR, Scientific American, etc.

It was big news indeed - after two decades chronic fatigue syndrome (ME/CFS) was back in the news in a big way. Ironically the last big splash like this in the 1990's featured a retrovirus in ME/CFS that didn't pan out and left a young researchers career in tatters. One has the feeling that that is not going to happen this time.

A...

"Solving CFS' and Stepping Into The Digital Age

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"Solving CFS' and Stepping Into The Digital Age

Posted by Cort Johnson
The CFID's is coming of age in the digital age. SolveCFS, a new website, is a nice step forward for the CFID's Association. If you haven't looked the CFID's Association has been on a roll lately. Check these projects of the past few years:
  • A sucessfull research initiative
  • They hired a well known researcher, Suzanne Vernon, as their Research Director (arguably their most important move over the past couple of years). She has galvanized new research, brought new blood (finally) into the ME/CFS research arena and called for a major changes in the ME/CFS researchers work.
  • Created a successful ME/CFS Physician education program on Medscape
  • Broke with the CDC, uncovered financial problems at the agency and publicly called for new leadership.
  • Created a partnership with other disease groups...

Recovery, Relapse And Recovery (The Recovery/Recovering Stories #III)

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Recovery, Relapse And Recovery (The Recovery/Recovering Stories #III)

Posted by Cort Johnson
The Recovery/Recovering Stories - stories from ME/CFS patients who have experienced significant recoveries. The diversity of recovery stories indicates that ME/CFS is indeed a very heterogeneous disorder; any story may or may not apply to a given individual.
Martha Kilcoyne detailed how she fully recovered from a severe case of chronic fatigue syndrome in 'Defeat Chronic Fatigue Syndrome Now' . Martha's recovery resulted from her doing many 'small' things right and to her uncovering a physiological problem she was able to remedy. She celebrated her recovery by climbing Mount Kilimanjaro and had been healthy and disease free until a series of stubborn infections plunged her, to her dismay, back into the soup again.)

A Guest Blog From Martha Kilcoyne

I...

CFSAC Nominations in Play

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CFSAC Nominations in Play

Posted by Cort Johnson
The CFSAC is the federal advisory committee on chronic fatigue syndrome. It advises the Secretary of Health on the federal response to ME/CFS including research, treatment and disability. Among the agencies it interacts with are the Centers for Disease Control, the National Institutes of Health and the Social Security Administration.
FIve slots are open, one of which is the patient representative . You can provide letters of support for people you'd like to see nominated.

My Picks - There are a lot of very worthy people with impeccable credentials on the list - virtually everyone, from what I can tell, would be a real asset. It’s impossible to know who would be most effective but there are some people in particular that I would love to see on the panel. They include Dr. Donnica Moore, Dr. Judy Mikovits, Dr. Dan...

Good Morning America Gets It Right!

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Good Morning America Gets It Right!

Posted by Cort Johnson
Its nice to see chronic fatigue syndrome (ME/CFS) well represented on the national stage. Dr. Donnica Moore was comfortable and poised on Good Morning America as she clearly enunciated many of the major aspects of ME/CFS. Early on she focused on post-exertional malaise - something we really need to get across. The inevitable depression question didn't come until the end and she handled it well.

She's been on the national stage before on CNN, Tyra Banks and others. The best thing, though, is that she's been nominated for the federal advisory panel on CFS (CFSAC) by the CFID's Association of America. Having this sharp and articulate women on the panel could only help. Having "Dr. Dannica" on the panel should boost the panel's visibility substantially. I sincerely hope she makes it...

Missed Opportunities Dog Efforts at Change

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Missed Opportunities Dog Efforts at Change

Posted by Cort Johnson
The CFIDS Association of America generated a shockwave when Kim McCleary stood up at the federal advisory committees November 2008 meeting and accused the CDC's CFS research program of wasting millions of dollars and engaging in poor research and said the program's leader, Dr. Reeves had to go. The CAA would go on to slam the CDC again and again over the next six months. They did it alone. And they shouldn't have.

Our Missing National Group - The CAA has primarily been a patient support organization and thus lacks some clout with regards to research issues. There is a group, though, that potentially has plenty of clout at the research level. The problem is that you'd never know it. In fact much of the time you wouldn't even know that they exist. They are called the IACFS/ME; they're our professional research...

CDC Grows MORE Isolated

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CDC Grows MORE Isolated

Posted by Cort Johnson
It’s seems that the CDC has figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (“From Infection to Neurometabolism: a Nexus for CFS”). Thirty researchers from across the US and Canada were there but not one showed up from the biggest CFS team- not one.

This wasn't how it was supposed to be. Just 6 months ago Dr. Reeves was raked over the coals by the CFID’s Association of America, the IACFS/ME and the CFSAC for his inability to play well with others. In May, sitting before the federal advisory committee on CFS (CFSAC )(and his boss) Dr. Reeves acknowledged he’d done a lousy job of communicating and collaborating and promised to turn over a new leaf. Since then he’s reneged on a promised summer International conference on ME/CFS management...

CDC Isolation Grows

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CDC Isolation Grows

Posted by Cort Johnson
It’s nice that things are going so well over at the CDC CFS Research team - it seems that they’ve figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (“From Infection to Neurometabolism: a Nexus for CFS”). Thirty researchers from across the US and Canada were there but no one showed up from the biggest CFS team - the CDC.

This was an amazing thing. Just 6 months ago Dr. Reeves was raked over the coals by the CFID’s Association of America, the IACFS/ME and the CFSAC for his inability to play well with others. In May, sitting before the federal advisory committee on CFS (CFSAC )(and his boss) Dr. Reeves acknowledged he’d done a lousy job of communicating and collaborating and promised to turn over a new leaf. Since then he’s reneged on a promised...

A Personal Lesson in Humility

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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...

CDC Quickly Breaks First Promise

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CDC Quickly Breaks First Promise

Posted by Cort Johnson
CDC/CFSAC BLOGS #2​

International Workshop - Clinical Management of CFS​

The aim of this workshop (to be held summer 2009) is to establish a collaborative international consortium of investigators who will present and discuss evidence- and practice-based findings related to the treatment, and management of CFS. CDC's Five Year Strategic Draft Plan - May 2009

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...

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

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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...

Dr. Cheney Goes His Own Way - Again

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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...