ME in America

Myalgic Encephalomyelitis – Unknown Cause. No Cure. New Hope.

ME 1

  By Lily Williams in ASBMBTODAY.   Lizzie Mooney is 12 years old. She is tall for her age with long blond hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings. Lizzie excels in reading and math. She spends time crafting and watches […]

Huge ME/CFS Event Held In Boston

Conference

      By Rivka Solomon in ProHealth. Every now and then something happens in our global ME (Myalgic Encephalomyelitis) community that is both noteworthy and hopeful. Something that makes us believe things may actually change for the better. That’s what happened on January 15, 2019, in Boston, Massachusetts, a city known as a medical […]

Perceptions Of Chronic Fatigue Syndrome In The Emergency Department

Livingston HealthCare Orthopedic Department

  From Georgetown University Medical Center.   WASHINGTON (January 10, 2019) — Findings from a novel online questionnaire of people with chronic fatigue syndrome (CFS) who rated their perceptions of care in a hospital’s emergency department suggest the majority of these patients do not receive proper care, say researchers from Georgetown University Medical Center. The study, […]

Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller

    By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]

Dropping The Curtain On CFSAC

CFSAC

  BY MEADVOCACY ADVISORY-COMMITTEE.   The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Its purpose included advising and providing recommendations to the Secretary of Health and Human Services, through the […]

The Monster Disease Medical Schools Don’t Mention

Llewelyn King

  By Llewellyn King in Inside Sources.   For 10 long years, I’ve been writing and broadcasting about Chronic Fatigue Syndrome, now called Myalgic Encephalomyelitis (ME). Like all chronic diseases, it’s brutally unfair to the afflicted. But ME also can claim to have been unfairly treated by doctors and medical researchers, the pharmaceutical giants, and the politicians […]

Myalgic Encephalomyelitis. Unknown Cause. No Cure. New Hope.

ME

By Lily Williams in ASBMB Today. Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings. Lizzie excels in reading and math. She spends time crafting and watches science […]

Changing Lives While Living With Chronic Illness

Erica

  By Chris Goudreau in ValleyAdvocate.com.   Erica Verrillo of Whatley has written more than half a dozen books and launched a non-profit national organization, all while being partially bedridden for the past three decades. Verillo has Myalgic Encephalomyelitis (M.E.), a chronic and fluctuating neurological disease characterized by extreme exhaustion, muscle weakness, sensitivity to pain, confusion, forgetfulness, […]

The Mystery Illness That Plagued This Writer For Years

Julie

    By Julie Rehmeyer in Oprah.com.   On Saturday, November 4, 2006, I woke up semiparalyzed. My legs felt lead-plated; the signals instructing them to move seemed to get scrambled on the way down. It was as if someone had sloppily replaced my limbs with those of an elephant and connected only 10 percent of […]

Why Did It Take The CDC So Long To Reverse Course On Debunked Treatments For Chronic Fatigue Syndrome ?

CDC

  By Julie Rehmeyer and David Tuller in statnews.com.   For years, people with chronic fatigue syndrome have wrangled with the Centers for Disease Control and Prevention over information on the agency’s website about this debilitating illness. The website highlighted two treatments that became the de facto standards of care: a gradual increase in exercise and a form of psychotherapy […]

An Entire State Goes “M.E.” In Congressional Breakthrough

Change

    By Cort Johnson in Health Rising.   An entire state goes “ME”. That’s never happened before. Courtney Miller of Simmaron, Emily Taylor of the Solve ME/CFS Initiative, MEAction and the USAWG worked together to enroll the entire Nevada Congressional delegation to put its total support behind increased funding for ME/CFS. This is notable not just […]

A Disease That Cries Out for Research as Many Suffer Silently

Scientist using a microscope

  by Llewellyn King in Inside Sources.   All diseases are cruel, but some have a refined brutality all their own. One such is Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). It is a monster, often hidden in plain sight; the suffering it inflicts is limitless. Tom Camenzind is a handsome young man who […]

The Time Is N.O.W. – National Women’s Advocacy Organization Joins The Fight For ME/CFS

nowlogo

By Cort Johnson in Health Rising.   This one action demonstrates why it’s so important to have a full-time professional advocate for chronic fatigue syndrome (ME/CFS). The National Organization for Women (N.O.W.) is not a small organization; it has 550 chapters in all 50 states. It’s a natural ally for a disease that’s a) dominated […]

More Clues Link Immune System Imbalance With Chronic Fatigue Syndrome

ME Drained

  By Giorgia Guglielmi in Science.   After a 5-month road trip across Asia in 2010, 22-year-old college graduate Matthew Lazell-Fairman started feeling constantly tired, his muscles sore and head aching. A doctor recommended getting a gym membership, but after the first training session, Lazell-Fairman’s body crashed: He was so exhausted he couldn’t go to work as […]

ME/CFS Research Community Surprises: Submits Ten Research Center Applications to NIH

Cort Johnson

  By Cort Johnson in Health Rising.   The NIH Research Center applications are in. The NIH is surely looking closely at how the chronic fatigue syndrome (ME/CFS) research community responds. After all, they haven’t responded very well over time. A Freedom of Information Act (FOIA) request indicated that the NIH receives few – really […]

Chronic Fatigue Syndrome: Diagnostic Tests, Treatment And Prevention Urgently Needed

Blood Test

    By Clarissa K. Wittenberg in The Huffington Post.   This blog was inspired by the good news that the National Institutes of Health (NIH) has doubled its research budget for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, it was shocking to see that the increase was from $7.6 million last year to $15 million […]

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