Chronic Fatigue Syndrome

 

UPDATE: The series will run on KDKA-AM 1020 April 21st Monday through Thursday (day of first FDA meeting) at 6:40 a.m. and p.m.

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Today starts The Lens, a blog that will attempt to examine issues that remain out of the public eye and far away from public action. This first post is a series that’s slated to run on KDKA-AM in Pittsburgh the week of April 21st.

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It’s about a disease often referred to as Chronic Fatigue Syndrome. The medical community knows it as Myalgic encephalomyelitis (you can hear the pronunciation in the segments below) and jointly known as ME/CFS for short.

The benign and innocent name was coined in the 1980s by the Centers for Disease Control and Prevention after an inability to pinpoint any certain cause or symptom set for the condition.

There’s no treatment or cure. Patients are often prisoners of their own minds and bodies, as those with severe cases can hardly move and having a simple conversation can leave a person exhausted.

The tide may be turning for patients, or at least that is the hope, as a first-ever stakeholders’ meeting organized by the Food and Drug Administration (which recently rejected the only drug in a decades-long clinical trial for ME/CFS sufferers) is being held April 25th and 26th in Bethesda, Maryland.  With patients bound to their beds and trapped in their homes, hardly anyone knows of the condition; researchers and drug companies are reluctant to act in a static climate of splintered funding and medical opinion–and some are following dead leads that presume the condition is mentally related.)

The condition is real, ignored, and for most,  terminal.

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The following is formatted for radio. Listen to a segment, then click back. Each is approximately 3 and a half minutes. 

For more information, visit:

http://www.mecfs.org.au/what-is-meorcfs
http://phoenixrising.me
http://nopostergirl.com

Cited in this report: Robert Miller. Jocelyn Waite. Rivka Solomon. Jennifer Spotilla. Greg Mitchell. Dr. Bruce Rabin. Dr. Judy Mikovits.

Background: Dr. Nancy Klimas, Dr. John Chia, Dr. Paul Cheney, Dr. Daniel Peterson, and two patients who preferred to remain anonymous.

2 thoughts on “Chronic Fatigue Syndrome

  1. Karen

    The FDA calls ME-CFS ”Severe and Life Threatening” . Where is the funding for research and treatment into this debilitating, severe, and life threatening illness that afflicts one MILLION people in the USA?
    How is it acquired? The American Red Cross won’t accept blood donations from people who have ME-CFS (also called Chronic Fatigue Immune Dysfunction Syndrome CFIDS). What does that imply? Why can’t I be an organ donor? Is ME-CFS-CFIDS related to Acquired Immune Deficiency Syndrome ?
    We need a lot of answers to this invisible epidemic.

  2. maryc59

    I have written a piece for you,David, to consider. Yet I don’t know what a key is or how to get my words to you for consideration. This illness I can illustrate far stronger and tell you horrible things I have survived. Right now, the verbal abuse is pretty bad. I wish I could hear the others, as I have been trying to help Bob Miller. I do not have positive expectations from this meeting in Bethesda, yet want to fight for him and the others. I will not die from M.E. but the neglect and abuse I have endured, but perhaps I will get sued if you publish it. I once asked my attorney if I could hold my family accountable in court, as I did not write all that happened. I was homeless, endured death threats from my ex-husband. He put 4 nails in one tire over and over, and my sister kept stealing my keys. Yet, because I was put in the psych hospital, I am the one who is crazy. This is hell. I did not grow up like this, but had a very nice family and friends. Gail is bedbound with a new litter of kittens. I want her to go to a specialist, and would take her if she would allow me. I can push through the pain, and have for many years. The Ampligen was a gift, literally, from my dad in a way, yet at month 4 he passed on. He was my encourager in the end. Thank you.

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