Tuesday, August 23, 2016

TV Tuesday: Stranger Things

Over the past two weeks, since my last TV Tuesday post (and even with a vacation in the middle), my family tried, became obsessed with, and finished a new TV show that I have been dying to tell you about! You've probably already heard about it because everyone seems to be raving about it, so I will add my enthusiasm to the noise. My husband, son, and I thoroughly enjoyed every moment of season 1 of Stranger Things, a new Netflix show, and can't wait for the next season!

Before I get into the details of plot and character, you should know that one of the most enticing things about Stranger Things is that it takes the best, most beloved 80's movies, puts them in a blender, and spits out an original, compelling TV show. One of my favorite podcasts, Pop Culture Happy Hour, described it like "taking a Stephen King book starring kids and having Steven Spielberg produce the movie," and that is a pretty apt description (the link will take you directly to their Stranger Things episode, which I highly recommend). The three of us spotted references, similarities, and homages to ET, Close Encounters of the Third Kind, Stand by Me, and The Goonies, just for starters.

The set-up goes like this: it's 1983 in suburban Indiana, and four nerdy pre-pubescent best friends ride their bikes, sleep over at each other's houses, and obsessively play Dungeons & Dragons in one boy's basement for hours. Mike is the boy with the afore-mentioned basement rec room (complete with shag carpeting), Lucas is his best friend who lives next door as part of the only black family in town, Dustin is an adorable chubby-cheeked boy with a medical condition that means he is still missing baby teeth (for which he gets teased relentlessly by the bullies at school), and Will completes the foursome. In the first episode, Will goes missing while riding his bike home one night.

Will's mother, played by Winona Rider (another wink to the 80's), is frantic. She is raising Will and his teen brother, Jonathan, on her own. Police Chief Jim Hopper, played by David Harbour, is an old friend and immediately begins a search for Will, but the boys set off on their own investigation. Meanwhile, a mysterious girl of about the same age, with a shaved head and wearing a hospital gown, shows up suddenly in a local diner after dark, having escaped from a super-creepy secret government facility in town (under the guise of the Department of Energy). The girl, known as El, doesn't talk much, but the boys find her in the woods and keep her safe.

That is all in the first episode, and I won't say more because this is a show that relies on unfolding secrets and mysteries. Some very strange things are going on in this town, and they are going to get worse before they get better. There are three main plotlines: the adults looking for Will, the kids doing their own investigation and search, and eventually, Jonathan and Mike's teen sister also getting involved (plus flashbacks to what is going on at the secret facility). Over the course of 8 episodes, some questions are answered and some mysteries solved, but others remain unclear, paving the way for a suspenseful second season.

Have I mentioned that we all LOVE this show? It is just so addictingly good in so many ways. The tone and feel will remind you of your favorite 80's movies, even though the plot is unique. The kids are all great actors, especially the mysterious El, played by Millie Bobby Brown. Winona Rider and David Harbour are excellent in the main adult roles. The music, pop culture references, and settings all lovingly recreate the 80's. Too young to remember the 80's movies I mentioned? You'll still love this show. Fortunately, we gave our son a solid education in the "modern classics" of the 80's! And if you've enjoyed any of Stephen King's novels that feature kids (his best writing, in my opinion), like IT or The Body (the novella on which the movie Stand By Me was based - not horror), then you will also feel right at home.

Stranger Things takes the best of the movies and stories of the 80's and recreates them for a modern audience, with a nice sense of nostalgia. It's a very suspenseful, action-packed mystery/sci fi combination that will have you saying at the end of each episode (like we did), "We have to watch the next one!"

Stranger Things is a Netflix Original program, so it is available only on the streaming service.

Saturday, August 20, 2016

Camping & Enjoying the Outdoors with ME/CFS

Beautiful Sylvan Lake in Custer State Park, SD
Sorry I have been absent from the blog - we just returned from a short vacation to one of our favorite places, the Black Hills region of South Dakota. It is absolutely beautiful there! Plus, we have lots of family in the area, so it was good to see everyone. It was exhausting for me, as you'd expect, and my son had one really bad day while there. However, we do love to travel and managed the trip well overall. This one was tough for us because it involved two very long days of air travel (12 full hours on the way out!) and a sort-of hotel stay (in a cabin but like a hotel room). We both manage better on road trips, when we can bring our camper with us.

Being outdoors is so important to me! I've written here before about the joy I get from the outdoors, how it conveys a sense of peace and tranquility. When I mention a camping trip, I often hear from other people with chronic illness, "You're so lucky!" But it's really not luck that allows me to still enjoy the outdoors: it's a combination of relentlessly trying new treatments for small improvements and of changing the way that we camp, travel, and get outdoors. I've been meaning to share some of our tips for camping and spending time outdoors, so this seems like a good time - these tips apply well to regular travel, too.

First, Improve Your Condition As Much As Possible
Before getting into specific travel tips, I have to mention treatments for ME/CFS. Too many people are told (by doctors!) that there are no treatments for ME/CFS and they just have to live with it, but that's just not true. There are many effective ways to treat ME/CFS, and I summarized those that have worked well for my son and I in that link. There are no outright cures (yet), but by trying different treatments, you can greatly improve your quality of life and ability to function, little by little. For instance, since starting beta blockers for Orthostatic Intolerance (an integral part of ME/CFS), I can now take walks (up to an hour!) without crashing afterward, which allows me to enjoy a bit of careful hiking.
Our Pop-Up Camper - Home Away From Home
Bring Your Home With You
If at all possible, find, borrow, rent, or buy some sort of camper for your outdoor adventures. In this way, you take your home with you (at least a mini version of your home). I do so much better staying in our own little camper than in a hotel! And I could never manage sleeping on the ground in a tent anymore. We just have a pop-up camper that is easy to tow, and we have taken it all across the U.S. I sleep just as well in the camper as I do at home (with my treatments for correcting sleep dysfunction that I take every night), we cook many of our meals ourselves so it is easy to stick to my diet (and far less expensive!), and it feels like our own little home-away-from-home. We also bring folding lounge chairs for my older son and I so that we can lie down and have our feet up. Folding bungee chairs work really well, too.

Stick To Your Routines As Much As Possible
I learned early on that I must stick to my daily routines if I want to function as well as possible. Yes, sometimes it stinks having to live life like a toddler, but staying within my limits helps so much! For me, those routines include getting to sleep by 10:30 pm every night, sleeping at least 9-10 hours at night, and taking a nap after lunch every day. My nap is sacred, and I never skip it! Without it, I would be useless by 4pm. In the car or on a plane, I bring pillow, light blanket, ear plugs, eyemask, and Valerian (a mild herbal sedative similar to chamomile that wears off quickly). In the car, I just lean my seat back or lie in the backseat at naptime. It's tougher on a plane (much tougher!), but I do my best, with a couple of small travel pillows and all the rest of the accessories I mentioned. LOTS of water, salt, and healthy snacks are also essential on a travel day. Camping or vacations with extended family are very tough for me, but I still stick to my own routines because I know I will crash otherwise.

With beta blockers, I can enjoy a slow paddle in the kayak.
Focus Your Energy On Fun
I find that I naturally feel better when we are camping, simply because I am away from my normal responsibilities and obligations - no internet, no computer, no to-do lists, no laundry or other household chores. With all of those daily must-dos removed from the equation, I find that I have more energy to devote to enjoying the outdoors, with a short hike or kayaking (I discovered that kayaking doesn't raise my heart rate much!). I wear a heart rate monitor during these times, to allow me to be active while staying within my limits. This does mean that I often have to stop and sit on a rock or crouch down to wait for my heart rate to slow down on a hike, but I am OK with that (and my family is very patient!).

Because of my limits and need for an afternoon nap, our typical routine when camping or vacationing is an easy activity in the morning, right after breakfast, and then back to the camper (or as in this week, cabin) for lunch and my nap. My older son usually rests when I do, and my husband and younger son can take another hike or do something else (though my husband has been known to enjoy a nap, too!).

Sometimes when we are just camping locally and feeling rundown, there are no active periods - we just rest, take it easy, and enjoy the outdoors surrounding us (and our books, too!).

Our son on a "down day," enjoying his book while resting on a camping trip.
Change Your Expectations
Especially if you are new to a life of chronic illness, you may need to adjust your expectations of what camping or vacationing means. Some people go on trips and cram everything they can into every moment, so as not to miss anything. We know we just can't do that. So, we choose the things we most want to do and schedule them for our best times (mornings for me).

Another adjustment that is needed is to stay flexible and change your plans based on how you feel. Monday this week, our son woke up feeling awful, with his Lyme symptoms badly flared up. I was OK but somewhat worn out from the long air travel day. So, over breakfast, we postponed our plans to go to our favorite hiking spots and instead planned a less active day. We drove our rental car through Custer State Park (an amazing place that rivals the National Parks!) along its Wildlife Loop, with a stop for lunch at one of our favorite lodges. So, instead of hiking that day, we drove through the park spotting herds of bison, wild burros, pronghorn antelope, deer, and prairie dogs - still a very enjoyable day but much more low-key. And the next day, we both felt better and were able to manage visiting our favorite hiking spots.

Relaxing by the campfire with my feet up (and a book!)
Relax and Enjoy
We enjoy our downtime, too. That's a big part of enjoying camping and travel with chronic illness - embracing the slower pace and learning to enjoy it. We always slow down for the afternoon while I nap, but that is just a normal part of our routine now. My older son, husband, and I all love to read, so downtime while camping or vacationing for us means books! We also enjoy having a campfire at night, a quiet, relaxing way to end the evening (which is low energy time for me).

Your limits and routines are probably different than ours. Perhaps you can't manage mornings and have to sleep past noon or maybe you use a wheelchair to get around. The same advice still holds - create your own camping & travel routines to meet your own needs. Every campground in the U.S. has handicapped-accessible campsites, and every public park has at least one handicapped accessible trail.

I have been sick for 14 years, my older son for 12 years, and our younger son was sick with milder ME/CFS for 10 years before he recovered. Through all of that, we have never skipped our annual family vacation or stopped enjoying camping. With some simple adjustments and changes, you too can still enjoy camping, travel, and the outdoors, even with ME/CFS.

IMPORTANT P.S. As much as I love the outdoors, I now have a healthy fear of ticks! I have had Lyme disease twice and our older son has 3 different tick infections that he's been battling for almost 10 years now.  You MUST take precautions when outdoors to prevent tick bites - there are infected ticks carrying Lyme disease and other serious infections in every state of the U.S. and on every continent except Antarctica. So what do you do? When the weather permits, you can wear light-colored long-sleeved shirts tucked into long pants tucked into socks. Check yourself for ticks frequently and definitely before bed each night. And always wear insect repellent that works against ticks. Most natural repellents either do NOT work against ticks or wear off too quickly, so DEET or picaridin is usually necessary. We wear bug spray with low concentrations of DEET and wash it off at the end of the day (you need to re-apply if you are outside for long - read the label).  Here is a Consumer Reports article on best insect repellents they tested. They've revised the article to focus on mosquitoes and Zika virus, but they still address ticks and Lyme disease, too (though the incidence maps are NOT accurate - the infections are much more wide-spread). As you can see in the article, there is only one natural product that they found effective. Believe me from hard experience, a little prevention can avoid a lot of pain and suffering!

Tuesday, August 09, 2016

TV Tuesday: What We're Watching This Summer

A lot of our summer TV shows have been wrapping up, so I thought it might be fun to talk about what we've enjoyed watching this summer. Plus, we are in need to some new shows to check out, so recommendations are welcome!

Here's some of what we've been watching this summer, with links to my past reviews (all reviews include trailer video clips):

Watching With My Husband and 22-year old Son:

Wayward Pines
This super-creepy sci fi show is filled with twists and turns and is a favorite among all three of us. We just watched the season 2 finale - which was once again an ending that made us think, "what the heck is going to happen next season?" I guess that's the point. 

Technically, not a summer show - I think it aired last winter - but we have been catching up on it On Demand this summer.  It's a post-apocalyptic story set in L.A. after aliens have taken over, starring one of our favorite actors, Josh Holloway (who played Sawyer on Lost). We just finished the season finale and can't wait for season 2 next winter!

Mr. Robot
The three of us watched season 1 together last summer and have been eagerly awaiting season 2. It's a bit confusing so far (we're on episode 4), but when isn't this show a little confusing? There's always a lot going on in this totally unique show about a group of hackers intent on bringing down big corporations. It's got a completely unique tone, feel, and approach.

Watching with My Husband:

The Last Ship
One of our favorite shows! We both love this post-apocalyptic naval drama starring Eric Dane (aka McSteamy from Grey's Anatomy). Now in its third season, it just gets better and better. I think (I hope) there are still a couple of episodes left before the finale, but we must be getting close to the end of the season.

We are currently watching season 2 of this intriguing show starring David Duchovny as a homicide detective in 1960's L.A. who crosses paths with Charles Manson. So good! It seems to be on hiatus because of the Olympics but should be coming back afterward.

Orange is the New Black
We are both SO HOOKED on this amazing show! It's an incredible ensemble cast set in a women's prison in upstate New York, based on a true-life memoir of a pampered, white, wealthy young woman who spent a year in prison. It's filled with emotional drama but is also often really, really funny. We just finished season 4, which was even better, and are in mourning until a new season comes out. This season started with a lot of laughs and ended with sobbing tears (mine) and a huge cliffhanger.

The Wire
With many of our summer shows wrapping up, we went back to an old favorite, The Wire, which we have been watching on Amazon Prime. This show about the drug trade, projects, and police of Baltimore is just SO good! Every season is different, and they just get better and better. We are currently watching season 4 (only one episode left!), and this one focuses on the children in West Baltimore and a new mayor who wants to change things. It is an incredibly good show with an amazing ensemble cast and a new angle every season.

With some of our favorites wrapping up, we were looking for something new and stumbled onto a new favorite from the creators of The Good Wife. This is the strangest show you will ever see...but also one of the best! Believe it or not, it combines political satire with a sci fi alien plot. It is totally addictive, and we can't wait for each new episode!

I also watch some shows on my own at lunchtime, like my current obsession, Feed the Beast on AMC starring David Schwimmer...but alone-time is rare this summer!

What have YOU been watching this summer? What should we watch next with all of our summer shows wrapping up?


Monday, August 08, 2016

Movie Monday: Star Trek Beyond

We actually went to the theater two weeks ago. That used to be an extremely rare occasion - maybe once a year - but we have been trying to get out a bit more. Cinemark theaters nationwide have Discount Tuesdays, where all movies (except 3D) all day are just $5.25 (which seems a whole lot more reasonable to me), so we try to take advantage of that. Two weeks ago, my husband and I went to see Star Trek Beyond and absolutely loved it!

Star Trek Beyond picks up where Star Trek Into Darkness left off, as the third in the prequel Star Trek movies featuring young versions of crew on the original Star Trek TV series. The Enterprise is in the third year of its 5-year exploration mission when it stops at a huge space station called Starbase Yorktown for resupply and shore leave. What the rest of the crew doesn't know is that Captain Kirk, played by Chris Pine, is thinking of giving up command of the Enterprise and has applied for the job of Vice Admiral of Yorktown. He has recommended Spock, played by Zachary Quinto, for the captain's job, and is trying to figure out how to tell him. Meanwhile, Kirk doesn't realize that Spock is also thinking of leaving the Enterprise, after getting the upsetting news that Ambassador Spock (who, I believe, is him in the future, right?) has died. He is also trying to figure out how to tell Kirk of his decision.

While on leave, though, an emergency comes up, and the Enterprise is called upon to cut its leave short to respond. A female named Kalara has come to the Starbase on an escape pod and says that her ship and shipmates are stranded on a nearby planet called Altamid. After a harrowing journey through an asteroid field, the Enterprise arrives on the planet to investigate, with Kalara along. As you might expect, things don't go quite as planned, and there are plenty of surprises awaiting the Enterprise crew on this strange planet.

My husband and I both really enjoyed this movie. Of course, it is filled with sci fi action, adventure, and thrills, but it also has plenty of humor and emotional drama in it, too. That's kind of Star Trek's modus operandi, right? We both thought that these younger actors did a fabulous job of capturing the essence of the characters from the original show, even more so than in the first two prequels. In fact, that's where some of the humor comes from, if you watched the original, in hearing those quintessential Star Trek lines, like Bones saying, "Damn it, Kirk, that will never work!" or Scotty calling, "I'm givin' it all she's got, Captain!" They all really hit those familiar characters perfectly.

In fact, the way my husband described the movie as we were walking out was, "It was like one of the best episodes of the original TV show, only movie-length." I see that Richard Roper said almost the exact same thing in his review! Both my husband and Roper meant it as the highest compliment. I wasn't quite as big a fan of the original series as my husband, though I watched it often enough with my family on Friday nights (in repeats by then). The two of us together watched - and loved - Star Trek Next Generation in the 80's and 90's. So, this was right up our alley.

For those who are not as "into" Star Trek, there is still a lot to like in this movie - it's an action-packed sci fi adventure with a great sense of humor (I really don't like action movies without humor!). But for those fans like us who have watched it for decades, it is an especially fun ride, filled with little nods and winks to the original while also adding a whole new intriguing story to the canon. Note that this was the last Star Trek movie for Anton Yelchin, who played Chekov, since he recently died in a car crash; the film was dedicated to his memory.

Star Trek Beyond is currently in theaters, with its DVD scheduled for release in November 2016 (probably to coincide with its availability on streaming services). This is a great one to see on the big screen, if you can manage it.

Tuesday, August 02, 2016

TV Tuesday: Feed the Beast

I recently finished watching season 3 of The Fosters (one of my faves) and season 2 of The Mysteries of Laura, so I was at loose ends for a show to watch on my own, on the rare occasions I am alone! I ran through my list of shows to try (ever-growing) and remembered Feed the Beast, starring David Schwimmer, which started in June. I've watched four episodes now and am enjoying it.

Schwimmer, of Friends Fame, plays Tommy Moran, father of an adorable 10-year old boy named T.J. Tommy's wife and T.J.'s mother died recently in a car crash, and both father and son are suffering. Tommy is clearly depressed and drinking too much, and T.J. hasn't spoken since his mother's death. Meanwhile, Tommy's old friend, Dion (played by Jim Sturgess), gets let out of prison early. Before he's even released (while changing his clothes), Dion has already done coke and had sex with his lawyer, so you know this guy is bad news.

Tommy, his wife, Rie, and Dion had planned to open their own restaurant in the Bronx. Dion is an excellent chef who cooked for the guards in prison (they hated to see him leave), and Tommy is world-class sommelier (wine expert). Rie had drawn up designs for their restaurant, but with her death, Tommy gave up on his dream. He and T.J. are living in the old warehouse they had planned to restore for the restaurant. Dion finds Tommy when he gets out of prison and immediately begins to convince him to resurrect their dreams.

What Tommy doesn't know is that Dion owes a mobster $600,000 and is being threatened to pay or else. The mobster, Patrick Wolchek (played by Michael Gladis, a familiar face from Mad Men), also threatens to hurt Tommy and T.J. if Dion doesn't pay up. So, although Dion does want to bring their dreams to life and open his own restaurant, he doesn't tell Tommy that the need to earn a lot of money quickly is life-threateningly urgent. Desperate for start-up capital, Dion convinces Tommy to ask his estranged father, played by John Doman from The Wire, to invest in their restaurant. That raises a whole new set pf problems, since Tommy's father is a horrible bigot, and T.J. is multi-racial.

So, you can see, right from the first episodes, that there is a lot going on in the show. There is also grief counseling for Tommy, a possible future romantic interest, bullying at school for T.J., and Dion's drug problem. It's a complex, intricate web of challenges and secrets. I had never seen David Schwimmer do anything but comedy before, but this is a serious drama, tackling issues of death, being a single parent, starting a new business, family....and yeah, and the Mob.

I'm enjoying the show so far and am interested to see where it goes. The main characters are in peril right from episode 1 (whether they all know it or not), so there is some suspense in addition to drama. You know that Dion's lies and secrets will eventually get the main characters in serious trouble, but you are still rooting for things to work out, especially where Tommy and T.J. are concerned. I also love delicious food and cooking, so I'm finding that aspect interesting as well, as they plan their restaurant.

Feed the Beast is an AMC show still currently airing its first season - tonight is the season finale. All episodes are available On Demand (until 10/1/2016) and free on the AMC website. It is also available on Amazon Prime for $1.99 an episode or $17.99 for the season (link below).

Friday, July 29, 2016

New Study: Gut Bacteria Provides Clues to ME/CFS

The Hype
By now, you have probably heard something about the recent study out of Cornell that was published a month ago which looked at gut bacteria and inflammatory markers in the stool and blood of ME/CFS patients compared to healthy controls. This study was even covered in many mainstream media outlets. I had about five different healthy friends all forward me articles about it! So, why did it take me so long to write about it here?

Well, in short, I was annoyed by the headlines and press accompanying this study. While any mainstream media coverage of real scientific studies of our illness is great, and I am thrilled that my friends thought of me, it was yet another ME/CFS study that was publicized with all the sensationalism of tabloid news. This headline from Science Daily's article on the study was typical:

Chronic Fatigue Syndrome is in Your Gut, Not in Your Head

I can't fault Science Daily because that headline came directly from Cornell's press release. Seriously? Are we still in the "Breaking News: CFS is not all in your head" phase of press coverage?? Come on, people. We've had decades of serious scientific studies showing loads of abnormalities and dysfunction in the immune systems, endocrine systems, and autonomic nervous systems of people with ME/CFS. Why are even academic PR people still acting like its news that ME/CFS has real physiological causes?

The rest of the article and press release were just as bad. The very first paragraph (again, copied directly from Cornell's press release) is: "Physicians have been mystified by CFS...There are no known triggers..."

No known triggers?? Where have these researchers been for the past 30 years? Lots and lots of studies have identified infectious triggers for ME/CFS, and it is well known that most cases of it start that way - there have been studies on mono (Epstein-Barr Virus), Parvovirus B-19, Ross River Virus, and more. The famous Dubbo study first documented this connection, and ME/CFS is even sometimes referred to as Post-Viral Syndrome. In fact, there have even been studies previously on a common gut virus and ME/CFS, identifying enteroviruses (frequent causes of stomach viruses) as a trigger or cause for ME/CFS. The references for that article list many of the other infectious trigger studies previously conducted.

Shouldn't researchers be conducting a thorough literature study of previous studies related to their work before they embark on a new study? Shouldn't research facilities' PR people know what came before their study? Sorry for ranting, but this really makes me angry. If every researcher treats his or her new study like it's the first legitimate study ever done on ME/CFS, then we will never make any progress. OK, rant over.

The Real News
The actual study is interesting and does add to the body of knowledge on ME/CFS, once you strip away the National Inquirer-type headlines. They studied stool and blood samples of about 40 of Dr. Levine's ME/CFS patients and compared the results with about 40 healthy controls. The differences were enough that the researchers could correctly identify 83% of the ME/CFS patients - that's getting close to a usable, non-invasive diagnostic tool. They found there were more markers of inflammation in the blood (no surprise there) and fewer anti-inflammatory bacterial species in the gut of the ME/CFS patients (guess we better keep up those probiotics!). None of this is surprising, since most of us have GI symptoms as a part of ME/CFS, and it is said that about 80% of the immune system is in the GI tract. What's interesting here are the specifics of their work and its potential use in diagnosing ME/CFS - we all know how badly we need some diagnostic tools. You can see the full scientific article here and if you scroll past the early paragraphs of Cornell's press release, the second half of it provides a brief (and understandable) summary of the findings.

So, this is all good news for those of us with ME/CFS. I just wish we could get past the sensationalist headlines and that researchers would look at the whole body of research that's been done instead of just their own study.

Had you heard about this study yet? What was your reaction?

Wednesday, July 27, 2016

New Article on ProHealth about Chronic Illness & Summer

My latest article on the ProHealth website has been published: Summertime...and the Livin' Is Easy (Or Is It?) - read the full article at the link.

My article is about the unique challenges that this easy-living season can bring for those of us with chronic illness...and also the pleasures of summer that we can still indulge in.

What's the most difficult part of summer for you? And what do you enjoy about this season?

Tuesday, July 26, 2016

TV Tuesday: Aquarius

My husband and I started watching NBC's show Aquarius last year when it first came out and were hooked. This summer, we have been enjoying season 2, as well. Aquarius is set in 1960's L.A. during the time when Charles Manson was becoming popular and growing his following.

David Duchovny (of X-Files and Californication fame) stars as Detective Sam Hodiak, an L.A. homicide detective who is old-school and plays loose with the rules. One of his co-workers is Brian Shafe, played by Grey Damon, a long-haired cop of the younger generation who is working undercover on a drug case. Claire Holt plays Charmaine Tully, the first female police officer in the precinct, a pretty, young, blonde woman whom no one takes seriously. Hodiak, despite his gruff exterior, sees the potential in both of the young officers, though.

Meanwhile, a 16-year old girl named Emma, played by Emma Dumont, runs away from home and from her parents' constant fighting. She meets a group of other girls her age who bring her to their home. It's basically a hippie commune overseen by a charismatic guy named Charlie Manson. Charlie takes an instant liking to Emma and nicknames her Cherry, and she joins their happy family.

Emma's mother is an old friend (and former girlfriend) of Sam Hodiak's, so she goes to Sam for help in finding their daughter. Her husband has political aspirations, so she wants to keep things out of the news but hopes that Sam will agree to look for their daughter. And that's how Hodiak and Manson first cross paths. Soon Shafe - and later, Charmaine - are going undercover with Manson's group, and trying to find out exactly what is going on at his house. Of course, no one knows at this point just how dangerous Charlie will turn out to be, but they are looking into the drugs and all the runaways he attracts.

The show alternates back and forth between the police officers' work and personal life and what is happening at the Manson house. It's a slow boil. Hodiak is assigned all sorts of cases to work, while he's keeping an eye on Charlie on the side. Manson's followers are growing in number. All of this is set against a perfect 1960's backdrop of fashions, hairstyles, cars, and the civic unrest building in the community over the Vietnam War and race issues.

We have really been enjoying this show, now in the middle of its second season. It's a police drama, in part, but based on a well-known, mystical historical figure at its center. It pulls much of its material from actual history, with the rise of the Blank Panthers, the assassination of Bobby Kennedy, the growing threat of race riots, and of course, Manson's slow but steady growth and descent into madness. In addition, the main characters' personal lives come into the story, as well. It's an engrossing, fascinating story with excellent writing and acting. Duchovny is especially good in the lead role, as is Gethin Anthony as the scarily charismatic but crazy Manson.

The show is currently in the middle of its second season. Both seasons are available on Amazon Prime for $1.99 an episode or $21.99 a season. The first season is available on Netflix for subscribers. Cable On Demand and the NBC website currently have episodes 4 through 7 of the second season (on ours, episode 4 will be coming off on 7/28). It looks like the second half of season 2 will be starting up on July 28.

Tuesday, July 19, 2016

TV Tuesday: BrainDead

Without a lot of shows to watch during the summer, my husband and I decided to try something new last week. I'd been seeing ads for BrainDead. Frankly, I thought it looked really weird, but it's from the creators of The Good Wife (one of our recently departed favorites!), so we thought we'd give it a try. What followed was one of the oddest hours of television we've ever watched! As strange as it is, though, it is also really, really good - we're hooked!

OK, so try crossing the political drama and satire of House of Cards with the sci fi plot of Invasion of the Body Snatchers, and add in a hefty dose of humor. Got it? No, probably not. This is one show you definitely have to see to understand. Basically, it posits that the reason politicians seem so crazy these days is that a bunch of them have had aliens eat their brains. It makes as much sense as anything else, doesn't it?

Laurel Healy, a young woman who grew up in Washington, DC, reluctantly returns to her hometown to earn some money so that she can return to her real passion: making documentaries about obscure types of music in isolated places. Laurel is not all that happy to be back and really hates politics. The rest of her family, though, are DC-insiders. Her father, Dean, played by Zach Grenier (The Good Wife's David Lee), has worked in politics all his life and agrees to give Laurel the money she needs to finish her current documentary if she will work in her brother's office for 6 months. Her brother, Luke Healy, played by Danny Pino, is a Democratic Senator.

Right from Laurel's first day as Constituent Coordinator, it is as she feared: politics as usual, with back-room deals, extremist views, and power-hungry members of Congress (including her brother). To make matters worse, Congress can't agree on a budget and is about to shut-down the government. To try to avoid that and keep thousands of people in DC working, Laurel agrees to meet with Gareth Ritter, played by Adam Tveit from Graceland, a staffer for Republican Senator Red Wheatus (played hilariously by Tony Shalhoub), who is on the opposite side of the budget crisis.

Meanwhile, something very strange is going on in DC. Some aliens that look like ants have escaped from a meteor that was delivered to the Smithsonian. They crawl into people's heads through their ears and either eat up (and spit out) a good portion of their brains or their brains explode. Really. And to top it all off, Laurel keeps hearing "You Might Think" by The Cars playing.

Yes, it's just as weird as it sounds! But somehow, despite the complete goofiness of the concept, it works. The acting is excellent: Mary Elizabeth Winstead does a great job as smart, good-hearted Laurel, and the rest of the cast is great, too. The writing is top-notch; you can tell it shares a pedigree with The Good Wife. It manages to be a political satire, a sci fi mystery, and a comedy all at once. Oh, and there is even some romance in it, as Laurel and Gareth are clearly attracted to each other but on opposite sides of the aisle. We have now watched three episodes, and it just gets better and better. You have to at least try 2 episodes, minimum, so you can hear the hilarious little "previously on" song they sing at the beginning of the show!

I know it sounds incredibly strange, but you have to trust me on this one. Give it a try - it is oddly compelling and very funny.

BrainDead is currently airing on CBS Mondays at 10 pm and all three of the current episodes are available On Demand (I think episode #1 comes off Demand on 7/24, so hurry up!). All episodes are also available for free on Amazon Prime or for $1.99 an episode for non-Prime members (link below). They are also available on CBS All Access, if you are a member (since when do the networks require membership to watch their shows?).

Monday, July 18, 2016

Movie Monday: Room

I absolutely loved the novel Room by Emma Donoghue when I read it in 2011 (my review at the link). It lived up to all its hype - and more - and kept me captivated. My husband read it and loved it, too. When the movie came out last year, I was dying to see it and hoped to go with some book group friends, but I didn't get a chance while it was in the theater. I finally had my chance last week when my husband and I found it free on Amazon Prime. It was wonderful and loved up to the promise of the book.

The movie follows the book's story quite closely (Emma Donoghue also wrote the screenplay). A young woman, played fabulously by Brie Larson, has been held captive in an 11-foot by 11-foot room for 7 years. During that time, she gave birth to a boy named Jack, played remarkably by young Jacob Tremblay. Ma, as Jack calls her, has done a great job of bringing Jack up under these horrific conditions. Jack was born in the room and has never left it, so he doesn't realize there is anything else. He's happy and healthy, full of fun and very smart. Ma has kept up a nice routine for the two of them, with time for learning, exercise, and play.

As the movie opens, it is Jack's 5th birthday. He is full of questions, bright and curious, and he and Ma enjoy a small celebration. Their captor, known only as Old Nick, comes to visit during the night. Ma has put Jack to bed inside a large wardrobe, as usual, so that he won't know what's going on. Jack is getting older, though. He asks more questions, watches through a crack in the wardrobe, and one night, Old Nick sees him (Ma is usually careful to keep him out of sight). Ma begins to realize that Jack is growing up, and this room is no longer enough. Thus begins a dangerous period of trying to plan an escape from a place she previously thought was inescapable.

Just like the book, the movie is tense and filled with suspense, but it is also warm and tender. Because the story is shown from Jack's perspective, his innocence pervades the tone, keeping it from being too dark or disturbing (though, of course, the situation is still disturbing). It's a completely unique story, filled with hope and love, about healing and moving forward. We both loved it and thought it was an excellent adaptation of the book.

NOTE: If you have not yet read the book and want to, then skip the movie trailer for now - it gives away pretty much the whole story. I've been careful to avoid spoilers in my review here and in my book review.

Room is currently available for free on Amazon Prime (or available to rent for $4.99 if you don't have a Prime membership) or on DVD.

Sunday, July 17, 2016

Weekly Inspiration: 7/17 Are You a Soldier or a Scout?

I haven't had time to watch any TED talks lately (nor much blogging time!), so this morning, with most of the household still asleep, I sought out an interesting one and listened with my earbuds.

I was intrigued by the title of Julia Galef's recent talk, "Why You Think You're Right - Even if You're Wrong." Let's just say I've been accused before of always thinking I am right! Since my husband has the same tendency, it can cause a bit of friction at times, if we are on opposite sides of an issue (for the record, we agree on most of the big stuff, but this tendency can cause arguments about all kinds of trivial things!).

The talk was very interesting - in ways I didn't expect. Galef explains how research has shown that people generally have one of two mindsets: the soldier, certain of his viewpoint & defensive of anything different, and the scout, curious and always interested in new information & learning new things. She weaves in an interesting story from French history to illustrate the two mindsets.

She explains it all far better (and more engagingly) than I can, in just 11 minutes:

What really interested me is how this simple idea applies to so much in our world. Yes, it is very applicable to one-on-one relationships, which is what I was thinking about when I clicked on it. But, as I listened, I couldn't help but think how strongly this concept explains the deep divisions going on in our world today politically - the increasingly nasty upcoming presidential election in the U.S. and the recent Brexit vote in the U.K. are two huge examples.

I also think this concept applies to our lives with chronic illness. First, our illnesses already provide a barrier between us and our loved ones. I still - after 14 years - have many family members who feel uncomfortable with the reality of my illness. With that kind of conflict already in place, the last thing I need is more tension in my personal relationships. This idea of trying to have a Scout mindset and be open-minded can certainly help to improve our personal relationships - and less stress equals feeling better.

Second, for some people, this Soldier mindset might even get in the way of living their best life with chronic illness. As I said, I am something of a Soldier myself at times, but in my case, I think that has helped me with my illness because my mindset is that I can improve, things will get better, and there are treatments out there to help me. This single-minded determination has helped me to not give up when things get rough (as they do), and the Scout in me has pushed me to constantly seek new information and remain open-minded. However, if your Solider beliefs are more negative - I will never improve, things will never get better, I am trapped in this life - than those could certainly have a negative impact on your well-being.

In any case, this is a fascinating talk and has inspired me this Sunday morning to try to be more of a Scout in my personal relationships.

How about you? Are you a Scout or a Soldier or a little of each?

Tuesday, July 12, 2016

TV Tuesday: The Last Ship

Summer is kind of a low season for TV - especially this year with Graceland cancelled (one of my favorites) - but there is one summer show that we love. The Last Ship just came back for its third season, and it just gets better and better, with an intriguing & unique story, high drama, and a great cast.

The Last Ship begins with a viral pandemic outbreak. The show follows the crew of a Naval Destroyer called the Nathan James, which was on a top-secret research mission in the Arctic when the pandemic hit. In fact, their mission, unbeknownst to them, involved the virus that caused the pandemic. On board their ship is Rachel Scott, a world-famous virologist who needed to go to the Arctic to look for a primordial version of the virus in order to create an effective vaccine. By the time that mission is complete, the whole world has gotten sick, and chaos has broken out.

Rachel finally tells the captain, Commander Tom Chandler, played wonderfully by Eric Dane (who could have guessed that McSteamy from Grey's Anatomy would make such a good military man?), what's going on, both with their mission and with the rest of the world. By now, millions of people have died, including the U.S. President and Vice-President, and Rachel's goal to create a vaccine has become even more important. Having been completely isolated in the Arctic, the crew of the Nathan James is healthy and not at risk as long as they stay out at sea. So, now they are a floating crew of survivors, tasked with nothing less than saving the world.

It's not as simple as Rachel just doing her work to create the vaccine, though, because chaos and anarchy are in full force all over the world. There are evil forces that want to capture Rachel and the vaccine for themselves and keep it from the rest of the world. Most of that happens in the first episode or two! From then on, it is a fight to survive...and to save the world.

My husband and I both love this show. It is an intriguing plot, with lots of twists and turns and plenty of action and suspense. The cast is incredible, and you quickly grow to care about them. The second-in-command, XO Mike Slattery, is played by Adam Baldwin. Plus, there is a full crew of excellent actors. This is truly an ensemble show, though I haven't had any trouble keeping track of the characters. The overall quality of the show is excellent, from the very first episode through the current third season, in which the world has changed dramatically, but the Nathan James is still of central importance. We can't wait to see what happens next!

Seasons 1 and 2 of The Last Ship are available on Hulu (with subscription), through Netflix DVD service (not but streaming), and on Amazon Prime for $1.99 an episode or $14.99 a season. Our Cable on Demand currently has the last 5 episodes of season 2 and all episodes so far (5) of season 3, as does the TNT website.

Monday, July 11, 2016

Movie Monday: Twinsters

Two weeks ago, ALONE in the house for an unheard-of four days, I was choosing a movie to watch. I decided to choose a documentary because it's been a long time since I'd watched one. I found Twinsters on Netflix and thoroughly enjoyed this fateful, mind-bending true story.

Samantha Futerman, a 25-year old actress living in L.A., had had a few significant TV and movie roles and had a growing following for her YouTube videos. In 2013, across the world in France, some young people were enjoying one of Samantha's videos when they noticed that she looked exactly like their friend, Anais Bordier. They watched more of the videos and showed them to Anais; the whole group was astounded by how much the two young women looked alike. Anais did some online searching and discovered that she shared a birthday with Samantha - November 19, 1987 - and that, like her, Samantha was adopted as a baby from South Korea.

Anais reached out to Samantha online - tentatively at first - and the two women began getting to know each other via video chats. The similarities between them were startling, even though Samantha had grown up in America and Anais in France. They contacted an agency that helps adopted children  find their birth parents and found a specialist on twins within the organization who recommended DNA testing, in addition to the adoption research. Eventually, the two young women and their families and friends met face-to-face in London, while they waited for the results of their DNA tests.

I won't give away how it ends, but it is a thoroughly enjoyable journey to watch these two young women get to know each other and find out more about their backgrounds. Samantha and Anais are both very sweet, endearing women, and watching them unravel the secrets of their lives is a joy.

Samantha wrote the documentary herself, and she and her friend, Ryan, directed it. Much of it is put together from real-time video chats between her and Anais, and videos friends and family took when they met. It's a charming and joyful (and fascinating) 90-minute documentary, perfect if you are looking for something light and life-affirming.

Twinsters is available free on Netflix or for $2.99 to rent on Amazon Prime.

Thursday, June 30, 2016

Stanford ME/CFS Study Looking for Female Participants

Here's a great opportunity to participate in an ME/CFS study at a renowned research facility with one of the top ME/CFS experts in the world. This can help to move research and knowledge forward and might also help you to learn more about your own illness (I'm not sure whether they will be sharing individual results with participants or not). Details and contact info below:

"Recently the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative began recruiting for the neuroendocrine study.

Dr. Jose G. Montoya, Professor of Medicine at Stanford, is conducting a study investigating the endocrine system in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and healthy controls.

He is looking for individuals with ME/CFS to participate in the study.
Participants must be female and 18 ‐ 45 years old.

Participation in the study involves an online questionnaire and two study visits at Stanford with blood draws and endocrine testing.

There is no cost to participate in the study.

Participants will be compensated $200 for completion of the study.

If you are interested in participating or have any questions, please contact the study coordinator, Jill Anderson, at (650) 723-9711.

For general information about participant rights, contact 1‐866-680-2906."

Tuesday, June 28, 2016

TV Tuesday: Wayward Pines

We recently started watching the second season of Wayward Pines on Fox. It's a twisty-turny sci fi thriller, but I'm going to be careful not to tell you too much about the plot. Discovering its secrets one by one is part of its unique charm.

The pilot was directed by M. Night Shyamalan, who is an executive producer of the series, so right away, you know you are in for some super creepy, unexpected surprises, and he doesn't disappoint.

In the first episode, Secret Service Agent Ethan Burke, played superbly by Matt Dillon, is searching for two fellow agents who disappeared about a month ago. He tracks them to a small town in remote Idaho called Wayward Pines, but he gets in a car accident. Ethan wakes up in the hospital and immediately notices something is "off" about the town and its residents. He can't call outside the town, the local police seem completely uninterested in his missing agents, and Sheriff Pope, played by Terrence Howard, tells him he can't leave the town. Back in Seattle, we see that Ethan's wife, Theresa, played by Shannon Sossamon, is worried about her husband and wonders whether he left her for Kate, one of the missing agents and Ethan's former mistress.

Ethan does find Kate in Wayward Pines in that first episode, but she seems to be happily settled in the bucolic town. Nothing makes sense to Ethan, and no one will listen to his urgent pleas that something is wrong. Back in the oddly deserted, quiet hospital, Nurse Pam, played by Melissa Leo, gives off a super-creepy vibe, while Megan, played by Hope Davis, is equally disturbing as the ever-smiling head of the local school. Everything seems strange and unexplainable to Ethan, and it's clear the town's residents aren't going to give him any answers. By the second episode, those eerie feelings are replaced by true fear as Ethan gradually learns more about the town's rules and consequences.

I really don't want to say anything beyond describing the first episode, because like most of M. Night Shyamalan's movies, this show is best discovered on your own, moment by moment, without any spoilers. I can tell you that you will be surprised - again and again - as the town's secrets are gradually revealed.

This is one of the few shows that our college son comes home to watch with us! He, my husband, and I all like it very much, even as it constantly reinvents itself, as its secrets are slowly disclosed. Wayward Pines is a thriller, with plenty of action and suspense. It is also a dystopian sci fi show, with all the elements that we love in those genres. And it is a drama, as the viewers get to know the town's residents and root for the good guys (and boo the evil ones!). The second season (we are 5 episodes into it now) brings even more surprises, as the first season ended with a disaster, and the second season brings in an almost entirely new cast...but it works and is still just as gripping as ever.

Season 2 of Wayward Pines is currently available free On Demand (our cable service shows it available until 3//17) or on the FOX website. It airs Wednesday nights at 9pm Eastern (I sometimes forget that some people still watch TV live when it airs!). Season 1 is available through Netflix DVD service (but not streaming), it looks like it is available on Hulu, and it is $1.99 an episode (or $17.99 for the entire first season) on Amazon Prime (see link below).

Monday, June 27, 2016

Weekly Inspiration: We Are Born for Joy

It's been a few weeks since I've had time for a Weekly Inspiration post. Between my son's high school graduation, and both of our sons running in and out of the house in between their trips, it has been super hectic, noisy & chaotic here! I think I am finally started to get caught up...and am seriously looking forward to a few days this week ALL BY MYSELF!

One of the things I caught up on this weekend was my Quote Journal. If you're a regular reader of my blog, you know that I love to read and often write down quotes from the books I read that I find inspiring.

Today's inspiring book quote is one of my favorites but comes from an unexpected source: Life Expectancy by Dean Koontz. Koontz is best known for his horror novels, which I started reading when I was a teenager. I hadn't read much Dean Koontz in years, but after my dad died a year ago, my husband and I brought home his extensive collection of Stephen King and Dean Koontz books, with the encouragement of his wife. Reading and enjoying books was something special we shared with my dad. Coincidentally, just a week after that, I joined the ME/CFS Book Group on Facebook and found that their next book choice was Life Expectancy by Dean Koontz. It was on my dad's shelf, so I read it with the group and was pleasantly surprised (my review at the link - no spoilers).

Life Expectancy is not horror - like Stephen King, Koontz actually writes a wide variety of novels in lots of different genres. This one was a genre-bending blend of thriller and humor. But I realized last night, while writing down favorite quotes from the book, that it was also thoughtful, introspective, and inspiring! The family at the heart of the novel (who, yes, are being pursued by killer clowns - cue suspense & humor both) is the greatest literary example ever of a loving, joyful, happy family.

Here's what the main character, Jimmy Tock, says toward the end of the novel:
"No one's life should be rooted in fear. We are born for wonder, for joy, for hope, for love, to marvel at the mystery of existence, to be ravished by the beauty of the world, to seek truth and meaning, to acquire wisdom, and by our treatment of others to brighten the corner where we are.

...No one can grant you happiness. Happiness is a choice we all have the power to make. There is always cake."
                    - Jimmy Tock in Life Expectancy by Dean Koontz

That last line is because Jimmy and his dad are bakers, and his family delights in all the wonderful foods - and especially baked goods - they prepare for their daily meals together.

I loved this fictional family, and I loved these words. They perfectly capture my own view of life, a view I have had for many decades but that has been strengthened by my experiences with chronic illness. It's easy, when our lives are filled with exhaustion and pain, to focus only on suffering, but this is a reminder that no matter what happens in our lives (and Jimmy's family endures a LOT in this novel), life is really about wonder, joy, hope, and love.

I often write on this blog about the importance of these positive emotions and experiences, even (especially) in the midst of a life of chronic illness, but this brief quote seems to sum up all of that in one beautiful, succinct passage. I want to pin it on my wall and read it every morning to start my day!

Words to ponder...and to live by.

What books and authors have surprised or inspired you?

Tuesday, June 21, 2016

TV Tuesday: The Fosters

With both of my sons home for summer, TV is very action/thriller-oriented right now (I'm the only female in the household!) and time to watch "my" shows is very limited. So, when I had a rare lunchtime to myself last week and was looking for something to watch, I wanted some "comfort TV." I wanted something that would remind me of the glory days of Parenthood (one of my all-time faves) or my more recent discovery, The Girlfriend's Guide to Divorce (only season 1 is available on Netflix and I finished it). I was thrilled to discover that one of my old favorites is on Netflix - all of its seasons - so I could catch up.

The Fosters is a wonderful family drama set in California. If you think that there's not enough diversity on TV, then this show is for you! Stef and Lena are a lesbian couple with a group of pre-teen and teen kids who are a mixture of natural, adopted, and foster (of multiple races)...and their family keeps growing! Stef, played by Teri Polo (who I just discovered is from Delaware, where we live), works as a police officer. Her ex-husband, Mike (played Danny Nucci), who is also a police officer, lives nearby - he later gets into fostering, too! They had a son together, Brandon (played by David Lambert), who is now in his late teens and lives with Stef and Lena. Lena (played by Sherri Saum), works as vice-principal at a local charter school, where Brandon attends, along with his adopted brother and sister, Jesus (played by Jake T. Austin) and Mariana (played by Cierra Ramirez), who are twins and a year younger. Stef and Lena adopted the twins when they were just toddlers.

Into this mix, in the first episode, comes Callie, a troubled teen just out of Juvie. Callie comes to Stef and Lena on a temporary basis, while the system tries to find her a new foster home. Callie has a single-minded purpose: to get her little brother, Jude, out of his foster home, where their foster father is abusive. Stef insists to Lena that they can't possibly take in any more kids, but after getting to know Callie and Jude, they agree to find a way to add them to their family.

The Fosters is a typical family drama in that awful things keep happening to this poor family! But the show also has a good sense of humor, which keeps it entertaining and not depressing. Additional foster kids come in and out of their lives, and Callie - who has had some terrible experiences in the system - continues to get into trouble, though she is clearly a good kid. You'll be rooting for her from the very first episode. I think what I like best about this show is the quality of the writing and the acting, especially the kids. When I started watching it, I admit to a bit of a bias, thinking that maybe an ABC Family show might not be of very high quality...but I was wrong. Now I am midway into season 3 and absolutely thrilled to have found it available on streaming, so I can get back to it. And I see that season 4 has just started...oh, boy! If you are looking for a replacement for Parenthood or The Gilmore Girls - a warm, funny, moving family drama - this is for you.

The Fosters is an ABC Family show (now called Freeform). Some recent episodes plus new season 4 episodes are available free on Freeform, as well as on cable On Demand. Netflix streaming has all seasons of The Fosters available - yay! It is also available on Amazon for $1.99 an episode or $24.99 for a season (which usually contains 20 or more episodes).

Have you seen The Fosters yet? What's your favorite family drama?

Just watch this trailer - you'll be hooked! Makes me want to watch it all over from the beginning.

Thursday, June 16, 2016

Unique Opportunity To Provide Input to NIH on ME/CFS

Invisible No More!

I posted last week about the opportunity to share your experience using low-dose naltrexone (LDN)with the NIH (US National Institutes of Health). Well, it turns out I posted that a little too quickly without reading all the details. What I said was perfectly accurate, but...this Request for Information (RFI) is NOT just about LDN...they are requesting input from scientists, doctors, advocates, and yes, patients, on all aspects of ME/CFS research.

This is a unique - and very rare - opportunity for patients to provide direct input to the NIH on what kinds of research you think are needed for ME/CFS, what challenges or barriers exist, and what opportunities exist. So, let NIH know - as a patient - what do you need? What priorities do you see for ME/CFS research, what treatments have helped you and need further study to make them more widely available, what needs to happen to make better, faster, more effective ME/CFS research a reality?

Otherwise, the rest of what I said is accurate -  responses to the RFI should be e-mailed and the deadline for input is June 24, 2016 (next Friday).

Here is the content of the e-mail I am sending today - I focused on treatments that have helped my son and I and how they should be more widely available to all ME/CFS patients (and the great need for educating doctors), with some notes at the end about my desire for US research into Rituximab and the need to focus research ultimately on finding a cure. I had a lot to say, but you don't need to write this much - even just a sentence or two will help.

(NOTE: for detailed information on the treatments I discuss in this e-mail and lots of links to more information, see my earlier post on Effective Treatments for ME/CFS).

Here is my e-mail - send yours today & let our voices be heard! 

"I am a patient who has had ME/CFS for over 14 years. Two years after I got sick, on March 1, 2002, both of my young sons, then ages 6 and 10, also got ME/CFS. After 10 years, one of them (whose ME/CFS was always milder) is completely recovered, but the older son, now 22, still has ME/CFS, as do I.

There is an urgent need for treatments to be officially approved in the US for ME/CFS. Having a technical background myself (ChE), I have devoted much of the past 14 years to researching and trying treatments. Although nothing so far helps a lot, we have found quite a few treatments that each help a little, and those add up to greatly improved quality of life and ability to function. Both my son and I are far more functional than most people with ME/CFS, though we are both still clearly disabled by the illness and must live our lives as defined by restrictions & limitations.

I also manage several online and in-person groups for parents whose kids have ME/CFS and so have collected information on treatments from them, as well. Many of their children are housebound or bedridden by this debilitating disease. There is an serious lack - and an urgent need - for more research into treatments for children with ME/CFS. There has never even been an ME/CFS population study of children & teens conducted!

There are millions of Americans - including many, many children and teens - suffering from ME/CFS in the US…and not a single approved treatment.

All of the treatments that have helped my son and I are currently available in the US, and many of them are off-label uses of existing medications. Research is needed to quickly assess the effectiveness of these already existing treatments in order to approve them and make them available to more people. Currently, most of these treatments are either not known by most doctors or doctors are hesitant to prescribe the drugs off-label. We have been fortunate to be able to travel to see ME/CFS experts, but that is not possible for most patients. We are also fortunate to have a primary care physician who understands ME/CFS and was willing to listen when I brought her information, so some of these treatments were prescribed by her. Most SHOULD be readily available through primary care physicians - they are only lacking the knowledge.

ALL of these simple and inexpensive treatments should be made available to ALL patients (and doctors should be trained in their use for treating ME/CFS) - I am including links to more information:
  • Correcting the sleep dysfunction characteristic of ME/CFS using low-doses of tricyclic antidepressants at bedtime to help increase serotonin and/or dopamine, as a healthy body would naturally. This has worked remarkably well for my son and I, providing deep, normal sleep every night for over 10 years now. https://web.archive.org/web/20011201183549/http://www.cfids.org/archives/2001rr/2001-rr3-article01.asp
  • Treating Orthostatic Intolerance with a variety of medications, including (Florinef), midodrine, and various beta blockers at low doses. Note that different people respond differently to beta blockers, so any study on using them for OI should 1) start with an extremely low dose - even 1/2 or 1/4 of the lowest dose available, and 2) allow for patients in the study to try a variety of types and doses (trial and error) to find the one that works best for them. Keeping the dose low helps to prevent additional fatigue from the medication. When given the opportunity to use trial and error to try different types and doses of beta blockers, ME/CFS patients are almost always successful in finding one that helps them. http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
  • Treat immune dysfunction. Immune dysfunction is at the heart of ME/CFS and is the root of many (perhaps all) of its resulting symptoms. Normalizing the immune system can therefore help to improve all symptoms. Two treatments that have worked very well for us and contributed a great deal to our improvement over the years are inosine (available as a supplement in the US) and low-dose naltrexone (LDN), which uses a tiny dose (1 mg - 4.5 mg) of an already long-approved drug, naltrexone. Both of these help to normalize the immune system in ME/CFS but - again - dosing is critical as most ME/CFS patients over-respond to medications. Though LDN is typically thought of with 3 mg or 4.5 mg as ideal doses, many people with ME/CFS do better with only 1 mg or 1.5 mg. Inosine must be used according to a complicated dosing schedule in order for it to remain effective. Dozens & dozens of studies on LDN for immune disorders (but none yet for ME/CFS): http://www.ldnresearchtrust.org/Clinical-trials-studies More info on LDN & how it works: https://www.ldnscience.org/ Inosine - note that this article refers to the name brand Imunovir, sold in Europe & Canada, but we have found the generic inosine supplement to work exactly the same for us: http://www.anapsid.org/cnd/drugs/isoprinosine.html http://www.anapsid.org/cnd/diagnosis/cheneyis.html
  • Treat underlying infections. Perhaps the most important step in improving or even recovering from ME/CFS but one that most doctors do not understand or know about. The immune dysfunction of ME/CFS causes reactivation of latent infections, so these should be treated aggressively with antivirals or antibiotics. Common culprits in ME/CFS include mono (EBV), HHV-6, CMV, enteroviruses, Lyme disease and other tick-borne infections. My own son has 3 different tick infections and has improved greatly with treatment for those. If someone with ME/CFS has high levels of EBV or contracts mono for the first time (as is true of many teen ME/CFS patients), most doctors only know the standard protocol - no treatment and wait for it to pass. But people with ME/CFS - especially children and teens - stand to improve significantly and perhaps even recover with aggressive antiviral treatment using Valtrex or Famvir. Dr. Martin Lerner pioneered much of the existing research into treating underlying infections in ME/CFS with great success: http://www.hhs.gov/advcomcfs/meetings/presentations/presentation_10122010_martinlerner.pdf  http://www.ncbi.nlm.nih.gov/pubmed/23080504
  • Address methylation. For most ME/CFS patients, their methylation cycle is severely dysfunctional, causing problems with energy production, adrenal function, and detox pathways. This last one is probably at least partially responsible for the fact that so many ME/CFS patients can not tolerate even small doses of medications. Often, methylation can be addressed very simply (and cheaply) with B12 folate (specific types) supplementation and results in significant improvement. This was key in my own son's improvement. Dr. Amy Yasko in the UK has written extensively about this: http://www.dramyyasko.com/our-unique-approach/methylation-cycle/  Here in the US, Rich Van Konyenburg (sadly, now deceased) also did some important work in methylation, including a simplified protocol for ME/CFS patients: http://www.prohealth.com/library/showArticle.cfm?libid=17178&site=articles
For more information on all of these treatment approaches and how they have worked effectively for my son and I, see this blog post I wrote: http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html

All of these areas need attention from NIH - to further research the effectiveness of these treatments for ME/CFS (again, keeping in mind that doses must be VERY low for most ME/CFS patients), and even more importantly, to help educate mainstream doctors about the use of these simple treatments to help improve functionality and quality of life in their ME/CFS patients. Right now, the education and information sharing is happening almost exclusively among patients, with almost no knowledge among most doctors of how to treat ME/CFS - even the simplest of facts, like that Orthostatic Intolerance is an integral part of ME/CFS and is easy to treat.

One final note: all of the treatments I mentioned here are currently available using already-approved medications and/or supplements, but the lack is in educating doctors.

There is also a significant need for continuing new research into ways to diagnose ME/CFS, its cause and exact physiology, and more effective treatments. One particular area of current focus is the use of Rituximab for ME/CFS. To date, the only studies that have been done have been in Norway (one is planned in the UK), but the results from Norway have been very promising, with 60% of ME/CFS patients improving significantly or even recovering. The US needs to get moving and do its own patient-based studies to move this research along further and fully investigate any dangers or downsides.

ME/CFS has some significant challenges that have gotten in the way of effective research in the past and could make further research useless if ignored:
  • ME/CFS is a multi-system disease that affects almost every part of the body. The traditional approach of trying to squeeze it into one single category or medical specialty doesn't work.
  • ME/CFS patients tend to over-respond to "normal" doses of medication or supplements (see notes above re: beta blockers and LDN)). Studies that use a single standardized dose to test a treatment are bound to fail. ME/CFS patients need a period of trial and error, starting with the tiniest dose available (often needing to cut pills in halves or even quarters or use a liquid) and only increasing dose as tolerated. Studies should be set up with this understanding.
  • ME/CFS is heterogenous. Different patients have different primary symptoms and respond differently to treatments. Again, allowing for some trial and error in clinical studies would help tremendously, and standardized dosing is certain to fail.
Ultimately, the goal for ME/CFS research should be not just finding treatments that help to improve symptoms a little bit but finding the cause of ME/CFS and a cure so that patients no longer need to live with a lifelong sentence of disability and limitations."

Now, go and write your own e-mail and send it before June 24! Remember, even just a few sentences would help. Let ME/CFS patients' voice be heard!

Tuesday, June 14, 2016

TV Tuesday: Sticthers

Last week, with all of our favorite spring shows wrapping up and June beginning, I looked up start dates for some of our favorites from last summer. I was surprised - and alarmed - to see that one show we loved, Stitchers, had actually come back for its second season in March! Luckily, all of the season two episodes are still On Demand, so we settled in for some binge-watching and are almost finished with season two now.

Stitchers is an ABC Family show (and BTW, did anyone else know that ABC Family has renamed themselves FreeForm? News to me as of 5 minutes ago) that combines a suspenseful crime drama with some sci fi and a hefty dose of character development and drama, too. We were hooked from the first episode.

The show focuses on a secret government program within the NSA. A new technology allows the team to take a recently dead body and "stitch" a live team member's consciousness into its brain in order to retrieve memories. In this way, they hope to use the technology to solve crimes (especially murders) that were previously unsolvable. Maggie, the team's leader and a former covert operative, recruits a young woman named Kirsten to be the one to stitch into bodies. Kirsten has a disorder where she doesn't feel emotions, so her calm, detached demeanor makes her perfect for the job. Other team members include Cameron, a brilliant young scientist; Linus, who handles communications technology; and a local police officer, Detective Fisher, to handle the law enforcement side of things. They also recruit Kirsten's roommate Camille, played by Allison Scagliotti (who we loved on Warehouse 13), to help with the program. All of these characters, except for Maggie and Fisher, are young, brilliant scientists.

Like any crime show, in each episode, there is a new murder or other crime to solve. The difference is that this team looks at regular evidence but also "stitches" into the dead body to recover memories leading up to the death to help them figure out who the culprit(s) are. The show is action-packed and full of suspense, as the team races against time (there is a limited time when stitching is viable) to solve the latest case. In the second episode, viewers find out that Kirsten's father - who disappeared when she was young - was somehow involved in the Stitchers program, and that becomes an on-going plotline as well, as she searches for answers to her own past. In addition to the crime and sci fi elements, there is plenty of character drama, too.

Like I said, we were hooked from the first episode. Admittedly, this is one of those premises where you just have to ignore the supposed technical explanations and go with the flow - this is, after all, science fiction. There are several aspects of the show that you could pick on if you wanted to - especially the youth and attractiveness of the main characters (all brilliant scientists) and the stitching process itself. The character of Kirsten seems cold and unappealing in the first episodes, but her character really grows and develops over the course of two seasons. In fact, all of the characters - and the on-going plot - continue to develop throughout these first two seasons, so this is one of those shows that gets better as it moves forward and benefits from watching at least a few episodes before deciding if you like it. We just chose go with the flow, and we've thoroughly enjoyed the fast-paced, suspenseful episodes and the overall plot arc. We have just a couple of episodes of season two left, and we can't wait to watch them this week!

All episodes of both season 1 and season 2 of Stitchers are currently available for free on the FreeForm (formerly ABC Family) website. We've been watching season 2 for free on our cable On Demand; our cable company has it up until April 24 (hurry and you can binge the whole season like we have!). It is also available on Amazon for $1.99 an episode or $14.99 for a full season (links below).