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.
Hope you are enjoying a good weekend.
I was struck by that, also. I looks like we may have a couple of heavy hitters in the media in our corner. Plus, the Katie Couric segment the other day -- it looks like the tide is changing, indeed.
ReplyDeleteThis is a big deal, Sue. Very big. Hoping and praying that Jamie gets through this tough time quickly. What meds is he on now? Enjoy your party..that time of year already!
ReplyDeleteI was very impressed with these and other articles that are hitting the press lately. It is invigorating.
ReplyDeleteHope you feel better soon!
This was very interesting. I couldn't get the video to load, but enjoyed the articles.
ReplyDeleteI am so glad to see that we are finally getting attention and perhaps we will also get more funding for research too.
Hope you all are feeling better. How was your party?
Blessings,
Elaine