Bringing the Heat: An ME/CFS Blog

This is an extended version of an article originally published on ProHealth as “An Interview With Julia Newton, Founding Member of Newly Launched CFS/ME Research Collaborative.”By Clark Ellis Dr. Julia Newton is one of the founding members of the recently launched UK CFS/ME Research Collaborative (UK CMRC), a new initiative aimed at expanding medical studies into ME/CFS by bringing together experts in the field and several of the ME/CFS charities in the UK. Dr. Newton is Dean for […]

Joel asks a variety of leading doctors, researchers and patient advocates for their reflections on the FDA Drug Development Workshop. A short while ago, the US Food and Drug Administration (FDA) held a workshop for patients, doctors, and other stakeholders, to talk about drug development for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). You can read a summary of the first and second parts of day one of the two-day workshop, here and here. (Day two summaries will be published […]

by Jody Smith I’ll always remember my 25th wedding anniversary as being something special. I wish I could say that this was because my husband and I celebrated in some marvelous fashion, but that wasn’t it. At the age of 49, I thought I was having a stroke. I got up that morning feeling fine — or no worse than usual at any rate — but when I went to my bedroom to get dressed all that changed. Waves of sensory chaos began to crash over me, and I sat on the bed waiting for […]

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 Koh, Dr Thomas Frieden and Dr Francis Collins, we explained our concerns about the current definition activities of […]

Gabby (Nielk) continues our summary of the FDA Workshop with a look at the second half of Day One – a discussion entitled “Patients’ Perspective on Treatment Approaches” The FDA Drug Development Workshop for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) took place on the 25th and 26th of April 2013. It was well attended by patients, advocates, doctors, representatives of the CDC and even a few pharmaceutical reps. The workshop was also broadcast live […]