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Horrific Disease Ignored, Unreported In Minority Communities

Sunday 13 October 2019


From the White House Chronicle:



Horrific Disease Ignored, Unreported in Minority Communities

By Llewellyn King
October 5, 2019
Copyright © 2019 White House Chronicle.

It is a disease hidden in plain sight. It is a disease that destroys caregivers as certainly as it breaks the patient. There is no cure. To get it is a life sentence for those who suffer and for those who love them.

The disease is Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue Syndrome, and now generally referred to as ME/CFS.

I’ve been writing and broadcasting about this disease for more than a decade. I’ve seen the most extreme cases where young people are prone, unable to communicate and drip fed. And I’ve seen those who are afflicted to a lesser degree but can’t work or attend school, must measure their activity and are unable to tolerate exercise, have cognitive problems and are in a state of constant exhaustion, often accompanied by severe headaches, joint pain and intolerance to light or sound, or both. One bedridden young man can’t tolerate a hug from his parents.

Having attended many medical and ME/CFS activist meetings and having met many patients, I thought I had seen in patients a cross section of the patient population. Then my wife, the journalist Linda Gasparello, pointed out that we had never met or seen an African-American or Hispanic patient at any of these many meetings.

We asked Linda Tannenbaum, a tireless campaigner for a cure for ME/CFS as chief executive officer of the Los Angeles-based Open Medicine Foundation (OMF), if she had ever heard from African-American or Hispanic patients? She had not.


Full article…



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