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Category Archives: Uncategorized
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)
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“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
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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
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MECFS Alert Episode 2
Here is the second episode of MECFS Alerts by our fried, Llewellyn King. This is one of the worst days I have had cognitively and I am barely able to form a thought and type this. So, I am just … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatiigye, Episode 2, Funding, Llewellyn, ME/CFS, MECFS Alert, NIH
3 Comments
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
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Successful ME/CFS Demonstration at HHS San Francisco
Rivka Solomon who had organized a demonstration of patients with ME/CFS at the U.S. Department of Health and Human Services (HHS) in Washington D.C. on May 10, 2011 was, together with Bobbi Ausubel, also the organizer of the equally successful demonstration … Continue reading
Posted in Uncategorized
Tagged Andy Au, CFS, Demonstration at HHS, ME/CFS, Rivka Solomon, San Francisco, Susan Kreutzer
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Tips on Talking to Family and Close Friends by Toni Bernhard
Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, wrote a very insightful piece, “When chronic illness strikes: Tips on talking to family and close friends,” about how to try and gain acceptance … Continue reading
Posted in Uncategorized
Tagged Acceptance, CFS, Family and Friends, How to be sick, ME/CFS, Support, Toni Bernhard
2 Comments
Dr. Teitelbaum Advertises Again on Huffington Post
Dr. Jacob Teitelbaum, MD and former ME/CFS patient, published another article on Huffington Post, XMRV Update and a Possible New Treatment for Chronic Fatigue, yesterday. This one was even more disappointing than his recent piece, which I commented on earlier … Continue reading
Posted in Uncategorized
Tagged CFS, Dr. Jacob Teitelbaum, Huffington Post, ME/CFS, S.H.I.N.E., Singh et al., Whittemore Peter, WPI, XMRV
4 Comments
Making the truce, a short note for ME Awareness day 2011 by Jane Winter
Today is ME/CFS Awareness Day. “Making the truce, a short note for ME Awareness day 2011” by Jane Winter talks well about flare-ups: how they are not just hard for what they mean in the moment—even more restrictions than usual—but how … Continue reading
Posted in Uncategorized
Tagged CFS, Jane Winter, ME/CFS, ME/CFS Awareness Day
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What To Do When Your Friend Has An Invisible Illness—ME/CFS? (From Get Well From ME)
More from Giles Meehan at Get Well From ME. This time, Giles talks about “What To Do When Your Friend Has An Invisible Illness – ME/MECFS/CFS.” Here are some of Giles’ words that resonated with me the most: “The worst thing … Continue reading
Posted in Uncategorized
Tagged CFS, Get Well From ME, ME/CFS, What To Do When Your Friend Has An Invisible Illness-ME/CFS?
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Teitelbaum’s Critique of PACE Fails to Deliver
In his March 9, 2011 article in Psychology Today, Dr. Jacob Teitelbaum took a look at the PACE trial done in the UK, which studied the effect of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) on patients with … Continue reading
Posted in Uncategorized
Tagged CBT, CFS, Cognitive Behavioral Therapy, Dr. Teitelbaum, GET, Graded Exercise Therapy, ME/CFS, PACE Study, S.H.I.N.E. Protocol
Comments Off on Teitelbaum’s Critique of PACE Fails to Deliver