Movie Monday 6/6

Well, I am finally coming up for air after 10 days spent completely incapacitated.  Whew, this was a bad one.  As always with this particular type of crash, I ended up with a bad case of bronchitis.  I finally started to feel better this morning.  My oldest son, Jamie, says he is feeling a little better, too - he's been in bad shape for weeks now, probably a reaction to his Lyme/bartonella treatment.  So, we've had a rough time here.

My dad and his wife came to visit this weekend, but we were pretty dull!  Jamie and I were both stuck lying on the couch (we took turns), and we watched a lot of TV.  We did see a couple of movies to break the monotony:

• Saturday night, we all watched The Green Hornet.  I expected a typical superhero movie, but this was more of a comedy (Craig told me I should have known that since Seth Rogen is the star).  It was very silly and actually pretty funny.  Since laughs were just what we needed, we all enjoyed it.
• Craig went to the pool with a friend Sunday, and Jamie and I were still feeling awful, so we browsed through the On-Demand movie choices and watched The X-Files Movie with Jamie.  Ken and I have seen it (maybe twice) before - we were big X-Files fans - but Jamie has never seen the show or the movies.  We explained it was about two FBI agents investigating paranormal stuff, and his eyes lit up!  He liked it very much and is now looking forward to watching the old TV episodes this summer.
• With school winding down, the boys don't have as much work to do in the evenings (well, Jamie just hasn't had the energy for much work), so went back to the On-Demand movie menu last night and ended up watching Get Shorty with the boys.  Ken and I saw it years ago, but we enjoyed watching it again with the boys.  Craig thought it was a bit too complicated (which it is!), but Jamie loved it.  John Travolta is just so good in that role.  We'll have to rent Pulp Fiction for Jamie, too.  

Well, we probably won't be watching any more movies for a while.  The boys have final exams this week, and I need to make up for those 10 days spent in bed and on the couch.  We have very little time now to get ready for our upcoming vacation.  Busy, busy!  Of course, I will have to be careful not to get too active too soon.

Have you seen any good movies lately?

Science Requests Retraction of Original XMRV Paper

XMRV and CFS are once again being splashed across all the major news media this week, though this time it's a big step backward.

The editors of the magazine Science, which published the seminal XMRV paper in October 2009, have issued a request to the paper's authors that they retract the paper, in light of the negative XMRV studies that have been published lately.  This news, with a strong negative spin, has been reported in all the major news media, from NPR to the Wall Street Journal to Scientific American, plus in many local papers and news shows and as far away as Australia.  Here's a short summary from the New York Times.

Of course, Dr. Mikovitz of the Whittemore-Peterson Institute issued a response.  You can read it at the WPI website (click on the two documents posted on May 31, 2011).  She once again defends their original research, points out flaws in the contamination theories, and states that this action is premature.

I try to stay away from all the various conspiracy theories that tend to circulate around ME/CFS, but this request from Science is so ludicrous, so premature that it's hard not to think that someone really is out to get us.  Most  knowledgeable scientists (other than one or two on the fringe) agree that this subject is far from closed and that more research is needed.  In fact, a couple of huge, government-sponsored, multi-center studies are in progress right now.  Why on earth would anyone try to cut off debate right in the middle of all this?  It goes against all principles of scientific study.

Let's just hope that logic and science prevail, so we can get more data and more information before jumping to any conclusions.  Unfortunately, though, no matter what happens going forward, the damage has already been done with all of this negative media coverage, and we are once again in the position of defending ourselves and our right to full scientific investigation.

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?

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.

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!

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.

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.

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.

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.

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:

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!

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...

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!

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?

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.

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).

Movie Monday 4/25

I hope everyone had a nice Easter (or Passover).  We spent ours on the road and arrived at my father-in-law's house in time for a nice little Easter dinner with him.

We had a good trip here and really enjoyed camping along the way.  We miss our little pop-up camper during the winter months!  And we had a wonderful dinner Saturday night with some good friends in Arkansas - friends that we met through this blog!  Their 17-year old daughter has CFS and is actually doing very well these days.  It was great to see them, and I discovered a new treat: fried pickles (really!) - yum.

Not much time for movies last week since we were busy preparing for our journey.  The kids were home sick (Craig for two days and Jamie all week), so they watched some movies during the day, but I was so busy I don't even remember what they watched.  So, just one movie to report on:

• Last night, we watched The Tourist with my father-in-law.  I'd heard mixed reviews of this recent thriller starring Angelina Jolie and Johnny Depp, but we all enjoyed it.  The scenery in Venice was stunning, there was plenty of humor in it, and though it seemed predictable at first, it had a few tricks up its sleeve that surprised us.  All in all, a fun movie.

Have you seen any good movies lately?

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

New Population Study on Kids/Teens with ME/CFS

A recent Dutch study attempted to quantify how many kids/teens have ME/CFS, information that is badly needed.  However, I don't think they quite got it right, based on the headlines I've been reading, like this one from Reuters:  "Chronic fatigue rare but serious in teens".

The problem, which is explained in the linked article, comes from the methods employed.  The study authors based the numbers on responses to surveys from pediatricians and general practitioners.  Less than half returned the surveys, and only half of the GPs participating in the study said they even recognize CFS as a distinct diagnosis!  So, the numbers are obviously much lower in this study than they are in reality.  How can you rely on a doctor's count of cases of ME/CFS if he/she doesn't even recognize it?

I can tell you from the number of kids and teens with ME/CFS I know personally just in my local area and the number of parents I hear from through this blog, that ME/CFS is NOT rare in teens.  If the CDC's estimate that almost 80% of people with ME/CFS are undiagnosed, then the number of teens affected must be much higher than this study cited.  At least, the study authors emphasized the severity of ME/CFS.

It's an interesting article, though, and perhaps it will spark some necessary and far-overdue debates about the incidence of ME/CFS in kids and teens.

As for my own teens, they've both been home sick most of the week so far.  Craig went back into school today, even though he wasn't feeling well.  He's got some fairly severe congestion, too, so I'm taking him to the doctor this afternoon - don't want to get stuck on the road on a holiday weekend with a sinus infection!  Jamie is still badly crashed with severe symptoms.  My husband and I said to each other last night that if this crash is still just from attending his prom Friday night, that's pretty depressing.  We're hoping they both feel well enough for our spring break trip.

My testimony for CFSAC

Yesterday was the deadline for submitting testimony for the upcoming May 11 CFS Advisory Committee (CFSAC) meeting hosted by the National Institutes of Health (NIH).  You may recall that we are planning a big awareness event, Speak Up for ME!, for kids, teens, and young adults with ME/CFS at the meeting, so I focused my own testimony on my kids.  This is a bit too long for my family's 5-minute speaking slot, so I'll have to edit it down before presenting it at the meeting, but I wanted to submit the complete testimony in writing.  Here it is:

"My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 13 and 16 have it also – they’ve both been sick for seven years.  I have always wanted to come to a CFSAC meeting, but I need to nap every day.  I know that attending today will cause a relapse, but it’s just too important to miss.

Although my own life has been dramatically changed because of ME/CFS and I am severely limited in what I can do, I want to primarily focus on my sons today because pediatric ME/CFS is rarely talked about – and even more rarely researched – and it is a much larger problem than most people understand.  In addition to my two sons, I personally know seven other kids with ME/CFS just in my local area, plus several more who probably have ME/CFS but aren’t diagnosed, and I’m sure there are many more.  I write a blog about living with ME/CFS, and I receive e-mails every week from parents whose kids are completely disabled by this devastating illness.

Our older son, Jamie, started showing symptoms of ME/CFS when he was eight years old and in 3^rd grade.  The symptoms came and went for a couple of years, then become suddenly much worse when he was ten.  Jamie missed 60 days of 5^th grade that year and was bed-ridden about 50% of the time.  When he started middle school the next year, we didn’t even bother counting the days’ absent.  After some intense battles with teachers and administrators (which left me much sicker), the school finally agreed to waive all attendance requirements and all non-essential courses.  Jamie took two classes with a homebound instructor and took the other three required classes in school.  He made it to those three classes about 60% of the time, with me driving him back and forth to school several times a day so he could rest in between classes (on the days he was able to go at all).

Our younger son, Craig, began showing ME/CFS symptoms when he was just six years old, in 1^st grade.  We recognized the sore throat, flu-like aches, and exhaustion after mild exercise, but his frequent chest pains and back pain scared us.  After many doctor’s visits, tests, and conferring with some experts, we were fairly certain he also had ME/CFS, though milder than his brother’s.  We didn’t want him to think of himself as a sick kid at such a young age, but when he missed 35 days of school in 3^rd grade and the principal began calling, we knew it was time to have him officially diagnosed.

We were very, very fortunate to be able to see Dr. David Bell and to confer with Dr. Peter Rowe.  They are both excellent doctors with amazing dedication to their patients.  They explained Orthostatic Intolerance (OI) to us and worked with our sons’ local pediatrician to treat it.  Kids often respond well to OI treatment, and we were fortunate that it worked quite effectively for our kids.  Both boys were able to return to school full-time.

Although we are grateful for this treatment that allows them to live more normal lives, ME/CFS is still a significant part of daily life for them.  They go to bed at 8 pm every night, even our 16-year old.  They have to be careful not to overdo and will experience a severe flare-up of ME/CFS symptoms if they do too much.  A sleepover at a friend’s house can result in several days of being too sick to get up off the couch.  Jamie still misses between 25 and 35 days of school each year due to ME/CFS flare-ups (a bit less for Craig).  They both take a lot of medication every day, and we know if they stopped the medications, they’d go right back to being bedridden much of the time.   As my 16-year old son said to me recently, “This illness has ruined my life.  I am so far from being a normal teenager.”

My husband and I worry about their futures.  Our older son will be college-age in a year, but will he be able to leave home?  Even if he does make it through college, will he ever be able to handle a full-time job?  What if the medications don’t work as well for him as he gets older?  What if he gets worse?  Neither of our sons has been exposed to the Epstein-Barr virus yet, a known trigger for ME/CFS.  What will happen if one of them gets mono or is exposed to another triggering infection?  These unknowns are frightening, but we know that we are the lucky ones, that there are thousands of kids across the US who are completely bedridden with ME/CFS and unable to attend school at all.

Living with ME/CFS is a constant struggle.  We can’t escape it even for a day because we can’t escape our bodies and our limitations.  It is always there and we worry that it will always BE there, and there’s nothing we can do about it.  When our children feel bad or can’t do something, we feel helpless, and there is no worse feeling for a parent than helplessness.

These kids are missing out on so much – parts of their lives they will never get back.  When I was a teen, my life felt so carefree – no worries, few responsibilities.  Jamie in particular constantly feels the weight of his illness and is always trying to catch up from missed days of school.  Our kids deserve more.  They deserve solid, scientific research and real treatment options that address the biological cause(s) of the illness rather than just masking symptoms.

After living a perfectly healthy life for 37 years, I got ME/CFS in 2002, and each of my sons became ill within a couple years of that.  We are living proof that this illness has both genetic and infectious roots that need to be further investigated.  Families like ours, with more than one person with ME/CFS, are not uncommon, as the 2006 New Jersey CFS Association study showed.

Although research funding for ME/CFS in general is severely lacking, funding for research into pediatric ME/CFS is practically non-existent.  There hasn’t even been a complete population study done on the incidence of ME/CFS in children and teens. 

Most, if not all, of the significant advances in ME/CFS research so far have come from private funding, but we need the involvement of the CDC and NIH in order to help the millions of Americans, including kids and teens, who are disabled by ME/CFS and can’t find a knowledgeable doctor or an effective treatment."

 P.S. There are still ways that you can help to support this awareness project, even if you can't go to the meeting.  Check out the Speak Up for ME! website for more information.

Movie Monday 4/18

Kind of a rough Monday here.  Both boys are home, crashed, today.  Jamie went to his prom Friday night and stayed out until 2 am!  Craig slept over at a friend's house Saturday night, then came home yesterday and slept all day.  Today's crash is probably the result of those two late nights, though Craig has some congestion, too, so there might also be a virus afoot.  Always hard to tell - he sometimes gets congestion as one of his crash symptoms.  Nothing to do but wait and see.

I have an insanely busy week ahead, trying to get ready for our spring break trip to visit my father-in-law in Oklahoma.  I received a fat package of additional forms from Social Security this weekend that have to be filled out and returned before we leave, too.  Of course, the information asked for is all stuff I already explained in my initial application; some of the forms are identical to those I already filled out!  Plus all of my doctors have been calling today for details on when I left work, etc.  I guess they all got their forms in the mail, too.

We did enjoy some movies this weekend:

• Friday night, while waiting for Jamie, Ken and I watched Love Happens, starring Jennifer Aniston and Aaron Eckhart, about a successful author and speaker on grief (Eckhart) who hasn't yet dealt with the loss of his own wife.  It seems to be a light romance at first, but it has more depth than most, dealing not only with love but also with loss.  We both liked it.  Then I went to bed, and Ken waited up to pick up Jamie!
• With Craig off at his sleepover Saturday, Ken, Jamie, and I watched Hancock, starring Will Smith as a hard-drinking, potty-mouthed, messed-up superhero.  He saves the life of a PR professional (Jason Bateman) who offers to help him clean up his image.  It was good, with some surprising twists in the plot.
• After Jamie went to bed, Ken and I watched Country Strong, starring Gweneth Paltrow as an alcoholic country music star slightly past her prime and Tim McGraw as a rising star who tries to help her.  It reminded me somewhat of Crazy Heart which we watched a few months ago, though it had its own unique plot elements.  Although I'm not really a country music fan, I enjoyed the music in the movie.

Have you seen any good movies lately?

Fascinating WSJ Article on Retroviruses

Our best friend at the Wall Street Journal, Amy Dockser Marcus (who has written some excellent articles on CFS) has written another article, a look at the latest research on how ancient viruses can contribute to modern disease.  Her article, How Old Viruses May Haunt Us, is not solely about CFS.  In fact, CFS is only mentioned in the last paragraph, but the information she provides is absolutely fascinating and very relevant to the puzzles surrounding CFS.

NIH State of the Knowledge Videocast Posted

For all of you who were waiting to watch some (or all) of last week's NIH ME/CFS State of the Knowledge Workshop, the videocast has been posted (just scroll down a bit to April 7-8).  If you want to zero in on certain presentations, you can refer to the meeting agenda to help find the sections you want.

Chronic Fatigue Syndrome on the SAT!

Jamie took the SAT (college board test) today for the first time.  You won't believe what he saw in the Vocabulary section...a sentence about CFS!!

He said it was something to the effect of, "People with Chronic Fatigue Syndrome were angry when the  doctor said it was psychosomatic, that it was all in their heads, rather than a physical ailment." (not the exact words but something similar).

Isn't that amazing?  We've hit the big time!  He said he felt like shouting out loud!  Several of his friends mentioned it to him after the test, too.

Does this mean our illness is finally, officially mainstream?

Time to Vote on a New Public Service Announcement!

You may recall I posted recently about a contest, sponsored by the ME/CFS Worldwide Patient Alliance, for a new ME/CFS Public Service Announcement (PSA) that will be sent to TV stations.

It's time to vote for your favorite PSA and let your voice be heard!  Here are the details:

You get to have your say with MCWPA. We are now calling for ME/CFS patients and their families to vote on the final versions of the PSA contest entries. After receiving patient feedback, the designers made changes.  Use the links below to watch the PSAs on YouTube (each one is only 30 seconds long):

View PSA #1 Hallmark.

View PSA #2 Serious.

View PSA #3 Prevalent.

View PSA #4 Whirlwind.

Be sure and view the above videos before going to the survey to cast your vote.

The winning PSA designer will received $400 from the MCWPA donations. An anonymous donor has also offered to give $100 to the winner's favorite charity. The second place winner will receive $200 and the third place winner will receive $100.

Voting ends on April 18 at midnight EST.

I just watched the videos and cast my own vote - it only takes a few minutes!

Movie Monday 4/11

Hope everyone had a good weekend!  I spent most of the weekend planning vacations - our road trip to see Ken's dad in Oklahoma for spring break and our big trip to California this summer.  I've really been feeling in a rut lately, so I can't wait for spring break!  We all need to get away for a little while.  Of course, that will put me even further behind in everything, but it will be worth it!

We enjoyed some good movies on Friday evening:

• Craig was at a dance, so Jamie, Ken, and I watched Deja Vu, an action-packed sci fi suspense movie starring Denzel Washington.  We loved it right from the start because it is set in our beloved New Orleans!  Washington stars as an ATF agent investigating a terrorist attack.  The FBI comes in to help, along with some top-secret new technology, and that's where the fun begins!  It was fast-paced with a clever and intriguing plot, and we all enjoyed it very much.
• Ken and I watched (over the course of a couple of nights) It's Complicated starring Meryl Streep and Alex Baldwin as a 50-ish divorced couple who have an affair with each other, with Steve Martin as an architect who is interested in Streep's character.  It was all very light and funny and lots of fun.

Have you seen any good movies lately?

It's 80 degrees here this afternoon!  Hope you are all enjoying this lovely Monday.

(If you're interested in what books we are reading this week, check out my Monday post on my book blog.)

Quote It Saturday 3/12 - State of the Knowledge

I realized that in my haste to post my notes from the 2-day NIH ME/CFS State of the Knowledge Workshop yesterday, I didn't really sum up the conference or express my perspective on it....which is probably good for the notes to be objective, but I thought you might be interested in an quick overview, too.  Since I heard the perfect quote to accompany this overview, I thought I'd include that, too.

This is actually an approximate quote, since I listened to the book on audio, but I got the critical parts right:

As my friend Christopher Reeve said, Optimism plus Information equals Hope.


          - Michael J. Fox, Always Looking Up: Adventures of an Incurable Optimist

(I loved this inspiring memoir - you can read my full review at my book blog).

Overall, I saw a lot of reason for hope at this week's workshop.  True, there are some huge challenges ahead, but we've come a long, long way from where we were just a couple of years ago.

Just the fact that this workshop took place is amazing and exciting.  To have most of the top ME/CFS researchers (and some clinicians and patients, too) in the same room for two days, exchanging information on all the different aspects of ME/CFS is a stunning accomplishment.  In the equation above, the Information side is growing by leaps and bounds.  I told my husband that the workshop overall was a bit like the old blind men and the elephant tale - each scientist is focused on his or her own small, super-specific area of expertise.  But for two days, they all sat there together and listened to each other and exchanged ideas.  It's a good portend for the future.

Progress is being made in many different aspects of ME/CFS - the brain, the immune system, genetics, the autonomic nervous system, and more.  True, each person is focused in one area, but there seems to be true interest in working together and in seeing the picture of ME/CFS as a whole.  I think the participants in the workshop learned a lot from each other, and I believe, from the comments made during the summary session, that there will be more integration and cooperation among them going forward.

Every single person there seemed to understand the severity of ME/CFS and have an idea of its devastating impact on patients.  Not one single presenter talked about psychological causes or confused CFS with depression - that alone is a big step forward!

Granted, scientific progress often moves at a glacial pace - every single hypothesis has to be tested multiple times in multiple ways, but important advances are being made in every area of study.  I think there is a lot of reason for hope.

WSJ Blog Covers XMRV Debate at NIH Workshop

In my summary of the 2-day NIH ME/CFS State of the Knowledge Workshop (see post below), I gave a very brief summary of the XMRV debate between WPI and the National Cancer Institute.  The Wall Street Journal Health Blog did a much better job providing the details of the debate that took place yesterday and today.  Check it out if you're interested in more information.

My Notes from NIH ME/CFS State of Knowledge Workshop

NOTE:  The purpose of this 2-day workshop was for scientists to present their latest research findings to other scientists.  As such, the presentations were aimed at fellow medical scientists, and the details were often over my head.  I do not have a medical background (and my last biology class was several decades ago!). 

Here, I am summarizing only a few of the key conclusions from certain presentations – this is by no means a comprehensive summary.  I didn’t watch all the presentations (had to take my naps and take care of my family) and some I left out simply because they were highly scientific and/or theoretical with little of practical use to patients today.  Also, I didn't start taking notes until Day 2 (I was just too sick), though I've included some key points from Day 1 here).  You can watch any or all of the presentations online, referring to the meeting agenda to help find the ones you want (they haven't yet posted the videos online, but you should be able to find links by next week at the NIH Videocasting website, unless the government shuts down).

DAY 1

INTRODUCTION:

Dr. Anthony Komaroff, Harvard, presented an overview of ME/CFS and its symptoms.

Dr. Leonard Jason, DePaul University, presented an overview of the various definitions of ME/CFS, including their flaws.

INFECTIONS – Each of the four following presenters talked about the role of various infectious agents in ME/CFS:

Dr. Glaser, Ohio State – EBV and CFS

Dr. Chia, EVMED – Role of Enteroviruses in CFS

XMRV (both of these presentations are HIGHLY simplified here – just the overall conclusions):

Dr. Mikovitz, WPI – XMRV in ME/CFS

• Dr. Mikovitz presented the latest findings on XMRV from WPI and focused primarily on all the reasons why contamination is NOT an issue and how they have proven this and reconfirmed their positive XMRV results in multiple ways.
• In a summary at the end of the Workshop, Dr. Mikovotz pointed out that HIV does not cause AIDS – the official definition of AIDS says it is caused by the combination of HIV plus one of many other co-infections and that it could possibly be the same case with XMRV and ME/CFS (where the co-infections are EBV, HHV-6, Lyme, enteroviruses, etc.).

Dr. Coffin, National Cancer Institute – Origins of XMRV and MLV

• Dr. Coffin presented his data on how XMRV and MLV originated from mice and contaminated the prostrate cancer cell lines and therefore concludes the XMRV positive studies are due to contamination.

(See the problem here?  There was some heated debate but no resolution yet of this issue.  Bottom line:  The scientific community as a whole has not yet come to a conclusion as to whether XMRV is a critical element of ME/CFS.  Some factions say yes, absolutely, no question; other factions say no way, not possible.  Studies are already planned and started to test these theories with blind, coded samples – These are detailed, thorough studies with answers expected perhaps a year or more from now.  Stay tuned.)

Dr. Light, University of Utah – Gene Expression Post-exercise in CFS vs. Other Illnesses

• There were clear differences post-exercise in the ME/CFS patients to differentiate them from patients with MS, fibromyalgia, and healthy controls (all participants were sedentary and deconditioned).

Dr. Christopher Snell – Exercise Intolerance

• Dr. Snell and his group at University of Pacific/Pacific Fatigue Lab have been doing the BEST research on exercise intolerance in CFS for over a decade now (my opinion, but widely held!)
• He described how they use cardiopulmonary exercise testing to characterize and define many of the effects of exercise on people with ME/CFS and clearly prove CFS is different from deconditioning.
• Their tests look at not just during exercise but also 24 hours and 48 hours AFTER exercise (HURRAY!).
• You can’t tell CFS patients from sedentary controls at baseline, but there are clear and distinct changes in CFS patients in the days following exercise.  We all know this already, of course, but this is clear, scientific evidence to show how disabling and critical PEM is for us.

Dr. Rowe – Orthostatic Intolerance and CFS

• General overview of OI in CFS (surprisingly, it seemed that some of the researchers focused in single areas weren’t even aware that OI is part of CFS).
• Studies show 95% of people with ME/CFS have OI (either POTS or NMH or both)
• Emphasized that OI underlies most symptoms of ME/CFS and is a critical component.
• Another speaker mentioned that studies show that LOW doses of propranolol (the beta blocker I take) was more effective at controlling POTS than high doses – I’ve heard the same conclusion from individual patients.
• For more information, watch this presentation online and/or check out Dr. Rowe’s CAA Webinar on OI (you can watch it on Youtube, read the slides, or read his full article):

DAY 2

Dr. Klimas – Biomarkers

• There are many immune system biomarkers identified that could be used for diagnostic purposes and to target treatment areas, especially those related to NK cell function and cytokines.
• Advances in testing in the last few years make these biomarkers more reliable.
• Dr. Klimas already uses many of these tests in her practice to diagnose, to categorize patients, and to target treatments.

Dr. Cook (U of Wisconsin) - Neuroimaging Biomarkers

• Data from neuroimaging has been used to document brain changes in CFS during mental activities: these show that people with CFS must work harder and use more of their brain to do the same tasks as healthy controls.
• This area is probably not ready yet to be used as a biomarker, but the research is promising and should be continued.
• Dr. Rowe asked if they can do brain imaging on patients while standing – not yet!

Dr. Dean, National Cancer Institute – Identifying Genes and Genetic Risk in Diseases

• Genomes have been identified for many complex diseases.
• One challenge: in order to identify genes, there need to be clear ways of defining and classifying the illness (i.e. biomarkers) – a problem with ME/CFS.
• Although this technology is not quite ready and cheap enough to apply to CFS as a whole right now (maybe 5-10 years from now), it can be used for individuals and for families (in my opinion, this is a critical area that hasn’t been investigated enough yet – incidence of ME/CFS in families).

TREATMENT:

Dr. Fred Friedberg, SUNY Stony Brook – Self-Management of ME/CFS and the Meaning of Improvement

• Not much new here - Self-management techniques (pacing, finding positive activities to improve satisfaction that don’t push past physical limits) can help patients and deserve more attention.
• He also referred to the PACE trials – showed data that CBT can indeed help some CFS patients but the problem is that the UK presents it as a first-line (and often ONLY) “treatment.”  Also explained that GET can be harmful if patients are pushing past their limits (big news, right?)

Dr. Biaggioni, Vanderbilt – POTS and CFS

• Another excellent presentation on OI, focused on POTS.
• Beta blockers are the best treatment for patients with POTS and CFS.
• Reinforced yesterday’s point that very low doses of beta blockers work best, in order to prevent the side effect of fatigue, even as low as 20 mg of propranolol (which is what I take).  They prefer a short-acting beta blocker (propranolol) because it’s impossible to titrate the longer-acting ones to a low enough dose.
• Important to avoid deconditioning  - the more time we spend lying down, the worse our POTS gets – but this is a challenge since just standing up can drive our HR way above the anaerobic threshold.  Can try recumbent bike or any exercise in water (because the water pressure helps to control BP and HR).  Beta blockers can allow POTS patients to exercise by lowering HR (as has been my experience).

Dr. Lucinda Bateman, Fatigue Consultation Clinic (Utah) – Treatment Overview

• She presented an excellent overview of how she treats patients:

1.     Diagnose accurately.

2.     Teach the concept of pacing.

3.     Address symptoms that alter function and illness severity (including despair, disordered sleep, pain, deconditioning - very carefully, adapting to illness severity, fatigue).  All of these symptoms can be effectively treated.

4.     Treat Orthostatic Intolerance and Low Blood Volume (using hydration, increased sodium, meds like Florinef, midodrine, and beta blockers).

5.     Treat Infections/immune dysfunction (with anti-virals, gamma globulin, Immunovir, Ampligen).

6.     Treat HPA Axis Dysregulation (HRT, thyroid, other hormones that might be lacking).

7.     Other treatments: Magnesium for pain, Vitamin B12 helps some patients.

IACFS is working on Treatment Guidelines – doctors can download Dr. Bateman’s intake forms at IACFS website.

SUMMARY SESSION:

• Stratification – categorizing patients – is critically important since the illness is so heterogenous but these subtypes must be standardized.
• Integration:  important to look at the whole illness, from a molecular level to a clinical level and share findings.
• Case definitions must be standardized, and standard operating procedures/methods should be standardized among researchers.
• Reproducible biomarkers are a must for future research to move forward.

• Director of NIH stopped by to address the group! He’d intended to spend more time in the workshop but was pulled into emergency meetings because of the likely government shut-down.  He expressed strong NIH support for furthering ME/CFS research, though he warned we are probably looking at times of record-low funding coming up.

NIH State of the Knowledge Broadcast - LIVE

Just a quick reminder - the NIH ME/CFS State of the Knowledge Workshop is being broadcast live NOW (all day today and tomorrow).

Just go to this website and click on the ME/CFS Workshop.  I had to download a RealPlayer (I use a Mac) in order to watch it - a quick and easy process started by clicking on Player Software on the same page.  The more people who log in to watch, the better - the NIH tracks the numbers!

Feeling pretty badly crashed today, so lying in bed watching the conference is just my speed for today.  Gotta get back to it...