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 , , , , , , , , , | 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 , , , , , , , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , | 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

Posted in Uncategorized | Tagged , , , , , , , , , , , | 10 Comments

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 , , , , , , , , , , , , , , , | 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 , , , , , , , , | 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

Posted in Uncategorized | Tagged , , , , , , , , , , , , | 5 Comments

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 , , , , , , , , , | 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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 66 Comments

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 , , , , , , , , , , | 4 Comments

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

Posted in Uncategorized | Tagged , , , , , , , , , , , | 12 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 , , , , , , , | 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

Posted in Uncategorized | Tagged , , , , , , , , | 17 Comments

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 , , , , , , , , , | 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 , , , , , , , , , , , | 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

Posted in Uncategorized | Tagged , , , , , , , , | 2 Comments

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 , , , , , , , , , , , | 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 , , , , , | 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 , , , , , | 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 , , , , , , , | 3 Comments