Improvements to the US NIH's Involvement with ME/CFS

The U.S. government has a long history of ignoring and minimizing the needs of ME/CFS patients. Our National Institutes of Health (NIH), the primary medical research organization in the country, has for many years allocated a measly $5 million to ME/CFS research annually, which is nothing compared to other diseases with similarities to ours (see below), especially when you consider the numbers of patients.

In addition, although we have an Advisory Committee within HHS (Health & Human Services, the parent group to NIH), the CFS Advisory Committee or CFSAC, with some excellent, high-profile ME/CFS researchers and clinicians, nothing ever seems to come from their recommendations to HHS. It seems like no one has been listening.

So many patients have given up on the government and are bitter and resentful (with good reason!). But we really can't afford to give up because the NIH remains the top medical research resource in the US, in terms of both money and power. If we ever hope to get ME/CFS understood and taken seriously by the mainstream medical community, with real treatment options widely available, then we need NIH behind us.

Finally, there are some reasons for cautious optimism, some recent changes that give us hope for a better future:

• After the IOM Report in 2015, the Solve ME/CFS Initiative organized a congressional briefing, attended by congressional representatives, reporters, government officials, and 300 live webcast viewers.
• In 2015, a nationwide working group was formed, headed by Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association, to collaborate on policy changes in government. This working group also joined with the newly formed #MEAction initiative. In December 2015, this large working group issued a joint statement cosigned by 23 organizations and advocates.
• In February 2016, that new coalition put their words into action in both meetings and letters to congressional members to save our measly $5 million in NIH funding, which was completely missing from the proposed NIH budget. This was critical, since without a line item in the NIH budget, it would have been very difficult to get ME/CFS back into it in future years
• In August 2016, a group of ME/CFS advocates met with Karen DeSalvo, the acting assistant secretary for health - the highest-ranking meeting with HHS officials in recent history. A second meeting will take place in October 2016.

(These news items all come from the Solve ME/CFS Initiative's Chronicle newsletter, which was involved in all of these actions. You can sign up for an e-newsletter or their paper newsletter to read more here.)

 And just this month, the charter for CFSAC was renewed with some significant changes:

• The charter includes a new responsibility for the committee to include "strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research." This will help patients' voices to be heard and acted on.
• Another new item in the revised charter: "The Assistant to the Secretary of Health shall be given the responsibility to coordinate and monitor the implementation of those recommendations adopted by the Secretary." This is significant since the CFSAC's recommendations have gone nowhere in the past - now, someone is responsible.
• Voting members of CFSAC have been increased from 11 to 13, including 3 who are ME/CFS patients or caregivers (up from 1 previously).
• Two non-HHS members have been added to the ex-officio list of members: representatives from the Department of Defense and the Department of Veteran Affairs. This is significant because there is considerable overlap between Gulf War Syndrome and ME/CFS, and the DOD funds a lot of its own biomedical research and has access to a LOT of funds.

(This is just a quick summary. For more details on the CFSAC changes, please refer to Jennie Spotila's informative post on her blog Occupy ME.)

So, while the government is infamous for moving at a snail's pace and being non-responsive, these are all positive changes that could result in significant changes for ME/CFS patients in the future. We are moving in the right direction!

TV Tuesday: Freaks and Geeks

I was looking for a new show to watch on those rare occasions when I have some time to myself (very rare lately - both college sons have come home sick a lot!). I decided to finally try a 1999 show that I have heard rave reviews of from so many people: the one-season wonder Freaks and Geeks.

Why did I wait so long to watch this amazing show?? I absolutely love it!

Freaks and Geeks takes place in a Midwestern high school in 1980. It features loads of teen actors and actresses who went on to become big stars as adults. And it perfectly captures high school in 1980. I should know - I was there!

It's definitely an ensemble cast, but one of the main characters is Lindsay, played by Linda Cardellini (who was on ER, played Velma on the live-action Scooby Doo, and much more). Lindsay is really smart, but she's sick of being an outcast at school and definitely does not want to be a mathlete any more. She starts wearing her dad's old Army jacket every day and hanging out with a rougher crowd, known in her school as the freaks. Her new crowd includes cute guy Dan, played by a young James Franco, nice guy Nick, played by Jason Segel (of How I Met Your Mother fame & many movies), and tough girl Kim, played by Busy Philipps (another ER alum who also starred in Cougartown). Seth Rogan as Ken rounds out their group.

In the same school, Lindsay's little brother, Sam, played by John Francis Daley (as an adult, one of our favorites as Dr. Sweets on Bones), is a freshman and hangs out with his best friends, Neal, played by Samm Levine, and Bill, played by Martin Starr. Unfortunately, the three are referred to as geeks by their classmates. They get picked on a lot and strive to find a way to fit in (while also still loving the things that make them geeks). This was 1980 - long before being a geek was cool.

The action mostly takes place in and around school, with the two main groups at the center of things but with lots of supporting roles. Two of the very few adults in the show are Lindsay and Sam's parents, played perfectly by Becky Ann Baker and Joe Flaherty. The show deals with all of the typical high school issues among the main characters: bullying, crushes, trying to fit in, figuring out who you are, and peer pressure.

What's unique here is how well it's all done. As you can see from their later resumes, the actors and actresses, though only teens at the time in most cases, were first-rate. The writing is excellent, and the sets are absolutely perfect. You know how Glee was always over-the-top and kind of campy (among its charms, for sure)? Well, Freaks and Geeks is super-realistic. In fact, this was MY high school (and I was very much like Lindsay!). Seriously - they pegged it perfectly, every last detail. I hate when TV shows or movies set in the 80's feature crazy clothing styles - all the girls dressed like Madonna or everyone in neon. This show is exactly what it was really like in high school in the 80's. I keep seeing Lindsay or another character wearing clothes that I had, shirts that my classmates wore - they have recreated 1980.

They also perfectly recreated the atmosphere in school. There's the long-haired guidance counselor who wants to be "your friend" and thinks he is cool (and is anything but). The burly gym teacher enthusiastically announcing "a day off for something fun," and then starting a dodgeball game, with the smaller kids cowering against the wall while the tough guys belt them with red playground balls (yeah, I'm just 5'1" now - guess where I was in those terrifying dodgeball games?). The school dance in the gym with everyone looking awkward and nervous. No glamorous micro dresses and 5" heels back then!

So, what if you didn't go to school in the early 80's? You will still love this show. It's wonderfully executed, dealing with real topics but with a sense of humor (Judd Apatow was Executive Producer). My 22-year old son enjoys it. And it is so much fun to see these now-famous actors and actresses as unknown kids! In fact, it won an Emmy for Outstanding Casting in a Comedy Series in 2000. You can see the long list of other awards and nominations it racked up in its single season.

I'm sure you can tell by my gushing descriptions that I am absolutely loving this show. I've only watched 4 episodes so far and am already dreading the end! Freaks and Geeks was famously cancelled after just one season, originally, just 10 episodes, but 18 had been made, and fans screamed loud and long to get the other 8 on air.

You can now watch all 18 episodes of Freaks and Geeks on Netflix. It is available through Amazon on DVD only.

TV Tuesday: Love

Back in the spring, I spent my lunchtimes (my "me" time!) watching a Netflix series called Love. I wasn't sure how much I liked it as first, but it grew on me, and I ended up enjoying the 10-episode first season. Love is basically a romantic comedy set in L.A., but it breaks from convention in every way possible.

In the very first episode, we meet Gus (played by Paul Rust), a nerdy but nice guy - maybe in his 30's? - who seems to have a very dull relationship with an overbearing girlfriend named Natalie. That doesn't last long, though, as Gus soon finds out that Natalie cheated on him and leaves her. Gus is at loose ends and seriously lacking in self-confidence. He works as an on-set math tutor for a spoiled child star on a corny TV show about witches in suburbia. He dreams of becoming a screenwriter and writing a script for the show himself.

In that first episode, Gus meets Mickey (played by Gillian Jacobs) at a convenience store, when Mickey realizes she forgot her wallet at home, and Gus offers to pay for her coffee and cigarettes. Mickey is Gus' opposite in every way - brash and outspoken, constantly swearing, and reckless. However, she is also in-between relationships (her drug-addicted on-again, off-again boyfriend has recently joined a cult) and feeling like her life is stalled. Mickey works as program manager at a satellite radio station, where her boss keeps flirting with her. In the second episode, Mickey finds a roommate to share her house: perky, sweet British Bertie (played adorably by Claudia O'Doherty).

Little by little, Gus and Mickey get to know each other and sort of - kind of - begin to date. This is not your typical romcom with a predictable chronology but a rocky, realistic story where neither of the main characters is quite sure where things are going. Sometimes, they seem to get along well and sometimes it seems like there is no way they will end up together.

The show was created by Judd Apatow, and although I'm not all that familiar with his work (Knocked Up, This is 40), from what I have heard, this show perfectly fits his typical style. It's somewhere between a drama and a comedy - it has plenty of amusing moments, but it is certainly not a sitcom. The characters really grew on me. I didn't like Mickey much at first - she is abrasive and often self-destructive. And I just wanted to shake Gus at times and tell him to stand up for himself. But over the course of the 10 episodes, as I got to know them, I liked them both more and more and was rooting for them to get their lives together. Of course, that hasn't happened yet, but I am looking forward to season 2.

Love is a Netflix original series so it is available exclusively on Netflix.

This trailer will give you a good idea of the tone and "feel" of the show:

Movie Monday: American Ultra

A few weeks ago, my husband and I had a rare weekend evening to ourselves, so we chose a movie - big occasion! We watched - and enjoyed - American Ultra, an action-filled movie with plenty of humor.

As the movie opens, Mike, played by Jesse Eisenberg, is living with his girlfriend, Phoebe, played by Kristen Stewart. Mike is clearly a stoner, working at the local convenience store in their small West Virginia town and getting stoned in his spare time (and sometimes at work, too). He seems to have some issues with anxiety, but Phoebe is supportive and Mike wants to ask her to marry him.

Their quiet, limited life changes in an instant when a woman comes into the convenience store where Mike is working and says some strange words to him. They make no sense to him (possibly because he is high again), and she leaves. Moments later, Mike goes out to the parking lot and sees two men planting a bomb under his car. They attack him, and his stoned lethargy drops in an instant as he easily kills both of them. He is left stunned, having no idea how he did that or what just happened.

It turns out (this is still early in the movie so no spoiler) that Mike is a sleeper agent for the CIA who has just been activated. Mayhem and hilarity ensue as two different factions race to get to Mike first, some of them bent on destroying him. Mike's CIA training is in conflict with his normal anxiety-ridden, stoned demeanor, as skills he didn't know he had kick into play.

This movie is just plain fun. The two lead actors (who were also together as a couple n Adventureland - a great movie) work very well together, and the supporting cast is very good, including Topher Grace and John Leguizamo. There are all kinds of secrets and surprises in store, both for the characters and for the viewers, so there is plenty of suspense to keep things moving. This is an action-packed movie which is not always my favorite thing, but in this case, it is paired beautifully with humor. So, yes, there is a LOT of gunfire, things blowing up, and other violent stuff here but set against Mike's typically chilled demeanor, there are also plenty of laughs and some warm moments, too. My husband and I both enjoyed this unique and fun rollercoaster ride of a movie.

We watched American Ultra on Amazon Prime, where it is currently free. It is also available on Netflix DVD (but not streaming). And it is on DVD.

The trailer kind of gives away a lot of the movie's best moments...but it is pretty funny, if you want to check it out:

Movie Monday: Fall 2016 Movies Based on Books

I was reading an article in the newspaper this week about upcoming fall movie releases, and I was struck by how many of them are book adaptations. This is a Hollywood trend that shows no signs of slowing...which is great for book lovers like me! I haven't read all related books yet, but I am excited to see so many familiar book titles coming to the big screen.

Here are some to watch for - better hurry up & read the books first! (note that where I have read the book already, I have linked to my review)

September 2 - The Light Between Oceans - A book that my book group and I all enjoyed, about an impossible moral decision faced by a kind husband and wife who rescue a baby.

September 16 - Bridget Jones's Baby - I admit I have not yet read any of the Bridget Jones novels (though I'd like to!), but I loved Renee Zellweger and Colin Firth in the first Bridget Jones movie. This one, the third, finds Bridget in her 40's and pregnant and unsure who the father is...and they've added Patrick Dempsey to the cast! I will go see it just for that.

September 23 - The Dressmaker - I haven't read this one, but the movie is adapted from a novel of the same name by Rosalie Ham, about a glamorous woman who returns to her small town in rural Australia and transforms the local women. The movie stars Kate Winslet and Liam Hemsworth.

September 30 - Miss Peregrine's Home for Peculiar Children - I just read this YA novel in June for one of my book groups & really enjoyed it, so I can't wait for the movie, directed by Tim Burton (so you know it's peculiar-ness will be extra-peculiar!) Fair warning, though: if you want to read the book, definitely read it FIRST, before seeing the movie, because even the movie trailer gives away some surprises that are gradually revealed in the book.

October 7 - The Girl on the Train - Both  my husband and I read and enjoyed this fast-paced thriller last summer, so we can't wait to see it on the big screen. Emily Blunt is starring as the messed-up unreliable narrator, Rachel.

October 7 - Middle School: The Worst Years of My Life - Based on a popular middle-grade series by the prolific James Patterson, the first book is coming to theaters, about a 6th grader. Starring Lauren Graham.

October 21 - American Pastoral - I am excited about this one! My book group read the Pulitzer Prize-winning modern classic by Philip Roth a couple of years ago, and I really enjoyed it. It's a very thoughtful novel, so it will be interesting to see how they adapted it. Ewan McGregor stars in the movie adaptation, along with Dakota Fanning and Jennifer Connelly. Might have to get some book group friends to go see this one with me!

October 28 - Inferno - Another of Dan Brown's popular novels comes to theaters this fall, with Tom Hanks once again starring as symbologist Robert Langdon. I read (and loved) The Da Vinci Code but haven't read this one yet (though I think we have it and my husband has probably read it).

November 11 - Billy Lynn's Long Halftime Walk - Yay!! This was an amazing novel that blew me away, about one day (a long and confusing day) in the life of a returning war hero who is really just a kid. It was hilarious, heartbreaking, and incredibly thought-provoking. The movie stars Vin Diesel, Kristen Stewart, and Steve Martin, among others - an odd collection! I hope they were able to capture the magic of the book.

Have you heard of any other book adaptations coming to theaters this fall? Which fall releases are you most excited to see?

Exciting New Research May Help with ME/CFS Diagnosis & Treatment

Photo © Max Blain | Dreamstime Stock Photos

Earlier this week, University of California San Diego released the results of a ground-breaking study that identified a metabolic chemical "signature" that was able to differentiate between ME/CFS patients and healthy controls. This study represents a big step forward in developing a method for diagnosis (rather than just relying on clinical symptoms) and potential treatments. Here is UC San Diego's press release describing the study results and an article that appeared in Science Daily this week on the study.

This is a complicated one, so here are some of the highlights and WHY this study represents a major breakthrough:

• The study included 45 men and women with CFS and 39 matched controls.
• Researchers looked at 612 metabolites (substances produced by the processes of metabolism) from 63 biochemical pathways in blood plasma.
• They found abnormalities in 20 of those metabolic pathways in ME/CFS patients compared to healthy controls.
• From just their metabolic data, they were able to accurately identify over 90% of the ME/CFS patients, showing that this could be a valuable diagnostic tool, more accurate than anything else we have yet.
• Of the many metabolites measured, researchers found that 80% of them were decreased in ME/CFS patients, indicating a state of reduced metabolism.
• This reduced metabolism or hypometabolism is the opposite of what is seen in metabolic syndrome or in acute infection. Basically, our bodies are trying to protect themselves by partially shutting down or slowing down, a process called Cell Danger Response (CDR).
• Of the abnormalities found in ME/CFS patients, 25% of them were consistent across all patients tested regardless of time sick or how the illness began - these are the ones that could help create an accurate diagnostic test(s).
• The remaining 75% of abnormalities differed from one patient to the next, which helps to explain why some patients respond well to a treatment and others don't. These individualized abnormalities could help lead to very specific treatments based on metabolic testing to help each patient.
• There were significant differences in many of the measured metabolites between men and women (though still that core 25% that were the same across the board and could be used for diagnosis).

The best news of all? This is just the beginning! The main researcher at UC - San Diego, Dr. Naviaux, has joined the board of the Open Medicine Foundation (a key ME/CFS research and clinical organization), and OMF is already planning the next study with Dr. Naviaux, which will include a larger patient population and will also look at the role of genetics.

If you want to know more of the details, this is an excellent study summary and Q&A with Ron Davis, Director of the Scientific Advisory Board at OMF.

So, all-around great news for ME/CFS patients! This is one of many ground-breaking scientific studies on ME/CFS in the past few years that is moving the science forward at a fast pace. Diagnostic tools and treatments come next! All of this leads to hope for a better future for all of us!

TV Tuesday: The Missing

In this sort of in-between seasons TV season, my husband and I were looking around for a new show to try on one of the streaming services. We settled on The Missing, a Starz show currently available on Amazon Prime (note that there is a different show also called The Missing available on Netflix or to rent on Amazon - the one we are watching aired in 2014 and is a joint Starz-BBC production).

In short, The Missing is a show that centers on a single mystery and is a suspense-thriller, though it is focused on the victims. British citizens Tony and Emily Hughes are enjoying a vacation in France with their five-year old son, Oliver, when the unthinkable happens. One evening, in a crowd of people, Oliver goes missing. One moment he's holding onto Tony's hand, and the next, he's gone. It's every parent's worst nightmare (and brought back my own nightmares of the time my 2-year old son slipped away from me at a shopping mall!).

As the show opens, it has been 8 years since Oliver's disappearance, and Tony is back in the small French town where it happened, following up on a new lead he thinks he found on social media. Tony has never stopped looking for his son and has become obsessed with the case, to the point that he and Emily are now divorced. Tony calls on the detective originally assigned to the case, Julien, who has since retired but also still thinks about Oliver. Together, the two men follow Tony's latest lead, slim though it may be.

The narrative moves back and forth between the past, when Oliver first disappeared, and the present day, with scenes in both England and France. Most of the action takes place in the small French town where Oliver went missing. As with any mystery or detective show, the details of the investigation unfold gradually, as the police follow one lead after another, chasing down a variety of suspects and clues. What is different here, though, is the focus on this one single case, as well as the perspective of Oliver's parents. Most of the story is told from Tony's point of view.

We have watched the first 5 episodes of 8 in season one (the fact that there is a season 2 doesn't bode well for the Hughes family!). It is engaging and intriguing, a good mystery that keeps surprising us. The subject matter gets a little difficult at times, as when the police suspect a pedophile. After watching episode 5 recently, I asked my husband if he wanted to watch another and he said, "How about something a little lighter?" (episode 5 is a tough one!). But we do want to watch more. It is suspenseful, the action moves along at a good pace, and we want to see what happens next.

The Missing is currently available free on Amazon Prime and on DVD.

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.

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!

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. 

Colony
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.

Aquarius
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.

BrainDead
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?


 

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.

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).