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.
  • 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.
  • 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): More info on LDN & how it works: 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:
  • 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:
  • 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:  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:
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:

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).


Monday, June 13, 2016

Movie Monday: Captain America: Civil War

I vowed not to watch anymore superhero movies after a glut of them with my husband and two sons a couple of years ago, but I made an exception for this one for several reasons last week: my friends on Pop Culture Happy Hour (one of my fave podcasts) assured me it was one of the better superhero movies, with a fully developed plot; I do enjoy seeing Robert Downey, Jr. in movies; and it happened to be showing at the best time for us in our local theater last week when we went for $5 Tuesdays (a rare event for us to go to the theater!). So, we saw Captain America: Civil War on the big screen.

First, the title is somewhat misleading. Though Captain America does play a large role in this movie, it's not all about him. This is truly an ensemble cast of superheroes. In fact, as the title does accurately depict, it's about a civil war among superheroes.

Apparently, the Avengers created a lot of chaos and damage the last time they saved the world. The world is getting kind of fed up with having to clean up their messes after they swoop in to save the day. In particular, one country, Sokovia, where the latest destruction occurred (see last Avengers movie, apparently) now leads efforts internationally to reign in the superheroes and give them some oversight. In fact, representatives of over 100  countries are gathering in Vienna to sign the Sokovia Accords, which will create a UN panel to oversee the team and determine when and where they should be called in to help.

This causes a rift among the Avengers. Some, including Tony Stark aka Iron Man, played by Robert Downey, Jr., are wracked with guilt over what happened in Sokovia and agree that there should be some oversight of them. Others, led by Steve Rogers aka Captain America, played by Chris Evans, are against any kind of oversight and believe the Avengers should continue as they have been - dispatching themselves whenever and wherever they see a need for their services. The Avengers each choose sides on this conflict and are splintered by the disagreement.

Meanwhile, the building where the Sokovia Accords are to be signed is bombed, and it seems that Bucky Barnes aka Winter Soldier is responsible. Captain America firmly believes that his old war buddy is innocent or was set up, but the Iron Man team thinks he's letting his personal feelings interfere and that they should be  - carefully and responsibly - trying to capture Bucky. As you might have guessed, multiple fights, chases, and battle scenes ensue as the two sides of the Avengers each seek different resolutions, including one really cool battle (even I had to admire it) between the two factions of superheroes, with some extra muscle they each pulled in to help. In fact, the highlight of the movie was when Tony Stark visits a very young Peter Parker, who is just starting out as Spiderman and is mostly unknown, and recruits his help.

That complicated synopsis is just the tip of the iceberg. When PCHH said this movie has plenty of plot behind it, they weren't kidding. It's a very complex plot, and sometimes we weren't entirely following it. In fact, there were a bunch of characters whose superhero names were never spoken during the movie but it was assumed the audience would know (we didn't). This is the downside of skipping a couple of years' of superhero movies; this one, as is true of others, relies heavily on past Avengers' movies. My husband and I kept whispering to each other, "Wait, who is THAT?" There were some characters with a fair amount of screen time whom I didn't know until 10 minutes ago when I looked the movie up on IMDB to write this review!

Our approach was to just go with the flow. We tried not to get annoyed when we didn't know who someone was, and most plot points were eventually explained. We just went along for the ride. And it's quite a ride! Nonstop action, plenty of battles, plus a bit of character development for the more major characters and a good dose of humor. That last element is - for me - what makes the difference between an incredibly boring, barely watchable superhero movie and one that I can enjoy. Of course, there is plenty of humor from Robert Downey, Jr, in his usual wise-cracking mode as Tony Stark, but the best moments in the movie come from a surprising source: Tom Holland as the very young Spiderman, on his first big gig and (over)eager to impress "Mr. Stark."

So, lots of action, a complex plot, and some good laughs - all in all, not a bad way to spend a couple of hours (actually a bit more). And if you are a fan of superhero movies and the Avengers anyway, then certainly, this is a movie you'll love.

[For those in the know, the other superheros in Civil War (and the all-stars who played them) include Black Widow (Scarlett Johanssen), Falcon (Sam Wilson), War Machine (Don Cheadle), Hawkeye (Jeremy Renner), Vision (Paul Bettany), Scarlet Witch (Elizabeth Olsen), Ant-Man (Paul Rudd), and introducing Black Panther (Chadwick Boseman), who will have his own movie later this year.]

Captain America: Civil War is now out in theaters (we are rarely so current on movies!).

Friday, June 10, 2016

Share Your Experience with LDN To Move Research Forward

I received an e-mail today from the LDN Research Trust (LDN = low-dose naltrexone):
"The National Institute of Health in the USA which is the body that grants funds for public research into ME/CFS has put out a "Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)"

They are asking for ideas from individuals as well as bigger groups. The response date is by 24th June so we need to act quickly!

The request can be found at this NIH link.

If you have any experience of LDN for ME/CFS as a user or prescriber please send an email to Your input would be invaluable."

Low-dose naltrexone (LDN) is a treatment used for all kinds of immune disorders, including ME/CFS, to help normalize the immune system. It is extremely safe, as it is a medication that has been used in large doses of 50 mg (or much more) for many decades, and for this purpose, it is used in tiny doses of only 0.5 mg - 4.5 mg.

My son and I have had great success with LDN. I felt better - with more energy and less fatigue - the very first day after my first bedtime dose! Many people take a bit longer than that, with some trial and error, to find just the right dose for them, but it is a treatment that has helped many people with ME/CFS. For more on our experiences and links to more information on LDN, check out this past LDN blog post.

Please take a moment to use the e-mail link above to share your positive experiences with using LDN for ME/CFS - there have been many dozens of studies proving its effectiveness for many immune disorders, but - no surprise - not a single study yet on LDN and ME/CFS.

Remember the deadline is June 24!

Wednesday, June 08, 2016

New ProHealth Article: Where Is Your Journey Taking You?

My latest article has been published on the ProHealth website (a highly recommended resource for information on ME/CFS, fibro, and Lyme): Where Is Your Journey Taking You?

This article was inspired by a quote I recently read in a novel (which in turn also inspired one of my recent Weekly Inspiration posts here on the blog).

It's all about how this unexpected journey of chronic illness - that none of us saw coming - can result in some equally unexpected positive results. The article recounts some of the positive things that have come out of my own family's struggles and some ideas to help you consider the positives in your own unexpected journey.

Let me know what you think - here or on the ProHealth site. Where Is Your Journey Taking You?

Tuesday, June 07, 2016

TV Tuesday: Humans

Last fall, my husband and I started watching Humans but only got halfway through the season when it was pulled from our cable's On Demand. So, we were thrilled when it was recently added to Amazon Prime! We re-watched the first episode and then realized we didn't remember much and ended up watching the entire season in less than two weeks.

This brilliant joint project between American AMC and British Channel 4 is an engrossing sci fi series with a great cast.  The show is set in London in the present or near future in a world where robots have become so advanced, they are almost impossible to tell apart from humans. These Synthetics or Synths have become an integral part of human life, working at manual jobs, in people's homes as servants, and even working as prostitutes.

In the first episode, we meet a normal suburban family who has just gotten their first Synth. Husband Joe is exhausted by wrangling the three kids and the house while his wife, Laura, works as a lawyer with frequent trips out of town. So, one day on a whim, he buys a Synth to help around the house. They name her Anita, and she is an instant hit with adorable little Sophie. Teenaged Toby is taken with her as well but for entirely different reasons, as he quickly develops a crush on the beautiful feminine Synth. Teen daughter Mattie, though, who is a very skilled computer programmer, is distrustful of the Synth. Worst of all, when Laura returns from her business trip, she is furious that Joe made this decision without her, a bit creeped out to have a Synth in the house, and soon also quite jealous at the way her family comes to depend on Anita.

Meanwhile, we see glimpses into other lives nearby, both Synth and human. George, an elderly man (played by William Hurt), has memory problems and relies on his equally-aging (and malfunctioning) Synth, Odi. The Health Service wants to replace Odi, but he has become like a part of the family to George. We see a pair of police officers who are tasked with investigating any crimes related to Synths (which are rare), and one of them goes home to a handsome Synth physical therapist in his house who is helping his wife recover from a car accident. Most intriguingly, we are introduced to a young man named Leo who seems to have a sort of family made up of Synths that are unlike the typical ones. He refers to a Synth named Max and another named Fred as his brothers, and in the first episode, visits a prostitute Synth named Niska, promising that he is trying to break her out. These unusual Synths that Leo knows seem to be more human-like, even able to feel pain.

Believe it or not, most of that is all packed into the first episode or so! There is a lot going on here, but it all comes together, with surprises and plot twists around every corner. Humans works on two different levels. It's a fast-paced, action-packed sci fi tale about the Synths themselves, their development, and whether or not they might be a danger to humans in some way. At the same time, though, the show also has a more thoughtful, emotional side. It focuses on how the Synths interact with humans (like how George relies on Odi or Laura is jealous of Anita) as well as the relationships  between humans. In addition, woven throughout are intriguing moral questions about the Synths and the ways they are used by humans, especially as we get to know those in Leo's family who seem to be conscious.  It's a compelling and intricate story with many layers that kept us watching every night until we'd finished the first season!

Season 2 of Humans is in production now and due out in 2016 in the UK and 2017 in the US (uh-oh, we may have to re-watch season 1 for a third time!). Season 1 is currently available for free on Amazon Prime. Watching the trailer makes me want to watch the whole season again now!

Monday, June 06, 2016

Movie Monday: A Walk in the Woods

Last week, with most of our favorite TV shows finished with their winter or spring seasons and summer TV shows not yet started, my husband and I decided to watch a movie one night. We chose from among the free movie options on Amazon Prime and settled on A Walk in the Woods, a movie based on Bill Bryson's hilarious memoir of walking the Appalachian Trail with a friend. We had both loved the book and also used to be avid backpackers ourselves. It turns out that those two things kept us from really loving this movie. It was light and pleasant but not much more.

In the movie, Robert Redford plays Bill Bryson (a real-life famous author whose memoirs and nonfiction books are often hilarious and always informative). The movie departs from the book in quite a few ways, so I will focus on the movie's plot here. Faced with aging and attending a friend's funeral, Bill decides to walk the entire Appalachian Trail. His wife, played by Emma Thompson, is not at all happy with his decision and is concerned about his safety, but he can't be dissuaded. He calls every friend he can think of, old and new, to find someone to accompany him, but most of them think he's crazy and have no desire to join his ill-conceived mission. One friend, though, does respond: Stephen Katz, a childhood friend from Iowa, who has had the opposite life that Bill's had, filled with trouble with alcoholism and the law, and never leaving their hometown. Katz is played by Nick Nolte, who is - by far - the highlight of the movie.

So, the two old friends (and I do mean OLD) fly to Georgia and set off on the AT. They hike along, meeting other hikers, encountering a few minor problems, with plenty of beautiful montages of scenes along the AT and some adventures off the trail as well.

I think this movie would probably be far more enjoyable if you have NOT read Bryson's book and if you have no experience of backpacking yourself. For us, the departures from the book made no sense and the two characters' experiences were so far off from reality as to be distracting. For starters, Bryson was in his 40's when he tried hiking the AT, not his 70's. I read that this was Redford's project, though, so obviously, he couldn't play the lead if it were a guy in his 40's. The part that really didn't make sense to us was that the funniest parts of the book don't appear in the movie - all the trouble and challenges Bryson and Katz encountered in trying to hike 10-12 miles a day with heavy packs with absolutely no experience and no preparation at all. In the book and in the movie, Katz was especially out of shape, so this led to some hilarious passages in the book (all told in Bryson's exaggerating style). In the movie, they just jumped right into hiking 10 miles a day carrying packs (which weren't nearly big enough for long-distance backpacking) with very few problems - two out-of-shape men in their 70's! OK, I'm done with with the rant.

So, why is this movie still enjoyable and not a total disaster? Because of Nick Nolte. He's always been a favorite actor of mine, and he does his thing here - acting like the gruff but lovable guy who's always getting into trouble. All of the laughs in the movie are his, and it's fun, as always, to watch him. Overall, the movie (much like the severely airbrushed photo on its cover!) is light and shallow, with a few thoughtful moments toward the end. It has some funny moments but is lacking in the kind of belly laughs induced by the book it is based on. It was a pleasant hour and 45 minutes with a few laughs, but I'm glad it was free! It actually had decent user ratings on Amazon and Redbox, so perhaps we were biased from our own experiences and enjoying the book so much.

A Walk in the Woods is available for streaming free on Amazon Prime and is available on DVD through both Netflix and Redbox.

If you are interested in reading some of Bryson's books, A Walk in the Woods is very funny and definitely recommended, but my favorite of his is The Life and Times of the Thunderbolt Kid, about his childhood in the 50's in Iowa.


Friday, May 27, 2016

Physical Therapy For Patients with ME/CFS

Copyright: 123RF Stock Photo
First, to clear up any confusion right away, these are NOT guidelines for using physical therapy as a treatment for ME/CFS. For more information on that topic, see my earlier post New ME/CFS Treatment: Manual Physical Therapy which includes details of a specialized form of manual therapy that uses nerve gliding for ME/CFS patients, to reduce pain and improve stamina.

Instead, this post is about guidelines for when someone who has ME/CFS needs physical therapy for another reason - an injury, post-surgery, specific chronic pain, etc. I recently developed some tendinitis in my right shoulder and, when resting it for several months didn't work, my doctor and I decided I needed physical therapy. I was very worried about getting a physical therapist who wouldn't understand about Orthostatic Intolerance (OI) or exercise intolerance, that I might end up working with someone who would push me too hard, resulting in post-exertional crashes.

To prevent that, I wrote up a simple 2-page set of guidelines for physical therapy when the patient has ME/CFS. The owner of our local PT clinic was thrilled with my summary, and each of the several physical therapists I worked with was very grateful and interested in learning about ME/CFS. I was thrilled by their open, welcoming responsiveness! I was just discharged from PT yesterday, and the whole experience was overwhelmingly positive. The owner of the PT office told me he would add my guidelines to their permanent files, where they keep information on various medical conditions that patients might have.

Here is a link to the pdf file of my document: Guidelines for PT for Patients with ME/CFS (I just learned how to link to a pdf file, so please let me know if there is any problem with this link!). Since it is a pdf file, you should be able to print right from this document and have a nicely formatted 2-page document to share with your physical therapist and/or doctor.

Wednesday, May 25, 2016

#MillionsMissing Awareness Campaign for ME/CFS - TODAY!

Sorry for the late notice (I just can't seem to catch up lately), but today is a worldwide ME/CFS awareness campaign called Millions Missing.

In locations all over the world, people sent their old shoes to Washington, DC, London, and many other global cities to create a vivid picture of how many people are missing from their own lives due to ME/CFS. One of those many protests is shown in the photo above.

There is still time to join in from home. Check out the ME Action website for more information on actions you can take for this global day of protest.

I just used their site to add a Twibbon (an overlay with #MillionsMissing) to my profile pictures on both Twitter and Facebook, and I explained on my Facebook page what it means. Here's what I wrote to my friends and family:

"Today is the #MillionsMissing awareness campaign for ME/CFS, to recognize the millions of people in the US and all over the world who are missing from their lives and/or missing out on favorite activities because of ME/CFS. I am lucky to have found some treatments that help me avoid being completely housebound or bedridden, but I do still miss a lot of my old life, including backpacking, hiking (longer than 1 mile!), running, vigorous exercise, working, and being able to get through a full day without a nap!"

Since my friends and family often see me out in the world, I added an explanation of the things I am missing out on and used a photo showing something I love that I can no longer do (backpacking). For others who aren't even able to leave their homes or beds, the photos of empty shoes are powerful symbols.
There are 5 other ways to join in and lend your voice (or a picture of your shoes) - see the link above at ME Action.

You can also read more news and posts on Twitter at #MillionsMissing.

Tuesday, May 24, 2016

TV Tuesday: The Night Manager

This winter, many of my friends in the UK were raving about a new TV series there called The Night Manager and starring Hugh Laurie (of House fame). Alas, repeated checks of Amazon, Netflix, and our cable On Demand showed that it wasn't available here in the US...but now it is! Being broadcast on AMC as a "miniseries event" (I guess that is how they are dealing with the shorter seasons typical in the UK), the first season, with 6 episodes, can now be seen by US viewers, too. We have seen 3 episodes so far and are enjoying this tense spy thriller.

The show is based on the novel of the same name by John le Carré. Jonathan Pine, played by Tom Hiddleston who has been rumored as a possibility for the next James Bond, works at a luxury hotel in Egypt as the night manager. He's happy with this quiet job after years in the military. A gorgeous hotel guest named Sophie attracts his attention. She is the mistress of Freddie Hamid, a notorious criminal who owns much of Cairo. Sophie gives Jonathan an envelope of confidential documents to copy, and when he does so, he sees that they include lists of illegal weapons and chemical warfare agents being sold to Hamid by a company called Ironlast, whose CEO Richard Roper, played by Hugh Laurie, is also a visitor to the hotel. Jonathan turns the documents over to authorities in England (where he is from), but his actions have devastating effects.

Jonathan flees Egypt and becomes night manager at a remote hotel in the Swiss Alps, where - 5 years later - Roper shows up again as a hotel guest with his entourage. A British intelligence agent named Angela Burr, played by Olivia Colman, contacts Jonathan to ask him to go undercover and become a part of Roper's organization. Still feeling guilt over what happened in Cairo and knowing from his military experience what harm this kind of weapons dealing can do, he agrees. From then, there is a complex process to help him get into Roper's inner circle.

It might sound a little bit complicated, but all spy thrillers start out that way, don't they? Once Angela recruits Jonathan, the plot is fairly straightforward. We are on episode three so far (the episodes are longer than usual for US shows, as is typical for the UK). The acting so far has been superb. We'd heard that from others with respect to Hugh Laurie (who here is a charming bad guy, whereas on House he was a good guy with no charm), but Tom Hiddleston is equally as good as the newbie undercover spy. The settings are incredible - gorgeous places all over the world. We are hooked so far and enjoying the suspense and tension.

We have been watching The Night Manager On Demand through our cable provider, as the episodes air on AMC (Tuesdays at 10 pm Eastern Time). They are also available for $1.99 on Amazon.

Have you seen The Night Manager yet? What do you think of it? What other thrillers do you enjoy on TV?

Sunday, May 22, 2016

Weekly Inspiration: Enjoying the Journey

I recently read The Love Song of Miss Queenie Hennessy by Rachel Joyce, an uplifting, funny,
warm story about a woman in hospice at the end of her life, waiting for her friend, Harold, to arrive (and, of course, also waiting to die). This is the companion novel to another excellent book, The Unlikely Pilgrimage of Harold Fry, which I also highly recommend (reviews of both books at the links - no spoilers!).

In the novel, Queenie writes while she waits, and her observations are often so insightful and beautiful that I filled several pages in my Quote Journal with them. Given Queenie's situation in hospice, her insights are almost always relevant to those of us living with chronic illness. I could easily write a post too long for you to read, but I will try to choose just a few of my favorites that feel extra-significant for us.
"You don't get to a place by constantly moving, even if your journey is only one of sitting still and waiting. Every once in a while, you have to stop in your tracks and admire the view, a small cloud and a tree outside your window. You have to see what you did not see before. And then you have to sleep."

I loved this one, and it's a point of view I often write about here on the blog. Just because we are sick - even if we are homebound or bedridden - doesn't mean we have to miss out on what is all around us. Look out your window and watch the changing seasons, the clouds moving across the sky, and listen to the birds. Read wonderful books, watch riveting TV shows, enjoy uplifting movies that make you laugh or cry tears of joy. Look online at photos of beautiful artwork, listen to music that lifts your spirits, read poetry that moves you. There is plenty of joy to be had in life, even if you are currently stuck in one place, feeling in limbo.
"The sky and the sun are always there. It's the clouds that come and go. Stop holding onto yourself, and look at the world around you. ...You're upset. You're frightened. So what can you do? You can't run anymore. Those days are over. You can't make the problem beautiful by dancing. You can't even prune it. Those days are over, too. So, the only thing left for you to do now is to stop trying to fix the problem.

...Don't try to see ahead to the nice bits. Don't try to see ahead to the end. Stay with the present, even if it's not so good. And consider how far you've already come."

This passage also touched me. I think it is easy with these illnesses to fall into the trap of just waiting - for things to get better, for things to change. I know I did in the early years. But your life is still here, right in front of you, even if it is now a much more limited life. It is easy to regret the past or look forward to the future but more challenging (though also far more rewarding) to just live in the present.
"All journeys have secret destinations of which the traveler is unaware."
          - Martin Buber, The Legend of Baal-Shem

This quote was at the start of the novel, and it immediately struck a chord with me. So many positive things have resulted from this unexpected journey of chronic illness (14 years and counting) - things that I never could have foreseen. With three of the four of us sick at home together for many years, our family became very close. We spent a lot of time together and relied on each other for enjoyment, as well as support and care. Now that our sons are both young adults, those bonds that formed during our worst years are still strong.

Just this week, we got together with four other families in our local area - the original members of the local support group I started six years ago. Yes, we still talked about medical issues and traded doctor recommendations and treatment advice over dinner, but these people have become some of our closest friends now. We share an unusual bond - something that no one else can really understand. When we get together, even if we're just talking about trivial things, we always know that the others "get it" without us having to explain. You can refer to needing to lie down in a public place or having to stay home from school or any other things that are a normal part of our lives and see smiling faces and nodding heads instead of looks of pity. We can even laugh together over the horror stories - the clueless doctors or passing out suddenly. They're our people. And they are wonderful, caring, fun people that we never would have met without this illness.

The same goes for all of the people we've met online (yes, I'm talking to YOU!). Helping others has always been important to me (I even chose a career where I felt like I was improving the world), and our experiences with this illness have allowed us to reach out and help hundreds of other people, all over the world. I never would have dreamed of any of this before I got sick, but now it feels like being able to help others makes our own suffering more worthwhile.

So, yes, this journey has brought with it many destinations that I never expected. Of course, if I had a choice, I would prefer that my sons and I had never gotten sick, but this journey has taken us to some pretty amazing places that have enriched our lives in unexpected ways.

Have you read either of these novels? How do you remind yourself to live in the present and enjoy this moment? What unexpected destinations has this chronic illness journey brought you so far?

Please share your experiences in the Comments section - and stop today to remind yourself to live in the moment and notice what is around you!