Wow, CBS is just rockin' the ME/CFS media world this week!
First the CBS Evening News with Katie Couric did a spot on the new research showing unique proteins in the spinal fluid of both CFS and chronic Lyme patients. Some have complained that the piece was too brief, but I was thrilled. This was network evening news! One minute, 40 seconds out of their precious one hour show was a huge victory for ME/CFS patients, especially considering the fact that they chose to report on the spinal fluid study and completely ignored last week's misleading CBT/GET study out of the UK.
Now CBS did a spot on this new research on The Early Show...and this time we got 2 minutes, 24 seconds! You can watch the video here. This report emphasizes the serious debilitating effects of CFS and how the new research may help provide diagnostic tests and perhaps treatments in the future. Interestingly, the health reporter doesn't mention Lyme disease at all in this report.
Also the CBS news coverage of this research has helped to fuel coverage on many other major news outlets, including MSNBC (c'mon Today Show, get with it!), Washington Post, Wall Street Journal, Yahoo! News, and Fox News. It seems to be completely eclipsing any more reporting on the UK PACE trials.
This just in! Here's a video link to the piece that Fox News did on this study. This was sort of a strange piece. Their medical expert did explain that the study differentiated between CFS and chronic Lyme, and he explained why that was important. He emphasized that CFS was a serious, biological disorder and that he himself has diagnosed patients with it. But he also said a bunch of stuff about how important it was to be able to tell the difference between depression and CFS, he implied that some people report symptoms they don't actually have, he briefly mentioned exercise as a potential therapy for CFS, and he kept emphasizing that muscle pain and weakness are the critical symptoms in diagnosing CFS. Huh? I have very little pain - just all-over flu-like achiness during a crash, but even that isn't really muscles. He said nothing about post-exertional malaise or signs of immune system dysfunction, like sore throat and swollen glands - two things that I believe are unique to CFS and helpful in telling it apart from other medical problems. So, it was sort of an odd piece...but they did cover the facts of the new study and emphasized the seriousness of ME/CFS. The more coverage of this and all other scientific studies, the better!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
6 comments:
Hi Sue
This was so good...wish they would have brought up Lyme but that is still such a political issue...it is exciting isn't it. Thanks for putting this up right away.
Is it just me or do others think that doctor on Fox News was talking about Fibromyalgia not CFS?
He mentioned it two or three times as the principal symptom of CFS (I don't have it either Sue), implying that that's how you tell if a patient has CFS or is just depressed (another puzzlement in his presentation).
Well, it's good to get coverage like this. Thanks so much for providing the links.
Last I checked all the network evening news programs are thirty minutes long, not an hour ;)
Sue,
So glad to hear people are finally talking about this. I am so glad its getting out there.
Thanks for sharing this.
Blessings,
Elaine
At this point just exposing it as a legitimate disease to the general public is a great thing.
-"Oh I've got CFS."
-"Oh dear, I'm sorry. I just heard about that on CBS last week."
not a blank stare.
It did concern me that neither piece actually used the CDC criteria for diagnosing CFS. Post exertional malese is the only symptom unique to CFS. Depression can present with muscle pain but it will ease with exercise. Depressed patients will also sleep better with exercise. Anyone with CFS will get worse with exercise.
The sore throat and swollen lymph nodes are two of the major differences between CFS and FM. The other is the type of fatigue. Since I have all three at some point in my life I can now tell the differnce between the tired of FM and depression vs the absolute lack of energy of CFS. It isn't a true fatigue but a serious lack of energy. I'm often not tired just unable to move. With FM or depression I was always able to hop on a treadmill not matter how tired I was.
The more I think about this the more I think it is a lack of vocabulary to acurately describe our symptoms that is at the root of the communication problem. Fatigue is synonymous with tired and that just isn't an acurate description of what happens to us.
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