DROPPING THE CURTAIN ON CFSAC

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. Continue reading

Severe ME Day 8th August, 2018: Understanding & Awareness

  Artwork by Stonebird - raising awareness of Severe/Very Severe ME “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.)    Continue reading

Help us Revitalize our Website & Further Advocacy Work

  Thanks to one of our new volunteers, Olga Pinsky, our website is scheduled to get a revitalization. We are excited to have her bring a new look to our website with improved ME user-friendly functions. Continue reading

Request to Sign Petition #PwME4ICC & Other News

Below is our latest email. If you didn't receive this information, please consider joining or updating your email information.   PETITION TO SIGN FOR ADOPTING ICC  A new change.org petition has just been posted demanding US government adopt the International Consensus Criteria (ICC) for diagnosing, research and treatment of ME patients. Hashtag for this petition is #PwME4ICC (People with ME for ICC). Continue reading

The 26th ME Awareness Day: Still Fighting Unscientific Claims

  “The highest mode of corruption is the abuse of power.” ― Auliq Ice MAY 12 AWARENESS DAY The late patient and staunch advocate, Thomas (Tom) Hennessy Jr, realized the need to have a dedicated day to raise awareness for the diseases he championed for - myalgic encephalomyelitis (ME) and other complex immunological & neurological diseases (CIND) - such as fibromyalgia (FM), Gulf War illness (GWI), multiple chemical sensitivity (MCS), and chronic Lyme disease (CLD).  Continue reading

MEadvocacy's Comment To NINDS/CDC CDEs Draft & See What You Can Do

The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements (CDE) Working Group and the National Institute of Neurological Disorders and Stroke [NINDS]/Centers for Disease Control and Prevention (CDC) CDE Team released their draft version of the ME/CFS CDEs for public review on 12/15/2017.  Continue reading

Advocacy Lessons Learned from Martin Luther King, Jr. as We Honor Him

File:USMC-09611.jpg. (2017, September 15). Wikimedia Commons, the free media repository.   Guest editorial by Jerry Seidel, President May12.org*   Martin Luther King Jr. (MLK), Baptist minister and civil rights activist, never organized sit down talks with grand wizards of the Ku Klux Klan (KKK).  Continue reading

Testifying at CFSAC Dec 2017 and Looking for Changes in 2018

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) held meetings on Dec. 13 & 14, 2017. Videos and transcripts of the meeting can be found here. CFSAC provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Continue reading

CDC's Website Revision is No Reason for Celebration

   This blog was written in collaboration with Gabby Klein The Centers for Disease Control and Prevention (CDC) updated their website for ‘ME/CFS’ on July 3, 2017.  The revision was based on information provided by a stakeholders' working group and was decided upon by a steering committee of government people. The changes were based on the 2015 IOM Report which was sponsored and guided by the Health and Human Services (HHS). Continue reading

TruthCures Lobbies Washington, DC to Meet with Senate Judiciary Members

TruthCures.org Lobbying on June 5, 2017 FOR IMMEDIATE RELEASEWashington, D.C., June 5, 2017Representatives of TruthCures are lobbying June 5-9th and meeting with Senate Judiciary Committee Members to turn over evidence and demand a hearing. Continue reading