Oooooklahoma!

I love singing that song when we're out here visiting my father-in-law in Oklahoma!

We had a tough time getting here, but we're doing OK now.  We left home the day after that huge storm hit the northeast.  All the flights out of Philadelphia had been cancelled the day before we left, so the Philly airport was crazy!  Plus, we still had 50 mph winds, so many flights, including ours, were delayed.  We spent 10 hours in airports and airplanes Monday and finally got to the house about 1 am (2 am our time!).  A very long day.

As expected, we suffered some fall-out from that long day.  Poor Jamie was horribly crashed on Tuesday - stayed in bed and read all day.  Jamie brought 4 books with him and has finished all of them already!  I managed OK through the day but then had a killer headache at night - possibly the worst of my life, the kind that makes you feel sick all over.

Today was much better.  We're all rested and enjoying being here.  Today we went to Pop's, a very cool shop on historic Route 66 that sells...pop!  All flavors from all over the world.  We picked out a mixed 6-pack of some great flavors and had lunch there.  We finally had the energy to play some games tonight, and even got my FIL to play with us for the first time in years!  The whole family played Skip-Bo, then Jamie smeared me in dominoes.  Ken, his Dad, and the boys are now enjoying watching the Oklahoma State Cowboys football game.

It's always nice and quiet and relaxing here, so that's good.  I'm enjoying the break and reading a lot.  Hope you're all enjoying this quiet week, too!

Christmas Joys

I hope everyone had a wonderful Christmas!

We enjoyed a nice Christmas at home.  Jamie and I weren't feeling good for some of it, but that's the nice thing about our quiet day at home - we could rest when we needed to.

I was really hoping to make it to Christmas Eve church service, but I was still badly crashed by that afternoon.  So, we gave up on that plan (with much relief), had our dinner, then snuggled into the family room to watch It's A Wonderful Life together!  It's the first time Craig had seen it, and Jamie hadn't seen it in about 6 years, so it was really fun to share one of my favorites with the kids.  Of course, Craig made fun of me when I cried at the end (as I always do!), but Jamie said, "I can see why this movie could make you cry."  I love it!

Strange, isn't it?  Each man's life touches so many other lives.  When he isn't around, it leaves an awful hole, doesn't it?


...You see, George, you really had a wonderful life!

We did get up off the couch to briefly make an appearance at our neighbor's open house on Christmas Eve...and we even changed out of our sweats (briefly!).  I probably shouldn't have gone, but they are such wonderful people and are so kind to us.  We only stayed for a short while, then came back home to read our traditional Christmas books around the tree before bed.

We all managed Christmas morning OK and enjoyed opening our presents and having a big breakfast.  We pulled off some great surprises, including a ping-pong table for the boys and a new TV for their games in the basement (to replace the 80's-era one they were using!).  If you're interested in reading about the books we got as gifts, check out my book blog.  By afternoon, Jamie and I were both feeling crummy, so we spent much of the day reading and watching movies.

Jamie barely made it to the dinner table, then collapsed back onto the couch, in the dark family room, curled up in a ball.  No matter how many times I see it, it still breaks my heart when he feels so bad.  He went up to bed at 7 pm, but he's feeling much better today, thank goodness, and is having fun with his friends and his brother and their new toys!

I hope all of you had a merry Christmas, too!

Happy Holidays!!

Merry Christmas and Happy New Year to you all!

Things are pretty much done around here (finally!).  I'm pretty badly crashed from pushing myself so much these past few weeks but am resting today.  I made it to our cookie decorating/Grinch watching party last night with our closest friends, and I am hoping to make it to the candle-light Christmas Eve service at our local Unitarian church tonight.  Then, nothing to do but relax and play for a few days before we head to Oklahoma to visit my father-in-law.

I hope you're able to enjoy some of the blessings of the season this weekend, with your family and friends.

Here's to a happy and HEALTHY new year for us all!!

Who Do You Tell and How Much?

How do you know when and how (and if) to tell casual acquaintances about your illness?  I know some people like to keep their illness to themselves and some don't even tell those close to them.  My personal approach has always been quite open - I find it's easier on me if the people in my life understand - but I still wonder sometimes when and if I should tell those I don't know as well.

This is on my mind because today I told the mom of some of Craig's friends about my illness - and about my sons' illnesses as well.  I didn't really intend to, I just sort of blurted it out and am wondering if that was OK.  I've known this mom for many years but we don't know each other well (in fact I had to look up her name when I got back home!).  Her two sons played on the same t-ball team as Craig when they were little, and the three of them are now in the same middle school together and all play soccer together, too.  Today was the first time Craig has been to their house, so when I dropped him off, I went inside to say hello and thank you, just to be polite. 

She's really nice, and we got chatting about school, the kids, our homes, etc.  She said something about how tiring and hectic the holidays can be and that's when I just blurted out that I have a chronic illness so this time of year is extra-challenging for me.  A few minutes later, we were talking about the kids' teachers, and I told her that Jamie and Craig also have the same illness and that the teachers have been great about that this year.

That led to the inevitable question, "Do you mind if I ask what illness you have?" and my standard reply, "It's an immune system disorder with a pretty silly name.  It's called Chronic Fatigue Syndrome in the US."  She asked if it was genetic, and I told her there is a genetic component and mentioned that Craig is doing so well thanks to medication.  She was very kind and seemed interested, so I think that was OK.

To be honest, it's a bit of a relief to me that she knows now.  I'm sure the other parents wonder why I never volunteer at school and why I sort of keep to myself on the soccer sidelines.  You can't just randomly walk up to people who don't know you at all and announce your illness, though sometimes I wish it were more visible to others.  At one soccer game this fall, it was pouring out - really raining hard - and one of the parents had brought a canopy for the parents to stand under.  They invited Ken and I under, but it was standing-room only, so we politely said thank you and stayed in our side-by-side chairs, huddled under a golf umbrella.  They must have thought that was strange, but there's no way I could have stood to watch the game...and no way I could have explained to a whole crowd in the middle of a downpour, either!

So, maybe this is good that at least one of the moms knows.  I don't want pity, but it's nice when people understand my limitations and know that I'm not just anti-social!  It's a tough call to make.  What's your approach?

WPI Refutes Latest Accusations of Contamination in XMRV Studies

I haven't had the time or energy to post about this, but I imagine you've seen at least one of the many articles published this week and last claiming that there is no XMRV in ME/CFS and that the previous positive studies that found XMRV were due to contaminated samples.  This new proclamation is coming from the UK but has been reprinted by many major news outlets.

I haven't been paying much attention to it because I knew it was all BS.  As I reported this fall from the NJ CFS Conference, Dr. Mikovitz addressed the issue of potential contamination in her presentation, including detailed explanations of why both her findings and those of the FDA/NIH study could not possibly be due to contamination.

Since this new accusation is getting so much press, I just wanted to post the refutations.  First, here's an excellent explanation written by a fellow blogger at CFS Chronicles - I absolutely love her coining of the term "retrocrapologists"!!

And here is Dr. Mikovitz own refutation, released from WPI yesterday:

"Statement from the Whittemore Peterson Institute regarding
Retrovirology December 20,2010by Whittemore Peterson
Institute on Tuesday, 21 December 2010 at 04:13
----------------------------------------------------------

The Lombardi et al. and Lo et al. studies were done using
four different methods of detection. They were not simply
PCR experiments, as were the studies by McClure et al. and
others who have recently reported their difficulties with
contamination. Experienced researchers such as Mikovits,
Lombardi, Lo and their collaborators understand the
limitations of PCR technology, especially the possibility
of sample contamination. As a result, we and Lo et al.
conducted rigorous studies to prevent and rule out any
possibility that the results reported were from contamination.
In addition to the use of PCR methodology, the Lombardi team
used two other scientific techniques to determine whether,
in fact, we had found new retroviruses in human blood
samples. We identified a human antibody response to a gamma
retroviral infection and we demonstrated that live gamma
retrovirus isolated from human blood could infect human
cells in culture. These scientific findings cannot be
explained by contamination with mouse cells, mouse DNA or
XMRV-related virus-contaminated human tumor cells. No mouse
cell lines and none of the human cell lines reported today
by Hue et al. to contain XMRV were ever cultured in the
WPI lab where our PCR experiments were performed. Humans
cannot make antibodies to viruses related to murine leukemia
viruses unless they have been exposed to virus proteins.
Therefore, recent publications regarding PCR contamination
do not change the conclusions of the Lombardi et al. and Lo
et al. studies that concluded that patients with ME/CFS are
infected with human gammaretroviruses. We have never claimed
that CFS was caused by XMRV, only that CFS patients possess
antibodies to XMRV related proteins and harbor infectious
XMRV, which integrates into human chromosomes and thus is a
human infection of as yet unknown pathogenic potential.

"The coauthors stand by the conclusions of Lombardi et al.
Nothing that has been published to date refutes our data."

Judy A. Mikovits"



Sue again...I hope that helps put these ridiculous accusations to rest (though of course, the controversy will continue...)

It's the Most Exhausting Time of the Year!

Yes, yes, it's also a wonderful time of year, but I'm pretty worn out at the moment.

We enjoyed a very nice weekend with my family in Connecticut.  I always love spending time with my niece and nephew (and everyone else, too!), we ate delicious meals (thanks, Mom!), and there wasn't a single emergency or emotional break-down.  So, all in all, a fun weekend.  We spent a lot of time watching videos from our recent family vacation in Jamaica (along with the DVD I spent all last week preparing) and reliving good times together.  Amazingly, we had no trouble with traffic on the way there or home, a first for the New Jersey Turnpike!

Even though it was a good weekend, of course it was tiring for me.  I didn't DO anything physically, but I don't sleep well away from home, and it's tough living with ten other people, even just for a couple of days, when you have CFS.

Back home, I just spent two days in a row shopping, and you know what that means.  Yesterday, I made my one and only trip to the mall.  I went to the smaller mall in our area, so it wasn't crowded or too large to get around, but I was already worn out.  I just needed a couple of items for Craig that I couldn't get online.  I tried hard to take it easy - walked very slowly, stopped to sit on benches, etc. - but it was still the mall.  I used to get worn out going to the mall BEFORE I had CFS!

Today was Craig's last day of school before winter break.  Jamie and I drove to see our Lyme doctor in NJ, then stopped at Target across the street to stock up on necessities and to give Jamie a chance to finish his shopping.  It wasn't too bad - Jamie now drives all the way there and back (!) and he pushed the cart - but it was still another day out and about and on my feet.

I still have a lot to do this week, but it should be easier from here on out.  Those were the two big days.  I still need to wrap presents, finish Christmas cards (I did most of them in the car this weekend!), mail a bunch of stuff, and get groceries (though maybe Ken can do that).  Our dear friends are taking a turn hosting our annual cookie-Grinch party, so that will help.  We've upheld this tradition with our two families for almost 20 years now.  For awhile, before CFS, it turned into a big party with other families invited, but we've held onto one of our favorite traditions by scaling it way back to just the two of us...and I buy my cookie dough now! 

How are you holding up so far this holiday season?  What are your strategies for getting through all this extra activity?  I hope you're finding time to enjoy the season - I plan to do that this week, as things slow down and we have a few quiet days alone, just the four of us.

Movie Monday: Blake Edwards Dies at 88

No time for movies last week with all our holiday stuff going on, but I just read that Blake Edwards, the famous Hollywood writer/director and husband to Julie Andrews, died last week from pneumonia at age 88.  Did you know he had CFS?  He appeared in the CFS documentary I Remember Me (an older film but highly recommended).

And guess what?  The Hollywood Reporter's obituary of Blake Edwards actually mentions his CFS diagnosis!  Although it wasn't a secret, he didn't seem to mention it very often - I'm guessing he wanted people to focus on his accomplishments, not his illness - so I was surprised to see it included in this article.

He was a talented man and will be missed.  Favorite Blake Edwards' movies, anyone??  Of course, the Pink Panther movies were classics, but I didn't realize he also directed Breakfast at Tiffany's, which I loved.

The Votes Are In!

The FDA voted yesterday to ban CFS patients from giving blood until they have more information on infectious agents and CFS!  It's about time.

A kind reader (Thank you, Luke!) just clarified that today's action was a recommendation from an advisory committee to the FDA, recommending they ban blood from ME/CFS patients.  The FDA hasn't actually taken action yet...

Sorry for the mistake - I'm so busy with holiday preparations that I must not have read the article carefully enough.

Here's another article from Bloomberg BusinessWeek on the recommendation.

Latest News on XMRV and Blood

I've been really overwhelmed with holiday stuff lately and am way behind on my blog postings, so you may have heard this news already, but it's big news for all of us so I thought I'd pass it along:

Although many countries, including the UK and Australia, have banned people with ME/CFS from donating blood in the wake of the XMRV research findings, the U.S. government has been dragging its feet.  Last week, the American Red Cross decided to stop waiting for government action and announced it would no longer accept blood from donors diagnosed with ME/CFS.

And, today and tomorrow, the FDA Blood Products Advisory Committee is meeting (FINALLY!) to discuss XMRV and related viruses and the potential dangers they pose in the blood supply.  Let's hope they make the right decision.

Time to make a nice, soft dinner (Craig got his braces put on today).

Movie Monday 12/13

Whew, another crazy busy holiday week.  I just remembered I hadn't done Movie Monday yet!

We did make time for some DVDs this weekend (you'll see I browsed the W section at the library), and Jamie was home sick today, so he and I caught a couple of movies on TV.  And, are you ready for this?  (drumroll, please)...We went to see a movie in the theater!  Can you believe it?  We manage that about once a year, so it's a big deal.  So, lots to report today:

• We saw Harry Potter and the Deathly Hallows in the theater on Saturday.  Ken, Jamie, and I had all read the book (but a while ago).  All four of us loved the movie - it was excellent, as they all have been.  This is the movie series we leave the house for!  And a side benefit of waiting to see it until it's been out a month is that we pretty much had a private screening with about 10 other people in the theater.  Now we have to wait for next summer for the final movie.  I'd like to re-read the book before then.
• Ken and I watched Winter Passing on DVD Friday night.  About a half hour into it, Ken pronounced it "quirky"!  It was a little odd, but we both enjoyed it.  Zooey Deschanel (who is so adorable) plays Reese, a struggling actress with famous writer parents who heads home to Michigan to retrieve some love letters from her parents that her mother left to her in her will.  A publisher has made her a big offer for the letters.  When Reese arrives home, however, she finds her father in a sorry state, being cared for by two strangers, Shelly, a writing student of his, and Corbit, an odd sort of handyman-bodyguard (played by Will Ferrell).  Secrets come to light slowly as we learn the backstory of Reese's parents and her unbringing.  It was very good.
• On Saturday night, we watched What Just Happened, starring Robert DeNiro as a Hollywood producer whose life is falling apart, both personally and professionally.  It's filled with stars and will appeal most to those who enjoy Hollywood insider stories.  The box proclaimed review blurbs like, "Outright hilarious!" and "Priceless laugh-out-loud lines!"  We didn't think it was all that funny, though it did have its moments that were mildly amusing (like the Bruce Willis scene).  
• Today, Jamie felt awful and drowned his sorrows in back-to-back movies on TV.  I had my laptop out but watched with him.  First we saw Arlington Road, a good thriller with an excellent cast.  Jeff Bridges plays a college professor teaching a class on terrorism whose FBI wife was killed by an extremist group.  He begins to suspect that his new neighbors, played by Tim Robbins and Joan Cusack, aren't who they appear to be and starts to investigate their backgrounds.  His new girlfriend and his wife's old FBI colleague think he's being paranoid because of what happened to his wife.  So, the question is...is he paranoid or is something sinister really going on?  It's a good suspense flick, though we didn't like the ending.
• During lunch, we watched Instinct, an interesting movie about an anthropologist, played by Anthony Hopkins (who always plays creepy guys!), who spent years living with gorillas in Rwanda and is now in prison after murdering two men in Africa.  Cuba Gooding, Jr. plays the therapist assigned to conduct a psychological evaluation of the prisoner, who won't speak at all at first.  As the movie progresses, the two men get to know each other better and both affect the other prisoners, and we gradually learn more about what really happened in Africa.  It was pretty good.

Have you seen any good movies lately?

'Tis the Season for Giving!

I've been soooo busy lately, bouncing back and forth between activity and crashes.  I probably should have written this post about three weeks ago, but maybe there are some of you out there like me who haven't finished your holiday shopping yet.

I just wanted to remind you that there is a simple way to earn money for ME/CFS research while shopping online through two excellent websites.

iGive includes thousands of online stores, and it is also a search engine.  First, register with iGive and pick a charity - it's quick and free.  Through tomorrow, they're running a special promotion.  Use this link to sign up, and they'll donate an extra $1 to your charity with your first search (you don't have to buy anything or even visit a store - just use their search engine once).

When you want to shop, go to iGive.com, just find the store you want on their page (you can click on the first letter, type into the search box, or browse through various categories along the left side), then click through to the store.  A pop-up box will indicate what percentage the store will donate to your charity of choice.  As a cool bonus, the pop-up box also tells you about any special sales or coupon codes you can use at the store.  Then, just shop normally and the store will donate a percentage of your purchase to your charity.

I've used iGive for about 5 years now, with the CFIDS Association as my designated charity.  I believe the Whittemore Peterson Institute (WPI) is there now, too.

The other website I sometimes use is GoodShop.  It works similarly, though you don't have to register.  Each time you go to the site, type in the store you want and the charity you want to donate to.  On this one, I usually designate WPI.

So, do some good with your shopping this season!  Besides, online shopping is perfect for all of us with ME/CFS.  I tried actually going to a store on Tuesday, and I'm still trying to recover!

One last note.  If you have any money left over for charitable giving this year, consider making one last donation to WPI.  I heard recently that they are ready to start clinical trials for anti-retro-viral drugs for XMRV in ME/CFS patients but that they don't have the money to start the studies yet.  Besides, if you make your donation before December 31, you'll have another tax deduction for 2010!  I'm going over there now to make mine.  I really want to see those clinical trials start!

Hope you're managing this hectic season a little better than I am!

Movie Monday 12/6

Happy Monday!  Wow, we had a busy weekend.  It was supposed to be even busier, but we had to ditch a few activities.  All three of us were stretched to our limits, but we had a lot of fun.

On Saturday, we made our annual trek to the tree farm to cut down a Christmas tree.  It was a much happier occasion this year - last year, Jamie was too sick to come along (first time one of us ever missed out) - so we were in high spirits to all be out there together again.  On our way there, we stopped by a local Unitarian church for their annual pancake breakfast, along with the two families who are our closest friends.  It was great to see everyone, and I especially enjoyed the social interaction after a week of being mostly stuck at home.

We had planned (I know, what were we thinking??) of going out to dinner Saturday night, then to see the latest Harry Potter movie.  I was worn out from the tree farm but thought I could manage it, but Jamie was feeling really exhausted.  He hasn't been sleeping well the last few nights, and it's taking a toll.  So, instead, Ken and Craig went to the grocery store for frozen lasagna and to the library for DVDs.  That's one thing CFS has taught us all, to stay flexible and roll with the punches.

On Sunday, we put the tree up and decorated it, which turned out to be an all-day project, but it's one of our favorite parts of the holiday season.  So, now the house is a total mess, but there's a beautiful Christmas tree in the middle of the chaos!

So, here are the movies we watched Saturday night:

• With the kids, we watched Ocean's Twelve, just the kind of light-hearted fun we needed!  We just watched Ocean's Eleven a few weeks ago, and the kids were eager to see the sequel.  We all enjoyed the star-studded movie with its clever, unexpected plot twists.
• Ken and I watched a holiday-themed movie, Midnight Clear.  It's one of those movies where a bunch of seemingly disparate story lines eventually come together.  It's about several different people whose lives are all at a low point, for various reasons, who inadvertently touch each others' lives and make a difference...and it all takes place on Christmas Eve.  It's a small, independent film that won a bunch of awards at various film festivals.  We both really enjoyed it.  There's not a lot of action; it's a somewhat quiet, gentle movie.  Things look pretty grim for some of these people during the movie, but it has an uplifting, hopeful tone to it by the end. 

Another very good, though lighter, holiday movie is The Holiday starring Cameron Diaz and Kate Winslet, which we watched last year.  I also love The Family Stone, which made me both laugh and cry.   And, of course, I have to watch It's a Wonderful Life at least once during the season and cry my eyes out at the end!

Have you seen any good movies lately?  Do you have any favorite holiday-themed movies?

(If you are also interested in what we have been reading this week, check out my Monday update on my book blog).

Laura Hillenbrand in Elle

Have you completely O.D.'ed on stories of Laura Hillenbrand yet?  Every time I think I know all there is to know about her, another outstanding article comes out.

The latest article was published in Elle, and it provides an in-depth look at Laura's life and her writing, with a great amount of detail provided about how CFS has affected her and what her daily life is like.  The more I learn about her, the more I admire her and her amazing attitude and persistence.

I hope you find this latest article as inspiring as I did (thanks to Denise and Martine for sending me the link).

I was feeling a bit better this morning and hitting the usual afternoon slump now, so I'm hoping to be up to getting our tree tomorrow, as planned.  Hope you have a good weekend!

ME/CFS Worldwide Patient Alliance

I'm still pretty badly crashed.  I suspect now that it is probably a herx reaction to my Lyme treatment because I cut my antibiotic dose in half for 5 days last week, to reduce the sun sensitivity while I was on vacation, and went back to the full dose on Saturday.  I'm very achy and have a sore throat, so I'm trying to rest and take it easy...therefore, a quick post today...

Just wanted to tell you about a brand-new patient organization, the ME/CFS Worldwide Patient Alliance. MCWPA is a grassroots effort just started in 2010 in order to give patents a voice and help to increase visibility of our illness.  Here's their website, and more information about the organization. They're working on ads to help raise awareness of ME/CFS.

I've signed up to volunteer when the media is looking for someone to interview, and MCWPA has posted my profile on their Personal Accounts page.

If you are interested in either submitting a profile or being available for interviews, contact Tina at editor@claynews.net.

Hope you're doing well this week.