Twitter
-
Recent Posts
- The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 4)
- The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 3)
- The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 2)
- The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 1)
- NIH Study: Walitt Strikes Again
- Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits
- Standing Up to Coyne and Against Unfair Treatment of ME Advocates
- Has the “Coyne of the Realm” been devalued?
- Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?
- Deadline for Comments on Proposed ERISA Disability Regs Fast Approaching: Additional Guidance
Archives
- June 2024
- March 2024
- March 2016
- February 2016
- January 2016
- December 2015
- November 2015
- October 2015
- September 2015
- August 2015
- April 2015
- February 2015
- January 2015
- December 2014
- November 2014
- October 2014
- September 2014
- June 2014
- May 2014
- April 2014
- March 2014
- February 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- May 2013
- April 2013
- February 2013
- January 2013
- December 2012
- November 2011
- July 2011
- June 2011
- May 2011
- April 2011
Blogs
- Be a light, CFS Awareness
- CFS Central
- CFS Patient Advocate
- CFS Treatment Guide
- dx revision watch
- Just ME
- No Poster Girl
- Occupy CFS
- Onward Through the Fog
- Shoutout About ME
- Slightly Alive
- The CFS Report
- The Kafka Pandemic
- The New Ampligen Diaries
- Twenty Years and Counting
- Utting-Wolff Spouts
- Valerie Eliot Smith
- X Rx Blog
Disability Resources
Forums
Severe M.E.
Support Groups
Websites
-
Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
Tag Archives: Chronic Fatigue Syndrome
SF Chronicle Article on the FDA’s Denial of Ampligen
We got an article about the FDA’s denial about Ampligen on the front page of the San Francisco Chronicle’s weekend edition. I wish Dr. Montaya had framed his thoughts only positively (works in a sub-group of patients) instead of also … Continue reading
Sign the Ampligen Petition!
Please sign this urgent Ampligen petition. As many of you know, the FDA is about to make a decision on whether or not to approve Ampligen, the drug that has improved my quality of life dramatically with very little side effects. … Continue reading
Posted in Uncategorized
Tagged Ampligen, Bias, CFS, Chronic Fatigue Syndrome, Dr. Nancy Klimas, Effective Treament, FDA, ME, ME/CFS, Myalgic Encephalomyelitis
12 Comments
“I have a plane to catch”
I am still working through all the emotions triggered by the highly anticipated December 20, 2012 FDA Arthritis Advisory Committee meeting about the approval of Ampligen, an immune-modulatory drug that has been very successful in treating a sub-group of myalgic … Continue reading
My Oral Testimony at the AAC Meeting Regarding Ampligen on December 20, 2012
My name is Jeannette. I am very pleased to have this opportunity to address you and want to express my sincere thanks for your consideration of this critically important decision. I have suffered with CFS for almost 7 years and … Continue reading
Posted in Uncategorized
Tagged 2012, AAC, Ampligen, Arthritis Advisory Committee of the FDA, CFS, Chronic Fatigue Syndrome, December 20, FDA, ME, ME/CFS, Myalgic Encephalomyelitis
4 Comments
Llewellyn King: The Silent Suffering
Llewellyn King’s latest piece about ME, “Chronic Fatigue Syndrome: The Silent Suffering,” was published today in the Open Salon. Mr. King, with his signature style of elegant and no-nonsense language, achieves what is so elusive for most writers: to give the … Continue reading
Posted in Uncategorized
Tagged Ampigen, CFS, Chronic Fatigue Syndrome, Llewellyn King, ME, ME/CFS, Myalgic Encephalomyelitis, Open Salon, Research, Rituxan, WPI, XMRV
9 Comments
What Might Cause ME? (Part 1) (From Get Well From ME)
For more of Giles Meehan’s brilliant videos about ME/CFS, please go to his website.
Posted in Uncategorized
Tagged CFS/ME, Chronic Fatigue Syndrome, Get Well From ME, Giles Meehan, ME, What Might Cause ME? (Part 1)
Comments Off on What Might Cause ME? (Part 1) (From Get Well From ME)
“Guerilla Theater” Performance About Chronic Fatigue Syndrome
July 14, 2011 — For the first time, there is now a play that dramatizes the real-life stories of disabled Americans stricken with the little-understood illness called chronic fatigue syndrome (ME/CFS). This play can be performed in a “guerilla street … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Guerilla Theater, I REPRESENT: INVISIBLE NO MORE, ME/CFS, Rivka Sol
Comments Off on “Guerilla Theater” Performance About Chronic Fatigue Syndrome
Petition to Withdraw the PACE Study
Please sign the petition to withdraw the PACE study here. Below is the text of the petition: “The PACE Study: ‘A Travesty of Science and a Tragedy for People with ME’ The published paper of the PACE trial study into … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, ME/CFS, Myalgic Encephalomyelitis, PACE, Petition to Withdraw PACE
Comments Off on Petition to Withdraw the PACE Study
Ampligen Treatment Study (AMP 511) starting in San Francisco Bay Area
We are a group of ME/CFS patients coordinating contact information for those interested in receiving Ampligen in the San Francisco Bay Area in California. Sites administering the drug under the FDA approved open label AMP 511 study protocol have dwindled to Dr. Peterson in … Continue reading
Posted in Uncategorized
Tagged AMP 511, Ampligen, Ampligen Study, Bay Area, CFS, Chronic Fatigue Syndrome, ME/CFS, San Francisco
2 Comments
Llewellyn King Continues to Fight for Us: MECFS Alert Episode 1 (Parts 1 and 2)
Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” on PBS, and his friend, Deborah Waroff, a New York writer and ME/CFS sufferer for 22 years, have started a new web-based TV show about Chronic Fatigue Syndrome, … Continue reading
Posted in Uncategorized
Tagged Ampligen, B12, CFS, CFS clusters, Chronic Fatigue Syndrome, Deborah Waroff, Dr. de Meirleir, Dr. Enlander, Dr. Jonathan Kerr, folic acid, GcMAF, Kutapressin, Llewellyn King, magnesium sulfate, ME/CFS, MECFS Alert, methylation cycle, Valcyte
Comments Off on Llewellyn King Continues to Fight for Us: MECFS Alert Episode 1 (Parts 1 and 2)