Dr. Davis Debunks NIH's Claims of Fairness
Image captured from video provided by Open Medicine Foundation One Mission: To Figure Out This Disease NIH Deception The deception emanating from the National Institute of Health (NIH) is that ME/CFS funding is a priority for them. They really want to fund our research but 1) there are too few applications coming in to them and 2) they are of poor quality. Continue reading
Giving Testimony to CFSAC and a Call to Do More...
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
Tune in to CFSAC to see MEadvocacy and more!
The next meeting of the Chronic Fatigue Syndrome Advisory Committee is this week Tuesday, Aug 18 and Wednesday August 19, from 9am - 5pm EDT (Eastern Daylight Time). Sessions regarding the recent Institute of Medicine and Pathways to Prevention redefinition projects are on the agenda. We also hope to hear something about the recent proposal to defund CFS at the CDC, and the speculation of CFS moving out of the Office of Womens' Health to NINDS (an institute with a much bigger budget). Agenda - http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20150818-agenda.html.htmlMEadvocacy.org will be making an oral presentation on Wednesday during the public comments (10-11am). You may watch the live video stream here http://www.hhs.gov/live-1/, or access the listen only toll free teleconference line at dial 888-455-5629, passcode: 9717791#
Severe ME Day: Understanding and Awareness
“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
Tell Congress We Need An ME Champion
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
Ignoring the Voice of the Patients - Business as Usual
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
Update on USDOJ Protest by May12.org
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 - Disabled, Chronically Ill to Occupy US Dept. of Justice
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
(New Improved!) Tell Congress to Increase Funding for ME Research and more
"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
May 12 Release of "Forgotten Plague" Theatrical Trailer
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.