PANDORA Patient Advocacy Organization Applauds His Commitment
GRAND RAPIDS, Mich., Oct. 16, 2012 /PRNewswire-USNewswire/ -- At the Oct. 3-4 federal Chronic Fatigue Syndrome Advisory Committee meeting, Assistant Secretary for Health Howard Koh acknowledged that President Barack Obama's staff will now monitor the Department of Health and Human Services activities in relation to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and an ad hoc, cross-agency group recently formed under the direction of HHS Secretary Kathleen Sebelius. Currently, 1-4 million Americans struggle with the severely debilitating symptoms of ME/CFS.
"You may know that recently the whole issue of chronic fatigue syndrome and the impact on communities and families has reached the White House and even the president," Koh said at the meeting. "In a recent letter, the president expressed his concerns and interest in this whole area."
The July 26 Obama letter was a response to Nevada resident Courtney Miller's request in a 2011 town hall meeting that National Institutes of Health research funding be increased for ME/CFS. Her husband, Robert Miller, has been afflicted with the multi-system disease for two decades. Robert Miller testified before the advisory committee that the experimental drug Ampligen® was the only reason he was able to function. He has been on and off the drug since 1985, even though it has not yet received Food and Drug Administration approval.
Also, at the advisory committee meeting, Rear Admiral Sandra Kweder, deputy director for the Office of New Drugs, reported that the FDA is sponsoring a series of meetings, including a spring 2013 scientific workshop to identify reliable outcome measures that will spur progress in the ME/CFS drug approval process and likely attract more drug companies to this field. She said that the only prospective ME/CFS drug that has submitted a New Drug Application and is actively seeking approval is Ampligen®.
"It's been a long time coming," said Lori Chapo-Kroger, president of the Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy Inc. (PANDORA), a national advocacy organization for patients with ME/CFS and similar diseases. "Obama's interest and the 2013 FDA-sponsored stakeholders meeting reflect a new commitment to finding solutions for these suffering patients." Chapo-Kroger also gave testimony at the committee meeting.
Dr. Ermais Belay, with the Centers for Disease Control and Prevention, told the advisory committee of their new continuing medical education courses for health care providers. The courses highlight ME/CFS experts and diagnosis and management of ME/CFS. Belay also presented information on their current research to find disease characteristics that can be used to improve the diagnostic criteria, an issue that the advisory committee also included in their recommendations to Sebelius. ME/CFS has no widely accepted distinguishable biomarker and, as such, remains a diagnosis of exclusion.
The congressionally mandated Chronic Fatigue Syndrome Advisory Committee meets twice a year to provide expert recommendations to the HHS secretary on advancing research and health care services for those suffering with ME/CFS. The committee has a website and has posted videos of the fall meeting.
CONTACT: Lori Chapo-Kroger, 231-360-6830
SOURCE PANDORA, INC.