Just My Honest Opinion

The date is July 21, 2006. It's the day I realized my gradual decline of function over three years into complete debilitation is from an incurable disease with no fix. I realized, thanks to the Internet, that I likely have the illness misnamed as "chronic fatigue syndrome." The prognosis described on multiple websites made me face a tremendous loss: I'll likely never go hiking or canoeing again in my life. I was only 40. While there were other day-to-day limitations and losses, those two were my great joys. As the grieving process began with tears rolling down, past words of wisdom came back to me. Some were words I had spoken to others; while others were words I had read or heard: "If you focus on what you can't do, then you will miss joys of what you still can do." "Everyone has limitations, some financial, others physical, others family situations. But life can still be full and fulfilling and joyful, despite those limitations." "None...

Have you been paying attention to the U.S. Congress lately? Noticed that since the passage of the Affordable Care Act, they've not done anything noteworthy that would create progress on any major problem? The reason: gridlock. What causes gridlock in Congress? Two groups that won't budge on their position, even in the slightest, so that an agreement, a compromise, can be reached. Those are called "hardliners." Illegal immigration reform is a primary example. G.W. Bush tried it; Obama; even McCain tried it. According to Wikipedia, the last time Congress made any change to immigration law was in 1986. Let's see, that's 29 years ago. They tried in 2005 with a reform bill passing the House, and in 2006 with a reform bill that passed the Senate. So why didn't it get signed? The two bills were different and the committees could not come to an agreement. It died in Congress, particularly in Congressional committees. No progress. Status quo. Problems continue....

When I think of the title of this blog post, Goldilocks comes to mind. A criteria for a disease should strike a balance between sensitivity (not leaving out those who have the illness) and specificity (not including those who have something else). It should be just right. But, what is just right with ME/CFS? What elements are needed in that porridge and at what temperature so that it is nutritional and pleasing? Jennie Spotila did a pretty good job of assessing the new SEID criteria and some questions it raises. So I made a comment on her blog . She particularly addresses the fear patients have expressed that the criteria will mean depressed people will mistakenly be diagnosed with SEID (systemic exertion intolerance disease, the proposed new name for ME/CFS). SEID criteria requires three things: Loss of function accompanied with fatigue Unrefreshing sleep Post-exertional malaise Then it requires at least one of the following: orthostatic intolerance or cognitive dysfun...

Did you read the whole IoM report? I did, which is one reason this blog is coming out now, days after the big announcement. I've also had a PEM crash, or I'm coming down with a virus; at this point I can't tell which. If you have not read the whole report, you're not alone. Clearly most reporters doing reports on the report have not read the report. Likely, most doctors won't read it either. And Congress? Yeah, right. But some in the government health agencies will read it. And so will some journal editors (or I guess they have already). I was like a man whose wife was going into labor the days before the release. It was going to be great or awful. But either way, it was going to be a big change. I coped by using two strategies: I planned a ritual to look forward to either way, that is a margarita (virgin if good, with some alcohol if not). And I lowered my expectations. As to the latter, I figured it was not going to be perfect, and I was not going to get all...