Monday, January 30, 2017

Movie Monday: Rogue One: A Star Wars Story

Two weeks ago, my husband and I went out to the theater to see Rogue One: A Star Wars Story. We don't often get out to the theater, but this is one we definitely wanted to see on the big screen. It didn't disappoint. Rogue One is an excellent addition to the Star Wars canon, and we both enjoyed it very much.

First, let me explain something that took me a while into the movie to figure out: when Rogue One takes place in the Star Wars timeline. The events in this movie take place immediately before the original Star Wars movie, A New Hope (that would be the fourth episode, but the first one to come out, in 1977). So, it is kind of like Episode 3 1/2. Once you see it, you understand that the events in the original Star Wars movie occurred just after this.

OK, now that that is out of the way, here is a brief overview of the plot set-up. A scientist named Galen Erso is kidnapped in the first scene by Empire stormtroopers and forced to work with them to complete building the Death Star. Galen's little girl, Jyn, successfully escapes and hides from the stormtroopers and is then rescued by Saw Gerrera (played by Forest Whitaker), a friend of her father's. Saw brings Jyn up and when she is a young woman (played by Felicity Jones), she meets up with Cassian (played by Diego Luna). Eventually, she decides to join the Resistance with him. They are accompanied by an old Empire robot named K-2S0 and an old, blind man named Baze (played by Wen Jiang) who knows how to use the Force.

After joining the Rebel Alliance, they go off on their own on a rogue mission to steal the plans for the Death Star from a heavily armed Empire data facility and name their ship (you guessed it) Rogue One. As I'm sure you know if you've ever seen any Star Wars movie, this is a great simplification of a very complex plot. Suspense builds, with good versus evil, their rogue mission, and a great battle scene at the end.

My husband and I both enjoyed Rogue One and found it to fit nicely into the Star Wars canon, with all of the elements you would expect: interesting characters, nasty bad guys, a noble but seemingly doomed mission, and massive battle scenes. I was a bit hesitant to see this one because I had heard some reviewers criticize it for a lack of humor, pervading darkness, and too-lengthy battle scenes (something I don't have much patience for). I didn't find any of this to be true, though! We both thought the tone of the movie was well-balanced and that it had a nice sense of humor (much of the humor comes from the robot, K-2S0). As for the battle scene at the end, it was just right - exciting and suspenseful, not at all boring, and just the right length. Bottom line: we both enjoyed it very much and liked seeing what led to the events in the original Star Wars movie.

You can still find Rogue One in a few theaters, but it is on its way out, so hurry! It is due out on DVD in April 2017 and should be available via streaming sometime before that (TBA) - you can use the Amazon link below to pre-order.

Have you seen Rogue One yet? Which is your favorite Star Wars movie?

Sunday, January 29, 2017

Weekly Inspiration: The Hidden World of Invisible Suffering

One positive thing that has come out of my 15 years of living with ME/CFS is that I have become more empathetic and compassionate toward others. Experiencing an invisible illness myself has made me realize that everyone you meet has some sort of - often invisible - challenges they are dealing with, too. It makes you a kinder person to realize this and can also help to deepen your connections with other people.

I wrote this article for ProHealth which was published on their site in December. Here's a link to the article on the ProHealth website, and I have included the full text here in today's Weekly Inspiration post, too. It further explains what I have learned about The Hidden World of Invisible Suffering and also offers tips on becoming more compassionate and connecting with others whose challenges might be different than yours. In this article, I share some stories from my own life.

What are your stories about meeting others or realizing someone else has his or her own challenges? Please share your experiences in the comments below. It is so important that we learn to be kind to each other in this chaotic, stressful world we are living in!

The Hidden World of Invisible Suffering

When I first became sick with ME/CFS almost 15 years ago, it was like a curtain was pulled back on a hidden world I never before knew existed. One of the most important things my years of chronic illness have taught me is that everyone has their own challenges, and they are often invisible to those around them.  Over the years, I have been surprised again and again to discover that people around me – both new acquaintances and old friends – have their own challenges to deal with behind the scenes. Recognizing this hidden world of invisible suffering has enriched my life, making me a more empathetic and compassionate person, and improving my personal relationships.

I recently learned that an old sorority friend has had lupus since we were in college together; I never knew she was hiding a complex, serious chronic illness. Another old college friend reached out to me when I published an article titled What To Do When a Loved One Becomes Chronically Ill. She explained that her mother had terminal cancer and thanked me for writing the article, saying that it really hit home for her and expressed her own feelings about what her family needed. I lost my own father to cancer last year, so I was especially moved to find out what she was going through.

Many years ago, I was sitting on the sidelines of a soccer field, watching my younger son play for his middle-school team, with my older son (who also has ME/CFS plus three tick infections) sitting next to me. I was feeling isolated – and a bit sorry for myself – because most of the other parents were standing in a group, talking and laughing, as they always did. I struck up a conversation with another mom sitting, like me, in a low chair nearby.

As we talked, we discovered that we both had chronic illnesses, and her daughter was sick, as well. She had fibromyalgia and her daughter had been diagnosed with both fibro and lupus, but she was concerned she had Lyme. We discussed the challenges of Lyme disease in our area, treatments that had helped each of us, the latest research, and more. Just like that, a bond was formed, and we talked for the rest for the rest of the game like old friends. It was like saying a code word and finding out we were both in the same secret club!

Things like this have happened to me over and over again since I first began living with chronic illness. With invisible illnesses, we often feel as if we are all alone and no one understands us, but there is a whole hidden world out there of people just like us. You never know – the person sitting next to you at a school function or driving in front of you or sitting in your doctor’s waiting room might have a similar illness.

It’s not just that there are others with chronic illnesses, though. There are plenty of people who are perfectly healthy but are dealing with their own serious challenges behind the scenes – perhaps their child has severe learning disabilities or a loved one is battling cancer or their marriage is falling apart. Once you recognize that everyone has his or her own challenges, this hidden world of suffering is revealed. This understanding has helped me to become less self-absorbed about my own problems and to develop more compassion for other people.

Here’s how you can tune in to this hidden world of invisible suffering and enrich your life and relationships:

Be Open & Honest about Your Challenges – This comes naturally to me but is very difficult for some people. If you are used to hiding your illness or pretending everything is fine, first practice being more open and honest with your closest friends and family…without self-pity. Your attitude will usually set the tone for your loved ones to follow, so let them know when you have to sit down (or lie down) or why you can’t do something they are proposing. A matter-of-fact approach usually works best: “ I would love to take a walk, but unfortunately, my illness limits my stamina – walking today would make me sicker tomorrow.” When an acquaintance asks why you’re not standing up with the crowd, explain simply, “I have a chronic illness and can’t stand for long.” Often, your openness will open the door for others to share their challenges, as well.

Recognize & Respect That Everyone Has Their Own Challenges  - Your honesty will often encourage others to be honest. Be open to discovering other people’s challenges. When people do tell you about what’s going on in their lives, be an active and engaged listener. Set aside any resentments or self-pity and truly listen.

It’s Not a Contest – Don’t compare challenges! This is probably the most important point (and one I need to keep working on constantly). When you suffer from serious illnesses that severely limit your life, it is easy to feel resentment or bitterness when someone else tells you about his or her challenge, which might seem like nothing to you compared with yours.  Reject that inclination and dig deep for empathy. Listen attentively and offer compassion when someone else shares a challenge with you – it will enrich your relationships and help you feel less isolated.

Offer Empathy and Compassion - When you find out that someone else is suffering, let him or her know that you understand and that you care. They need the same kinds of reassurances and compassion that we do. Simple phrases like “I’m so sorry you are going through this” or “I’m thinking of you” can mean a lot. Just consider what you wish people would say to you.

Recognizing that everyone around you is dealing with their own hidden suffering, just like you are, can open up your world to greater compassion and closer relationships. It can take some practice – especially learning not to compare others’ challenges with your own – but the rewards are great. Listening respectfully to someone else’s challenges that are different than yours can enrich your relationships. In giving more empathy and compassion to other people, you will get more back in return.

Tuesday, January 24, 2017

TV Tuesday: Mercy Street

I had two pleasant surprises today at lunchtime - first that I was alone for an hour (a rarity during my sons' winter break from college!), and second that Mercy Street has just started its second season on PBS. I am really enjoying this historical drama about a hospital in Virginia during the Civil War.

The drama centers on a makeshift hospital in Alexandria, Virginia, during the Civil War. Although Virginia is a southern state, Alexandria (very close to D.C.) has recently been conquered by the Union so that slaves have been freed, though there are still plenty of loyal Confederates in town who aren't happy with the situation. The "hospital" is a hotel in town that has been turned into a medical facility to treat wounded soldiers on both sides (though partisan medical personnel aren't always too happy about that).

Into this tumultuous environment comes Mary Phinney, played by Mary Elizabeth Winstead (in a very different role than as Laurel on BrainDead), a northerner who lost her husband and has come to the hospital to help care for wounded soldiers and work as a nurse. Ambitious head nurse Anne Hastings is not at all happy to have Mary on board. Dr. Jebediah Foster, played by Josh Radnor of How I Met Your Mother fame (it took me a while to recognize him here!), is glad to have the extra help, though, and he immediately sees that Mary is capable and responsible. Other doctors, nurses, and support people round out the hospital's staff.

Meanwhile, Emma Green, played by Hannah James, also begins volunteering at the hospital, just to visit and support the soldiers there - the Confederate soldiers. Emma's family is a prominent one in town - they actually own this hotel - and is appalled by what is happening to their town and their way of life. Emma hopes to provide some much-needed moral support to their wounded boys. Gary Cole plays Emma's father, who is being pressured into signing papers to officially side with the Union, a thought that disgusts him.

We see the black citizens of Alexandria, too, working at the hospital. Though officially free, they all work very hard, have difficult lives, and are still often mistreated. McKinley Belcher III plays Samuel, a well-spoken young man who works at the hospital. Aurelia, played by Shalita Grant (another surprise whom I didn't recognize at first, from NCIS: New Orleans), has been separated from her husband and small son and hopes to find them one day. One white administrator at the hospital is abusive to her, preying on her hopes to reunite her family.

And all of that is just the beginning! There is a LOT going on in this show - with the hospital staff, their patients, and the people who live in town and interact with them. I am not generally a fan of period movies or TV shows (I have no interest in Downton Abbey, for instance), but I am finding the historical setting here fascinating - perhaps because it is close to home but so very different from our world. Medical treatment in the 1860's is particularly intriguing - and often gruesome - like when the doctors are arguing over whether to use chloroform or just operate on someone while they're awake!

The cast here is amazing - all are very talented, and it's interesting to see some familiar faces in VERY different roles. I am particularly drawn to Mary and to Dr. Foster. It took me a couple of episodes to get into the show because it is somewhat complex, with a lot of different characters, but now I am hooked. In addition to the normal happenings in the hospital and the war going on outside of it, there are some big incidents that move the story forward, like a plot to assassinate Lincoln when he visits the hospital and, at the start of season 2, the possibility of a smallpox outbreak. The show combines action, suspense, drama, and romance. I am really enjoying it and can't wait to see what season 2 brings now!

Season 1 of Mercy Street is available for free on Amazon Prime (link below) or for $1.99 an episode On Demand. Season 2 - which just aired its first episode - is just the opposite, free On Demand or $1.99 per episode on Amazon. However, you can see ALL episodes of Mercy Street - seasons 1 & 2 - free on the PBS website. It is also available on DVD.

Have you tried Mercy Street yet? What do you think of it?

Monday, January 23, 2017

Movie Monday: Mr. Holmes

Two weeks ago, with our 22-year old son home for a rare evening with us, the three of us chose a movie, Mr. Holmes (tough to find one we all agree on!). It's about an elderly Sherlock Holmes, struggling with dementia and trying to recall his last case.

As the movie opens, Holmes, played by Ian McKellen (aka Gandolf), is returning to a bucolic cottage in the country from a trip to Japan. He is elderly now and is struggling with memory loss; in fact, he traveled to Japan in search of an old folk remedy. He lives at the cottage alone but has the help of a housekeeper, played by Laura Linney, who lives next door. Her young son, Roger (played by Milo Parker), is intrigued by Holmes and has been reading the stories of his mysteries that Watson wrote. Holmes is a bit of a grumpy old man here, and focused solely on his memory problems, but he gradually grows fond of Roger.

Holmes is trying to recall and write down the details of his last case, the case that led him to retire, and the woman who was at the center of it. Bit by bit, often agonizing over his inability to remember, Holmes writes the story of this case, as small momentos or other clues bring back memories of what happened. So, while the movie is taking place in the present, where Holmes is elderly, some scenes go back to the past, recreating that last case and the woman whose memory haunts Holmes.

This film was different than we expected - with its older, gentler, struggling Holmes - but all three of us ended up enjoying both its drama and its mystery. There are hints of the classic Sherlock Holmes, both as he recalls that last case and also as he confronts a small, present-day mystery that affects Roger. Meanwhile, we watch the relationship between Holmes and Roger grow and become significant to both of them.

It was an enjoyable and intriguing movie, a quiet mystery wrapped in a family-type drama about aging, with greater emotional depth than we first expected. The actors were all excellent, and the story kept us guessing.

Mr. Holmes is out on DVD and is currently available for free on Amazon Prime (link below) or on Netflix DVD only.

Sunday, January 22, 2017

Weekly Inspiration: Moving TED Talk on ME/CFS

We have arrived, folks!

I often look to TED Talks for inspiration and post them here on my blog's Weekly Inspiration feature. I have discovered all kinds of TED Talks that feel relevant to me, no matter the subject matter or speaker. But now, ME/CFS patients all over the world have our own voice in the TED Talk world, Jen Brea. And what a talk it is! My husband and I were both in tears by the end of Jen's articulate and moving talk, as were much of her audience.

Jen Brea is a severely affected ME/CFS patient who created (mostly from her bed) a fabulous new documentary about ME/CFS called Unrest (it was previously titled Canary in a Coal Mine). It is premiering this month at the Sundance Film Festival!

Jen's TED Talk is all about her own personal experiences with ME/CFS, the difficulty in getting an accurate diagnosis, and the experiences & plight of all ME/CFS patients. Check it out:

Watch the audience in this talk. Many of them are in tears (as we were) and they gave her a standing (silent) ovation. And this is an audience of healthy non-ME/CFS people! This talk can help tremendously to spread the word and build awareness about how devastating ME/CFS is and how desperately more research is needed.

And for us, the audience of those who also have ME/CFS, Jen's talk feels intimate and personal - she is telling OUR story to the world. Watching it, I felt deeply moved and understood. When she mentions how she found others like herself online, tears came to my eyes - I know that feeling.

I rarely even mention ME/CFS on my main Facebook page, where I interact with family & close friends, but I plan to post this talk. She explains this disease better than I can.

I can't wait to see the documentary!

Today's inspiration is feeling understood and spreading the word - thank you, Jen!

Saturday, January 21, 2017

URGENT: Tell Senators How Repealing ACA Will Affect You

Even though most of us live in virtual caves, you still couldn't miss all the news these past two weeks about efforts to repeal the U.S. Affordable Care Act (ACA). Both the House and the Senate have already voted to begin the process of repealing it, with a target date of January 27 (you can read details at the links of each vote). And Trump's first act as President yesterday was to sign an Executive Order stating that the states do not have to comply with the ACA. Many Americans think this is a good thing because all they know of the ACA is its requirement for all citizens to have health insurance and its insurance marketplaces, which have struggled in many states.

However, there is a LOT more to the ACA than just the insurance mandate and the marketplaces. The ACA includes provisions that directly and seriously affect everyone with a chronic illness. We may soon find it difficult - if not impossible - to get affordable health insurance from any source. If you think health insurance is expensive under the current system, just wait.

You can read an easy-to-understand summary of the full Affordable Care Act on the HHS website. Pay particular attention to the items under "New Consumer Protections" and "Increasing Access to Affordable Care." Here are a few of the many provisions of the ACA that directly affect those of us with chronic illness:
  • Children with pre-existing conditions may not be denied coverage.
  • Insurance companies may not rescind coverage (there used to be a practice of dropping someone for a minor technical issue when they got sick and tried to use their insurance).
  • ACA eliminated lifetime limits on insurance coverage.
  • ACA eliminated annual limits on coverage.
  • Consumers can appeal decisions made by the insurance company.
  • Even citizens with pre-existing conditions will be guaranteed health insurance coverage.
  • Young adults can stay on their parents' insurance plans until age 26.
  • Limits on insurance companies' rate hikes.
  • Linking Medicare payments to hospitals with their quality of care - the better their patients fare, the more money they can make.
  • Prohibiting discrimination based on pre-existing conditions or gender.
That's just the tip of the iceberg - you can read the full list on the HHS website. Everywhere that is says "pre-existing conditions" - that's us. Without ACA in place, insurers can outright refuse to sell insurance to chronically ill people or can make the insurance for us so outrageously expensive that we can no longer afford insurance. The other piece that is very important to my family - and to many of yours as well - is allowing kids to stay on their parents' insurance until age 26. Our son is now 22, and with ME/CFS, plus Lyme and two other tick infections, he is not well enough to work full-time or support himself.

So, what can you do to stop this seemingly unstoppable action? Well, the new President and Republican-controlled Congress are determined to repeal the ACA. But to do so without anything to replace it is irresponsible. They are pulling the rug out from us - and millions of other sick Americans - with only promises that there will be a replacement. We can ask that this process is slowed down and that a replacement is created as soon as possible...preferably before the ACA is officially repealed.

I heard there are 5 Republican Senators who are already in favor of slowing this process down so that it is done right. I have written to these 5 Senators by e-mail to let them know how the ACA affects us, and how its repeal with no replacement would be devastating to us. You can, too. Here are links for e-mailing the 5 Senators or you can call their offices (though I have heard people are having trouble getting through):

Senator Bob Corker, TN - (202) 224-3344

Senator Lisa Murkowski, AK - (202) 224-6665

Senator Rob Portman, OH - (202) 224-3353

Senator Susan Collins, ME - (202) 224-2523

Senator Bill Cassidy, LA - (202) 224-5824

While you're at it, send that same e-mail to your own Senators & Representatives! They will be hard at work on this issue for the next week, so let them know how the ACA affects you and the urgent need for a replacement with many of the same provisions. I found these e-mail addresses just by typing the name, Senator or Representative, and e-mail into a search engine.

Here is the note that I sent to all five (and am now sending to my own Representative (Delaware only has one!) and Senators. Please feel free to copy whatever parts of it apply & then add in your own or your family's experiences & situation. You note doesn't have to be long (I tend to be long-winded!) - just let them know you are here and that heir actions will dramatically affect your life.

We may be sick and often (or always) housebound, but we can still let our voices be heard!

My e-mail:

"I do not live in Alaska, but I represent the needs of citizens across the U.S., as leader of online support groups for those with chronic illness and parents of sick children. I heard that you were one of several Senators in favor of slowing down the process of repealing the ACA, so I wanted to let you know how the ACA protects families like ours, and how its repeal, without anything to replace it, would be devastating to millions of families across the US.

I have been sick with a chronic immune disorder for 15 years that prevents me from being able to work, and I have also struggled off and on with recurring Lyme disease. My oldest son has the same immune disorder (it is genetic), and has very severe Lyme disease, plus two other tick infections; he's been sick for almost 13 years and is now 22 years old. Our youngest son, now 19, also had this same genetic immune disorder for 10 years, but fortunately, his was mild, and he is now fully recovered.

As you can imagine, our medical expenses are sky high. We have excellent health insurance through my husband's employer (I can no longer work), but we still have about $20,000/year in out-of-pocket medical expenses. That does NOT count our portion of the insurance premiums, an additional amount that is automatically taken out of my husband's paychecks each month.

The Affordable Care Act protects us in several ways, though its name alone has become a political lightning rod. We want Congress and others in power to understand that the ACA should not be used to make a political point - families across the U.S. rely on its provisions. The public focus has been on its insurance marketplaces, but the ACA is much, much more than that.

Specifically, the provisions of the ACA that deal with pre-existing conditions affect us and other sick families deeply. If the ACA were completely repealed, with nothing to replace it, then insurance companies could deny us coverage entirely or make our rates so high that we can no longer afford insurance. We already have outrageous medical expenses; without insurance, we would probably lose our house. ACA prevents insurers from taking advantage of sick people. In 2 years, my husband will retire, and we will be buying health insurance on the open market. If these provisions for pre-existing conditions are repealed, I will not be able to get affordable health insurance.

Another part of ACA that affects us and all the other families I represent is the provision that allows us to keep children on our family insurance until age 26. Without this provision, our son would be in big trouble. At 22, he is not healthy enough to work full-time or support himself (he is working his way through college, a few classes at a time, and will graduate next year). Without the ACA, he would have to get his own insurance...and again, insurance companies could either deny him completely or make the rates so high that we couldn't afford it. In any case, it would be far more expensive than keeping him on our family policy.

If Congress believes that ACA is not working as currently written, then it needs to be revised or replaced, not simply repealed. To repeal it without another option ready to go into place is irresponsible and leaves millions of sick Americans - including many, many children - in serious trouble. It's political posturing without regard for its effects on American citizens. There are between 1-2 million American adults with the same debilitating immune disorder my son and I have (the number of children has not been counted) - and that is just ONE disease.

Please do all you can in your position to slow down this process and come up with an alternative to ACA before pulling the rug out from under citizens like us.

Thank you for your time and concern for Americans like us -

Suzan Jackson"

Friday, January 20, 2017

ME/CFS Advocate Named an Oprah Health Hero!

The January issue of O, the Oprah Magazine, has a feature article called

O's 2017 Health Heroes: 
Our first annual tribute to the many faces of health and healing

Among the 14 people chosen by O as 2017's Health Heroes is our very own hero, Carol Head, President of Solve ME/CFS, an organization that supports and fosters ME/CFS scientific research as well as advocacy efforts.
You can read Carol's accolades here (along with the rest of the article). It's a brief paragraph, but it explains that ME/CFS is a very real and serious illness that makes its patients feel sick, not just tired.

Best of all, this brief tribute to Carol (which, by the way, is well-deserved) appears in a very popular mainstream magazine with over 2.4 million readers! That's good for all of us!

So congratulations to Carol for this wonderful recognition...and congratulations to all of us with ME/CFS who can use all the positive publicity we can get!

Tuesday, January 17, 2017

TV Tuesday: Good Girls Revolt

As I've mentioned here before, I use my lunchtime to watch shows just for me (in a house with 3 men, I don't get that chance very often!). With my sons home for winter break now, my alone time is limited (my older son and I watch NCIS at lunchtime instead), but I took advantage of a few days on my own last week and my husband's business trip to finish watching the first season of Good Girls Revolt on Amazon Prime, a new-ish show based on real-life events.

This show is SO good!! You must watch it! Hmmm...guess that's not much a a review is it? Let me try again...

Good Girls Revolt is set in NYC in 1969 and is based on a nonfiction book with the same title by Lynn Povich. The real-life story is about a group of women working for Newsweek who sued the magazine because they weren't allowed the writing jobs that men had; they were relegated only to support positions. The Civil Rights Act of 1964 was still fairly new and had not been applied much yet to women's equal rights.

The TV show is based on the book but fictionalized, about a group of young women working for "News of the Week." As in real life, they are only allowed to be secretaries and researchers. Even when they do much of the writing and/or editing of an article or are the creative force behind a great story, they get no credit or byline - those go solely to the men at the magazine. Though this is the way things have always been, the young, ambitious women there slowly, gradually realize that this situation isn't fair and they want more.

The show focuses on several young women. Genevieve Angelson is in the lead as Patti Robsinson, probably the most ambitious of the young women and the one who first recognizes the disparity. She is the researcher for reporter Doug, played by Hunter Parrish, whom she also has a personal relationship with. Cindy, played by Erin Darke, is a quiet, mousy young woman who works writing captions for photographs (again, secondary to a male photographer). Cindy is married but not happy; her husband expects her to be a typical 60's wife and mother, but Cindy loves her job and doesn't want to leave it. He's given her a 1-year deadline to quit work and "settle down." Jane, played by Anna Camp, is different than the other "working girls" because she comes from a wealthy family. She is also a researcher at the magazine, supporting a male reporter, but her father sees her job as just a fun lark until she gets married to the country-club boy she's been dating. There are many other young women in the newsroom, all played by wonderful actresses, rounding out the group of "girls" in the office. And I loved seeing Grace Gummer as Nora Ephron in a few episodes (she doesn't last long under the restrictions at News of the Week)!

That's the basic plot, with the first season focusing on the women pulling together and trying to get support for their cause, while keeping it a secret from the men in the newsroom. However, the show also delves into their personal lives and pulls in all sorts of different aspects of "the women's movement" that was just starting at that time: roles as wives and mothers, social unrest in the general population, and a growing awareness of sexual freedom, too.

It's fascinating to see what it was like for women in 1969 and the kinds of things we now take for granted. But that's not all. The show does an incredible job of depicting 1969/70 with beautiful costumes, scenes of social unrest in the city, and fascinating settings. It's a gorgeous, enthralling show to watch but focused on some serious and engaging issues, too.

I just finished the first season last week, and I absolutely loved it! The show really grew on me, episode by episode, until I was completely hooked. The acting is superb, the writing outstanding, and the sets and costumes perfect. Plus, of course, there is the outrage at what the women put up with, as you root for them to see what is possible and be successful in their quests for freedom and equality. All in all, it's an excellent show and highly recommended.

This is an Amazon Prime original show, so it is available exclusively on Amazon (link below). I hope there will be a season 2...and I want to read the book, too!


Sunday, January 15, 2017

Weekly Inspiration: How to Live Passionately

On this lovely, sunny (sun, finally!) Sunday morning, I browsed through the TED Talks homepage, looking for some inspiration to share with you. I came across a short talk by Isabel Allende (an acclaimed novelist) called How to Live Passionately, which sounded promising. I enjoyed watching it - Allende has a good sense of humor. It turned out to be focused on aging...but I still think this is an inspirational talk for anyone at any age, all about living your life with passion, with meaning, and with joy. Check it out (it's a short one - just 8 min long):

Toward the end, she says something along the lines of " always have choices, unless you are ill or very poor." But I would disagree with that last part. Yes, true, we have far fewer choices when living with chronic illness - I can't go backpacking like I'd like to and must spend every afternoon napping - but we DO still have significant choices to make in how we live our lives. We can choose our attitudes, we can choose which people we associate with (whether online or in real life), and we can choose to look for joy in every day. In fact, I wrote a blog post years ago called Finding Joy in Every Day, with some great tips in case you are struggling with that.

How do you live your life passionately? What choices do you make that enhance your life?

Wednesday, January 11, 2017

Canadian Genetic ME/CFS Study Looking for Identical Twins

A Canadian ME/CFS genetic study is looking for identical twins where at least one of the twins (or both) has ME/CFS. Here are the details - please contact the study coordinator listed at the bottom of the page directly, using the e-mail link highlighted. It's always a win-win when you can participate in research and help move the science forward for all of us!

MEFM Society of BC
A senior Canadian researcher has been looking for genetic factors in people with ME/CFS for several years. His studies have already yielded promising results. The next stage of his study involves looking at identical twins where both twins have ME/CFS (“concordant”) or one of the twins has ME/CFS and the other does not (“discordant”). He has already found three sets of identical twins for his study but hopes to find more.

If you are identical twins with discordant or concordant ME/CFS, please contact me at to learn more about the study and what it would involve from you.
I am interested in hearing from identical twins affected by ME/CFS anywhere in the world. There are two reasons.

· Firstly, while this researcher hopes to find enough cases in countries where he has collaborators (Canada, the US and New Zealand), he might need additional cases and might be able to work out suitable arrangements for twins in other locations to participate as well.

· Secondly, I suspect that other researchers will want to do twin studies. This will give us an indication of how easy or difficult it is to find volunteers and a list of possible volunteers. Please note that if a researcher asks me for names of twins, I will notify you about the study and ask you for permission to share your names; I will not give your names to researchers without notifying you and receiving your permission.

Please share this request widely. And if you know identical twins in this situation, please encourage them to contact me. Thank you!

Margaret Parlor
President, National ME/FM Action Network
National ME/FM Action Network
512, 33 Banner Road
Nepean, ON K2H 8V7 Canada

Tuesday, January 10, 2017

TV Tuesday: Favorite TV Shows of 2016

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Yesterday, I summed up my Favorite Movies Watched in 2016, so today it's time for TV to get its due. It was a GREAT year for TV shows! There is just SO much available now, between streaming services (we joined Netflix last year), cable channels, and networks, that it's impossible to keep up with all the amazing shows - but we gave it our best! In fact, our movie viewing fell way off last year because we were watching so much TV.

The full list of TV reviews I wrote this year (35 in all!) is included below, and these have all been added to my TV Reviews tab (along with the ones previously reviewed). They are sorted by genre. Just to be clear, I only write reviews of shows that I enjoy, so everything on this list is worth watching!

And here are a few superlatives to whet your appetite:

Best Comedy

This show is just so incredibly unique (some might say weird). It tickled our funny bones all summer. Besides being funny, it is also a sci fi story about aliens and a political drama set in Washington, DC - yeah, you just have to see it for yourself.

Best Drama

This new fall show really grabbed our attention, and we can't wait to see more! It's about a terrorist attack that destroys the US Capitol and most of the Cabinet and Congress, leaving the Designated Survivor as President, the HUD Secretary played wonderfully by Keifer Sutherland. It's a crime show and political drama all rolled into one, with a great cast and a lot of mysteries to be solved.

Best Dramedy
I had trouble choosing just one from this list of great shows, but Orange Is the New Black still rules for its originality, cast, writing, and mix of both humor and drama. We can't wait for the next season!

Best Crime/Mystery/Thriller
Again, a tough choice with so many great shows to choose from, but The Americans has stood the test of time and continues to be one of our favorite shows, year after year. Its story of a pair of Russian spies masquerading as a normal American family in the 80's is suspenseful and compelling, and we can't wait for the new season to start!

Best Sci Fi
Sci fi is one of our favorite genres, and we love all the shows on this list, but Orphan Black is Just. So. Good. It's one of the few shows our college son comes home to watch with us, and the three of us are completely hooked. It's an original premise with great acting, great writing, loads of suspense, and a wonderful sense of humor. And Tatiana Maslany deserves a whole room full of Emmys for her multiple roles as a dozen different clones.

Best Netflix Original Show
We binge-watched this show with our son this summer and loved every moment of it! An original plot harking back to the 80's in feel, look, and pop culture references, we were completely won over by this one.

Best Amazon Prime Original Show
An impossible choice! My three contenders in this category - Bosch, Transparent, and Catastrophe - are all so very different and all excellent. But season after season, Transparent brings gut-wrenching drama and laugh-out-loud humor. This is one seriously dysfunctional family, but they love each other.

In addition to the reviews listed below, also check out my post, When Good Shows Get Cancelled, a round-up of One-Season Wonders still worth watching!

KEY: Available on:
AP = Amazon Prime
C = Cable and/or Cable On Demand
H = Hulu
I = On network’s own website
N = Netflix

BrainDead (C, I, AP) - CBS
Grace and Frankie (N) - Netflix
Unbreakable Kimmy Schmidt (N) - Netflix

Designated Survivor (C, I, AP) - ABC
Feed the Beast (C, I, AP) - AMC
The Fosters (C, I, AP, N) - Freeform (formerly ABC Family)

Dramedy (both Comedy & Drama)
Catastrophe (AP) - Amazon Prime
Freaks and Geeks (N) - NBC (now exclusively on Netflix & DVD)
The Girlfriend's Guide to Divorce (C, I, AP, N) - Bravo
Love (N) - Netflix
Orange is the New Black (N) - Netflix
This Is Us (C, I, AP) - NBC 
Transparent (AP) – Amazon Prime
Younger (C, I) – TV Land

American Crime (C, I, H, AP) - ABC
The Americans (C, I, AP) - FX
Aquarius (C, I, AP, N) - NBC
Bosch (AP) - Amazon Prime
The Catch (C, I, AP) - ABC
Conviction (C, I, AP) - ABC
Dexter (I, N, AP) - Showtime
Legends (C, I, N) - TNT
The Missing (C, AP) - BBC (UK), Starz (US)
NCIS (C, I, AP, N) - CBS
NCIS: New Orleans (C, I, AP) - CBS
The Night Manager (C, I, AP) - BBC (UK), AMC (US)

Sci Fi
Colony (C, I) - USA
Frequency (C, I, AP) - CW
Humans (C, I, AP) - Channel 4 (UK), AMC (US)
The Last Ship (C, I, H, AP) - TNT
Orphan Black (C, I, AP) - BBC America
Stitchers (C, I, AP) - Freeform (formerly ABC Family)
Stranger Things (N) - Netflix
Timeless (C, I, AP) - NBC
Wayward Pines (C, I, H, AP) - Fox

Monday, January 09, 2017

Movie Monday: Favorite Movies Watched in 2016

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Time for a recap of the movies I saw this past year and which were my favorites. You can find a full list of ALL of my movie reviews (these recent ones plus past years) under the Movie Reviews tab.

We watched a total of just 19 movies in 2016, quite a drop from the 54 movies we watched in 2015! My husband and I had a lot more free time together this past year, with our nest emptying in September, but I think our movie-watching went down as our TV watching ramped up even higher! With streaming services, cable channels, and networks, there are just SO MANY great TV shows on now that it's tough to keep up with them all. But, more on TV tomorrow, with my 2016 TV Summary.

So, we watched 19 movies, in a nice mix of different genres (see the full 2016 list below, with links to my reviews - no spoilers!). Now, for some superlatives:

Best Suspense/Thriller
Eye in the Sky
We watched plenty of good suspense/thrillers (my husband and sons' favorite kind of movie), but I think that Eye in the Sky takes the prize because of its sheer emotional power. It's very suspenseful with lots of tense moments, but it also really makes you think, about the real costs of modern warfare. You will never look at drones the same way again. This is a movie I am still thinking about, months after watching it (plus, it's just a really great film).

Best Drama
I loved the novel ROOM by Emma Donoghue, and the movie adaptation was excellent. Suspenseful and heartwarming, both my husband and I enjoyed it (he loved the book, too).  The two main actors - both the mom and the little boy - were wonderful in it.

Best Comedy
This was out last movie of 2016, watched in New Year's Eve, and one of the best. I could have fit it into other categories because this movie has it all - humor, drama, romance, and great music. It's the story of a group of teen boys - very ordinary, uncool boys - who start a band in 1980's Dublin. The movie is a lot of fun and it's uplifting, too - a great way to end the year! (or start a new one). Did I mention the music? I was listening to the Sing Street soundtrack on Spotify today, and it brought a smile to my face.

Best Sci Fi/Fantasy
Do I have to choose a favorite in this category? All three that I marked as our favorites - this one, Ex Machina, and Star Trek Beyond - were excellent. But, this is Star Wars! My husband and I both loved this return to the Star Wars world - and enjoyed seeing it on the big screen in the theater (a rare treat for us).

Best Animated/Family
Granted, it was the only family movie we watched this year, but it was worthy of the win. I had my doubts since Disney's classic animated version is an old favorite of mine, but the high-tech effects were amazing, and the casting was perfect. Bill Murray as Baloo the Bear? Plus, they left in our favorite songs. All in all, a very enjoyable evening that left us singing.

Best Documentary
Once again, the only film in the category that I watched this year! TV also crowded out the movies I usually watch on my own, including documentaries. This one was a lot of fun and completely heartwarming.

Here are all the movies we watched in 2016, listed by genre, with our favorites marked with an *

All Good Things - a creepy, psychological thriller based on true story
American Ultra - action-packed thriller with plenty of humor, about a stoner turned secret agent
Bridge of Spies - a quiet, suspenseful story based on real-life spy swap
* Eye in the Sky - a powerful, thought-provoking story about modern warfare 
* The Girl on the Train - dark, twisty thriller based on the best-selling novel

The Legend of Tarzan - a new twist on the classic jungle adventure
* ROOM - Suspenseful, heartwarming - based on the best-selling novel
* Stuck in Love - warm, funny atypical romcom about a family's loves

The Intern – light, warm, funny movie about 70-year old intern
* Sing Street - a musical/comedy/drama about a group of teen boys who start a band in 1980's Dublin
Thin Ice - a comedy/crime caper starring Greg Kinnear & Alan Arkin
A Walk in the Woods -  light, mildly funny movie based on Bill Bryson's book

Sci Fi/Fantasy
Captain America: Civil War - Avengers movie - action-packed with a complex plot 

* Ex Machina - thoughtful, suspenseful, highly-acclaimed sci fi thriller 

Project Almanac - fun, fast-paced story of teens who time travel
* Star Trek Beyond - action-packed sci fi adventure with a sense of humor 
* Star Wars: The Force Awakens – continuation of the classic epic space saga
The Jungle Book - live-action/CGI version of the classic favorite

Twinsters - charming, warm story of two possibly long-lost sisters who find each other

What were your favorite movies you watched in 2016?

Saturday, January 07, 2017

Weekly Inspiration: Setting Goals with ME/CFS

It's that time of year! On Facebook, the radio, the morning TV shows - everywhere you turn - there is talk of New Year's resolutions. When you are chronically ill, all of this talk of self-improvement can make you feel left out, but it doesn't have to. You can still set - and achieve! - goals when you are chronically ill, even if you are bedridden. They are just different than the goals that healthy people might set.

In my latest article on the ProHealth website, Setting Goals When You Are Chronically Ill, I lay out a step-by-step process for figuring out what's important to you, setting goals, and establishing measurable objectives and targets to help you meet your goals. You can use this process no matter what your physical condition is. I'm sure all of us would be helped by the goal of "Improve my health"! If that is one of your goals, but you don't know where to start, check out my post on Effective Treatments for ME/CFS, which summarizes the treatments that have most helped my son and I to improve over the years.

There are some examples in the article from my own life, but if you want more details, you can check out last year's 2015 Progress and 2016 Goals post, which recounts how I did versus my objectives for the previous year and what I was aiming for in 2016. Even though we are sick, that doesn't mean our goals have to be focused on illness. You might have goals or objectives like "Find Joy in Every Day" or "Strengthen My Relationships" or whatever else is important to you. What's critical are the very specific, measurable baby-step targets that will help you achieve those goals.

Also, look for a similar post here this coming week. After writing the article last month and doing my annual look back this week, I decided to start fresh and rewrite my lifetime goals (I originally wrote some of those decades ago, even before I got sick!). I'm hoping this will also bring me some fresh inspiration for this year's objectives and targets.

In the meantime, read the article on ProHealth and follow the steps to set up your own objectives for the new year - 2017 could be your best year ever!

Do you set goals or objectives for yourself? Is there anything in particular you want to focus on in 2017?

Happy New Year!

Thursday, January 05, 2017

2016 ME/CFS Research Summary

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2016 was a rough year in many ways for most people, with everything from natural disasters to increasing violence to vitriolic politic upheavals (not just in the U.S.). And, if you are reading this blog, then you or a loved one has this debilitating disease, so it was probably a rough year for you personally, too.

But 2016 was an EXCELLENT year for ME/CFS research! Lots of exciting new studies were published and major on-going projects announced, much of which made big headlines, even in the mainstream media. We are living in a time of great change and forward movement in the ME/CFS world, with advances being made constantly in diagnosis, treatment, and uncovering the mysteries of this complex disease.

Here are some highlights from 2016, starting with summaries from two major ME/CFS research organizations:

Solve ME/CFS Initiative published its year-end summary last week, including research advances, bringing together researchers from diverse branches of science with ME/CFS patients, building awareness of ME/CFS, and advocacy efforts to improve funding and government recognition. Their recently announced 5 seed projects through the Ramsay Award Program for ME/CFS are especially exciting and are just beginning. Check out their summary, which is in an easy-to read and understand format, for details.

Likewise, Open Medicine Foundation also published their Summary of 2016 Accomplishments, which is similarly impressive. It includes exciting research efforts that are still moving forward, a top-notch team of scientists and experts, advocacy efforts, and more.

Back here on my own blog, I posted a lot of summaries of ME/CFS research studies published and/or in progress in 2016, including:
Wow! That's a LOT of exciting research developments in one year, and in all kinds of different areas - genetics, biomarkers, treatments, and diagnosis. Some of these studies are already applicable to patients and many of them will form the basis for further research in this new year and beyond.

The pace of research into ME/CFS is definitely accelerating at a faster and faster rate - and the more that happens, the faster the advances will come because they all build on each other.

Heading into 2017, we have - AT LAST! - a solid framework of scientists, doctors, and experts all focused on unraveling the mysteries of ME/CFS and helping its patients - and most of them are sharing information and working together. Things are looking good for us and just keep getting better and better all the time.

Here's to a healthy and happy new year with many more scientific advances!

Tuesday, January 03, 2017

TV Tuesday: The Man in the High Castle

This holiday hiatus time is always challenging for TV fans, like my husband and I, as most of our favorite fall/winter TV shows have been on a break. This year, after all the mid-season finales (when did that become a thing?), we turned to streaming. We are enjoying the 5th and final season of one of our long-time favorites, The Wire, which is available for free on Amazon Prime (all five seasons) and is excellent. We have also been watching the newly released second season of The Man in the High Castle, an Amazon Original series that is an intriguing alternate history, based on the novel by Philip K. Dick.

The basic concept of this very original story is that the Allies lost WWII. The U.S. never dropped the atomic bomb on Japan (or anywhere else), and the Nazis won the war. In this alternate history, set in the early 1960's, the Nazis control the eastern U.S., and Japan controls the western Pacific states. In this scenario, Japan and Germany split the U.S. into these two power territories, with a narrow strip left in the middle and known as the Neutral Territories. As the show begins in season 1, we see glimpses of both of these empires.

In Nazi-ruled New York City, Joe Blake, played by Luke Kleintank, leaves with a cargo truck for neutral Colorado. He seems to be a resistance fighter, and once he is on his way, both he and the viewer find that his hidden cargo is a film canister. Meanwhile, in Japan-controlled San Francisco, a young woman named Juliana Crane, played by Alexa Duvalos, sees her sister killed in the street in front of her. Her sister leaves behind a bus ticket to Colorado and a film canister. Confused, shocked, and grieving, Juliana gets on the bus with her sister's ticket to find out what she was involved in. She discovers that the film shows a different version of the end of the war, with the Allies winning and the Nazis defeated. She and Joe meet in Colorado, both of them afraid to trust anyone.

That's just the beginning of the first episode - to describe much more of the plot would ruin the fun, since this show is filled with roller coaster twists and turns. Each episode shows more of what life is like both in the Nazi east and in the Japanese west, as both Joe and Juliana try to figure out what's going on and what these strange films mean. There are plenty of other interesting characters, including Juliana's boyfriend Frank, played by Rupert Evans, the Japanese Trade Minister of the Pacific United States, played by Nobusuke Tagomi, and the Nazi commander Obergruppenführer John Smith, played by Rufus Sewell, who actually seems like a decent, normal guy as he enjoys his wife and children at home.

This concept of an alternate history is intriguing and compelling, and the films of a different outcome (the one we are familiar with) hint at multiple realities. Besides the engrossing plot that constantly keeps you guessing, the acting and writing are superb, and the sets of a Japanese-controlled California and a Nazi-run New York are fascinating. We are hooked on this show that combines science fiction, history, and suspense and can't wait to see what happens in this second season. Incidentally, my husband read the book the show is adapted from but didn't really like it much. He likes the TV version better, as it fleshes out the concept better.

The Man in the High Castle is an Amazon original series so is shown exclusively on Amazon Prime.

Have you seen The Man in the High Castle yet? Have you read the book?