Rough week here - we're just beginning to recuperate today. Craig had a bad crash (a rare event) but went back to school on Thursday and is now symptom-free again. Jamie missed all five days of school this week. This morning, he said he felt about 50% of the way back to his normal state, so for the first time all week, he is able to sit up and attempt a little homework. I guess I either did too much or am reacting to whatever virus triggered the kids' crashes. I'm not feeling terrible today, but for the second day in a row, I have some crash symptoms that have been mostly absent for quite a few weeks. Tonight is a big event for us - our annual Mardi Gras party, pretty much the only social event we host all year - so I'm hoping Jamie and I perk up a bit more.
Instead of posting a quote from a book today, I decided to post quotes from two news articles that appeared in print yesterday. I think this is a big deal because BOTH the Wall Street Journal AND the New York Times published articles on ME/CFS yesterday when there was really no big news item to react to. Both articles focus on the complexities and diffculties in diagnosing and treating ME/CFS and both are well-written, balanced, and factually accurate.
Here's a quote from the NYT article , which focused on the differing case definitions
"In studying the condition, he* and other researchers exclude patients whose only symptom is fatigue, however disabling, and instead rely on a case definition that includes other cognitive, neurological and physiological symptoms. Those symptoms, they believe, indicate a complex immune system disorder possibly caused by a virus or another agent."
(* Dr. Andreas Kogelnik, an infectious disease specialist in Mountain View, Calif.)
- "Troubles of Chronic Fatigue Syndrome Start with Defining It" by David Tuller, New York Times
And, here is a quote from the Wall Street Journal article , which focuses on defining ME/CFS with respect to the known cluster outbreaks and also its name
We gave case studies of patients to the [medical] trainees, described the disease as chronic fatigue syndrome, Florence Nightingale disease or myalgic encephalopathy to different groups, and then asked the trainees about prognosis, illness cause and treatment. Those who were told the condition was called myalgic encephalopathy were much more likely to give the patient a poor prognosis and to attribute the illness to a medical cause.
- An Illness That's Hard to Live With - Or Define by Dr. Leonard Jason, Wall Street Journal
This article also includes an absolutely wonderful video about the Lyndonville, NY, outbreak, featuring our own personal hero, Dr. David Bell. The video brought tears to my eyes - it is very well done. Jamie was listening while I watched and loved it, too. You really should click the link above to at least watch the video.
So, this is a big deal, don't you think? Two of the world's biggest and most well-respected newspapers both tackle ME/CFS on the same day and in an accurate and balanced way. Change is in the air.