It can be rough advocating for ME/CFS but not just from the feds. They may ignore you or try to sidestep you, but at least they don't get personal. Some parts of our "community" aren't so considerate. Jennie Spotila is used to being in the thicket of it, but what happened over the past week surprised Read more [...]
David Tuller has dug deeper into chronic fatigue syndrome than any other journalist. He's covered the CDC, the Pace trial, XMRV and others. When asked by Julie Rehmeyer what got him started he said this.
I had a friend who was diagnosed with CFS about 20 years ago. I knew him before he developed Read more [...]
Ian Lipkin thinks the gut holds the key to Chronic Fatigue Syndrome (and who are we to disagree with him? ).
His study will identify microbes that are associated with immune activation in ME/CFS, then find ways to knock them down using probiotics, antibiotics followed by probiotics, restriction Read more [...]
"ME/CFS research and the care of ME/CFS patients will not be advanced through this dangerous sinkhole of examining trauma or lumping our already overly broad category into the shapeless mass of “fibromyalgianess.” Jennie Spotila - "P2P Agenda: What the Huh?
The P2p workshop is coming up in early Read more [...]
Jeanette Burmeister's attempt to force the Department of Health and Human Services (DHHS) to provide a wide range of documents pertaining to the IOM contract prevailed in court. Represented by her former law firm of Baker & McKenzie LLP, Burmeister argued that the documents provided by the Read more [...]
When the collapse came, I had to see this for what it was: a long battle with an uncertain outcome.
Jen Brea describes her agonizing course of ME/CFS from it's beginnings as chronic fatigue syndrome (weakness, sore throats, dizziness) and her depression diagnosis, to a complete collapse and Read more [...]
Stanford did it right. They produced video's of the March 2014 Stanford Symposium on ME/CFS and now they're giving us access to them - for free. Some of the most exciting findings in years came out in the Symposium.
Dr. Unger's excellent introduction to epidemiology in Read more [...]
What do you do if you have a disease which has few clinical trials but lots of patients needing help, and 30 or so practitioners with decades of experience under their belts?
Instead of waiting for a clinical trial to get underway (or not) you 'tap their intuition'; i.e. you Read more [...]