Groundbreaking New Research Model for ME/CFS

I've been really exhausted all week but also really busy, so today I am feeling pretty badly crashed...and both of my kids are home sick, too.  So, I don't have the time or energy for much blog writing today, but I wanted to share this great new announcement from the CFIDS Association of America (CAA).

They are starting a brand-new research initiative called "research institute without walls."  Basically, they are coordinating (and funding) ME/CFS research from top scientists and doctors, located at top research facilities, and making use of the CAA's Solve CFS BioBank.  The program is focused on finding effective treatment options for those with ME/CFS, a refreshingly practical and unusual approach in this field!  Each of the projects will delve into its own aspect of CFS (cognitive dysfunction, OI, exercise intolerance, etc.), but the researchers will also work together, coordinated by CAA's Scientific Director, Suzanne Vernon, and share information.  You can read all about the new approach and the individual studies approved so far at Reserach1st.

I think this is wonderful news for all of us patients!  The Wall Street Journal even covered this breakthrough on their Health Blog this morning.  Apparently, in addition to the usual sources of research funding (we contributed to this project!), Laura Hillendbrand is donating $250,000, bringing the total funding to $2 million.  How about that for some good news for a change?

P.S. Want to help?  Read about the Catalyst Fund which is helping to fund this research and contribute, if you are able to.  You can also help move this research along by participating in the SolveCFS BioBank.  I have applications for Jamie and I sitting here...I really need to find the time to get to these...

Happy Mardi Gras - Celebrate!

Happy Mardi Gras, everyone!  We used to live in New Orleans, so today is a favorite holiday of ours, though we like any excuse to celebrate!

I think that in any life - but especially when you are living with chronic illness - finding little reasons to celebrate can bring joy to otherwise monotonous days.  Sick or not, I was brought up with this attitude - that even small occasions are reasons to celebrate (thanks, Mom!), but it's become even more important since my sons and I got ME/CFS.  When you're spending every day lying on the couch, trapped in your house and too sick to do anything (as Jamie has been lately), a little celebration means a lot.

So, in that spirit, here are some ways you can join us in celebrating Mardi Gras today:

• Have some yummy New Orleans-style food for dinner tonight!  If you live in the U.S., a simple way to do this is to get some take-out from Popeye's (a fried chicken franchise that started in New Orleans) - that's what we'll be doing tonight, along with several friends who used to live in NOLA when we did.  Believe it or not, their red beans and rice is pretty authentic, and you can't beat their spicy fried chicken!
• If you or someone else in your household is up to a little cooking, you can try one of my New Orleans-inspired recipes.  They were just published in the February 2012 issue of Family Fun magazine - you can probably still find a copy wherever magazines are sold (the March issue will replace it any day now).  They didn't post the full article online, but the individual recipes are there.  Try: Red Beans & Rice (a very quick and easy but tasty version), Jambalaya (a favorite here but it takes a bit more work and makes a large amount), or Shrimp Etouffee.
• Enjoy a King Cake!  This traditional cake is eaten every day during Mardi Gras season (from January 6 until today, the day before Ash Wednesday) in Louisiana.  No matter where you live, there are probably some local bakeries who make King Cakes this time of year.  We've found several here in Delaware. If you have the energy for baking, you could try making your own.  Here's a King Cake recipe from Family Fun (this one isn't mine because we always buy ours, but I still wrote the intro).
• Dress in purple, green, and gold and throw on some plastic beads if you have them (we have a big carton of them from our time in New Orleans!).
• Check out the festivities from the comfort of your bed or couch at NOLA.com, which is featuring plenty of Mardi Gras photos and videos today.  You can even check out their live webcam and, if you're lucky, catch a parade (there's one on right now!).

Find some small way to celebrate and make today a special day!  Happy Mardi Gras!

Mental Energy and ME/CFS

I have been struggling to think of a good title for this post for days, even though I had only written it in my head (I write so much that way!). It's something I've been wanting to write about, but I still don't know what to call it, so I will just jump in.

I just spent three weeks in a severe crash, feeling worse on some days than I have in years.  I am now feeling much better and have resumed my own version of "normal," and I have been struck - not for the first time - by the stark difference in my mental state between a crash and a "good" day. I'm not talking about the emotional effects of severe illness, though those are very powerful as well.

No, what I've observed, yet again, is a startling difference in mental energy that is intrinsically related to immeasurable things like motivation, drive, and desire. When I am severely ill with physical symptoms that are hard to describe - exhaustion, lack of energy, that all-over flu-like achiness - there is also a mental sluggishness present, a lack of motivation that makes accomplishing anything at all (regardless of the physical symptoms) a monumental struggle.

Cognitive dysfunction has never been a big problem for me, not even at my worst times in the past 10 years of illness.  Most of the time, my only sign of cognitive problems is some mild aphasia (word-finding difficulty) which is annoying for someone who makes her living writing but doesn't seriously interfere with my life, thanks to Word's built-in thesaurus. When I am severely crashed, I do experience some slightly increased brain fog, but, again, nothing severe. I have always been grateful for this blessing.

But this lack of mental energy (isn't there some official term for this? I guess it might be malaise, but I really hate that word; certainly it's not the dreaded F word) is overwhelming when I am crashed. For instance, let's say that on a bad crash day (like I experienced last week), I have cut my to-do list down to just three essential tasks - calling a doctor's office to make an appointment for my son, filling out a form and faxing it to my son's school for a scholarship application, and writing an e-mail to my editor. The lack of motivation and drive is so all-encompassing that it could take me days just to accomplish those few simple tasks.

Yes, I am feeling exhausted and achy, but it's not those physical symptoms keeping me from doing anything. It's a total lack of mental energy.  This is something almost impossible to describe to healthy people (including doctors), unless perhaps they have recently experienced a bad flu. When I'm in that state, I dread each coming day, facing that lack of drive and motivation, trying to get something done when I feel like my head is encased in Jell-o.

In contrast, when I finally feel like myself again (still with CFS but not so badly crashed), I am stunned by the sudden feeling of mental clarity, by the desire and the simple will to accomplish something.  I wake feeling glad to be awake, looking forward to the day to come. I feel motivated and productive and happy. It is such a stark change to how I feel when I am crashed that I feel full of joy.

My poor son is filled with this feeling, this lack of mental energy, every single day lately and is trying to finish his senior year of high school encompassed by this mental lethargy.

I think this is probably the worst part of ME/CFS, though it's something that is rarely talked about, unnamed, and never examined by doctors or researchers.

Is it the same for you?

Movie Monday 2/13

Hello?  Anyone still out there?  Sorry for being so absent the past couple of weeks.  I was pretty badly crashed - probably the worst I've been in years - and my 17-year old son has been even worse.  By the end of last week, I was REALLY scared that my Lyme had come back (i.e. never left).  I was a bit better this weekend and much better today, so I am hoping things are OK for me now, though I'm not jumping to any conclusions until I've had a few good days in a row. 

Jamie is still in terrible shape.  We are adjusting his Lyme meds, and he started Immunovir today.  Meanwhile, in the midst of a terrible crash, I had to go to his school last week for a very stressful meeting to try to get him more accommodations (my husband was out of town all week). It is unfathomable to me why they can't just provide the services he needs when we ask and why everything has to turn into such a big negotiation. It's been such a rough month for him, and all these school problems only make it worse.

So, by the time the weekend arrived, we were all ready for a little cinematic escape:

• Friday night, Jamie, Ken, and I watched Avatar. WOW. All of the accolades it received were well-deserved. Our kids saw it in the theater in 3D when it first came out, but Ken and I have been dying to see it for ourselves. Yes, the special effects are amazing, but it is so much more than a cool sci fi flick. Everything about it was amazing - the concept, the plot, the acting, all of it. It is set in the future, at a time when humans have ruined earth and have discovered another planet, Pandora, with lots of much-needed natural resources. The catch is that this planet is already occupied by sentient humanoid beings, the blue Na'vi, not to mention a wealth of flora and fauna. Humans develop a way to interact with the Na'vi, by using specially selected humans whose DNA is used to create Na'vi avatars who are controlled by their corresponding humans. It is all so cool. The main conflict in the movie is between the scientists, who want to study the Na'vi and develop relationships so they can negotiate for the resources they need and a huge corporation using the military, who favor just taking what they want. Some of the human avatars become very close to the Na'vi, adding another layer of complexity. It is all so good, so well done, so engaging and unique, and with so much depth. I want to be a Na'vi! Definitely worth watching.
• Saturday, after we canceled a dinner party we'd planned, Jamie, Ken, and I (yes, Craig had plans again!) rented a Redbox DVD, Drive. We had trouble categorizing this one - it's a drama with lots of action though without the suspense of a thriller and with more emotional depth than the typical action flick. Ryan Gosling stars as a stunt driver in LA who makes extra money on the side as a driver-for-hire for various criminals who need a quick escape. The main character (we never did hear his name) is the silent type, so we don't learn much about him, except that he seems to be falling in love with his neighbor and adores her young son. Of course, there are some car chase scenes but not as many as I expected. It is a dark, somewhat depressing movie, though it is well done and interesting.
• Last night, Ken and I started a movie I requested from the library in tune with the season, Valentine's Day.  Before the opening credits finished rolling, we both realized we've seen it before!  Sure enough, I checked previous Movie Mondays and saw that we watched it just about a year ago (see review). But we enjoyed it the first time and neither of us remembers exactly how it ended, so we are watching it again (we haven't finished it yet - can't stay up late on a Sunday!).  An unexpected benefit of brain fog :)

Have you seen any good movies lately?

New York Times Updates XMRV Saga

I'm sure most of you have heard of all the crazy, scandalous goings-on related to XMRV research these past six months.  Frankly, I've avoided writing about it here.  I just don't have the energy to address politics, scandals, and controversy, unless there is some valuable information in there for patients.

But now the New York Times has published a summary of the whole XMRV saga, from that first paper published in Science through to the recent arrest and the new charges against the Whittemores.  So, you can read all about it there, in case you haven't been keeping up.  It's a brief and easy-to-understand summary of the main events.

The Lipken study is still in progress to ascertain whether XMRV is a factor in ME/CFS, so we will see what results that brings.

No Way Out But Through

I keep thinking I need to write a blog post but what about?  The news from here is rather boring - we've had a triple-crash week.  Jamie, Craig, and I have all been down this week.  It's very unusual for Craig to crash at all, and he missed three days of school this week.  He went back today - got up this morning and on the bus by sheer willpower - he really hates being home and missing school and gets bored very easily!!

Jamie and I have both been very achy.  The aches in my legs were so bad at bedtime last night that I was in tears.  When all three of are down at once, it is almost certainly due to some sort of viral trigger.  When I took Jamie for his saline IV last night, the doctor said it's been a bad winter for viruses so far.  He said the old wive's tale that more people get sick during a mild winter is actually true.  So, I guess we were all exposed to something that has caused our immune systems to go even more crazy than usual.  Hopefully, it will pass soon.

We are getting more and more worried about Jamie.  He's only been in school 1 day out of the past 3 weeks and is getting further and further behind.  It's hard to see him lying on the couch day after day and suffering so, especially during a time of his life when his peers are so active and having so much fun.

So, one is back up and two are still lying here.  I have been continuing to push myself ("must get things done," "have to do this," etc.) but am trying to be smarter now and rest. In fact, I should set aside the computer and read my book now.  Even after 10 years, it is sometimes hard to remember that there is no way out of a crash but through it - and I will only make things worse by continuing to push.  Rest, rest, rest...