Definitions Matter: IOM Report on ME/CFS

Being a sufferer of Chronic Fatigue Syndrome (CFS) means dealing with skeptical doctors, a lack of public awareness, and a very confusing diagnostic process. The last is a much bigger problem than even sufferers understand for it is the doctors being confused as well.

So I applaud the new diagnosis method proposed by the Institute of Medicine of the National Academies here in the United States. While I haven’t read the full report yet, the outlines and video presentation depict a much more streamlined (and dare I say it, more accurate) list of symptoms for diagnosis.

Quoting from the Key Facts PDF:

There are five main symptoms of ME/CFS:

1. Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. Cognitive impairment; and
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

The first three are mandatory and one of the latter two is needed to fulfill the criteria for diagnosis.

I suffer harshly from the first four and haven’t been tested for orthostatic intolerance. Lately, number four has been particularly bad, hence my not posting much. The last few days have been especially challenging making coherent sentences a challenge even when speaking. Today is better, thankfully.

Also in the report is a proposal to rename the disease to Systemic Exertion Intolerance Disease or SEID. Doesn’t roll off the tip of the tongue, does it? However, it is bang on what the illness is really about and, most importantly, replaces “syndrome” with “disease” which is important in the medical world.

Note that this report has nothing on treatment and is confined to diagnostics for doctors and researchers, so please don’t get your hopes up on a treatment being developed quickly or even at all. What this report does is add legitimacy to the illness which is vital for extensive research to be done like Stanford’s findings last year of physical abnormalities in CFS patients’ brains.

After over 25 years of having this miserable illness, I’d given up any hope of advancement in any way or form from the medical community. This may be more than a glimmer.

February Already?

“Tempus fugit,” said the Romans and indeed that observation still applies two millennia later. January turned out to be a bear of a month to get through, so next to nothing got done other than what was required. Hopefully, things will get easier as the temperatures warm and winter weather slowly departs.

That may be awhile, as I was snowed in yesterday and didn’t make it to church. Great irony could be found in the fact that I had asked to be covered for my Sunday school lesson the week before due to a forecast of snow that didn’t arrive. So of course the boy that cried wolf (NOAA) wasn’t listened to this time and I awakened to heavy drifting across our steep drive.

The World Is Burning–So What?

The first post of the year 2015 is something I actually started awhile back and forgot about. Lately I’ve been pondering how people deal with life’s challenges along with how much behavior is influenced by external pressures. Stress fractures in society are increasing in size and quantity while people seem less equipped to deal with them. That’s the backdrop for what I began writing last year and updated for this post…

Russia slowly undermines and takes away chunks of Ukraine, China bullies its neighbors and lays claim to vast swathes of sea, Islamists are wreaking havoc in France and Africa, illegal alien minors including gang members are flooding over the border with Mexico, Iraq lost territory to terrorists and Iran sent troops in, and the United States has the most corrupt and incompetent leadership in its history. Yep, it is business as usual -- if you are a student of history. Unfortunately, most people are not.