October 2009

Teflon Woman

October 27, 2009

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.  … Read More

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The Alpha Dog

October 26, 2009

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.  … Read More

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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.… Read More

46 comments

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.  … Read More

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XMRV – Hope and Caution

October 16, 2009

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?… Read More

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XMRV – Puppet Master?

October 15, 2009

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!). … Read More

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XMRV/XAND Information Center

October 14, 2009

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.… Read More

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Game Changer

October 8, 2009

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.… Read More

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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.
  • Read More

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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 wanted to share some new insights into CFS that we discovered this past winter.… Read More

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