-
Join 1,460 other subscribers
-
Recent Posts
- A New Direction
- The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?
- 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
- Proposed ERISA Disability Regs: Instructions and Sample for Public Comments
- Department of Labor Proposes Lowering Bar for ERISA Disability Claims, Requests Public Comments
- The Scientifically Challenged UK Media Strikes Back
Archives
- September 2016
- 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
- August 2013
- May 2013
- April 2013
- February 2013
- January 2013
- December 2012
- September 2012
- May 2012
- February 2012
- November 2011
- October 2011
- August 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
Tag Archives: ME/CFS
Dr. Breus playing into the hands of insurers wrongfully denying disability claims
As a follow-up to my prior comment to Dr. Breus’ unequivocal endorsement of the PACE trial, here is another comment I just posted on his blog post that illustrates clearly how “journalism” like his serves the insurance industry in their … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Disability Claims, Dr. Breus, ME, ME/CFS, Myalgic Encephalomyelitis, PACE Trial, Peter White, SwissRe
9 Comments
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
DePaul University ME Study Needs Healthy Participants
I am sending the following message to my non-ME friends and I would encourage other patients to do the same. We can help out Lenny Jason and his team greatly in recruiting our healthy friends and family members. I used … Continue reading
Posted in Uncategorized
Tagged Case Definition, CFS, Chronic Fatigue Syndrome, DePaul University, ME, ME/CFS, Myalgic Encephalomyelitis, Sleep
2 Comments
Counterproductive Post
I am really sorry for having been MIA for a while. I owe a number of you responses. I am not doing too well, but I am well taken care of. So, please: no worries about me. I have lots … Continue reading
Comment on Dr. Lapp’s Blog Post
Here is my comment on Dr. Lapp’s blog post from yesterday, What Are The Most Important Things To Remember About CFS/FM? The comment is awaiting moderation. Dr. Lapp, I am a patient and I appreciate your contributions and your commitment to … Continue reading
Posted in Uncategorized
Tagged Acceptance, Adaptation, Attitude, CFS, Chronic Fatigue Syndrome, Dr. Lapp, FM, ME, ME/CFS, Myalgic Encephalomyelitis
41 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
Norwegian Rituxan Study Published
The Norwegian Rituxan study finally got published. Unfortunately, I don’t have a comment left in me today, but here is the abstract: Øystein Fluge1*, Ove Bruland1,2, Kristin Risa1, Anette Storstein3, Einar K. Kristoffersen4, Dipak Sapkota1, Halvor Næss3, Olav Dahl1,5, Harald Nyland3, Olav Mella1,5 1 Department of Oncology and Medical Physics, … Continue reading
Groundbreaking Paper about Norway Rituxan Study Imminent
Update October 19, 2011: The Norwegian Rituxan study was published today. *** I just received an email from Invest in ME explaining why the distribution of the conference DVDs of the Invest in ME conference in London in May of … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Dr. Kogelnik, Dr. Mella, ME, ME/CFS, Mike Turris, Myal, Norway Study, Prof. Fluge, Rituxan, Rituximab
2 Comments
“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
Leave a comment
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
Leave a comment
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
Thoughts About M.E. 
You Can Make A Difference: Ampligen Approval Within Reach With Your Help
As many of you know, the Arthritis Advisory Committee of the FDA will meet in Silver Spring (outside Washington, D.C.) on December 20, 2012 to discuss the new drug application for Ampligen. I am registered to speak at the meeting … Continue reading →