As most of you know, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) held their bi-annual meeting on August 18 and 19, 2015.   What IS CFSAC:  CFSAC, formerly known as the Chronic Fatigue Syndrome Coordinating Committee, was established September 2002. CFSAC is governed by the provisions of the Federal Advisory Committee Act. Its purposes include advising and providing recommendations to the Secretary of Health and Human services. through the Office of the Assistant Secretary for Health (ASH), on issues related to research, access and care for individuals with ME/CFS.  Continue reading

  “In my experience (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” ( Daniel L. Peterson, M.D.)  Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide.  ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS - with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves. What many might not know is that one out of four people with ME (PWME) over time become so ill as to not only be disabled, and not just housebound, but completely bedridden. These patients struggle to do what most take for granted like brushing one's hair without gasping for air, feeding themselves, or getting to the bathroom unassisted. For them, life is reduced to survival, with the 4 walls of their bedroom becoming their prison, and the outside world a faded distant memory.  Continue reading

Llewellyn King of The White House Chronicle, a long time supporter and fighter for ME patients, has written an article on The Hill's "Congress Blog".   Mr. King's blog is a plea to members of congress, seeking a "champion" to take on the campaign for ME. The emphasis is on raising awareness about the devastation ME causes and to persuade HHS to fund research for a cure.    Continue reading

  The P2P Report The Pathway to Prevention (P2P) report “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, commissioned by the National Institute of Health (NIH) was published on June 16, 2015.  It was unveiled with “much fanfare” (not!) at a teleconference with invited media and the public.  The media must have forgotten to call in because there was one lone question from a journalist.  The rest of the media might have been lulled to sleep by the “fascinating” introduction.  Of course, this resulted in periods of silence because the many questions that the public would have asked were ignored. Continue reading

    The USDOJ demonstration in Washington, DC, in front of the U.S. Department of Justice building, was a great achievement.  The group successfully delivered the criminal charge sheets to 20 foreign embassies and over ten elected U.S representatives and senators.  The goal being to reveal U.S. government fraud involving Lyme disease, Gulf War Illness, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Fibromyalgia, and Autism. Continue reading

PRESS RELEASE - IMMEDIATE Disabled and Chronically Ill Americans to Occupy the United States Dept. of Justice (USDOJ) from June 1, 2015 to July 4, 2015 in Washington, D.C. Groups of chronically disabled patients, victims of medical abuse, will be assembling for a peaceful but passionate protest on the steps of USDOJ, 950 Pennsylvania Avenue NW, Washington, DC 20530, from June 1 until July 4. Continue reading

"The only way to be heard is to actually speak out" One of MEadvocacy.org’s aims is to empower ME patients and their supporters with a strong voice.  For the past three decades, these voices have been ignored. The Department of Health and Human Services (HHS) has continuously neglected and marginalized this disease, by using overly broad definitions, trivializing disease names, and consistently underfunding research. Continue reading

  Ryan Prior and Nicole Castillo, co-producers of the upcoming ME documentary “Forgotten Plague,” released its first theatrical trailer.  The release was timed for May 12th, 2015 to spotlight and honor International ME Awareness Day events.  One of our own advocacy members, Susan Kreutzer, makes a quick cameo appearance in the trailer.  Can't wait for when the documentary will be released this summer. Visit the Forgotten Plague website for more information.