New Phoenix Rising Store is Now Open!

Mark Berry introduces the new Phoenix Rising Store and explains how you can donate to Phoenix Rising for free while doing your holiday shopping online. At the risk of stating the blindingly obvious, the annual festive season is now well and truly upon us. In the United States, today is Thanksgiving Day, so I’ll take this opportunity to wish all

Continue

Death Contract? ME/CFS Experts and Advocates Unite to Oppose US ‘Case Definition’ Contract

Mark Berry asks why the US HHS contract with the Institute of Medicine (IOM) to re-define ME/CFS has provoked such an unprecedented storm of protest, and explores the reactions of patients, organizations, experts and bloggers to the so-called ‘Death Contract’. On September 23rd, 2013, the US Department Of Health and Human Services (HHS) made an announcement that was to send

Continue

You and M.E. Together – a Carer’s Story

by Charlotte Dyer In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a

Continue

Call for Investigation into CFSAC Intimidation Allegations

by Mark On June 12, twelve ME/CFS organizations (including Phoenix Rising) and twenty-three advocates wrote to William B. Schultz, General Counsel of Department of Health and Human Services (DHHS), calling for an immediate investigation into the alleged intimidation of three voting members of the CFS Advisory Committee (CFSAC). Enclosed with the letter to Schultz was a transcript by Joe Landson

Continue

“Intimidated, Frightened, Threatened with Eviction” – CFSAC Spring 2013, Day Two

Mark Berry looks back on the second day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (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 (ME/CFS). The committee meets twice a year, and the Spring 2013

Continue

“The Bar Has Been Raised” – CFSAC Spring 2013, Day One

Mark Berry looks back on the first day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (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 (ME/CFS). The committee meets twice a year, and the Spring 2013

Continue
Change Request Form

Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

On May 12 – International Awareness Day for ME/CFS/FM/MCS/etc – Phoenix Rising joined with 8 other US ME/CFS patient organizations and 26 independent patient advocates to call on the Department of Health and Human Services (DHHS) to finally fix the problem of the many and diverse case definitions associated with our disease. In a letter to Secretary Sebelius, Dr Howard

Continue

International Awareness Day, May 12th 2013: Worldwide Protests and Events

Mark takes a look at what’s going on around the world this weekend to mark International Awareness Day May 12th is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Awareness Day events also recognize Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS), Gulf War Syndrome (GWS), Lyme Disease, and other chronic neuro-endocrine-immune diseases (NEIDs). Awareness Week runs from May 12th-18th, and

Continue