In my last several posts, I promised a more personal update was in the works. In fact, this update is far overdue, and I want to apologize for that.
Unrest – A Devastating Documentary On Myalgic Encephalomyelitis
"What terrifies me is that you can disappear because someone's telling the wrong story about you." The quote above is taken from the closing lines of Jennifer Brea's new documentary, "Unrest." The film purports to be about the neurological disease Myalgic Encephalomyelitis and the experiences of those diagnosed with it. Unfortunately, far from helping those … Continue reading Unrest – A Devastating Documentary On Myalgic Encephalomyelitis
Unrest – A Personal Perspective
Some of my more devoted readers and friends may know that I was contacted quite awhile ago by Jennifer Brea, the woman behind the recently released documentary "Unrest," about being in her film. If you haven't read my more general review of this film and how it harms the very people it claims to represent, … Continue reading Unrest – A Personal Perspective
ME vs CFS – What’s Up With The Name War?
(Note: The following is an excerpt from my longer post, "Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)," written soon after the release of the recent IOM report. That said, I felt the analogy/explanation below deserved to be in its own post, separate from the SEID/IOM debate, so that people interested … Continue reading ME vs CFS – What’s Up With The Name War?
Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)
Since the recent release of the Institue of Medicine's report recommending the creation of a disease called Systemic Exertion Intolerance Disease, there has been a lot of confusion over what exactly the report says, and whether it is a good thing for patients. Some are claiming the report itself is about something called "ME/CFS" and … Continue reading Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)
The Past Few Months
It has been eight months since my last update, and I figure it's high time I post another.
Dear Friends, Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will … Continue reading Another Update
(Note: if you haven't read the post prior this one titled "Final Stages," you will want to do so before reading on. Click here to bring that post up. Thanks!) Hey guys, First, let me say a huge thank you to everyone who has liked, commented on, and/or shared my last post. The outpouring of … Continue reading Clarification
Dear Friends and Family, This is a post I've been putting off for quite awhile. But I no longer have the luxury of putting it off anymore - not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made … Continue reading Final Stages
I'm going through some big changes here, and not necessarily good ones. My initial version of this post was looking quite different, but things haven't played out the way they were supposed to, and to be honest, I'm in a bit of a mess. Here's the deal: Medicare recently made some nasty changes. Because of … Continue reading Big Changes