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- 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?
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Tag Archives: ME
ME Experts Agree on a Case Definition, Call Secretary Sebelius’ Bluff
Those of you who have followed the HHS’ CFSAC meetings know that Secretary Sebelius has, through Dr. Lee, CFSAC’s Designated Federal Official, told the patient community and CFSAC time and time again that HHS is not the proper institution to … Continue reading
Thoughts on the May 2013 CFSAC Meeting
I’ll have a lot more thoughts about this week’s CFSAC meeting in Washington, D.C. once I get a chance to watch the videos because I wasn’t well enough to take notes or attend (or closely follow) the entire meeting. But … Continue reading
Posted in Uncategorized
Tagged Alaine Perry, Ampligen, Bob Miller, Case Definition, CFS, Chronic Fatigue Syndrome, Dr. Elizabeth Unger, Dr. Gailen Marshall, Dr. Howard Koh, Dr. Mary Ann Fletcher, Dr. Nancy Lee, Dr. Susan Maier, Eileen Holderman, FDA, Hemispherx, May 2013 CFSAC, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, out of order, Seamon Corporation, Steven Krafchick
38 Comments
Mary Dimmock’s May 2013 CFSAC Testimony
Patients have been asking where they can find Mary Dimmock’s CFSAC testimony from today and she has graciously agreed for me to publish it here. I have a few things to say about this CFSAC meeting, but I need to … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteraia, CFS, CFSAC May 2013, definition, FDA, Mary Dimmock, ME, ME/CFS, NIH, Oxford, PEM
5 Comments
My Oral May 2013 CFSAC Testimony
My name is Jeannette B. I am relatively new to the advocacy world and I don’t have all the Washington insider lingo down yet. So, instead of “FDA” or “NIH,” I will probably say “the FDA” or “the NIH.” And since … Continue reading
My Written May 2013 CFSAC Testimony
CFSAC Meeting May 2013 Public Comment by Jeannette B., Attorney at Law My name is Jeannette B. I have been sick with ME for more than seven years. I appreciate the opportunity to address the committee today. I attended the … Continue reading
Posted in Uncategorized
Tagged Ampligen, CFS, CFSAC, CFSAC May 2013, Chronic Fatigue Syndrome, Dr. Dan Peterson, Dr. Enlander, Dr. Klimas, Dr. Kogelnik, Dr. Lapp, FDA, Kweder, ME, ME/CFS, Myalgic Encephalomyelitis, Theresa Michele
7 Comments
Public Comment at FDA Stakeholder Meeting, April 25, 2013
My name is Jeannette B. I am paying for my own expenses for being here for this meeting. I am here to urge the FDA to play a more proactive role in working with Hemispherx towards the accelerated approval of … Continue reading
Posted in Uncategorized
Tagged 2013, Ampligen, April 25, CFS, Chronic Fatigue Syndrome, FDA Stakeholder Meeting, ME, ME/CFS, Myalgic Encephalomyelitis
6 Comments
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)