Thursday, February 7, 2013

Discover Magazine: The latest in science and technology news, blogs

 
 
Order the issue with Hillary Johnson's article

Press Release -- Bob Miller Ampligen Hunger Strike

PRESS RELEASE FOR IMMEDIATE RELEASE ROBERT MILLER #HUNGERSTRIKE

Contact: Bob Miller and Courtney Miller
Tel: 703-554-5575
Email: bobmiller42@msn.com
...
DISABLED AMERICAN ON DAY 10 OF HUNGER STRIKE
Asks U.S. Government Health Agencies to Hold Meeting on ME/CFS

February 7, 2013 -- Calling attention to the plight of one million disabled Americans suffering with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and their lack of access to treatments and medications, patient Robert Miller continues his hunger strike, now on day 10.

As background, the Food and Drug Administration decided on Monday, Feb 4, 2013, that it will not approve Ampligen, the first medication ever considered by the FDA for ME/CFS. This illness disables one million Americans, leaving many bedridden, homebound and suffering for decades on end with little hope for recovery and little help from the U.S. government, which dedicates a mere $6 million dollars each year to ME/CFS research. There are no FDA approved medications for this illness.

Long-time ME/CFS sufferer Robert Miller says he will stop his hunger strike if the FDA agrees to hold a meeting with other key U.S. government health agencies, including the CDC, NIH, and HHS, along with well-known experts in the field of ME/CFS research, and along with the patient community, all with the goal of gathering the best thinking for how to continue, or initiate, studies on Ampligen and other drugs to treat ME/CFS.

Sample of news coverage on Miller's hunger strike:

http://bioworld.blogs.bioworld.com/2013/02/07/on-the-gom-boo-ampligen-and-holding-out-hope/

http://www.bioworld.com/content/ampligen-patient-hunger-strike-hemispherx-takes-crl-tailspin-1

PBS television program, "White House Chronicle." Feb. 3, 2013.

NBC's Reno, Nevada affiliate: http://www.mynews4.com/news/local/story/Patients-fight-for-FDA-to-approve-drug-application/zuCxhkI0eUOiECmK_McvmA.cspx

Another ME/CFS patient, Rivka Solomon, a Boston-area playwright who has spent much of the past 23 years homebound and bedridden, states, "Robert Miller is conducting this hunger strike for the million disabled Americans with ME/CFS who feel abandoned by their government for over two decades. Ignoring this very sick population can not continue. We have no choice but to take extraordinary measures, such as a hunger strike, to get the help we need from the U.S. government. We hope HHS Secretary Sebelius cares enough about disabled Americans to agree to Mr. Miller's very reasonable hunger strike demands."

Resource list: Experts in ME/CFS
Dr. Daniel Peterson, Sierra Internal Medicine, Reno NV 775-832-0989
Dr. Nancy Klimas, Nova Southeastern University, Ft. Lauderdale, FL 305-275-5461

# # #

If you'd like more information about this topic, or to schedule an interview with Robert Miller, please call 703-554-5575 or email bobmiller42@msn.com

Speed-Diagnosing Contest Run by Psychiatric Times

 
 
 
As Dr. Bell calls it, Game Show Medicine -- the goal is to be the first to ring in, not to be correct.
 
 

More info on the hazards of CFLs

 
 
What restaurant will destroy their entire inventory of foodstuffs when a CFL is broken or burns out?

The AIDS-like Disease Seldom Mentioned | UK Progressive

Hillary Johnson in Discover Magazine

Hillary Johnson has an article coming out in March 2013 Discover Magazine. It will be on newsstands February 11th. Those with subscriptions have it now.

Quote from the article: "Doctors have compared worst cases of CFS to end-stage AIDS. CFS patients have cancer rates that are significantly elevated and immune systems that are seriously impaired."

Hillary also wrote "Osler's Web: Inside the Labyrinth of Chronic Fatigue Syndrome." Chapter 33 is entitled "HIV-Negative AIDS."

http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/0595348742/ref=sr_1_1?ie=UTF8&qid=1360029960&sr=8-1&keywords=osler%27s+web

Wednesday, February 6, 2013

Chronic fatigue syndrome patients need an effective therapeutic

 
Klimas on Ampligen
 
"Why would the FDA approve MS drugs before there were concrete biomarkers to determine success? The answer is simple, Klimas says. The advisory panel saw MS as a serious disease that required interventions ASAP, and were willing to accept that clinicians would better understand where to use the first drugs with more experience using them. Now there are seven approved drugs for MS that have significantly improved quality of life for patients. But they are not willing to use the same logic for Ampligen.

"With or without a biomarker, the FDA should recognize the seriousness of CFS/ME and approve Ampligen, and open the door for other targeted therapies now," she says."

Tuesday, February 5, 2013

Hemispherx Receives Complete Response Letter From FDA on Ampligen

 
 
Readers Digest version: FDA wants more evidence.
 
 
 
At least they're consistent -- for the past 2 decades, I've been hearing every year that Ampligen is 18 months from approval.  Never actually gets there. 
 
Yes, I'm frustrated, but I'm also mindful of the politics of the situation:
Osler's Web, p.520 (the 1991 chapter) "Cheney noted, 'The FDA is *really* in a bind. If the agency approves the treatment IND application, they will, in one swoop, destroy the credibility of two government agencies."
 
As long as CDC says CFS is psychiatric, FDA can't approve a medical drug for it.  It's that simple.