Saturday, March 9, 2013

Word of the Day

Grandiloquent Word of the Day: iatrophobia
An abnormal or irrational fear of doctors or going to the doctor.
* * *
My counselor friend has several times dismissed doctors' amateur psychologist diagnoses by pointing out the diagnosis requires it to be an irrational fear, and what I had expressed concerns about was rooted in fact -- it's not irrational for someone who loses consciousness without warning to think she's taking her life in her hands to walk downstairs without a spotter or cross a busy high-speed street without someone to stop traffic for her.
So, for the three-quarters of CFS patients who've had bad interactions with doctors, is it really an "irrational fear" that going to the doctor will be another abusive situation?

Friday, March 8, 2013

What is the ADA?

About the Department of Rehabilitation

Connecting, Organizing, Educating Youth with Disabilities

ME/CFS stakeholder workshop April 25-26

Dear Patients, Patient's Loved ones and Friends,

Since I ended my hunger strike, I have learned that the FDA has sent invitations for the ME/CFS Scientific stakeholder workshop scheduled for April 25-26th. The FDA hasn't disclosed who it is inviting, and did not solicit input from patients. You, the patients, made this FDA stakeholder meeting happen, and we believe patients need to be involved in setting the agenda and ensuring that the most valuable clinical expertise is represented at the meeting.

Therefore, Ampligen patients and I are asking you to email the FDA and Secretary of Health to urge them to invite the most experienced ME/CFS clinicians who use the most sophisticated treatments available and to host an Ampligen Roundtable in conjunction with the FDA scientific and stakeholder workshop. The lessons that are being learned from the Ampligen trials will benefit every ME/CFS patient.

During my hunger strike, the FDA and Secretary Sebelius's office were inundated with emails and phone calls, and congress people heard from their constituents. I humbly thank you for all your work during those days; our coming together raised the attention of our federal agencies on our health crisis. Once again we need to ACT together by emailing and phoning the FDA to have our voices heard. There is a template email/letter below. For those wishing to use it, just copy and paste for ease. The Cc is to me allowing me to calculate the number of emails sent.

For the health of Our ME/CFS community,


Robert Miller &The Ampligen Team

Email To: Secretary of Health Kathleen Sebelius, FDA Commisioner Dr. Margaret Hamburg, CDER Deputy Director Sandra Kweder, David Banks in FDA Office of Special Health Issues

Phone contacts: Please call in to make a personal request if you can:

· FDA Commisioner, Dr. Margaret Hamburg (301) 796-5000
· Mr. David Banks, Office of Special Health Issues (301)-796-8459
See Email Template Below:

Email To:,,,,,

Subject: ME/CFS FDA Scientific Stakeholder Workshop

Dear Secretary Sebelius, FDA Commissioner Hamburg, Dr. Kweder and Mr. Banks,

FDA states that the upcoming FDA scientific workshop and stakeholder meeting on ME/CFS is the right place to address the path forward for treatments, including but not limited to Ampligen. There is a serious unmet need in the patient community for medical treatment, and Ampligen is the only medicine that has been tested in clinical trials for ME/CFS in the last 20 years. However, we understand that the few clinicians with extensive experience using Ampligen have not all been invited to the workshop to share their understanding of clinical endpoints related to this debilitating illness.

As a patient with ME/CFS, I am strongly urging FDA to do three things regarding the ME/CFS science and stakeholder workshop:

The FDA should invite Dr. Daniel Peterson, who has undeniably the most experience treating patients with Ampligen and has among the most sophisticated understandings of clinical endpoints, enabling him to identify likely responders by subgrouping patients for various treatments, not limited to Ampligen. In his role as Scientific Advisor to Simmaron Research Foundation, he is collaborating in scientific studies into the immunological abnormalities of ME/CFS, including the NIH and CFI multi-site studies. His clinic has the highest response rate to Ampligen. That, along with his 30-year clinical experience, necessitates his input into future treatment pathways

FDA should hold an Ampligen Roundtable with all of the experienced Ampligen clinicians, some Ampligen patients, the sponsor and the FDA, CDC and NIH representatives, in conjunction with the FDA workshop. The clinicians and the sponsor are willing to attend such a meeting. No other medication is, or is about to be, in advance studies for treating ME/CFS or has shown such promise. The experts need to collaborate on a path toward approval for Ampligen, so current Ampligen patients can continue to have access to the drug and many other patients and their doctors can decide if Ampligen might work for them. The benefit of clinical knowledge gained from identifying those who respond to Ampligen is imperative. After FDA denied the application for Ampligen's approval in February, it posted a statement, saying "To assist companies with their development, FDA is sponsoring a workshop in spring 2013 focused specifically on ME/CFS drug development." And Dr. Hamburg has stated, "We are committed to continuing our dialogue with companies, innovators, patients, and other stakeholders to identify barriers to progress and better define what steps need to be taken to overcome any obstacles to innovation." This is the time to learn from Ampligen, as well as all the experts.

I also urge FDA to invite Robert Miller as a patient representative. Mr. Miller has taken the lead among patients in urging federal health agencies to pursue smart science and effective treatments for more than 10 years. He played a large part in getting the FDA scientific stakeholder workshop scheduled. His longtime experience in the Ampligen clinical trial gives him a perspective that is necessary to represent patients who participate in the only clinical trial available, as distinct from any of the patients who have been invited thus far. He is a leader among ME/CFS patients generally.

Our understanding is that this stakeholder meeting is designed to identify endpoints for measuring efficacy, so that more clinical trials can be set up and a path to approved treatments and drugs will be established and clarified.

As an ME/CFS patient my voice should be represented at this critically important meeting.

Your Name Here___________

Years ill ______________

City and State ______________



Tuesday, March 5, 2013

New ME Awareness Video

I recently was given the opportunity to do a short ME awareness video by Jim Radke of Rare Disease Report while at an event sponsored by Rare Disease Legislative Advocates. Why bother? Up until recently, NIH listed ME/CFS as a rare disease. One of the CDC's own prevalence studies puts us close to the 200,000 rate (within the US population) required by law as the maximum to qualify as a rare disease. Strictly-defined ME could easily be "rare". And last but definitely not least, I believe we need to make potential allies aware of our disease. Rare Disease Report reaches an audience outside of our usual choir, including people interested in not only rare diseases but neglected ones as well. I'm sure everyone agrees we are neglected!

Please check out the video and share it on your blog, website, Facebook, through your networks and email contacts and in any other way you can think of. If you start playing it, you'll see you can share it via YouTube as well.


--Charlotte von Salis

Monday, March 4, 2013

My Silver Anniversary and not the gift I wanted

25 years ago today, I got my diagnosis.
It was my uncle's birthday, so I phoned the house where they were having the party and told the whole family at once.  It was assumed to be a great birthday present for him, since the whole family thought that knowing what the problem was meant proper treatment to cure it.
Little did we know that a quarter-century later, there would still be no treatment, no cure, damn little research done -- in fact, my "anniversary present" was to wake up this morning to the information that CDC's "2013 budget request includes a decrease of $2.425 million for emerging infectious diseases below the FY 2012 level. ... Due to completion of population-based studies to address Chronic Fatigue Syndrome, the proposal also includes reduced funding that will shift focus of CDC's activities to patient and provider education and clinic-based studies."

Chasing the Shadow Virus |

By Hillary Johnson

Sunday, March 3, 2013

Cocoa could be the new brain drug -

Studies show that high levels of a natural compound in raw cocoa called flavanol lead to greater cognitive function