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Hearing from Those Who Suffer Mostly in Silence

October 12, 2010 by White House Chronicle 12 Comments

 

“There have been some medical schools in which somewhere along the assembly line, a faculty member has informed the students, not so much by what he said but by what he did, that there is an intimate relation between curing and caring.”

So remarked Ashley Montague, the British-American anthropologist and humanist.

The millions who suffer from what is termed Chronic Fatigue Syndrome in the United States, and Myalgic Encephalomyelitis in the rest of the world, await day that the medical establishment cares enough about the disease to cure it.

They await that day with an anxiousness that is unimaginable to those who have not been afflicted by the disease.

The two commentaries on CFS/ME that Llewellyn King wrote for the Hearst-New York Times Syndicate (and posted on this Web site) have elicited a terrible cry from the afflicted, including a woman who called herself “an unburied corpse.”

These cries called out for a special edition of “White House Chronicle” on CFS. That edition, featuring Deborah Waroff, a New York author, and Dr. Paul Plotz, a National Institutes of Health clinician scientist, first aired on television Oct. 8, 2010.

“I hope the television special and my syndicated columns push the National Institutes of Health and the Centers for Disease Control, and its political masters, to take action on this life-robbing disease,” said King, executive producer and host of “White House Chronicle.”

Here are some of the viewer responses to the CFS/ME special that we have received so far:

From: Terry

Thank you so much for your broadcast featuring ME/CFS.

I am a Canadian ME/CFS patient who has suffered from this disease for over 12 years. I am involved in research looking to see if there is a connection between the newly discovered XMRV retrovirus and neuropsychiatric disease in my child. The thought is XMRV may have been passed onto my child by me and played a role in expression of her condition.

I am waiting for general XMRV research to learn if the retrovirus played a role in cancer I was diagnosed with four years ago as well. I am wondering if I will develop other cancers and wait anxiously to learn more about ME/CFS and cancer.

I would like to state here, in my experience, CFS/ME is not biologically benign, and highlighting CFS/ME on your show is significant. Perhaps you may help move research forward and thank you in advance for this.

I am immensely appreciative, since as you can imagine, I am anxious for research to help my family understand our poor state of health.

I am a most grateful U.S. neighbor.

 

From: Melinda

I can’t thank you enough for the attention you have brought to ME/CFS suffers.

I have had to deal many times with the ignorance and intolerance towards this illness. It is such an isolating illness and it is well and truly about time that more attention is given to it.

It would be so much easier to deal with if we had understanding and support.

Again thank you!

From: Cheryl


Thank you so very much for your willingness and openness to bring new light to ME/CFS on your show.

We need you. We are desperate to have our voices heard. I can only tell you from my experience that no one would want to have this horrible, life-stealing illness.


I was a very active social worker and church and community volunteer before contracting a virus in 2004 that never went away. It took so long to get an accurate diagnosis that by the time that I did, I was completely bedbound, not being able to leave my home for weeks at a time.

I have to travel over 1,000 miles for medical care, since I am unable to find a doctor here that believes me.


In January of this year, I had to crawl out of my bed to fight breast cancer. With a compromised immune system, I worry about it coming back and not being strong enough for more treatments.

Cancer was a breeze compared to the battles of ME/CFS–and I do not say that flippantly.


Please continue to bring this horrible illness and the injustices to the public. It is a crime against humanity to be made to suffer like this with no answers.


God bless you, Mr. King.

From: Karen

How is “epidemic” defined at the White House?

When is National XMRV Testing Day?

How much longer do you think I can hold out before Chronic Fatigue Syndrome induced dysautonomia shuts down a vital central nervous system?

Filed Under: King's Commentaries, Uncategorized Tagged With: Centers for Disease Control, Chronicl Fatigue Syndrome, myalgic encephalomyelitis, National Institutes of Health, White House Chronicle

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