October 2011

Posted by Cort Johnson

It doesn’t always take a village; sometimes it just takes a committed few to possibly change the future of a disorder; in this case, it may come down to just thirty patients and two researchers in Norway. The news that 2/3rds of CFS patients taking a chemotherapy drug called Rituximab significantly improved in a rigorous, double-blinded placebo controlled trial swept the CFS community immediately and then medical websites.
Rituximab has been a kind of underground hope that’s slowly been getting stronger and stronger over time. Reports suggesting that Rituximab was helping, sometimes REALLY helping, in a small group of patients, began filtering out of Norway about a year and a half ago and Dr.… Read More
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Posted by Cort Johnson

Marly Silverman is a worker! How many people have played a major role in creating not one or two but three organizations? Marly first created PANDORA, then in response to the CDC’s new website, dreamed up the MWCPA and then was a key figure in getting the Coalition4MECFS off the ground.

Plainly put Marly makes things happen. My first hankering of that occurred in 2007 while I was stewing in Southern California bemoaning my inability to get to the Florida Conference. It was Marly who not only told me to get off my butt and make it happen and provided some funds to do that.

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Posted by Cort Johnson

(In what has become easily the best documented interaction of any patient with Dr. Dan Peterson, Corrine returns to see him for visit #4. Check out Corrines other blogs here as she brings up you close and personal with one of the most respected ME/CFS physicians in the US. Check out the beginning of the Corinne-Dr. Peterson Chronicles here)

 

Let me begin with a summary of my first three visits with Dr. P.

 

June 2009: I traveled by RV (my husband drove) because I was partially bedridden and wanted to “stop and smell the roses” along the way.… Read More
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Posted by Cort Johnson

This was taken from the Treatment section of “Looking Forward: Dr. Peterson on ME/CFS Research, Treatment and Hope for the Future”. This article was derived from notes I took after a talk with Dr. Peterson; the views enclosed hopefully reflect the essence of the talk but any mistakes, of course, are mine. Thanks to Corinne for arranging a meeting with Dr. Peterson.


The big news on the treatment scene from Dr Peterson is CMX001 – a new drug developed by Chimerix to treat herpesviruses and other pathogens which may come on the scene in the next few years.… Read More

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Posted by Cort Johnson

(Looking Forward: Dr. Peterson on ME/CFS was derived from notes I took after a talk with Dr. Peterson; the views enclosed hopefully reflect the essence of the talk but any mistakes, of course, are mine. Materials were added from the IACFS/ME Ottawa conference to supplement the article). Thanks to Corinne for arranging a meeting with Dr. Peterson. 

Dr. Dan Peterson and Dr. Cheney were the doctors on the scene as the most famous outbreak in chronic fatigue syndrome history took place in little Incline Village on the shores of Lake Tahoe high in the Sierra Nevada mountains in the early 1980’s.… Read More

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(In what has become easily the best documented interaction of any patient with Dr. Dan Peterson, Corrine returns to see him for visit #4. Check out Corrines other blogs here as she brings up you close and personal with one of the most respected ME/CFS physicians in the US. Check out the beginning of the Corinne-Dr. Peterson Chronicles here)

Let me begin with a summary of my first three visits with Dr. P.

June 2009: I traveled by RV (my husband drove) because I was partially bedridden and wanted to “stop and smell the roses” along the way.… Read More

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Posted by Cort Johnson

Discuss this article on the forums

(Looking Forward: Dr. Peterson on ME/CFS was derived from notes I took after a talk with Dr. Peterson; the views enclosed hopefully reflect the essence of the talk but any mistakes, of course, are mine. Materials were added from the IACFS/ME Ottawa conference to supplement the article). Thanks to Corinne for arranging a meeting with Dr. Peterson.

Dr. Dan Peterson and Dr. Cheney were the doctors on the scene as the most famous outbreak in chronic fatigue syndrome history took place in little Incline Village on the shores of Lake Tahoe high in the Sierra Nevada mountains in the early 1980’s.… Read More

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Posted by Cort Johnson

Dan Moricoli is proof that even individuals afflicted with a severe illness can make a difference. Hampered by an alarming case of ME/CFS that has stymied many doctors Dan has nevertheless produced a unique place for people with CFS to gather and learn. The CFS Knowledge and ME/CFS Community Centers now have the most extensive trove of ME/CFS video’s anywhere. With close ties to Dr. Klimas and other physicians in the South Florida area Dan has produced numerous video’s of her’s and others ideas on research and treatment. There’s no other resource like in the ME/CFS community and it deserves support and the help it needs to grow.… Read More

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Posted by Cort Johnson

We are focused on assembling the best team; developing a new strategy; formulating a straight-forward operating plan; and driving results.

Scott Carlson, Director of the Chronic Fatigue Initiative

There are times you can feel some momentum in the air. Yes, XMRV is in trouble and the WPI is re-evaluating their research program but other parts of the ME/CFS Community are stepping up.The International Consensus Criteria for ME came out of the blue to present a powerful call for change, the Coalition4ME/CFS jumped right into the policy arena with a proposal before a federal committee to change the ICD designation for CFS, Dr.… Read More

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Posted by Cort Johnson

The Mikovits era at the WPI was turbulent one, filled with almost Shakespearean highs and lows. With the discovery of XMRV she helped bring a degree of excitement and attention to the chronic fatigue syndrome field it never seen before. It was and is an turbulent time, and perhaps fittingly her departure was a turbulent one as well – with the WPI stating that she was terminated over a disagreement over whether to share samples with other researchers.

An Exciting Start – Working in a major NIH lab lead by Dr. Frank Ruscetti, Dr. Mikovits had impeccable credentials.… Read More

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