Tuesday, May 31, 2011

Movie Tuesday 5/31

The Monday holiday has left me a day behind!  That, plus a severe crash.

This is no "oops, I did too much yesterday" crash but one of those "whoa, my immune system has gone bonkers" crashes that only hits me about once a year or so.  It started Saturday evening, out of the blue - sore throat so bad it felt like I'd swallowed rusty nails, with terrible flu-like aches.  These exact same symptoms - in this exact same pattern - are how my CFS began 9 years ago, and I go through an episode like this once or twice a year.  Last time was September, 8 months ago.

So, I spent most of the holiday weekend in bed.  Craig was the only one in our family who had a busy social life this weekend, so Ken, Jamie, and I enjoyed a couple of movies:
  • Jamie and I have been wanting to see It's Kind of a Funny Story for ages (the previews just looked good to us), and it lived up to our expectations.  It's a sweet, funny, warm story about a 16-year old boy who is feeling overwhelmed and suicidal.  He checks himself into a psychiatric ward which requires that he stay for at least 5 days for evaluation.  The teen ward is closed for renovations, so he finds himself among mostly adults with all sorts of mental illnesses.  He becomes friends with Bobby, a suicidal adult who is going through a rough time, and attracted to Noelle, a depressed teen like himself.  I know a drama that takes place in a mental institution doesn't sound like much fun, but it is!  Well-written and well-acted.  We all enjoyed it.
  • Sunday night, the three of us watched The Black Swan, a super-creepy psycho-sexual-thriller starring Natalie Portman.  It wasn't as scary as we thought it might be, but it was very, very bizarre, basically the story of a ballerina who feels threatened by a new arrival and goes a little bonkers (OK, more than a little).  Weird.
Meanwhile, I have been reading a really amazing book - perfect for sick days in bed because I can hardly stand to set it down.  Check out my book blog for a summary of what we are all reading this week.

Have you seen any good movies lately?

Friday, May 27, 2011

The Latest XMRV Study

By now, many of you have probably heard about the latest study on XMRV in ME/CFS, conducted by Dr. Singh and published in Journal of Virology a few weeks ago.  I apologize for the late posting on this, but I wanted to gather information and opinions from several sources, especially a response from the Whittemore-Peterson Institute, before attempting to explain it.

So, here's the scoop, in brief:
  • Singh and her colleagues reported in the May 4, 2011, issue of Journal of Virology that they were unable to find any evidence of XMRV in any of the ME/CFS patients they tested.  What sets this study apart from many of the other negative studies is that Dr. Singh expected to find XMRV, consulted with Dr. Mikovitz, author of the original XMRV study at WPI, and used multiple methods to try to detect XMRV.  They analyzed blood samples from 100 ME/CFS patients and 200 healthy controls.  Even Dr. Mikovitz said she was "astounded" that Dr. Singh didn't find XMRV.  Dr. Singh also says she had problems with contamination.  Here is an article from Science that summarizes the study pretty clearly.
  • Though this sounds pretty grim, Dr. Mikovitz issued a response from WPI (to read it, scroll down to May 9 on this News page).  She clarifies some misconceptions about the Singh study and continues to defend her original positive XMRV study, published in Science last October.  She also further explains how WPI has made sure that there are no contamination issues in their lab.
  • Suzanne Vernon, Scientific Director of the CFIDS Association issued a detailed analysis of the Singh paper that explains the methods and approach used, as well as the results.  In her conclusion, she explains that the two huge multi-center studies of XMRV in blood sponsored by the Department of Health & Human Services (DHHS) are still going forward and that no matter how things turn out, WPI has done some amazing work and XMRV has brought much-needed attention to ME/CFS from the scientific community and the general public.
  • The International ME Association also issued its own analysis of the new study.  This is a highly technical document that delves into the details of the methods used in the Singh study.  Its conclusions suggest that the testing methods in this study were not adequate to detect XMRV.
  • While all this arguing is going on, WPI has published a new study that found a unique immune response in ME/CFS patients with XMRV, which would seem to provide new evidence for XMRV's role in ME/CFS.
So, once again, we have an XMRV study with multiple differing views of its outcome.  I'm not a virologist and don't understand the details of all the technical arguments over methodology, but it seems clear to me that these issues are not yet settled.  Certainly, I hope that WPI is right about XMRV - that would mean some answers for us, finally - but they still need to convince the scientific community.  Perhaps this new study on immune response will help.

Bottom Line:  Unfortunately, it seems to be more of the same - wait and see.  WPI continues its work into the role of XMRV in ME/CFS, the DHHS is moving forward (albeit slowly, at the pace of government) on its huge, multi-center studies of XMRV in ME/CFS, and we just have to be patient and wait for the scientific community to work it all out.

Thursday, May 26, 2011

Looking for Kids/Teens with ME/CFS Near San Francisco

A friend passed this request along to me:

"The SF Chronicle published an article on the protest in front of DHHS at the CFSAC meeting.  Aside from that, the reporter on the case, Erin Allday, is interested specifically in writing an article about children with CFS in the Bay Area.

If you/ your child is interested or if you know someone who might be interested, you can e-mail me and I will pass your information along.  Just click on my profile and use the "E-mail Me" link.

So, if you know of a child or teen with ME/CFS in the San Francisco Bay area who would be willing to be interviewed (or whose parents would be willing to be interviewed), please follow up.  We can use all the publicity we can get!

Monday, May 23, 2011

Movie Monday 5/23

Busy, busy, busy week and weekend, so not much time for movies lately.  We're all pretty tired today, after spending the weekend at soccer games, doing yardwork, cooking (me), and vacation planning.

Actually, the yardwork was quite a milestone for me.  Craig mowed the lawn (a new development that makes Ken happy!), and Ken worked most of the day Sunday, but the big news is that I weeded for about 40 minutes and....(drumroll, please)...did not crash today!  I did see, however, why weeding has always crashed me before.  Even with my beta blockers, within about 5 minutes of going out there, my heart rate was already up against my anaerobic threshold!  Amazing how much I've learned from using a heart rate monitor.

Anyway, Ken and I did squeeze in one movie Saturday night:
  • We watched How Do You Know, a romantic comedy starring Reese Witherspoon.  It was a fun, light-hearted movie, just what we needed.  I'm a big fan of Reese (very disappointed I missed seeing her at our local produce stand a few years back when she was visiting her then-in-laws).  She's about my age (mid-40's), almost exactly my height, has two kids like me...and was playing a 31-year old athlete in this movie quite convincingly!  She played a professional softball player cut from the US team and unsure what to do next, caught between two guys - a ditzy pro baseball player, played very well by Owen Wilson, and a nice guy caught in the midst of a criminal investigation, played by Paul Rudd.  Jack Nicholson (another favorite) plays his somewhat evil father.  Light and fun entertainment!
Have you seen any good movies lately?

P.S. If you are interested in what my family and I are reading this week, check out my Monday post on my book blog.

Friday, May 20, 2011

CFSAC Testimony From Two Mothers

OK, you better get the box of Kleenex out for this one.  Here are two more videos of testimony from last week's CFSAC meeting in Washington, DC.  Both of them are mothers, talking about their sons (one has two sons with ME/CFS; the other has three sons who are ill).  I found both of these very, very moving and powerful, and I think the committee members did also.

This is Denise, a good friend of mine, whose two sons, ages 18 and 20, have both been severely disabled by ME/CFS for the past 5-6 years.  She is also the person who coordinated the whole Speak Up for ME event to bring attention to kids, teens, and young people with ME/CFS:

And this is Katie, a mom I met for the first time in Washington, but with whom I immediately felt a connection.  She has three sons who have been severely affected by ME/CFS for many years; her sons are now almost all grown up.  Her story of her oldest son, Bill, brought me a glimmer of hope for my own sons' futures:

I just listened to these both again before posting them, and they both again brought me to tears.  I think you will see why these moving testimonies led the CFSAC to focus on pediatric ME/CFS in their next meeting.

These two moms - and me as well - sincerely hope that by telling our stories, we were also representing the many thousands of kids across the US and all over the world who weren't able to be there to speak for themselves.  We know you are out there, and you are not alone.

Tuesday, May 17, 2011

Listen to Radio Show on ME/CFS

Last night, I was on a radio show on ME/CFS broadcast out of Colorado, along with MCWPA founder Tina Tidmore and young ME/CFS patient Kitty.  I think the show went well - the three of us were able to pack in a lot of factual information, and the host seemed fascinated and even expressed interest in perhaps having us on again (this was Tina's second time appearing on the show).

If you missed it last night, you can listen online at this link or download audio files.

In other news...our 16-year old son Jamie went back to school today - hurray!!  He had a pretty severe 5-day crash after our trip to Washington, DC, last week, but he says it was worth it.  It's good to see him feeling more like himself again.  I started to recover this weekend and am feeling good again, too - took a walk yesterday and got on the Lifecycle for a while today.  Love those beta blockers and my heart rate monitor!  I'm trying to work up my stamina so I can enjoy some short hikes on our vacation in June, but the last few very hectic weeks set me back a bit.

And I skipped Movie Monday yesterday - too much stuff going on!  Ken and I did squeeze in a movie Sunday night - The King's Speech, which was just as wonderful as everyone had said.  Colin Firth was, of course, excellent in it, but I thought Geoffrey Rush really stole the show.  Great movie.

Monday, May 16, 2011

Radio Show on ME/CFS Tonight

Just a quick note to let you know that ME/CFS is the subject of a radio show tonight at 6pm, Mountain Time (8 pm Eastern).

Fort Collins (CO) Public Radio station 88.9 has a show called Holy Hormones.  The host previously interviewed Tina Tidmore of the ME/CFS Worldwide Patient Alliance on her show, and tonight she will be interviewing Tina, Kitty Lorentz (a young person with ME/CFS), and me!  This show will focus specifically on kids, teens, and young people with ME/CFS, and we will also talk about last week's CFSAC meeting in Washington, DC.

You can listen to the show live at this link.

Saturday, May 14, 2011

More CFSAC Testimony From Another Teen

A 15-year old teen girl, a good friend of ours from our local group, reads a poem she wrote about living with ME/CFS:

Friday, May 13, 2011

CFSAC Testimony from A Teen with ME/CFS

Another clip from the public comment period on Wednesday, May 11.
  And very articulate and moving testimony from 15-year old Sophie:

CFSAC Meeting May 11

Sorry for the delay in telling you abut the CFSAC meeting - Blogger has been down, in "read-only" mode for two days!  Very frustrating.

So, yes, we did go to Washington, DC, on Wednesday along with about a dozen other families - lots of parents and teens there - as a part of the Speak Up About ME campaign.  It was a very moving experience.  Here's a picture of the teens that were there - all with ME/CFS.  Many of our local group were there among them.

We were first to give our testimony at the start of the afternoon session, followed by many other parents and even a couple of brave teens who gave their own testimony.  I cried through the whole hour!  It was very moving, especially hearing the teens' own words.  I highly recommend listening to the full hour - go to this NIH link, click on the video for May 11, and the public comment period starts at hour 4 and goes until hour 5 (you can also download it as an MP3).

If you're not up to listening to a full hour but would like to hear our 5-minute testimony, here it is:

Important note: my husband Ken was right there with me, sitting next to our youngest son, Craig, but they completely cut him out of the video!  If you look carefully, you can spot his arm.  I just wanted you to know he was there with us, one of only two dads.

After the public comment period, we all left to go visit our Congressional representatives to ask for more equitable distribution of research funds.  We pointed out the huge disparity in the amount of research money devoted to ME/CFS compared to other, similar illnesses, especially given that ME/CFS affects far more people than the comparison illnesses.  We also asked that they help to ensure that the CDC and NIH finally take action on the items they've promised for years, including establishing centers of excellence for research and patient care for ME/CFS.  I don't know about everyone else's meetings, but ours went well, and the staffers we met with seemed truly interested and sympathetic.  I think having the kids there really made an impact.

The best news of all?  Our efforts are already beginning to pay off.  At the end of the meeting, CFSAC discussed pediatric ME/CFS and talked about setting up a database to begin assessing how many kids and teens in the US have ME/CFS.  They also agreed to set aside time in the next meeting to learn more about pediatric ME/CFS from expert speakers.  Also, Dr. Leonard Jason says he's already working on a grant to study pediatric ME/CFS.

As a side benefit, I've gotten some great feedback from my family and friends.  Every year for ME/CFS Awareness Day, I send out some sort of information to my family and friends, and usually I don't get much response.  But this year, sharing the video of our testimony has resulted in an avalanche of support and questions!  If nothing else, I've educated the people around me.

Craig was wiped out, but rebounded by 10 am yesterday, so he could go to school mid-day.  Jamie and I are still crashed, but we feel it was worth it!

Tuesday, May 10, 2011

Watch CFSAC Meeting Live Today and Tomorrow

Sorry for the silence - I've been far too busy to blog!  We went to my mom's in Connecticut for the weekend and are leaving again tonight for Washington, DC, to participate in this week's CFS Advisory Committee meeting.  This is the special awareness event I mentioned in an earlier post for focusing attention on kids and teens with ME/CFS.

At last count, they are expecting 35 participants from 14 different states.  The kids and teens (and me!) will be wearing matching t-shirts, many people (including my family) will be giving testimony during the public comment period of the meeting, and we are also visiting our Congressional representatives to ask for more funding for ME/CFS research, with a special focus on pediatrics.

You can watch some or all of the meeting LIVE online.  Just go to the NIH webcast website and click to watch.  The event for kids and teens is tomorrow, May 11, and the public comment period tomorrow is between 1-2 pm Eastern time.  So tune in to see my family and many others address the CFS Advisory Committee!

PANDORA and Denise Lopez-Majano have done a fabulous job of coordinating all of this.  I am somewhat crashed from all the traveling we've been doing (in between CT and DC, Jamie and I drove to NJ yesterday to see our Lyme doctor), but we are all very excited to be able to participate.  You can find me lying on the couch Thursday...

Friday, May 06, 2011

Raising Awareness of ME/CFS Through Music

I thought Friday afternoon would be a good time to tell you about a wonderful acoustic duo who are helping to build awareness of ME/CFS through their music.

The group is called Cinder Bridge and is made up of Susan Wenger and Ron Amistadi.  You can check our their blog - and their music - at their Cinder Bridge blog (several sample songs can be heard in the upper right corner of the blog).

So, what do they have to do with ME/CFS?  Someone close to them has ME/CFS, and one of their songs, "Everybody Knows About Me", was inspired by him.  The song is intended to emphasize how serious and debilitating ME/CFS is and to help dispel common misconceptions about it.  Here's a really awesome YouTube video someone put together using their song.

Their blog even includes an FAQ page that talks about their efforts to build awareness of ME/CFS, plus a link to this great Fact Sheet they created about ME/CFS to educate their listeners.  When they play "Everybody Knows About Me" at a public appearance, they explain what ME/CFS is and why they wrote the song.

As you can tell, I've been very impressed by their efforts...and I like their music, too!  If you're a fan, too, you can purchase their first CD here (though it doesn't include "Everybody Knows About Me" - they're currently at work on that one).  I hope you enjoy exploring their music as much as I have!

Wednesday, May 04, 2011

Finding Joy in Every Day

I had intended to write about joy today, but I'm feeling kinda down (post-vacation blues, I suppose)...then I realized that writing about joy is just what I need to pull myself out of this funk!

I've written about joy on this blog before and have even devoted whole posts to particular joys in my life (the Outdoors, Friendship....hmmm...I thought I got to more than that...).  Anyway, when we got home Sunday evening, I felt compelled to start my Joy Journal up again.  I used to write in it daily, recording any small things that had given me joy that day.  It's a really fabulous practice, a wonderful way to remind yourself of all of the good things in your life, even when it seems so limited.  For instance, even though I'm feeling a bit down today, I could still write these things in my Joy Journal:
  • That first sip of Lemon Zinger tea in the afternoon (I do love my Zingers)
  • My youngest son kissing me good-bye when the bus came this morning.  He does this every morning, then waves to me from the bus, but it still makes me smile every day.
  • The way a few minutes of yoga makes me feel, even when I feel achy and run-down.
  • Walking around Borders today.  I was shopping for my mom and step-mom, but I just love being IN a bookstore, surrounding by all those wonderful reading possibilities!
  • Watching Parenthood, one of my favorite TV shows, during lunch (even though I cried three times during this episode, I love it!)
There, see?  I thought I was having a bad day, but now I'm smiling.   It really does work wonders for the soul.

And yesterday I saw someone on the Today Show, Neil Pasricha, who further inspired me to find joy in the little things.  He's the author of a book called, The Book of Awesome (and now The Book of (Even More) Awesome which is why he was on the Today Show).   His books follow the same concept, that there are million of little reasons to be happy every day, and you just need to notice them.  Check out his website, 1000 Awesome Things, where every day he posts another little awesome thing to find joy in.  I think I will make it my first stop each morning on the web!

What brings you joy?

Tuesday, May 03, 2011

Post-Vacation Crash

Crashed today.

It's probably due to weaning myself off Ambien last night.  I have to take Ambien when I'm away from home in order to stay asleep all night.  At home, my regular meds for correcting sleep dysfunction work great, and I sleep soundly, but when I'm not in my own bed, it's just not enough.  I take a tiny dose of Ambien - half of a 5 mg pill - but there is still a 1-day adjustment when I get home.  I try to minimize the adjustment by taking one-quarter of a pill the first night back (it's tough to cut them that tiny!), but that first night with no Ambien is still always a restless one. 

I had all kinds of bizarre dreams last night, too.  I know it will be a bad day when I dream of being sick during the night!  I dreamt that Ken had dragged me out to an Irish pub with a bunch of people he works with (though no one I recognized).  Everyone else was partying it up, and I just kept feeling worse and worse.  Not a good sign, right?

Anyway, I'm hoping this will just be a little 1-day blip.  It's a Plan-B day.  I gave up on going to the grocery store and e-mailed Ken a short list of groceries to pick up to get us through the next two days.  Now I think it's time for some lunch and a nice, long nap - that should do the trick.

Monday, May 02, 2011

Back, Safe, Home Again

(that's a quote from an old favorite picture book, Cars and Trucks and Things That Go by Richard Scarry)

Like the Pig family in our old favorite book, we are Back, Safe, Home Again.  We had a nice trip out to Oklahoma to visit my father-in-law.  It was a long drive in only 3 days on the way back, with non-stop rain the last day, but not too bad.

Today it was back to reality and back to work.  I miss those long hours in the car with nothing to do but listen to audio books, look through magazines, take naps, and sing to favorite songs!  We gave each of the kids a CD for Easter - The Script for Jamie and a Glee soundtrack for Craig - and we had a lot of fun listening to those, in addition to our old favorites.  Back to e-mails and urgencies and long to-do lists today.

Although we were only camping 4 of the 10 days we were gone, it was wonderful to be back in our camper again.  I love the togetherness of camping (see The Joy of Outdoors).  With no TV, computers, or work waiting to be done, we just enjoy each others' company, sitting around a campfire, reading, and playing games.  We stayed in one gorgeous state park in Tennessee, Cumberland Mountain SP, and enjoyed a nice walk along the lake and waterfall there.  Our other nights were spent in more urban RV-park type campgrounds - not our usual thing but necessary this time to get all the way out there and back in only 10 days.

No movies last week (hence, no Movie Monday), but we did introduce my father-in-law to The Amazing Race and Glee.  He really enjoyed Amazing Race and is going to start watching it on his own (which is great because he's all alone and really has nothing to do).  At 85, he was a bit overwhelmed by the pace of Glee (and, I imagine, by some of its subject matter!), but he was a good sport and tried to follow all the plot lines.

In an odd twist of events, we arrived back home and had a message on our answering machine that Jamie won a cruise in a raffle he entered in a diner in Maryland!  I called today and it does seem legit, but the cruise is a tough deal for us because he only won 1 free spot, and there are 4 of us, but the travel agent also offered us a free week at a 5-star resort instead!  This would be a room for all four of us, so I think it might actually work out (of course, we still need to get to the resort).  The boys are going totally crazy over this!  Jamie sees this as proof that the lottery is a good investment (he gets really high grades in math but apparently needs more lessons in statistics!).

I almost forgot (which is a good sign) - I felt pretty good while we were away and continued my walks in Oklahoma.  I guess the beta blockers and Immunovir are still working (more on Immunovir in another post).  Jamie was just mediocre during the trip - he is still running very low on energy - though he managed to go back to school today and take his AP exam, so that's good.

So, getting back into the old routine and back to normal here.  Hope you are all doing well and had a good Monday!

(P.S. If you're interested in what we're reading, check out my Monday post on my book blog).