Rituximab - A Promising Treatment for ME/CFS

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I have been watching and reading the ground-breaking research on using a cancer drug, rituximab, for ME/CFS with great interest and wanted to provide a brief update here for those who haven't heard about it yet or who want more information (or, as always here, a simple explanation).

Rituximab is a drug that affects the immune system, used for patients with lymphoma, a form of blood cancer, and also for autoimmune conditions like Rheumatoid Arthritis (RA). There is now growing evidence that it might work for a majority of ME/CFS patients, either greatly improving their symptoms or even providing complete remission.

A simplified timeline of what's gone on so far:

1. In 2004, two Norwegian doctors using rituximab for a group of lymphoma patients noticed that one patient - who also happened to have ME/CFS - was not only cured of his/her lymphoma but that all of his/her ME/CFS symptoms had disappeared as well.
2. Excited by this unexpected occurrence, those same two Norwegian doctors conducted a small, 1-year study of 15 people with ME/CFS in 2011. A full two-thirds of the patients (10), experienced significant improvement on rituximab. Two of those 10 seemed to be completely recovered, even 3 years after their initial doses, and were back at work.
3. In July 2015, results were published from a larger Norwegian study of rituximab in 29 ME/CFS patients, showing that once again, almost two-thirds of the patients (18) responded well and improved significantly, some achieving full remission. Eleven of the 18 who responded were still in remission three years after beginning the treatment, and some have not had symptoms for five years. This study included a variety of ME/CFS patients, ranging from moderate to severe (bedbound).
4. A much larger study, of 150 ME/CFS patients, is now underway in Norway and includes a control group. Results are due to be published around 2017-18.

Can you believe those facts?? Two-thirds significantly better? Complete remission? These are words that many ME/CFS patients never thought they'd hear.

So, how does this miracle drug work?
Rituximab, a cancer drug, wipes out most of the body's B-cells, a kind of white blood cell that makes antibodies. In the ME/CFS trials, the doctors have generally seen a 4-6 month lag in response time after the first dose is administered, which is about the length of time it would take for existing antibodies to be cleared from the body. Patients showed signs of relapse at about 1 year - approximately the amount of time it would take for the body to make more B-cells and re-grow antibodies. The researchers have found in the series of studies that giving multiple doses of rituximab over a long period of time helps to increase the number of people who respond and decrease relapse.

Is there a down side? Definitely. Killing off all your B-cells is not without risks, and there can be serious side effects, just as there are with immunotherapy in cancer treatments. Some people feel sicker during that initial period. I don't know about you, but I would be very willing to put up with worse symptoms for a few months if it meant a 67% chance of remission. Rituximab is currently a very expensive drug.

Also, although two-thirds of patients responding is an amazing number in any treatment study, that still leaves one-third that does not. You could potentially pay a lot of money and suffer through that initial worsening, with no benefit...though the odds are in our favor so far. Future studies will try to figure out what separates the responders from the non-responders and what factors can help to predict who will benefit from rituximab.

I'm also not sure whether rituximab could be used in ME/CFS patients who have active infections, like my son who has Lyme disease plus two other tick infections. I would think that killing off all B-cells and clearing the body of antibodies wouldn't be a great idea with active infections present, but I'm no expert.

When will rituximab be widely available? So far, Norway has conducted all of the ME/CFS rituximab studies to date. UK advocates at Invest in ME have raised $600,000 for their own rituximab study of 30-40 people.

Rituximab is already FDA approved in the U.S., for lymphoma patients and also RA. It is sometimes used in the U.S. off-label (i.e. for purposes other than its official approval) for other autoimmune conditions, like MS, lupus, and others. I have no idea whether any ME/CFS specialist are yet prescribing it for patients here or whether they are waiting for the results from the largest Norwegian study. As for the cost, if it is eventually FDA-approved specifically for ME/CFS, then it should be covered by most health insurance; used off-label, as it could be now, insurance coverage will vary based on the insurer and the specific policy.

So, those are the basic facts - and exciting facts they are! Besides the links above to the two early Norwegian studies, you can read:

• a brief summary from New Scientist
• a brief summary from the UK's ME Association
• a much more detailed, in-depth explanation written by the talented Cort Johnson at the Simarron Research site.

I plan to ask my ME/CFS doctor about rituximab on my next visit. I am interested to know whether she or any of her colleagues are using it yet here in the U.S. or whether there is any information yet to predict who will respond to it.

Do you know of any patients on rituximab or any doctors using it for ME/CFS yet?

What do you think of this exciting new possibility?

TV Tuesday: The Catch

My husband and I decided to try the new ABC drama/thriller The Catch, and after three episodes so far, we are enjoying this fun, fast-paced game of cat and mouse very much.

Alice, played by Marielle Enos, runs a thriving private detective agency with her partner and best friend, Valerie, played by Rose Rollins. They are very good at what they do, as seen in the first episode when they foil a talented art thief. Alice is happily engaged to Christopher, played by Peter Kraus of Parenthood fame. They are planning their wedding, and their passion and love for each other is obvious.

Until...we see that Christopher is a con man, and Alice is his latest con. Christopher's real girlfriend, Margot, played by Sonya Walger who played Penny on Lost, tells him it's time to end the con and disappear. Alice has just given Christopher $1.4 million as her half of the down payment on their house, and the next morning she discovers that he is gone without a trace - his apartment empty, his supposed place of work empty, and he - and her money - gone.

Alice is, of course, heart-broken, and also determined to find him. The viewers, though, know something that Alice doesn't: "Christopher" has broken the #1 con-man rule and actually fallen in love with Alice for real. Leaving her and moving onto the next con isn't as easy for him as it should be.

So far, three episodes in, there seems to be a pattern to the show. In each episode, Alice and Valerie take on a new client and solve a new case. Meanwhile, "Christopher" takes on a new identity and he and his two partners (Margot and Reggie, played by Alimi Ballard from Numb3rs) move forward on their new con. Alice's friends want her to forget Christopher and move on...but she is secretly trying to find him. Add in FBI agent (ex-Interpol) Jules Dao, played by Jacky Ido, who has been tracking "Christopher" for years.

I have seen some criticisms that elements of the show are unrealistic. I think those people are entirely missing the point of this show - it's fun, pure and simple! Besides, the fact that a PI who catches con men got conned herself is the whole ironic point. The lead actors are all excellent in their roles (and easy on the eyes!). Peter Kraus as "Christopher" just oozes charm and sexiness...though it is weird to see him in the role of a bad guy after watching him for so many years as dedicated father and husband Adam Braverman!

This is a typical Shonda Rimes show (her other successes include Grey's Anatomy, Scandal, and How To Get Away with Murder). The combination of mystery, romance, and cat-and-mouse chase is lots and lots of fun. We are enjoying the ride for now and interested to see where it goes.

The Catch is shown on ABC Thursdays at 10pm (though we never watch anything when it actually airs!), and the first three episodes are all available for free On Demand or at the ABC website. They are also available for $1.99 each at Amazon.

Book Review: How To Live Well with Chronic Pain and Illness

Have you heard of Toni Bernhard? She's an important member of our ME/CFS community, a kind, compassionate person with a background in Buddhism. Last fall, Toni published her third book, How To Live Well with Chronic Pain and Illness, which I just reviewed on my book blog.

I have read and reviewed two previous books by Toni Bernhard, who has become a good friend of mine over our 14 years of illness together (we got sick at about the same time): How To Be Sick and How To Wake Up. The first book was about applying the principles of Buddhism to a life of chronic illness, and the second was a more general book – for anyone, not just those chronically ill – about applying Buddhism principles for a happier, more peaceful life. In her third book, How To Live Well with Chronic Pain and Illness: A Mindful Guide, Toni once again focuses on those living with chronic illness and pain, with a more general guide, based on her own life and experiences and the wonderful columns, “Turning Straw Into Gold,” that she has written for Psychology Today.

I highly recommend all three books - I've found them all helpful in improving my life. Like me, Toni has a strong focus on finding joy in every day and living life to the fullest (in her own way), even with the extreme restrictions she lives with. I think this third book is my favorite, packed full of personal experience & helpful advice on living with chronic illness. Check out my full review and see for yourself.

Thanks for another outstanding book that will greatly help your fellow patients, Toni!

Research Working Toward ME/CFS Diagnostic Test

© Dana Rothstein | Dreamstime Stock Photos

Last month, Griffith University in Australia created a stir in the ME/CFS community with this headline, "Screening Test for Chronic Fatigue Syndrome on its Way" (you can read the article at the link).

While that headline was perhaps a bit premature, the news is still good. Griffith says that it "has identified new markers that can be used to screen patients and is now looking to partner with diagnostic companies to bring a test to market." The article doesn't go into detail on exactly what those markers are.

Digging deeper, this page lists several relevant studies on biomarkers for ME/CFS that have been researched, with papers published, by Griffith's National Centre for Neuroimmunology and Emerging Diseases. These studies have looked at a wide variety of biomarkers in ME/CFS over the past four years - some impressive work that I didn't even know was going on!

The university says they are looking for a commercial partner to help bring a diagnostic test to the market...so maybe it isn't very far down the road. A diagnostic test for ME/CFS would be a game-changer for the patient community, with the CDC estimating that roughly 85% of those with ME/CFS in the U.S. are currently undiagnosed. Faster, more accurate diagnosis would lead to more timely treatments that could perhaps help more in the early stages of the illness.

Good news...and hopefully, a brighter future ahead for ME/CFS patients!

Balancing Hope and Acceptance

This is a reprint of my article published on ProHealth last month. How do you balance hope and acceptance in your life?

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Balancing Hope and Acceptance

June 4, 2003

When will I stop thinking of my pre-illness life as “normal”? I guess that would be the sign of true acceptance. But I’m not sure I want to be that accepting!  I don’t want to forget “the old me” (what I still think of as the real me). 

It’s a constant internal struggle. If I truly accept this illness as part of me, does that mean I give up all hope of recovery? Yet, if I refuse to accept my new limitations, then I am sentencing myself to continue relapsing.

I wrote that entry in my journal a little over a year after becoming ill with ME/CFS, shortly after being diagnosed. I was struggling to accept this “new normal” and to come to terms with the possibility of never recovering. Now, 14 years into living with chronic illness, I am happy in my post-illness life, though balancing acceptance and hope is still an ongoing goal.

As I wrote in that journal entry, there seems to be a dichotomy between the two. Does accepting your current situation mean you are giving up hope of ever getting better? Does continuing to strive to improve your condition mean you will keep relapsing? It’s difficult at first, but acceptance and hope can co-exist peacefully. Here’s how:

Let go of the past.

A big part of acceptance for me was giving up my ideas of who I was based on what I could do. I had always seen myself as a strong, fit, independent person, so living with physical limitations was difficult. I had also enjoyed a satisfying professional career in engineering and identified myself as a leader. Although I had voluntarily left my career before becoming sick in order to spend more time with my family, I always intended to return to it after a couple of years. I missed my professional life and that sense of being capable and self-sufficient. It took me some time (and professional counseling) to let go of that identity and recognize I was still OK without it.

I also struggled with my identity as a mother. I used to spend a lot of active time with my family – hiking, playing soccer with the kids, and taking care of the house with my toddler son by my side, cleaning, playing, and running errands together. Those first few years after becoming sick, I felt horribly guilty that I couldn’t be the mother I wanted to be. I finally realized, though, that it didn’t matter to my kids – they loved me just as much reading with them, watching videos together, or playing quiet games. They loved me because I was their mother and I gave them love, not because of what I could or could not do.

Remember, you are not defined by what you do. You are still the same person inside, even if you are no longer working or involved in other things that used to be linked to your identity. Allow yourself to mourn those lost identities or opportunities, to see the essence of yourself without them, and then move on.

Live for today & focus on the positive.

Gradually, I began to create a new life for myself. When my youngest started school, I resumed what I had started after leaving my job – freelance writing. I don’t make much money and my energy/time is limited, but it’s work that I love, and I can contribute a small amount to our finances. Most importantly, it’s work I can do on my laptop from the couch!

I focused on things that I love that I could still do with chronic illness, like reading, blogging about books, being outdoors, and watching TV and movies with my family. I started a Joy Journal to help myself focus on the good things in my life.

You can do the same. Focus on things that give you pleasure that fit within your new life, perhaps even finding a new interest, like knitting or reading classics. Teach yourself to recognize small joys in your life and to feel grateful for what you have. Start a journal to record daily joys or gratitude or share them on social media (use #GratefulToday). Connect with other people online or in real life with a similar positive focus.

Don’t fight against your body.

In the early days, my condition was very up and down which made acceptance harder. Some days I felt good and returned to normal activities, only to feel horribly sick again and unable to get off the couch for days or weeks. Just learning about post-exertional malaise (aka exercise intolerance) helped. I began to record my activity level each day, making note of what caused a “crash” and what I could tolerate.  As I learned what my limits were, I had fewer bad days and more OK days.

Try to live within your limits as much as you can. Keep simple records of how you feel and your activity level each day to figure out what makes you worse and what you can tolerate. Listen to your body and rest as much as you need to.

Feed hope.

The other side of the coin, hope, came more easily to me since I am naturally an optimistic person. I did go through some dark years of despair in the beginning, though, especially after both of our sons also got ME/CFS. I saw a wonderful psychologist who specialized in chronic illness; she helped me tremendously with both acceptance and hope. And I read a life-changing book called The Anatomy of Hope by Dr. Jerome Groopman that I recommend to anyone living with chronic illness. It defines what real hope is and helps you understand how to hold onto it, even in the face of frightening odds.

I put my scientific background to use and read all the research on ME/CFS that I could find. Research has come a long way since the early days of my illness, and every new study that comes out – focusing on physiological aspects of immune dysfunction, infections, genetics, and more – gives me hope that we are getting closer to some real answers for patients.

I also searched relentlessly for treatments to help my sons and I, often based on those research studies. We have discovered that although nothing helps a lot, there are a lot of treatments that each help a little…and those add up to considerable improvement over time. Each improvement, no matter how small, further feeds that sense of hope.

You can feed hope, too. Read research summaries, visit blogs and websites like this one to stay up-to-date on the latest news, and look at each new piece of information about your illness as another step closer to a cure or at least effective treatments. Keep trying new treatments (which often requires some trial and error and a lot of patience!). Just better understanding your illness can lead to improvements in your quality of life.

Accepting – even loving – your life as it is today isn’t giving up. It’s making the best of today, while holding onto hope of an even better future.

TV Tuesday: NCIS and NCIS: New Orleans

My family was late discovering the NCIS shows. We saw a couple of the originals when visiting my dad and his wife and liked them. Soon, NCIS became the go-to comfort show for my son and I on sick days for its combination of intriguing mysteries, great cast and characters, and most of all, its wonderful sense of humor. Last year, when they introduced a new version of NCIS set in New Orleans, we were sold - same basic formula only set in our favorite city (my husband and I used to live there - it's where we met - and we've taken our sons to visit several times).

There are now 13 seasons of the original NCIS show (wow!), with a 14th planned (and IMDB shows a 15th, too!). My son and I have watched the first three seasons (he prefers to watch shows in order, from the beginning) and are in the middle of the fourth now, first on DVD's from the library and more recently on Netflix. Even though he is managing his chronic illness pretty well and in college now, when he comes home sick, that's what he wants to watch with me!

So, just in case we were not the last ones on the planet to discover this wonderful show, here's a quick recap. Mark Harmon plays Special Agent Leroy Jethro Gibbs, an ex-Marine, of NCIS, Naval Criminal Investigative Services, located in DC. He is in charge of the Major Case Response Team, a group of agents who investigate serious crimes that involve personnel from the Navy or Marines (or their families). I suspect that no one even knew this branch of law enforcement existed before the show made NCIS famous! Gibbs is tough but kind underneath his gruff exterior and totally devoted to his job (and his team, too...though he does have a tendency to slap them in the head!).

Gibbs is assisted in his investigations by a team of agents and support personnel. Michael Weatherly plays Senior Field Agent Tony DiNozzo (though Weatherly has just announced he will be leaving at the end of season 13). DiNozzo is a former Baltimore Homicide Detective (non-military) who is constantly joking, flirting, and quoting movies. Some of the other Agents have come and gone on the show, though Tim McGee, played by Sean Murray, and Ziva David, played by Cote de Pablo, have both been been regulars on the show for many seasons now. McGee is a geeky computer expert who Tony loves to tease, while Ziva is an attractive former Mossad officer from Israel who speaks many languages and is highly trained in combat.

Backing up the field team is Abby Sciuto, the adorable, brilliant Goth Forensics Scientist who works miracles in the lab while slurping down Big Gulps, played (and adored by fans) by Pauley Perrette. Dr. Donald Mallard, nicknamed Ducky, is the resident Medical Examiner and an old friend of Gibbs and is played by David McCallum. Other characters have moved in and out of the group, but those are the main players.

In typical crime show fashion, the team solves a new crime each episode (with occasional two-parters or returning storylines). As with the most successful crime shows, much of its success is due to the actors and the characters they play, and the continuing stories of the main characters' outside lives are an integral part of the show and are just as important as the crimes they solve. One of the things my son and I like best about NCIS is the humor that is woven into every episode, even when (especially when) they are investigating a serious or gruesome crime. Like I said, it's comfort TV.

We have also watched some of NCIS: LA which follows the same formula but with its own unique and talented cast and set in Los Angeles and with more of a cyber focus. We enjoyed some episodes of the LA version but have never gotten as totally hooked on it as with the original.

I couldn't find a clip of NCIS Season 1 (too long ago!), but here is an amusing clip focusing on Gibbs and the other characters and showing the humor of the show:

Last year, CBS unveiled a new version, NCIS: New Orleans. We were sold immediately since we love the Crescent City so much, and we have now followed along with seasons one and two. This show follows the same basic formula as the original, solving crimes involving the Navy or Marines, with interesting characters, and that trademark sense of humor. On this show, Scott Bakula plays the man in charge, Senior Special Agent Dwayne Pride. I've always liked Bakula, and he's very good in this role. Backing him up are agents Christopher LaSalle, played with a thick (and authentic) Alabama accent by Lucas Black, and Meredith Brody, played by Zoe McLellan. CCH Pounder plays ME Loretta Wade, and much of this show's humor comes (as with the original) from the Forensics Scientist, in this case Sebastion Lund, a super geek prone to going off on tangents, played by Rob Kerkovich. And we love when there is a cross-over show and our favorite characters from the original NCIS appear on one of the spin-offs.

As for the setting in New Orleans, it is mostly pretty accurate, though with a few glaring exceptions. You could never fit a facility as large as the NCIS headquarters into a building in the French Quarter, as it is depicted here. The show does make frequent use of the French Quarter's popularity (and notoriety), though it also depicts other areas of the city. I have heard some people complain about the accents, but I don't think they're that bad (I learned when I lived there that natives have no idea how thick their own accents can be!) and not all characters are originally from New Orleans, so there are a range of accents depicted on the show. We do love to catch glimpses of our favorites places in NOLA or hear mention of one of our favorite restaurants.

Here's a trailer for NCIS: New Orleans



All seasons of the original NCIS show are available on Netflix, with DVDs available on Netflix for NCIS: LA and NCIS: New Orleans. All three shows are available on Amazon Prime for $1.99 an episode, $19.99 a season, or on DVD (often cheaper). And all three shows are currently being shown on cable, with recent episodes available On Demand.

Have you watched any of the NCIS shows? Which are your favorite(s)?

    

Spring Break Week - Busy, Busy!

I realize I haven't been posting here much lately, but things have been too busy with family around to leave much time for blogging (or much of any writing, for that matter). I've had to focus my limited writing time on paid work.

Last week was Easter, and we traveled to Rochester, NY, to visit my family (some of them, anyway). It was a short trip, bookended by two long drives! We had a good weekend, though, and I managed quite well. We stayed at a hotel this time because my father's wife (where we usually stay) is in the middle of selling her house. We managed to squeeze in most of a day with her, dinner with my aunt and uncle (who we missed on the last trip), breakfast with a friend I have known since first grade (!), and a lovely Easter celebration on Sunday featuring our traditional Ukrainian foods and a small group of family. So, that was a short week at home and a very busy few days away!

This week has been spring break for both of my sons, but they have outgrown the week-long trips with mom and dad (unfortunately). Monday was super-busy, getting our college son back to his campus apartment (after refilling all our meds for the week - a 90-minute job!) and getting our younger son and his friends set up with our camper at a local state park for a few days. We booked the campsite for the week, and he and his friends enjoyed the first half. Today, my husband and I will head down there to spend our couple of days at the park. I do miss the days of all of us vacationing together, but I appreciated spending Easter weekend together and am looking forward to a quiet weekend with my husband. I think we need to install a revolving door here at the house!

Whew. Like, I said - busy, busy! Since rain was forecast for today, I'm trying to finish up some work this morning, and we will leave after my nap this afternoon.

Back home on Sunday, and back to a more normal schedule, with everyone at school and work, and five whole QUIET days to myself next week! So, I hope to resume a more normal blogging schedule, too. Enjoy the weekend.

TV Tuesday: American Crime

Having heard rave reviews of the ABC drama American Crime, my husband and I started watching it this second season (which has just recently wrapped up). My husband found it a bit too disturbing (it's not at all graphic but does deal with some sensitive topics like male rape), but I was riveted for the full ten episodes.

American Crime (not to be confused with American Crime Story which is airing a re-enactment of the OJ case) is a wholly unique show, unlike anything else I have ever seen on TV before. Each season, it tackles a different crime, with an entirely different set of characters and location, and it delves into myriad issues that are relevant to our society today. Timothy Hutton and Felicity Huffman are the lead actors in the show, but they play completely different characters each season. So, essentially, each season stands on its own as a sort of mini-series. I haven't watched season 1 yet, but the synopses I read say it deals with the court trial of a home invasion that resulted in the death of a war hero who may have had some secrets in his life.

Season 2 takes place in Indiana and aims to capture a typical American Midwest town. In the first episode, a high school boy named Taylor goes to a party and later admits that he was drugged and sexually assaulted. Taylor lives with his single mom, who works as a waitress, and is a scholarship student at the prestigious Leyland School, a private school where most of the students come from wealthy, upper-class families. The party that Taylor went to was an annual tradition: the Captain's Party, hosted by the two captains of the school's championship basketball team. It's the kind of thing that most parents and school administrators know about but look the other way. Photos of Taylor from the party - in which he looks drunk and half-naked - circulate on social media, triggering the crisis.

In that first episode, the main characters are introduced, including the boys on the basketball team, especially the two captains, Eric and Kevin. The basketball coach is played by Timothy Hutton, and his wife, the art teacher at Leyland, is played by Hope Davis. Leyland's principal - a completely unsympathetic character - is played by Felicity Huffman. Taylor's hardworking mom is played by Lili Taylor. Eric's and Kevin's parents are also introduced, as well as other important characters. The acting - from the big name actors as well as the lesser known teens - is absolutely superb.

As each episode unfolds, the show digs deeper into the story, as secrets and lies are uncovered. The details of the assault are revealed gradually, although even by the end, it remains a matter of who do you believe? That event triggers an avalanche of effects that reverberate throughout the entire community, eventually leading to some tragic consequences. Leyland, the private, mostly white school, is contrasted with the local public school, where incidents of racial violence break out and the multi-racial administrators struggle to maintain control. The media and the police are also involved throughout the story.

American Crime tackles all kinds of important issues in our society in a way that highlights the gray areas. This second season addresses issues of race, sexual orientation, and class and highlights our biases and prejudices (it seems the first season, though focusing on an entirely different crime, has a similarly broad and thoughtful approach). Nothing is clear-cut here, and the viewer is constantly caught off-quard, wondering who to believe and who are the good guys.

This is a TV show of the highest quality, with excellent acting, realistic writing, and situations that mirror the complexities of real life, with no easy answers. It's a crime show where you never even see the faces of the detectives and lawyers - regular citizens are the focus here, including crime victims, perpetrators, and everyone else affected by the crime(s). If there was a book group equivalent for TV shows, American Crime would be the perfect show for a group discussion - the issues introduced here are complex and thought-provoking. And if you only like stories that wrap up all the loose ends with a nice, happy ending, then this one probably isn't for you. I can't wait to see what they come up with for season 3 (and I still need to go back and watch season 1).

American Crime airs on ABC. The second season has ended, and the last half of it is still available On Demand and on Hulu, and the last few episodes are available at ABC's website. It doesn't seem to be available on Netflix. Both season 1 & season 2 are available at Amazon for $19.99 (or $1.99 per episode). If you missed the start of season 2 and don't want to pay for it, then you will have to wait for season 3 - you don't want to miss this one!



    

TV Tuesday: The Americans

My husband and I were excited last week by the return of one of our favorite TV shows, The Americans, for its fourth season. It just gets better and better!

This FX show takes place in 1980's Washington, DC.  Elizabeth and Phillip Jennings run a travel agency together and seem like a typical suburban family, with their kids Henry and Paige. There is nothing typical about them, though. They are both Soviet Union spies who were sent to the U.S. when they themselves were teenagers to grow up here, get married, and become imbedded as spies who appear like any other American couple.

So, they get up in the morning, feed the kids and take them to school, maybe stop in at the travel agency for a while, and have dinner with their kids in the evening. In between, though, at all hours, one or both of them might be out on an assignment, wearing a disguise and gathering information - perhaps sleeping with a politician or meeting up with another spy or even killing someone who has gotten too close to their secret. It's all very thriller-ish, packed with action and sometimes sex and violence, while on the surface, they live this sedate, "normal" life.

Challenges are constantly coming up, from finding out that their neighbor works for the CIA to their teen daughter getting hooked on religion and joining a church. There are crosses and double-crosses, hidden secret lives, plus inside looks at what is happening within the CIA and inside the Russian embassy. One of the most amazing things about this unique show is that the viewer is witness to both sides of the Cold War, but you find yourself rooting for the main characters, the Russian spies!

The acting on The Americans is superb. Elizabeth is played wonderfully by Keri Russell, who conveys both a passion for her country and strong belief in what she is doing but also maternal love for her children. Matthew Rhys plays Phillip...though you may not recognize him at first in many scenes! His disguises are plenty and very convincing. Even the actors who play the children are excellent, especially Paige, who by the third season (and her teen years) is starting to wonder about her parents' comings and goings at strange hours.

There is tremendous complexity to this show - it's a family drama and a spy thriller, an action-packed adventure that also delves deep into its characters' emotional lives. In addition, the setting is very well-done - it really feels like the 80's without being overdone. We loved it right from the very first episode - and it just keeps getting better.

Season 4 just began on FX so is available On Demand and on the FX website. It is also available for $1.99 an episode on Amazon Prime, and the first three seasons of The Americans is available for free on Prime (or for $20 a season/$1.99 an episode for non-Prime members).



         

Weekly Inspiration: For Friends & Family - What To Say

This TED talk popped up in my sidebar on Youtube this week, and it sounded (unlike some of Youtube's other suggestions for me) like something perfect for me. It was. Although the speaker is not chronically ill, she is recovering from the loss of a limb, so she understands a few things about physical disability, mourning, and grief...and the horrible things people say when they don't know what to say.

Adrianne Haslet-Davis was a victim in the Boston Marathon bombing and lost her foot and lower leg. In this talk, What People Say When They Don't Know What To Say, she describes some of the things friends and family said to her while she was in the hospital and working to recover and grieve her loss. No one with chronic illness will be surprised in the least by some of the horrible things people said to her. We've all been there - hearing a well-meaning loved one tell us how lucky we are or suggesting that vitamins could cure us or (my personal favorite) tell us that God never gives us more than we can handle.

Adrianne's experiences are similar (and sometimes, even worse), and here, she provides advice to friends, family, medical professionals, and caregivers on what to say:



This would be a great video to share with friends and family, but I think it is also helpful for patients enduring these kinds of ignorant comments. For one thing, it tells us that it isn't just US - that it is a universal experience for friends and family to not know what to say and to blurt out awkward, inappropriate, and even hurtful things. Adrianne also talks about where these horrible comments come from - she theorizes they come from a place of fear. I agree completely. I think one reason so many people have trouble dealing with those who are chronically ill is the constant reminder (perhaps even unconscious) that this horrible thing could happen to them, too. Yes, they love us and they want to help us, but deep down inside, it is terrifying to see a formerly lively, active loved one become so severely ill (which is also why so many of our loved ones gets mired in denial).

I've written previously about this topic in CFS and Family, The Invisible Wall, Helping Family Understand ME/CFS, and in my ProHealth article, Who Do You Tell and What Do You Say (kind of the opposite of Adrianne's talk here, about what we say to others).

What are your thoughts on the things people say? Share your experiences in the comment section, about what your loved ones have said to you or your own strategies for dealing with these kinds of comments.

Unique Gene Expressions in ME/CFS and Lyme Disease

Two recent studies have been published using the latest technology to analyze the genetic expressions in ME/CFS patients and those who have had and been treated for Lyme Disease, respectively.

In the ME/CFS gene expression study, they used 88 subjects - 42 with a diagnosis of ME/CFS and 38 healthy controls - to conduct a comprehensive study of the entire known genome to look for differences and distinct markers in the ME/CFS patients. They found 442 SNPs (pieces of known genetic material) associated generally with the ME/CFS patients, 12 of which were significantly in the coding region of the genome, with 2 of these being especially significant. They also identified 5 SNPs specifically related to T-cell receptors (a part of the immune system known to be dysfunctional in ME/CFS).

This is a very significant study, as it is the first one applying the advanced genetic analysis currently available to ME/CFS, but it is not the first genetic study of ME/CFS. Two earlier researchers began this process about 10 years ago. Dr. Kerr of Scotland headed up a genetic ME/CFS study whose preliminary results were published in 2008 of 25 patients and 50 healthy controls. Then, those genes that were different in the ME/CFS patients in the first round were analyzed in another 55 patients and 75 healthy controls (my blood was a part of this study! I worked through Dr. Enlander in NYC to donate my blood and participate in the surveys). Their results showed 88 genes showing different expression in the ME/CFS patients, many of these related to immune function or infections, which suggested 7 sub-types of ME/CFS.

Dr. Gow, also of Scotland, published a follow-up paper in 2009, building on Kerr's earlier work. This was a smaller study - only 8 patients and 7 controls - but went into greater depth. It found 366 genes with different expressions in ME/CFS patients versus healthy controls. Unfortunately, all of that ground-breaking work in Scotland came to a halt when funding dried up...so seeing this new study is a reason for celebration and hope!

However, even before the technology existed to do this kind of genome analysis, researchers knew that ME/CFS had genetic roots, just from observations of how often ME/CFS occurred in family members. Back in 2006, the New Jersey CFS Association did a population study of ME/CFS incidence in families with some startling results, showing both genetic and infectious roots for ME/CFS. In their study of 219 patients and their families, blood-related family members not in the same household as an ME/CFS patient had a 3 times greater chance of getting ME/CFS, those in the same household but not blood-related (like spouses) had an 8 times greater chance of getting ME/CFS, and those both blood-related and in the same household, like children, had a 13 time greater chance of getting ME/CFS than the general population! Wow. Is it any surprise that both of my sons got ME/CFS a couple of years after I did?

Back to the present, another new study was just published analyzing the genes of Lyme disease patients (29 patients and 13 controls) at the time of diagnosis and six months later, after treatment. It showed a different gene expression in patients, both at the time of diagnosis and six months post-treatment, than the healthy controls. Interestingly, it did not show genetic differences between those patients who were fully recovered and those who had persistent symptoms. Those gene expressions specific to the Lyme patients showed some similarities to those of patients with three different chronic immune disorders, suggesting that Lyme causes similar immune dysfunction that stays on, even after the disease is resolved.

Why should we care about these complicated genetic studies that we can barely understand? Because this information on gene expression could form the basis for future biomarkers (providing a test for ME/CFS and more reliable testing for Lyme), modes of treatment, and perhaps even cures through genetic manipulation. The better the medical field understands what is behind our diseases, the better treatment that will be available to patients. These genetic studies help to form the basis for future research and improvements in patient care and are definitely a reason to celebrate!

New ProHealth Article - Balancing Hope & Acceptance

I am continuing to recover after my bout of both flu and bronchitis last week. I'm feeling much better overall and able to function pretty normally again. I'm still coughing and sometimes sound like Darth Vader when I breathe (and my husband says I've been moaning in my sleep!), but the inhaler and Mucinex continue to help, and it keeps getting better.

My latest article has been published on ProHealth website's Inspiration Corner: Balancing Hope & Acceptance. You can read the full article at the link, and I will reprint it here on my blog in a month or so.

This article deals with the delicate balance in chronic illness between accepting your current condition and making the best of things, while still holding onto hope for a better tomorrow.

I'd love to hear your thoughts on both acceptance and hope, either here in the blog comments, on the ProHealth article's comments section, or on Facebook or Twitter.

Happy St. Patrick's Day!

(In case you missed it, my ProHealth article for February was The Joy of Celebrations, with tips on how to easily make a day like today into a special occasion! I just painted my nails a lovely shade of green and hung our St. Patty's Day decorations up. Going to get the corned beef started soon.)

TV Tuesday: Unbreakable Kimmy Schmidt

I am slowly coming back to life after a bout of both the flu and bronchitis. I would say that the Tamiflu and antibiotics both did their jobs since about one week later, I am starting to feel much better and my cough is clearing up. Even my thinking cleared up today (yay!) and my energy is returning, so I am trying to get back into my usual blogging routines. I have plenty of fodder for my weekly TV Tuesday feature because my son and I were both home sick last week, so we watched a LOT of TV together!

On my worst day last week, I couldn't even manage scrolling through Facebook or checking my e-mail. My son was still asleep, so I needed some seriously mindless TV (and something other than crime shows which I was overloaded on from watching with him!). I settled on Unbreakable Kimmy Schmidt, a comedy on Netflix, propped myself up on the couch, and binge-watched about 6 episodes in a row! It was just what I needed - light, fun, and fluffy to lift my spirits.

The very original premise of the show is that a group of girls is rescued from an underground bunker after being held for fifteen years by a crazy doomsday cultist. The girls travel to NYC to appear on the Today Show after their release, and one of them, Kimmy, played by Ellie Kemper of The Office fame, decides to stay in New York to start her new life. Kimmy was taken captive when she was just 13, so she is extremely naive and completely unfamiliar with the modern world. She was basically scooped up from middle school, held underground for 15 years, and is now loose in NYC.

Kimmy finds a job as a nanny for the wealthy Jacqueline Vorhees, played by Jane Krakowski, looking after her pre-teen son and teen daughter. She also finds a place to live, a basement apartment that she shares with a flamboyantly gay black man named Titus Andremedon, played by Tituss Burgess, with a very flaky landlord played by Carol Kane. It all sounds a little over-the-top described here...and it is! That's the fun of this show - subtle it is not. And did you see that cast? They are all excellent at playing crazy, funny characters.

Kimmy is, of course, the star of the show, and Ellie Kemper is perfect for the role of the innocent, perky young woman making her way through both adolescence and adulthood at the same time. Kimmy loves to dress in bright colors and has absolutely no pretense about her, which tends to bring out the best in those around her. Of course, there are plenty of funny misunderstandings from Kimmy's complete naivete about the modern world. Despite all its light-hearted fun, the show is also warm and endearing as Kimmy tackles all the obstacles thrown in her way and helps those around her, too.

Bottom line: this show is absolute cotton candy fun, a delight to watch, often very funny, and a great pick-me-up. It was the perfect show to binge-watch on a sick day, and after 10 episodes, I found myself really caring abut Kimmy and her ragtag group of friends.

This is a Netflix original show, so it is only available on the streaming service. Season 1 is currently available with 13 episodes, and season 2 starts on April 15, 2016.

What are your favorite shows to cheer you up on sick days?

Triple Whammy - Fighting Infections

I posted on Tuesday about suddenly getting sick, but this is turning out to be way more than my usual ho-hum bronchitis again.

By noon on Tuesday, I was shivering with fever (a rarity for me) and had such severe aches & joint pain I could hardly move. I live with mild aches much of the time, but this was different. I woke up Wednesday morning feeling like concrete had set up in my chest overnight - instead of the loose, wet cough from the day before, I could hardly breathe in and had searing pain in my chest when I did manage to cough. This was definitely NOT my usual bronchitis.

After my nap (spent shivering under blankets even though it was almost 80 here yesterday!), my temperature hit 102, so I took 3 ibuprofen. I had been holding off because I didn't want to mask my symptoms when I went into the doctor, but as my son said, there wasn't much chance of that!

It was finally time for my doctor's appointment at 3 pm, and I barely dragged myself over there. I was explaining to the doctor how fast it came on and how severe my symptoms were, when she glanced at the row of numbers the nurse had written down for my vital signs and said, "I see your OI is bad today, too - your heart rate is 100." I said, "That's not my heart rate - that's my temperature" and watched her eyes bug out!

Like most people with ME/CFS, my "normal" temperature runs low, usually about 97.5 and even when I get a "fever," like with bronchitis, it rarely rises above 99. I think this is only the second time my temperature has risen above 100 in my 14 years with ME/CFS!

She agreed with my assessment that this was almost certainly the flu, given how fast it came on and the high fever. The lab in their office was closed yesterday, so she couldn't swab me for flu but felt it was prudent to get me on Tamiflu right away. She also decided to treat the bronchitis with antibiotics, given my history with it and how prone people with ME/CFS are to bacterial infections.

Before I left, she asked how my chronic yeast overgrowth was doing. I reported that it was still fairly bad; I was still taking Diflucan, alternating days with 1 pill and 2. She told me to go back up to 2 pills a day while I'm on antibiotics...I know this drill by now!

So, it seems I have the flu, bronchitis, and my usual yeast overgrowth. I am now taking antivirals (Tamiflu), antibiotics, and doubling up on my usual antifungals. I should have all bases covered now! Within a few hours of taking the first Tamiflu, my fever began to drop, so I am hopeful this will help and will also prevent my immune system from going crazy and causing a long-term relapse. My son got the flu two Novembers ago, and he was badly crashed for over two months (we didn't realize it was the flu until later).

What makes this even more remarkable is that, because of the immune dysfunction in ME/CFS, my immune system over-responds to viruses, so while I may crash from the immune symptoms when exposed to a virus, I almost never actually "catch" a virus. In my 14 years with ME/CFS, I have never had the flu before and rarely, if ever, catch colds. Oddly, I also just caught my first stomach virus in 14 years at Christmastime. I wonder if this means that my immune system is becoming more "normal"?

Have you had the flu since getting ME/CFS? What has been your experience with infections?

Bronchitis...Here We Go Again

Unbelievable. I've been feeling pretty good the past few days, but last night while we were watching TV, I had a little tickle at the back of my throat. My husband got me a sugar-free lozenge, and we went to sleep. By the middle of the night, I was coughing and could feel the chest congestion starting. I woke up this morning with full-blown symptoms - chest pain, tightness & congestion, constant wet cough, wheezing. All of this developed literally overnight!

My son and I both struggle with bronchitis several times a year, though immune modulators like inosine and low-dose naltrexone have helped reduce the incidence.

We are not unusual among those with ME/CFS. The specific type of immune system dysfunction in ME/CFS (Th2 dominant) makes its patients more prone to bacterial infections: our immune systems over-react to viruses and allergens and under-react to bacteria. So, we almost never get colds, but the tiniest bit of congestion and...bam! We've got bronchitis again. For my younger son, it's usually sinus infections.

Both of us have albuterol inhalers now, which help, but it still feels impossible to stop this runaway train once it starts. I already made an appointment with our doctor for tomorrow so she can listen to my lungs - fortunately, she has a very good understanding of ME/CFS and our chronic problems with bronchitis. She always treats it aggressively because she knows it could easily turn into pneumonia with us.

I tried, last fall, to get rid of it myself without antibiotics, since (like many with ME/CFS)  I have chronic yeast overgrowth that is severely flared up by taking antibiotics. I used the inhaler, took maximum strength Mucinex round-the-clock, decongestant during the day, allergy meds, and all sorts of herbal antivirals and antibacterials. But, as my husband pointed out, waiting to see the doctor only resulted in my needing 3 rounds of antibiotics instead of 1 and being badly crashed for over two months. I've learned my lesson - better to get in immediately, take those damn antibiotics, and nip it in the bud. The weather is just starting to turn nice this week, and I really don't want to spend the next couple of months in bed!

So, here I sit, coughing like crazy, dialing back my planned activities today. I still feel good this morning (other than the chest symptoms), but I know what's coming  I've been on this train before. I'll see my doctor tomorrow and hopefully get rid of this infection before it has a chance to dig in.

Have you experienced these kinds of chronic bacterial infections?

14 Years Ago Today...

Happy Illiversary to me!

14 years ago today, my life forever divided into Before and After, though I had no idea at the time.

On March 2, 2002, I had a typically active Saturday - step class at the Y while my sons were in their swim class, grocery shopping, cleaning the house, and then having friends over for a dinner party. The only sign that anything had changed was that I had a severe sore throat at bedtime and felt more worn out than I normally did.

The next morning, I woke up feeling horrible and figured I had some sort of virus, but we went ahead with our plans to spend the day in Baltimore with our sons. I felt awful through the whole thing. In this blog post from my 7th ME/CFS anniversary, I describe the surreal experience of that trip.

The funny thing is that even though I felt so bad that day, I still had no idea that my life had just changed dramatically...forever. I thought I'd feel better in a few days. And, in fact, I did feel a little better after about 5 days, well enough to go visit my newborn niece, though, of course, I quickly went back to feeling sick in a crazy up-and-down pattern that seemed completely random at the time. It would be a full year before I finally got an accurate diagnosis of ME/CFS (and I know I am one of the lucky ones for diagnosis only taking a year!).

My husband and I in Baltimore this weekend

Coincidentally, my husband and I spent this past weekend in Baltimore again. I'm happy to report that it was much better than that long-ago trip 14 years ago, mostly because I know my illness and my limitations now and have learned to live with my restrictions. I took two naps on Saturday, limited my time at the art museum to under an hour, and wore my heart rate monitor everywhere. We were back in our hotel room watching Netflix in bed by 8 pm! Still, we had a very nice weekend together, and I call that a victory, especially since I can still remember - vividly - how horrible I felt on that trip 14 years ago.

In front of the Baltimore Museum of Art (I'm awful at selfies!)

I used to get upset every March 2, but I have long ago accepted my "new normal," and I am quite happy with my life now. Of course I would prefer to be well, but I've learned to live for today and I still have plenty of hope for the future, too.

I am feeling pretty crummy today, ironically, which is fairly uncommon for me now to have a bad crash day. I suspect much of this crash is due to emotional upset over some family members - you'd think they'd understand after 14 years, but some of them never will. Plenty of treatments have helped my sons and I to improve our quality of life. As we often say, nothing helps a lot, but a lot of things have helped a little, and those little improvements add up.

So, Happy Illiversary to me!

Studies show that about 80% of those with ME/CFS can name the exact date when their illness began.

How do you feel about your anniversaries of getting sick?

Summary of TV Reviews

After putting together a listing of all of my book reviews and movie reviews from 2015, I decided I should also list the TV shows I have reviewed. All of these lists are available anytime from the tabs along the top of the blog (and will be updated there), but I am also listing my TV reviews here since there aren't many yet (I just started writing TV reviews in September 2015). These are all shows that I or my entire family have enjoyed, arranged by genre. 

What are some of YOUR favorite TV shows?

TV Reviews

KEY: Available for free (or with subscription) from:

AP = Amazon Prime

C = Cable and/or Cable On Demand

I = On network’s own website

N = Netflix

(Offerings from subscription services change all the time, so double-check. Also, some shows are available for an additional fee on Amazon Prime whether you subscribe or not. Most networks offer some episodes of every show for free at their own websites. Check out this post for a comparison of ways to watch TV/services available.)

Comedy

Crazy Ex-Girlfriend (also a musical!) (C, I) – The CW

Grace and Frankie (N) - Netflix

Drama

The Good Wife (AP, C, I, N) – CBS

Madam Secretary (C, I, N) - CBS

Mr. Robot (C, I) - USA

Dramedy (both Comedy & Drama)

Orange is the New Black (N) - Netflix

Red Oaks (AP) – Amazon Prime

Transparent (AP) – Amazon Prime

Younger (C, I) – TV Land

Crime/Mystery/Thriller

5 Days (AP) – BBC

Blindspot (C, I, N) - NBC

Colony (sci fi) (C, I) - USA

How To Get Away with Murder (C, N, I) – ABC

Legends (C, I, N) - TNT

Limitless (C, I) – CBS

The Mysteries of Laura (C, I, N) - NBC

Quantico (C, I) - ABC

The Wire (AP) - HBO

TV Tuesday: Grace and Frankie

We are still exploring our new Netflix subscription (and, yeah, watching way too much TV!). In between binging on Orange Is the New Black, we sometimes have time for other shows.

I particularly relish my lunchtime TV viewing, when it is just me, alone in the quiet house, taking a break from work...and with no males around to choose the shows! This is when I watched my girl-shows (that sounds vaguely dirty, but you know what I mean), like Younger and Crazy Ex-Girlfriend and Transparent. My newest lunchtime discovery is Grace and Frankie.

This half-hour comedy stars Lily Tomlin, Jane Fonda, Martin Sheen, and Sam Waterston. Enough said. I was sold when I heard the cast list! They are all wonderful in this show with a very unique premise (Lily Tomlin was nominated for both a Golden Globe and an Emmy for her role).

In the first episode, Robert and Sol, played respectively by Sheen and Waterston, each tell their wives that they are lovers. Robert and Sol have been business partners for 20 years but have kept their personal relationship a secret. Now they are coming out of the closet, leaving their wives, and moving in together. The news is a complete shock to their wives (and their grown children). Grace, played by Fonda, is a perfectly coiffed woman who started her own business. Frankie, played by Tomlin, is more of an aging hippie type, dressing in loose colorful clothing and into artistic pursuits.

Both women are completely blown away by their husbands' secret and look to escape from their respective homes. They both set off for the beach house that the four of them bought together many years ago. Of course, the two of them are complete opposites in every way and don't even like each other much, but they are thrown together and both feeling lost.

There is nothing earth-shattering about this show, except for the incredible combined talent of its main actors, but it is fun and light and enjoyable. Fonda and Tomlin each play stereotypical roles that they have played before, but all four actors are just fun to watch. There are some issues addressed here, particularly being left by your spouse later in life and just aging in general, but for the most part, it is a fun confection, and it's enjoyable to watch these four together.

Grace and Frankie is shown exclusively on Netflix.

Which TV comedies are you enjoying?

Movie Monday: All Good Things & Project Almanac

Our college son was home sick all last week - "just" a cold, but you know how a simple infection can knock us out! He was couch-bound all week which meant LOTS of TV and a couple of movies. I wasn't feeling well myself, so that worked out fine. My husband, our son, and I watched two good movies on Netflix:

First, we watched All Good Things, a creepy psychological thriller based on the true story of Robert Durst, who was suspected of killing his wife but never convicted. Ryan Gosling plays David Marks (the Robert Durst character), a lackadaisical young man in the shadow of his father, played by Frank Langella, who's a powerful, wealthy real estate mogul in 1970's New York. David falls for Katie, a sweet young woman played by Kirsten Dunst whom his father disapproves of because she isn't from the right kind of family. They marry anyway and move to Vermont to open a natural foods store. Their happiness is short-lived, however, as David's father convinces him that he must join the family business or else Katie will eventually leave him because he can't earn a good living.

David reluctantly joins his father's (rather criminal) business alongside his older brother, and his downward spiral begins. He knows he's sold out and given up his dreams and becomes more and more bitter. In addition, Katie wants to have kids and David is firmly against it, which further broadens the rift growing between them. They have two gorgeous houses - one in the city and one on a lake - and all that money can buy, but neither of them is happy, and David seems more and more withdrawn. As you might recall from the news reports in 1982, Katie goes missing one night, and though foul play is suspected, nothing is ever proven and no charges are ever brought.

The entire movie is framed by a courtroom scene, with voiceovers of an attorney questioning an elderly David about all of these events, though we don't find out until the end of the movie exactly why he is in court. It's a creepy psychological thriller that keeps you guessing. Ryan Gosling is perfect in the lead role, playing his usual silent but deep and troubled guy with a chilling coldness. Kirsten Dunst is also excellent as Katie, and Frank Langella plays the controlling, powerful father very well. All in all, it is a chilling movie based on a real-life unsolved case - not exactly uplifting fodder but gripping and darkly suspenseful.

The next night, we switched gears and watched a fun, fast-paced sci fi movie called Project Almanac, about a group of teens who time travel. David is obviously very smart - the movie opens with his video application to MIT, as he and his friends demonstrate the drone they built, while his sister, Christina films them. In fact, the entire movie is supposedly filmed with Christina's hand-held camera in that style made popular by The Blair Witch Project. Accepted to MIT but unable to pay for it, David searches his attic for projects left by his scientist dad that he might work on to apply for a scholarship. He and Christina find an old video camera, with footage from David's 7th birthday ten years earlier, the day that his dad died in a car accident. Watching the video, David recognizes his current self in a mirror, which sets him, his sister, and his friends on a search for a way to time travel. They discover a hidden compartment in the basement where his dad hid top-secret government blueprints and equipment for Project Almanac.

The geeks put their heads together, go shopping, and finish putting the time travel apparatus together using the blueprints over the course of several weeks. Cute girl Jessie joins their ragtag group, and they begin traveling back in time. They start slowly, going back a week so that one of their group can retake the chemistry test he failed because he was busy working on the time machine. They make other trips back for various reasons, until they start to notice some unintended consequences. You can guess the rest - as in any time travel story, you should never tamper with the past! Things spin out of control as David frantically tries to fix their mistakes.

I love time travel stories for their mind-bending and thought-provoking twisty plots, though this one has a few holes in it. I see that some critics really hated the hand-held camera approach here or picked apart the plot holes, but the three of us just went along for the ride and enjoyed it. It's a fun-filled, action-packed teen time travel movie, with the usual subplots about friendship and love, and of course, that hard-won lesson: never tamper with the past.

Have you seen any good movies lately?

Weekly Inspiration: Gratitude

Earlier this week, I posted about learning to focus on the positive in the midst of a rough week, with #GratefulToday...And Good Doctors. I thought that gratitude was a perfect topic for a Weekly Inspiration post!

I found a wonderful quote from a book that I read last fall, If the Oceans Were Ink: An Unlikely Friendship and a Journey to the Heart of the Quran by Carla Power (review here), a memoir about a Jewish (though mostly secular) woman's quest to learn about the Quran from a friend/colleague of hers, a Muslim scholar living in England with his family. She spent a year immersing herself in the Muslim faith and learning how real Muslims live (not the extremists who too often dominate the news).

In this passage, she is talking about her friend, affectionately known as "the Sheik," and his family and her observations of their focus on gratitude:

"Spending time with the Sheik and his family, I was struck at how grateful they were for small things, and how often. In Sumaiya [his daughter] and her sisters, I saw none of the vague dissatisfaction I'd seen flourish around me - indeed, in me - growing up. As a member of the American middle class, I was raised in a nation of strivers, a nation founded on the right to pursue happiness. Our discontent was productive. It got things done. The drive to do better propelled you through graduate school and up career ladders. Through spin classes and salary negotiations. A world of infinite favors didn't yield reliable results. My secularist's do-it-yourself existence did not get me into the habit of being grateful for date palms, fragrant herbs, and seas."
          - If the Oceans Were Ink: An Unlikely Friendship and a Journey to the Heart of the Quran by Carla Power

Maybe that is why I have become so much more aware of gratitude - and so grateful for the small things in life - since becoming ill. Most of us living with ME/CFS and other chronic illnesses have been removed from that "nation of strivers." No longer propelled by drive or able to get much done, we have, by necessity, slowed down such that we are able to notice those small joys and feel gratitude for the things we do still have in our lives.

Since posting my gratitude post earlier this week, I have kept up my pledge to post on social media (for me, Twitter and Facebook) each day using #GratefulToday. I am loving the habit of pausing each day to consider what I am grateful for. Even more, I am enjoying hearing about what others are grateful for in their lives. It has been inspiring to hear about the tiny victories in people's lives, the small things they are grateful for, and especially, the ability to recognize and feel gratitude, even on a really bad day.

I hope you will join me and others in sharing your own #GratefulToday gratitude each day. You can leave a comment here on the blog, use #GratefulToday on social media (I check it each day!), or follow me on Twitter (@livewithmecfs) or on Facebook and reply with your own gratitude there.

This small habit of daily gratitude has already helped me (especially in dealing with a difficult family member this week), so join in!

Today, I am grateful for a quiet Sunday at home with my husband. What are YOU grateful for today?