Tuesday, May 03, 2016

TV Tuesday: When Good Shows Get Cancelled

My plan for today was to write a full review of You, Me, and the Apocalypse, a funny, suspenseful dramedy that aired on NBC this past fall. I'd been meaning to get to it for a while, and planned to work my way through the 10 episodes of the first season the past few weeks so I could write about it here. I thought it started out just OK, but it grew on me with each episode, as I got to know the characters and became accustomed to its format. It's about a huge comet heading straight for earth, big enough to cause the next big extinction event (ahem, us). As the show starts, the comet is about 30 days away from its impact with earth, and we meet various people around the world coping with the news. Jenna Fischer (Pam from The Office) stars as a kind mom who is in federal prison because she took the fall for her son who hacked the NSA. Rob Lowe plays Father Jude, not-your-usual-priest who has been assigned by the Vatican to find the next messiah (since this seems to be the end of times). And there are lots of supporting actors in all kinds of roles. We know from the opening scenes of the first episode that many of these people from all over the world somehow end up in a bunker together under the London suburb of Slough on the day the comet actually hits...but we don't know how they all end up there together.

So far, so good. Like I said, the show was really growing on me, and I've been enjoying it and looking forward to each episode, as the comet gets closer to earth and time is running out. I've come to care about the main characters, and with just a few episodes left to go in the first season, wanted to know what would happen to them.

Then...BAM! I checked online yesterday and found that the show has been cancelled! This first season is also its last. I invested that time, grew to like it, and then they pulled the rug out from under me. This isn't the first time I've seen a good show get cancelled, and I bet this has happened to you with favorite shows, too.

So, instead of writing a full review of You, Me, and the Apocalypse (though all of its first season is still available On Demand and on Amazon for $1.99 an episode), I decided to instead write about how and why good TV shows get cancelled.

The Washington Post had an interesting article in the fall about how the networks make these seemingly random decisions. For instance, FX puts equal weight on the producers' opinion, the critics, and the public. The article also explains how these decisions are changing with the new ways that people are watching TV, so that networks have to consider not just who is tuning in when the show airs, but how many people are watching it later. Good thing - we don't watch anything when it actually airs anymore!

Here is an actor's perspective about why shows get cancelled, focused on one of the most puzzling cancellations of modern times, Heroes. That show had a huge fan base, but still got the ax. Interestingly, this past fall - 5 years later - it was revived with Heroes Reborn.

And this recent list from TV Cheat Sheet gives a depressing run-down of current shows that might possibly be on the chopping block.

My family has seen many of our favorite shows cancelled after just a single season. Fox in particular seems to chop some amazing shows without giving them much of a chance, but I guess that's show biz! Here are some of our past faves that got the ax:
  • Firefly -  Perhaps the classic example of a fantastic show with a huge fan base that was cancelled too early, this 2002 sci fi show featured Nathan Fillion (of Castle fame) as the captain of a ragtag group of space outlaws. We were late to this one and didn't see it when it first aired but have watched its 14-episode first (and last) season on DVD. At least they made a movie, too! (TV show available free on Amazon Prime).
  • John Doe - Also in 2002, my husband and I really enjoyed John Doe, about a man with no memory who helped police solve crimes while looking for clues to his own identity. They set up a great story in a first season with 22 episodes but then left us hanging.
  • Life on Mars - this unique time-travel show, with Jason O'Mara as a modern NYPD detective who finds himself back in the 1970's, was based on a UK show of the same name and was an outstanding show. It got chopped after just one amazing season (18 episodes), but to their credit, the show's creators hurried up and rewrote the season finale to wrap up the whole show.
  • Terra Nova - Our whole family LOVED this show, about a family on a dying future earth who is sent back 85 million years to prehistoric times, where humans are trying to establish a colony to give themselves a second chance. This one also starred Jason O'Mara (tough luck, Jason). Time travel, adventure, and dinosaurs - what more could you want? Our sons were devastated when it was cancelled after just one excellent season (13 episodes) (available on Netflix).
  • Alkatraz - My son and I loved this show! A unique premise, combining crime show with the paranormal. Prisoners and guards who mysteriously disappeared from Alkatraz in 1963 suddenly begin to reappear in present day, and a secret government group must work quickly to recapture them. This show was SO cool, and we loved seeing our old buddy Jorge Garcia (Hurley from Lost). This captivating show lasted just one season (13 episodes).
  • Awake - In the same season as Alkatraz, my son and I also enjoyed watching Awake, another show with a touch of the supernatural (seeing a pattern here?). Jason Isaacs stars as a father whose life is split into two different realities after a car accident. In one, his wife was killed, and in the other, his son was killed. The primary driver here is wondering whether this is really happening to him or whether he is dreaming (or crazy). We couldn't wait to see more, but it was cancelled after one 13-episode season (my son tells me it is on Netflix!)
  • Believe - My son and I also loved this show (we used to watch a lot of TV together when we were both home sick a lot) about a little girl with special powers who was being hunted by people that wanted to take advantage of her, with Jake McLaughlin (now on Quantico) as a convict tasked with protecting her. Fast-paced suspense plus a supernatural element - we were hooked, but it only lasted one season (13 episodes).
I could go on and on here! So many excellent shows never make it past their first season. We had some favorites that only made it two seasons, too, like Touch and Revolution.

How about you? What were some of our favorites that got cancelled? What would you like to see come back?

(NOTE: All of the above titles are available on DVD (our library has most of them) and some are available on Netflix or Amazon Prime, as noted.)

Terra Nova Trailer (available on Netflix):

Awake Trailer (available on Netflix):


Monday, May 02, 2016

Movie Monday: Bad Movies

One of my favorite podcasts is Pop Culture Happy Hour, which covers movies, TV, books, music, and more in a fun, informal group discussion each week. I look forward to each new episode and was thrilled a few weeks ago when their discussion centered on Bad Movies - movies that are so bad & so poorly made that they're actually fun to watch!

I was so tickled to hear them talk about Bad Movies because I have a long, fun history with this kind of movie!

First, back in college, my best friend and I inadvertently stumbled onto some really bad movies, just by going to our tiny college town movie theater at the wrong time and later making bad choices back home at the multiplex.

After graduation, I moved to New Orleans, where I met my future husband and a bunch of great friends who remain my closest friends now, almost 30 years later. We started a Bad Movie Night tradition. One of us would host the group at our apartment, with a line-up of the worst, most obscure movies we could find (back then on VHS!). We'd start with a classic cartoon warm-up, like Gumby & Pokey or the Elmer Fudd/Bugs Bunny operas (never seen these? They are amazing!). Then, we'd watch 2 or 3 Bad Movies. Being in our early twenties, there was plenty of beer & snacks, too. Those were fun nights...

So, here is a partial list of some of the memorable Bad Movies I've seen over the years (with links to IMDB for full - often hilarious - descriptions):

Liquid Sky (1982) - bizarre movie about tiny aliens who come to earth looking for heroin but decide they like hormones secreted during orgasm better - even stranger than it sounds! My college friend and I walked out of it once then went back to see the rest another night.

Repo Man (1984) - Emilio Estevez stars as yup, a repo man and wackiness ensues. We actually walked OUT of Liquid Sky and ended up in this one!

Attack of the Killer Tomatoes (1978) - Just what it sounds like & very silly. One of the first movies we watched on Bad Movie Night - a classic. I think we watched a couple of its sequels, too (yup, there were sequels, though I see we missed Killer Tomatoes Eat France!).

Santa Claus Conquers the Martians (1964) - Martians steal Santa. Because they want him for themselves, duh! A young Pia Zadora stars.

Killer Klowns from Outer Space (1988) - Aliens who look like clowns terrorize a small town - a horror movie but also hilariously funny. Mummifying their victims in cotton candy cocoons is worth the price of admission. This one debuted on Bad Movie Night, but we've actually seen it a few times (and own the DVD) - really awesome watching it with my mom after her back surgery when she was heavily medicated! Probably a really bad idea if you have a clown phobia.

Cannibal Women in the Avocado Jungle of Death (1989) - Starring Adrienne Barbeau in a typically skimpy costume. A modern retelling of The Heart of Darkness by Joseph Conrad (seriously! my friends didn't believe me when I shouted that out during the movie, but it's true - very literary stuff here).

The 5000 Fingers of Dr. T (1952) - We just watched this one last year (the link is to my own review). We didn't intend to have a Bad Movie Night, but it turned out that way...and it was OK because we saw it with our old friends from New Orleans. A Dr. Seuss musical ostensibly for kids but really, really weird.

(You can find awesome trailers for every one of these on YouTube).

So, those are some of the highlights (or lowlights?) of my Bad Movie experiences.

How about you? Have you seen any movies so bad that they were amusing to watch? Have any favorite Bad Movies or traditions of your own? Bad Movie Night might just become your tradition, too!

Trailer for Attack of the Killer Tomatoes, a classic Bad Movie:

Tuesday, April 26, 2016

TV Tuesday: Orphan Black

I had planned to write about another show today but just realized that I've never reviewed our all-time favorite TV show, Orphan Black. This unique sci fi thriller with a sense of humor is so stunningly good that when we first discovered it, my husband, son, and I binge-watched the entire first season in a matter of days! The fourth season has just started, so this is a great time to catch up.

In the first episode, Sarah Manning, a sharp-tongued street-smart Brit in Canada, is standing on a train platform when she see a woman who looks exactly like her step in front of an oncoming train and kill herself. Shocked and horrified, Sarah grabs the woman's wallet so she can find out who she was and runs off. The mystery woman's ID identifies her as Beth Childs, and Sarah sees from her photo that she was absolutely identical to Sarah. An orphan brought up in foster care, Sarah doesn't know of any genetic family members, but the temptation to take advantage of the situation is great.

Sarah assumes Beth's identity, with the goal of cleaning out her bank account to help her out of the difficult situation she is in. She discovers that Beth was a police officer, and taking on her identity gets more and more complicated. She meets Beth's boyfriend, Paul, and her partner, Art. She also meets other women who are identical to her, one at a time. Each one is unique in hairstyle, clothing, and other aspects of outward appearance, but they are clearly identical. In fact, Sarah soon learns they are clones.

I don't want to give away any more of the plot because there are surprises around every corner in this fast-paced thriller, but it keeps you guessing...and watching. Tatiana Maslany is absolutely amazing as Sarah - and all of the other clones! - juggling multiple roles, looks, accents and more in a way that seems impossible. There is Allison, the high-energy suburban mom; Cosina, the dredlocked scientist; evil Rachel; and Helena (possibly our favorite), the wild-eyed Ukrainian who will protect her "sestras"at all costs. The clones gradually meet each other and band together, trying to get to the bottom of the convoluted mystery of who they are and where they came from. One of the best scenes in the show is a clone dinner party at the end of season 3 when they are all in the same room together - awesome.

Supporting Tatiana in her multiple roles are other excellent actors. Our hands-down favorite is Jordan Gavaris as Sarah's snarky, flamboyantly gay foster-brother, Felix, who provides a lot of laughs on the show and often wears just an apron over his naked body when working on a piece of art. Kevin Hanchard is intense and concerned as Beth's cop partner, Art. Maria Doyle Kennedy plays Sarah and Felix's caring foster mom, Siobhan, who knows a bit about Sarah's mysterious beginnings. Another of our favorites is Kristian Bruun as Donnie, Allison's husband - those two are fabulous together, especially in later seasons. And little Skyler Wexler is absolutely adorable as Kira, Sarah's beloved daughter.

The excellent acting, wholly unique plot full of surprises, non-stop action, and complex ever-growing mysteries make this an outstanding show in every respect. It is incredibly addictive. Watch the first episode of the first season, and I guarantee you will want to watch them all! Just writing about it makes me want to watch the latest episode (but we promised to wait for our college son to come home after exams later this week).

Orphan Black is produced by BBC America and filmed in Canada. Here in the US, it is available On Demand through cable (season four currently airing). Amazon Prime has the first three seasons of Orphan Black available to subscribers for free (that alone is worth the fee!). It is only available on DVD through Netflix, not streaming.


Sunday, April 24, 2016

Weekly Inspiration: Survival is Insufficient

Today's inspiration comes from a book I recently read and loved, Station Eleven by Emily St. John Mandel. You may have heard of this very popular and highly acclaimed novel, since it was on many Top Ten lists for 2014 and was short-listed for the National Book Award.

The novel takes place 20 years after a flu pandemic wipes out 99% of the world's population, though the action moves back and forth in time so that you get to know the characters both before and after the horrible event. In this world 20 years after the pandemic, with no infrastructure and people scattered in small enclaves, there is a traveling troupe of actors and musicians. They go from community to community along the shores of Lake Michigan and Lake Superior, performing Shakespeare plays and classical music. Painted on the side of their caravan is this motto:
"Survival is Insufficient"
          - from Station Eleven by Emily St. John Mandel 

And I thought that phrase was also perfectly fit for a life with chronic illness.

It is all too easy when you are chronically ill to get wrapped up in merely surviving, just trying to get through each day. When your every moment is ruled by restrictions and limitations, you can easily become focused only on survival. But, as this traveling acting troupe points out, survival is not life, and you need more for a real life - small joys, moments of happiness, art, music, and more.

It has taken me a long time to figure this out for myself - certainly in those early years, I was almost entirely focused on survival (though when you have little kids around, they remind you constantly that there is more to life). Now, though, I find happiness, fulfillment, and moments of joy in many ways throughout each day, like:
  • Lying outside on my deck, looking up at the clouds, listening to the birds (so many different kinds!) and the wind through the trees.
  • Reading a book that takes me to another world.
  • Listening to favorite music that makes me sing out loud or discovering new songs and artists.
  • Lying on the couch at night, with a square of dark chocolate and a mug of Raspberry Zinger tea, enjoying favorite TV shows with my husband.
  • Connecting with a friend - old or new - online.
In all of these ways - and many more - I am constantly reminded that "Survival is Insufficient" and that my chronic illness doesn't have to define my life. There is still plenty of joy to be found in this new life.

How do you find joy in your life? What things - art, music, outdoors - lift you out of a life of illness and remind you that you are more than your illness?

P.S. If you enjoy reading, I highly recommend Station Eleven (the link takes you to my review at my book blog - don't worry - no spoilers!). I bet it is great on audio, too.

Tuesday, April 19, 2016

TV Tuesday: Bosch

With a lot of our favorite winter shows wrapping up on cable, we've been watching more on Amazon Prime & Netflix lately. One of our favorite Amazon shows just came back for its second season, and it's better than ever!

My husband and I are both long-time fans of the crime thrillers starring LAPD detective Harry Bosch, written by Michael Connelly. He has written reliably fast-paced, intriguing page-turners for decades. Besides the Bosch novels, he is also the author of the Lincoln Lawyer series, which has been adapted into movies starring Matthew McConaughey. Amazon Prime's show Bosch is based on his best-selling books, and they have done a fantastic job of bringing this popular series to life on the screen.

Harry Bosch, played by Titus Welliver ("the man in black" from Lost), is an experienced LAPD homicide detective who is known for his tenacity...and for doing whatever it takes to bring a killer to justice. He is often in trouble with his superiors, but he gets the job done. He is driven in part by the still-unsolved murder of his own mother. Harry's partner, Jerry Edgar - affectionately called J. Edgar by Harry, is always perfectly dressed, and he and Harry work well together. Harry is divorced, and his ex-wife, played by Sarah Clarke, and teen daughter live in Las Vegas. Harry gets along well with his immediate supervisor, Lt. Grace Billet, played by Amy Aquino, but he often clashes with Deputy Chief Irvin Irving, played by Lance Reddick, mostly because Irving pays more attention to politics and climbing the ladder than to police work.

In season one, Bosch and J. Edgar and their colleagues were after a serial killer, while also trying to solve a decades old case based on children's bones found on a hillside. Those two cases were interwoven into the entire season, with bits and pieces of Bosch's personal life feeding into the ongoing story. Season two is based on Connelly's novel Trunk Music, where a dead body is found in a car trunk. Again, the main case carries on through the entire season, with other secondary plot lines coming into play, including more with Bosch's ex-wife and daughter and Deputy Chief Irving's son (who is a police officer) going undercover with IA to try to catch some dirty cops.

The show has been excellent right from the very first episode. It sticks closely to the books - with the characters and major cases - while adding in a lot of extra detail on the characters' personal lives and secondary cases. The tone, the actors, the pace, and the ambience (including Bosch's beloved jazz as the soundtrack) are all just perfect for fans of the books. Titus Welliver in particular is the quintessential Bosch, while J. Edgar and Deputy Chief Irving also seem exactly as I pictured them in the novels. It's a very well-done show, with gripping, suspenseful mysteries but also plenty of emotional depth and human interest. We are really enjoying seeing one of our favorite fictional characters come to life!

As an Amazon Original Series, Bosch is available only on Amazon, free to Prime members or $1.99 an episode for non-members.

Monday, April 18, 2016

Movie Monday: Ex Machina

Finally! We've been totally focused on TV for the past couple of months (thanks to our new Netflix subscription, plus keeping up with our favorite cable shows), but we finally found time to watch a movie last night...and it was worth the wait! Our 18-year old son even watched it with us (a minor miracle).

We watched Ex Machina, one of last year's highly acclaimed movies. It's a combination sci fi and psychological thriller, with a quiet drama-like tone to much of the film. Caleb works as a programmer for a large corporation and wins a lottery to spend a week with the company's mysterious, reclusive founder. He is whisked away by helicopter over miles and miles of wilderness to what looks like a quiet retreat among jaw-dropping natural beauty, surrounded by snow-covered mountains. Caleb meets the famous CEO, a heavily bearded guy named Nathan wearing jeans and a t-shirt and bare feet, and is surprised to find that the home is actually a high-tech underground fortress. Nathan is a bit overwhelming and disconcerting but seems like a good guy, who greets Caleb warmly and tells him he just wants to talk and have a beer with him.

Then Nathan explains that the real purpose of Caleb's visit is to help test Nathan's invention: the most advanced Artificial Intelligence ever devised. Nathan tells Caleb his job is to perform the Turing Test, a classic test defined by Alan Turing to see if an AI is advanced enough to be indistinguishable from a human. Caleb is to have a series of conversations with Nathan's AI, while observed by Nathan. The first day or two are fascinating but then things start to get a little weird. Nathan's AI is distinctly female, though only her face and hands have a skin-like covering. The rest of her looks like a conglomeration of wires and lights and electronics, encased in a workout clothes-like metal outfit that leave much of her inner workings visible. Still, she is remarkably life-like, and Caleb begins to think of her as a real person.

Up to this point, the movie is fairly quiet in tone, with little action, though there is a vague feeling of unease and suspense building. Nathan seems to be hiding some secrets, Caleb begins to feel more like a prisoner than a guest, and it's unclear where this test is heading or how it will end. Toward the end of the film, the pace picks up considerably as the sinister tone builds. We were glued to the screen, as unexpected surprises and secrets unfolded and the tension built. All three of us enjoyed the movie very much and found it quite thought-provoking, too. Afterwards, we discussed if the events in the movie could really happen, if technology was moving toward this very point, and about some of the more paranoid fears about AI that my husband said had been voiced by real-life high-tech geniuses.

All in all, it was a suspenseful movie with sci fi elements, some action, and a thoughtfulness that we all enjoyed. It's pretty fascinating that a movie with only a few actors (one of them portraying a robot) was so engrossing. Ex Machina gave us plenty to ponder, plus was entertaining and fun. Our son enjoyed it so much, he is watching it again tonight with his girlfriend!

Ex Machina is currently available for free on Amazon Prime, through Netflix on DVD only, at Redbox, and probably through most cable streaming services, too.

Friday, April 15, 2016

Rituximab - A Promising Treatment for ME/CFS

Photo from Freeimages.com
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:

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?

Tuesday, April 12, 2016

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.

Friday, April 08, 2016

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

© | 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!

Thursday, April 07, 2016

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?

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.

Tuesday, April 05, 2016

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)?


Friday, April 01, 2016

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.

Tuesday, March 29, 2016

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!


Tuesday, March 22, 2016

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).


Sunday, March 20, 2016

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.

Friday, March 18, 2016

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!

Thursday, March 17, 2016

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.)

Tuesday, March 15, 2016

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?