CFS in the News

There have been several news releases out since the first week of October - that the Whittemore-Peterson Institute discovered a retroviral infection XMRV that is greater than 95% of the more than 200 ME/CFS patients tested, and they "look forward to translating this discovery into treatment options!"


Whittemore-Peterson Institute - These are the ones doing the research, and their now 31-year-old daughter has CFS. (She got it at the age of 11.)
http://www.wpinstitute.org/xmrv/index.html
and their Q&A's - http://www.wpinstitute.org/xmrv/xmrv_qa.html - There's some good / interesting information there.

CFS discovery on Good Morning America last week (video link) with Dr. Donnica Moore -
http://abcnews.go.com/video/playerIndex?id=8864348

Nature News article - http://www.nature.com/news/2009/091008/full/news.2009.983.html

It's in the Wall Street Journal too, but you have to be a subscriber to read the whole article. http://online.wsj.com/article/SB125501227713473525.html

It was also in today's (10/25/09) Arkansas Democrat Gazette - http://www.arkansasonline.com/news/2009/oct/25/lifelong-health-chronic-fatigues-virus-li-20091025/ - but you have to be a subscriber to read the whole article. I haven't read it yet, but my mom's going to save the article for us.

CFS is featured on the National Institutes of Health home page at http://www.nih.gov/. Look for the "In the News" box on the right and a link to the XMRV press release.

Here's a link to "Xplained," an article by the CFIDS Association Scientific Director about the XMRV study published on Oct. 8 in the journal Science. - http://www.cfids.org/cfidslink/2009/110402.asp

CNN reports on CFS as one of the health problems doctors still miss. http://www.cnn.com/2009/HEALTH/10/19/undiagnosed.women.problem/index.html

XMRV has generated international news coverage. The ME Association (ME is the UK version of CFS) has published this statement on its website and is also collaborating with researchers to validate the study findings. http://www.meassociation.org.uk/content/view/1042/161/

This CFIDS Association Chronicle article was published in early 2009. In "The Viruses We Live With," Association scientific director Dr. Suzanne Vernon describes how viruses like Epstein-Barr Virus (EBV) can commandeer cells and systems in our bodies to ensu...re their survival. Written before the XMRV discovery, it may be helpful background for those interested in how viruses work. (http://www.cfids.org/cfidslink/2009/110405.pdf)

Dr. David Bell's Perspective on XMRV -
Note: Dr. David Bell is a pediatrician in upstate New York who first identified an unusual outbreak of illness in his community in 1984-1985. He has been involved in patient care and research on CFS...

New York Times article - Is a Virus the Cause of Fatigue Syndrome?
New York Times Q&A with Dr. Nancy Klimas - Readers Ask: A Virus Linked to Chronic Fatigue Syndrome

Here's the CFIDS Association's take on it.

Coincidentally, the CFIDS Association kicked off a new PR campaign recently called Solve CFS - a campaign to raise $1 million for CFS research by 12/21/09.

And another good thing to come out of this so far, is that it proves that CFS is a real illness, and not psychological.

Homecoming Dance

Last night was the Homecoming Dance at the high school. Before the dance, Jessica and I had a mother/daughter day getting pampered - We both got pedicures, got her eyebrows done and a manicure, and got her an up-do at the beauty school. Ahhhh - pampering! And she looked beautiful!

Jessica went with her friend, Matt, another friend, Bree and her date, James. (I wasn't ready for this, by the way!) We all, including parents, met to take pictures first. Then the four of them went to IHOP for dinner, and then off to the dance. The dance lasted till 11:00p.m. I told Jessica to call me if she needed me sooner, but she told me she planned to stay till it was over. And she did! I picked her up when it was over, and she had a great time.

She did sleep in this morning until 10:30, ate breakfast, and then fell asleep 20 minutes later when we were watching church online (as we do often when she's not up to actually going to church). She woke up a couple hours later. We've had a quiet day at home, but she seems to be doing ok.

Last year at this time, she got to go to her Homecoming Dance for one hour - no going out to dinner before or anything else. This year she made it for the whole thing, and she had fun.

It's Been a While Since We've Had a Day Like This

Jessica woke up to her alarm enough this morning to text me from bed to say:
"I'm not feeling good :( my throat hurts; I'm really tired and I have a headache... I think I'm going back to sleep :( "
I peeked in on her, but she was pretty out of it.

She woke up at 10am and was able to get up to take a Pop-Tart back to bed with her, still not feeling too good. At noon she was sound asleep.

She woke up in time to make it to her last class. They were supposed to be workshopping (critiquing) their drafts of their fiction writing so they could edit them and turn them in tomorrow, so she didn't want to miss.

She's still tired and has a sore throat tonight, but better than this morning. She got her homework done, and she's back in bed for the night.

It's been a while since she's had a day like this.

This School Year

Jessica's actually doing really well with school and everything this semester. She had one day this past week where I got a text from her while she was at school saying she didn't feel good (really tired, sore throat...) and wanted to go home and take a nap. Since she's driving this year, she drove herself home (just 1/2 mile), took about an hour and a half nap, ate lunch and went back to school. So she only missed lunch and one class that day.

This weekend was a fairly busy weekend. Friday night Jessica went bowling with a friend. Saturday, she and I and my parents went cold weather clothes shopping for school clothes, as well as shopping for a Homecoming Dance dress. Sunday was a birthday lunch with Steve's side of the family. Then we had a Dodgeball Extravaganza (dodgeball, laser tag, sumo wrestling, electric bull riding, carnival food, etc.) at church for the youth. Steve & I were helping with the food team. It was a terrific event for the kids, which drew in 600 to 700 kids that night! And lots of fun! Jessica mainly walked around with her friends, but she did ride the bull (and has been sore since). It was supposed to last until 8:30, but at 7:00 Jessica had had enough and was tired. I left my duty of serving drinks early to take her home and get her to bed.

She still has to go to bed earlier than the normal teenager, still gets tired, still has trouble focusing on occasion, still gets headaches and sore throats... But she's so much better than last school year! She's able to have a life this year and a social life. She goes out with friends. She has friends! Actually has quite a few friends - We're having trouble keeping up with who all her friends are - which is a wonderful thing! It's especially good to see after seeing her basically stuck in the house all of last year with just us - her family.