ME/CFS Community Update

“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.' ” C.S. Lewis

 
I am still trying to catch up from my many travels the past two months. I finally cleared my e-mail inbox, but the list of things I want to cover here on my blog just keeps getting longer! I'm going to split the news I want to share with you into Community Updates and Research Updates.

Today's focus is on patients, with lots of exciting news from the worlds of patient communities and advocacy:

Our Own Local Support Group
The local support group I started nine years ago has grown to about 40 families in our region, with a variety of related conditions including ME/CFS, Lyme, EDS, POTS, and more - some with sick adults and some with sick kids, teens, or young adults. We had one of our local gatherings yesterday, meeting for lunch at a restaurant, with ten from our group able to attend. About half were mothers of sick teens/young adults and the other half were sick themselves, and two people were fairly new to our local group and had never met anyone else before. As always, the experience of meeting others with the same illnesses and experiences was reaffirming and helpful to us all. We talked for almost three hours (then I went home for a 90-minute nap!) about effective treatments, the best doctors in the area, our experiences, and more. It is always a very positive, supportive, and uplifting experience, even for someone like me who's been in the group since the beginning and sick for 17 years. As always, I highly recommend that YOU try to find others in your local community - it is life-changing. This article I wrote, Birds of a Feather - The Joys of Community, tells how our group started and provides tips for finding others in your area.

ME/CFS International Awareness Day and #MillionsMissing
This summary and photos from #MEAction of protests and activities held both publicly and online on ME/CFS International Awareness Day all over the world is truly inspiring. Take a moment to read through all the amazing events held on May 12 and to peruse the many photos of patients speaking up, in public and from their beds. Given how isolated and alone most of us were when we started on our illness journeys, it is stunning to see this evidence of patients coming together all over the world to be seen and heard. It gives me even more hope for a better future for all of us. If you didn't have a chance to take part in Awareness Day activities, in person or online, this year, maybe this moving sum-up will inspire you to get involved next year, if even from your couch or bed. After decades of isolation and ignorance, our voices are finally being heard, and it's a powerful thing to see.


Exciting News from Patient Advocate & Community Leader Jen Brea
It's been all over the internet this week - Jen Brea, co-founder of #MEAction and the filmmaker who created the ME/CFS documentary Unrest, is officially in remission. This blog post describes in her own words what happened and how she got to this point, and it's a remarkable story, given how severely disabled Jen was at various times and how well she is now (though still working hard at recovery and rehab). In her case, the underlying cause of her ME/CFS was several mechanical factors in her spine and neck that were corrected with multiple surgeries, something she and her doctors discovered entirely by accident. Although obviously, this will not be the case for every (or even many) ME/CFS patients, I do know others like her and it is likely behind some percentage of ME/CFS cases and so provides clues as to the wide variety of causes and factors in our very complex condition. In that post, Jen describes her elation at her remission, yes, but also her grief, trauma, guilt, and hope. Even if Jen's case is entirely different from your own, we should still be able to share in her triumph and learn from her experiences. There is still so much we have to learn about the various causes and factors behind ME/CFS for the millions of people suffering around the world - many of whom Jen has helped with her film, her advocacy, her activism, and her honest reaching out to others.

Jen Brea and her husband

Other ME/CFS Blogs
Finally, if you're looking to connect with others with ME/CFS online, Liz of the Despite Pain blog, put together a wonderful list of ME/CFS bloggers. Liz doesn't have ME/CFS herself, but she compiled this list for ME/CFS Awareness Day, in honor of her fellow chronic illness patients who do have ME/CFS and to help build awareness for our cause, which I think is a remarkable way to reach out. Check out her list (including this blog!) and go discover some new-to-you bloggers and other ME/CFS patients. It's a great way to begin building YOUR community!


Do you have any news to share from your local or online community? Leave a comment below to help spread the word and connect to other patients.

Weekly Inspiration: Thoughts on Illness from Being Mortal

Last fall, one of my book groups read Being Mortal by Atul Gawande, a nonfiction book by a medical doctor who writes about illness, death, and end-of-life issues from both personal and professional experience. The book is well-researched in its facts, and he is open and honest about his emotional experiences, with his father's illness and death and with his patients' various experiences. It is a moving and very powerful book, and we had a huge turnout for book group, and an excellent and in-depth discussion about it. You can read my full review of the book at my book blog. He covers the state of the medical profession today with respect to these topics and also some (far more hopeful) examples of new approaches, as well as what he learned personally through his difficult experiences.

While everyone should read this important book because we will all deal with sick and dying family members - and eventually, ourselves - one day, I also found that I related to many passages as someone not dying but living with chronic illness. Here are a few of the quotes that really struck me, with respect to my own life.

""No one pitied him as he wished to be pitied," writes Tolstoy. "At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted.""
          - Quoted in Being Mortal from a novel, The Death of Ivan Ilyich by Tolstoy.

I don't like the word "pitied" in this passage, but I can wholeheartedly relate to the sentiment - maybe swap out "pitied" with "understood" or "accepted." Certainly, especially in my early days of illness and anytime I crash/relapse badly, I crave to have someone treat me as my mother did when I was a sick child - to comfort me and take care of me. But Ivan Ilyich's experience with his terminal illness in this novel is much like the typical experience of people with chronic illness - it makes others uncomfortable and scares them, so no one will just admit what is happening and treat you honestly. I completely understand that (and I'm now interested in reading this Tolstoy novel!).

Here, in a later passage, Gawande refers back to the Tolstoy novel and explains it this way:

"Tolstoy saw the chasm of perspective between those who have to contend with life's fragility and those who don't. He grasped the particular anguish of having to bear such knowledge alone."
          - from Being Mortal by Atul Gawande

Ah, yes - he explains that far better than I could! That's the crux of it, isn't it? Life's fragility. It's what scares people so much, with chronic illness, as well as terminal illness or death. No one wants to accept the truth of your situation because of that underlying, unspoken fear that if it happened to you, it could happen to them. I think this is behind much of the denial we experience as those with chronic illnesses encountering healthy people, even (or especially) our closest family members.


Regarding the medical profession and being a doctor:

"If your problem is fixable, we know just what to do. But if it's not? The fact that we have no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering."
          - from Being Mortal by Atul Gawande

So many patients with ME/CFS (or undiagnosed tick infections) have experienced exactly this response from the medical community. One rheumatologist I saw during my first, mysterious year of illness gave me a cursory exam (clearly looking for the tender points of fibro, which I didn't have), wouldn't let me talk, and then dismissed me with "I have no idea what's wrong with you. Good luck," and walked out of the room. I was left sitting on the exam table in my paper gown, gutted by his lack of compassion, and I burst into tears. Thank goodness he was the exception for me and at the end of that year, I found a new primary care doctor who not only immediately recognized my illness as ME/CFS but also knew enough to offer me some treatments. But I know I was one of the lucky ones, that many patients never find a doctor like mine, and treatment from medical professionals like Gawande describes is far more common.

"Whatever the limits and travails we face, we want to retain the autonomy - the freedom - to be the authors of our lives. This is the very marrow of being human."
          - from Being Mortal by Atul Gawande

Here, he has realized what is at the center of end-of-life issues: the need to be in control. He finally recognized the very dehumanizing feeling of having no say in what happens to you. Again, this applies equally well to those with chronic illness, and is why I often express here on the blog the importance of being your own advocate, learning as much as you can about your illness, and asking your doctor for specific treatments. The old model of the all-knowing doctor simply doesn't work for us (and according to Gawande, it rarely does in any circumstance!). We need to be partners in our own care. Check out my page on Effective Treatments for ME/CFS for a roadmap on how to get started in this critical part of our illness journey.

As you can see, I got a lot out of this very important and powerful book. While it brought back memories of my own dad's death from melanoma a few years ago and thoughts about the wishes of my 94-year old father-in-law, much of the book also felt relevant to my own life with chronic illness. I highly recommend this book.


Have you read Being Mortal yet? I would love to hear your thoughts - about the book or these quotes I have excerpted here - in the comments below.

I read Being Mortal in print:


It is also available as an audio book - at the link, you can listen to a sample, which is about the passage from the Tolstoy book:

TV Tuesday: Proven Innocent

One of the many new spring TV shows my husband and I are enjoying is Proven Innocent, a legal thriller focused on wrongful convictions.

Madeline Scott, played by Rachelle Lefevre, and her brother, Levi, played by Riley Smith, were convicted of the murder of their friend, Rosemary, when they were just teenagers. The pair spent ten years in prison and then were finally freed, when a lawyer named Easy Boudreau, played by Russell Hornsby, overturned their conviction. Madeline got her law degree and is now in practice with Easy, focused on wrongful convictions. The man who put Madeline and her brother in prison is Gore Bellows, played by Kelsey Grammer, and he is now a powerful District Attorney running for State Attorney General, so Madeline finds herself going head to head with him in many of her cases. He still believes she is guilty and has no respect for her innocence project, but she could definitely get in his way of climbing the political ladder, as the overturned convictions make headlines.

Each episode features a different case, with a prisoner or someone who believes in their innocence asking the team to take on the case. In that way, it plays like many legal thrillers, with mysteries, evidence, and a courtroom scene or two. There are also flashbacks and a secondary investigation, running throughout the season, as Madeline is determined to find out who really killed Rosemary all those years ago. Many of the cases feature details that you could find in today's newspapers, making them current and relevant. Lefevre is convincing as the determined and single-minded Madeline, and Grammer makes a menacing evil politician, all the more frightening because he truly believes he is doing the right thing. We are nine episodes into season one, and so far, the team has won most of their cases and gotten wrongful convictions overturned, but we figure they can't always be successful, and a recent episode did end in a devastating loss. We are enjoying the suspense and action, as well as the personal drama behind the scenes and the varying stories in each episode. It might be a little bit too optimistic in the team's success rate, but it's fun to root for the good guys!

Proven Innocent airs on Fox Fridays at 9 pm, and we have been watching it On Demand (we are 9 episodes into the 13-episode season). All of the episodes have aired now, and all are still available On Demand or on the Fox website, but I see that the last episode expires on May 17 (I hate when they do that), so you might have to binge this week, like we will! I believe it is also airing on Hulu or you can watch on Amazon for $1.99 an episode or $19.99 for the first season.

Have you seen Proven Innocent yet? Are you enjoying it?

What YOU Can Do for International ME/CFS Awareness Day/Month!

May 12 is International ME/CFS Awareness Day, which unfortunately falls on Mother's Day weekend again this year when we are always away visiting my mom, so I am posting this information today to help you prepare. The entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month), so you can do a number of easy things to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

• Two ways to help move ME/CFS research forward. From the Solve ME/CFS website (note that deadline for the first action listed has already passed).
• Check out the #MEAction website for a list of different ways that you can help to build awareness, even from your bed.
• Join the #MillionsMissing campaign for May 12, either in-person (there's a list of local events) or online.
• Edit your profile pics on social media with either a blue ribbon or a #millionsmissing filter. I am changing my Facebook profile to this one below, with an explanation of the things I am missing due to ME/CFS (including backpacking!). You can get the #MillionsMissing filter here with an app on your phone or on the Twibbon site. Twibbon also has a wide range of other options for ME/CFS awareness, including blue ribbons.

And I use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). Most of you know that my son and I both have ME/CFS (and he has Lyme plus 2 other tick infections), but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 17 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives...but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap after lunch, we almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far."

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. An Overview of ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS
4. Our public testimony on pediatric ME/CFS at the 2011 CFSAC meeting.

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative
• Open Medicine Institute (click in the upper right corner to donate)
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• Amazon Smile
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

TV Tuesday: The Fix

I am a loyal listener of the Happier in Hollywood podcast, hosted by two TV writers who have been friends since high school and writing partners for 15 years, Elizabeth Craft and Sarah Fain (Elizabeth is also co-host on the Happier podcast, with her sister, famed self-help author Gretchen Rubin). For the past year or so, Liz and Sarah have been talking about a TV show they were working on - first writing a pilot, then pitching, and finally actually producing at ABC - and I have been excitedly looking forward to seeing it come to life. It is now on the small screen, a thriller called The Fix, that the partners created, wrote, and produced along with Marcia Clark, and my husband and I are both enjoying it very much.

Robin Tunney, who played Teresa Lisbon on The Mentalist, here plays Maya Travis, a famous lawyer who tried a handsome celebrity for the murder of his wife eight years ago in L.A. After that devastating loss - and certain that a murderer went free - Maya retreated to Washington state, where she met a horse rancher and settled into a quiet life. Now, though, Sevvy Johnson, the high-profile celebrity played by Adewale Akinnuoye-Agbaje (who famously played Mr. Eko on Lost and more recently played Detective Bird on Ten Days in the Valley) appears to have killed another woman. It's enough to draw Maya out of retirement and back to L.A., where the D.A.'s office welcomes her back and asks her to head up this new case. Sevvy is a charming actor who has raised his children on his own. He was dating a young woman (best friend of his oldest daughter) named Jessica who worked as a personal trainer and recently showed up dead on the beach early one morning. Evidence - and suspicions - once again point to Sevvy, and this time, the D.A.'s office, and especially Maya, want to make sure he doesn't get away with murder. Sevvy's super-sleazy high-priced lawyer, Ezra Wolf, played by Scott Cohen, is confident he can once again win his case and keep his client a free man.

This legal thriller is fast-paced and twisty right out of the gate, with new surprises in every episode. Maya may be sure that Sevvy is guilty, but there is enough doubt planted - including his own tearful proclamations of innocence - to keep you guessing. And even if he is guilty, will he get away with it? In case you hadn't noticed the similarities and the role of Marcia Clark in the show's creation, there are definitely parallels here to the O.J. Simpson case. The cast is superb, especially Tunney and Akinnuoye-Agbaje in the lead roles. Both have been favorites of ours in their previous roles and are in top form here. The characters are well-developed, the dialogue is crisp and realistic, and the suspense is constant. We are watching about a dozen shows right now, but this one is at the top of our list, one of the few that we watch On Demand as soon as a new episode is available. We just finished watching episode 7 of 10, and we can't wait to see what happens next.

The Fix airs on ABC Mondays at 10 pm, and all episodes are available On Demand and on the ABC website (right now it looks like most are free though episodes 2 & 3 require your cable or satellite log-in). It is also available for streaming on Amazon for $1.99 an episode, and (I believe) on Hulu.

TV Tuesday: The Other Two

I usually watch a TV show on my own at lunchtime on weekdays, but sometimes I don't have time for a full hour show and just want a brief respite of comedy in 30 minutes (or less). My favorite podcast, Pop Culture Happy Hour, mentioned a new show on Comedy Central, The Other Two, so I gave it a try and am really enjoying it. It's a fun comedy that also is also insightful, very clever, and full of heart.

The premise is that an adorable thirteen-year old boy made a music video that went viral and now the whole world is going crazy over ChaseDreams ala Justin Bieber. But the show isn't about Chase. The title refers to his two older siblings, Brooke (played by Heléne York), a former dancer, and Carey (played by Drew Tarver), an aspiring actor and current waiter, and the effects of their little brother's newfound fame on them. Molly Shannon, of Saturday Night Live fame, plays their mother who is a bit ditzy but really cares about her kids and is getting swept up in Chase's fame. Ken Marino plays a goofy, inexperienced manager with dollar signs in his eyes, and in later episodes, Wanda Sykes is added to the cast as a hilarious publicity manager. Each 30-minute episode is titled about a different milestone in Chase's career, while the action really focuses on his two kind but hapless older siblings. For instance, when ChaseDreams releases a sweet new music video with the lines, "My brother is gay, and that's OK" (cleverly titled Chase Gets the Gays), Cary's life is suddenly thrust unwillingly into the spotlight. A few episodes in, Brooke becomes Chase's personal assistant.

I am loving this show! It is funny but also very clever in its portrayal of our fame-hungry, social media-driven society. It's not played just for laughs, though. With each episode and each new set of challenges, both Brooke and Cary begin to grow a bit, learning to respect themselves more, and, as young adults, trying to figure out what they really want out of life. As you can imagine, Molly Shannon is great in her role as the mom, as she, too, comes out of her shell and starts to find herself, as her young son's career skyrockets. It's a warm, fun, intelligent show about coming of age in our crazy world today, in the shadow of a sibling's spotlight.

NOTE: As with most Comedy Central shows, this one can sometimes be explicit in terms of language and sexuality.

I've watched eight of the ten episodes in season 1 so far and want more! I've been watching it On Demand, where all episodes are still available. It is also available on Comedy Central's website, though only the first episode is free to all - you can see the other nine by signing in with your cable, TV, or satellite provider. You can also stream it on Amazon for $1.99 an episode or $16.99 for the season (or for the same prices on YouTube).

Weekly Inspiration: Helping Others Makes Us Happier

Sorry for the hiatus here on the blog - I had three exhausting trips within a two-week period and am getting ready for two more! It's just been a hectic, tiring time for me. But I am trying to keep up the blog and my work with our online support groups as much as possible...which brings me to the topic of today's Weekly Inspiration - Helping Others.

The title if this new TED Talk caught my eye: Helping Others Makes Us Happier But It Matters How We Do It. It's an interesting, fun, and inspiring  talk (and under 15 minutes long!) by social psychologist Elizabeth Dunn, who studies giving and happiness. Check it out:

So, you may be thinking that this talk isn't relevant to you. After all, few of us are able to help renovate a home for a refugee family or serve meals to the homeless. But Dunn's talk - and her research - struck a chord with me because it's something I have learned as well through the past 17 years with chronic illness, that helping others is very rewarding and increases my own happiness. I started this blog more than 12 years ago, not thinking about helping others but just needing to tell our story and hoping to find a few others out there in the wide world who could relate and understood our challenges. Of course, never in my wildest dreams did I imagine back then that there were many thousands of people just like me - and parents with sick kids like us - that I would connect with. Gradually, as we found treatments that helped to improve our lives, I also realized that I could not only connect with other patients but maybe help them, too.

The blog led to forming a local support group of parents (which has grown to about 40 families with both sick kids and sick adults) which led to forming several online support groups. In each case, I found that the ability to help others - from my couch! - not only made all my time and effort worth it but also seemed to make our own struggles with chronic illness worthwhile. Being able to use our experiences to help others gave us purpose...and yes, increased happiness. I can't describe how immensely proud and happy I was when I heard my son, at one of our local gatherings, explaining to an older man with ME/CFS, many decades his senior and who had taught at his school, all about Orthostatic Intolerance (OI) and how to treat it. It's a powerful feeling to be able to help others.

And it's not just about sharing effective treatments and new research - emotional support is just as important, if not more so. Every time you reach out to another patient, even online, you let them know there is someone out there who understands what they are going through and who cares. When you are isolated and housebound with chronic illness, that simple message of connection and compassion means so much, and as we discovered and Dunn explains, the rewards you get back from reaching out to others are immense. You benefit from that connection, too, as well as the satisfaction of helping a fellow human being. It's powerful.

So, while it is definitely worthy to donate money to ME/CFS charities (especially when you read abut the amazing research breakthroughs being made every day), as Dunn points out, you get far more benefit from actually being involved and seeing the effects of your help first-hand...and it doesn't cost a thing!

There are all kinds of discussion forums and online support groups out there for ME/CFS and related diseases. AMMES has a list and a search engine for both in-person and online groups and Phoenix Rising has a popular discussion forum anyone can join. Here are more tips for finding others locally, from my article Birds of a Feather: The Joys of Community.

There are hundreds of ME/CFS patient groups on Facebook - if you're not on Facebook and don't want to mingle with friends and family there, you can set up an account using a pseudonym - some people use their first and middle names only or create something entirely new - and use Facebook solely to participate in groups. Here are some to consider:

• Parents of Kids, Teens & Young Adults with ME/CFS and Related Conditions (open only to parents of sick kids)
• Teens with ME/CFS and Related Conditions (members are between 12 and mid-20's)
• ME Global
• Check out the list of groups at #MEAction - there are more than a hundred, including many state-specific or country-specific ones. There really is a group for everyone here, including the Delaware-Area one I run.

And you can reach out to other patients right here on this blog (and many others), just by leaving a comment - same with Twitter or other forms of social media.

The bottom line is to connect - online, in-person, however you can manage it! You will feel the rewards of reaching out to help others, and you will also benefit yourself from the friendship and camaraderie of others connecting with you.

First time our local group gathered, in 2010 - all good friends now!

TV Tuesday: The Enemy Within

I'm back! My husband and I have been off on two trips this past week - a few days of camping in Virginia (very relaxing) and a long weekend in Oklahoma for a family funeral, culminating in an 18-hour trip home through 4 airports, on 3 flights, finally getting home at 2 am last night! And we leave again in 3 days for Easter with my family. Just trying to catch up and catch our breath in between!

So, I haven't been on the blog for a while and wanted to tell you about a new TV show we are loving, The Enemy Within - we even watched it on my laptop in our hotel room this weekend.

Jennifer Carpenter, of Dexter fame, stars as Erica Shepherd, a woman who is viewed as public enemy #1 and a traitor after she gave the names of fellow CIA operatives to a notorious terrorist who then killed them. Now, that terrorist, Tal, has set off multiple bombs, killing numerous people, including FBI agents. FBI agent Will Keaton, played by Morris Chestnut (who we enjoyed on Goliath and also starred on Rosewood), decides the only way to finally catch Tal is to bring Erica out of prison to help. One of the agents that Erica helped Tal to kill was Will's girlfriend, so he doesn't trust Erica, but he needs her. His colleagues, including Daniel, played by Raza Jaffrey, and Kate, played by Kelli Garner, are against this plan and consider Erica to be a terrorist herself, but Will soon finds out from Erica that there is far more to her story than was reported in the news. She shares her secret with Will but insists he keep it quiet for personal reasons. Besides wanting to catch Tal, who used to be her main target in the CIA and whom she knows better than anyone, she is desperate to see her teen daughter, Hannah, played by Sophia Gennusa, again. Erica and Will begin working together to find Tal, despite the protestations of the rest of the FBI team, while Erica is now imprisoned in a cell at the FBI. Each episode provides another piece to the puzzle of this violent terrorist.

We loved Carpenter as Dexter's sister, Debra, on Dexter and are thrilled to see her back on the screen in such an excellent thriller series. She is just as good here as Erica, as is Morris Chestnut as Will, as the two slowly begin to trust each other. Each episode is suspenseful and action-packed but also thoughtful, slowly digging deeper into Erica and Will's backgrounds as the two start to understand each other better. Erica is a brilliant CIA operative and analyst, and she slowly begins to prove her worth to the resentful FBI team, as they catch various Tal operatives, though the man himself remains tantalizingly out of reach. We've watched six episodes so far and are totally hooked. In fact, this is my favorite of the new batch of early-spring shows, and I can't wait to see each new episode. Both Erica and Will are complex and interesting characters, and I am eager to see what happens next in their joint mission to catch this notorious terrorist.

The Enemy Within is currently airing at 9 pm on Mondays on NBC (ooh, that means there should be a new episode On Demand today!). We are watching it On Demand, and also watched an episode on the NBC website while we were traveling. There are eight episodes currently available of the 13-episode season. It also seems to be available on Hulu or you can stream it on Amazon for $1.99 an episode or $19.99 for the first season.

HAPPENING TODAY: ME/CFS Conference & Contact Your Congress Reps

I've been snowed under this week, preparing for three trips in the next two weeks (wish me luck!), so I am a bit late on this, but there is still plenty of time for you to participate in these two events happening today and tomorrow:


NIH Conference: Accelerating Research on ME/CFS
This much-anticipated conference is going on today and tomorrow (Friday), through 6 pm, so there is still plenty of time to watch it on Livestream. The speakers are all a Who's Who of top ME/CFS researchers, presenting the latest research findings, and tomorrow morning there is a Clinician Panel Discussion featuring treatment advice on different topics from five of our favorite top ME/CFS experts, who have helped so many patients (including my son and I!) - Dr.'s Bateman, Levine, Montoya, Peterson, and Rowe.

You can read the agenda for the 2-day meeting here.

And you can join the Livestream here now and/or watch the recorded sessions later here. I'm going to have to settle for watching the recorded sessions later, so please let me know if you see anything interesting that I shouldn't miss!

Solve ME/CFAS and #MEAction Advocacy Week
Hundreds of patients and their families and friends have gathered in Washington, DC, this week to lobby their Congressional representatives in person for additional funding for ME/CFS, as well as other needed actions. But there is still time for you to help, right from your couch or bed!

This page provides all the details. From that page, you can send a letter to your Senators for an upcoming appropriations bill, call your Congressional representatives, and share these actions on social media.

Here's a quick link to send a message to your Senators, asking them to sign two ME/CFS-related appropriations letters currently being circulated (April 9 is the deadline). I just did this, and it took less than 5 minutes! All you have to do if fill in your contact info and add a personal message, if you want to - the specifics of what you are asking them to do are already detailed in the letter for you.

Sorry again for the lateness of this post...but there is still plenty of time to participate in both of these events, right from your home.

We need all the help we can get, so add your voice to this important call-out. It only takes a few minutes!

TV Tuesday: Manifest

Way back in September last year, in my Fall TV Preview, I mentioned that one of the shows I was most looking forward to was a new NBC show called Manifest. My instincts were right, and my husband and I thoroughly enjoyed every episode in the first season of this twisty, suspenseful, mysterious show.

In the first episode, an ordinary American family is returning from a vacation in Jamaica: brother and sister Ben and Michaela Stone, played by Josh Dallas and Melissa Roxburgh, their parents, and Ben's wife, Grace, and their twins, Olive and Cal. They are happy and relaxed, waiting in the lounge area for their flight home to NYC, when the airline announces (as they so often do) that they are overbooked and looking for volunteers to give up their seats and travel on a later flight. So, Mom, Dad, Grace, and Olive head home as planned, while Ben, Cal, and Michaela wait for the later flight. On that second flight, though, they hit some terrible turbulence, worse than anything anyone has ever experienced before. Finally, they get through it and continue to New York, where they land safely, though their plane is immediately surrounded by police and other emergency vehicles. After disembarking, they discover that they have been missing and declared dead for over five years. It's impossible, but there they are, all 191 people on that plane, back from a 3-hour flight. All of their friends and family have aged five years. Olive is now five years older than her twin brother, Cal. Worse, many people at home have moved onto different lives or new relationships.

There are so many intriguing pieces to this complicated puzzle.  The show is a family drama, about people readjusting to each other after a five-year absence and all the complexities that result. It's a mystery: what happened to that plane? How is this even possible? And then it takes even more of a supernatural turn, as both Ben and Michaela begin to hear voices in their heads, often telling them to do something, after returning home. It's an intriguing, convoluted, compelling story with twists and surprises - both personal and universal - in every episode. We absolutely loved it, with some of the bizarre things that happened reminding us somewhat of Lost (though perhaps with a bit more focus and purpose!). The acting is all very good, and we especially enjoyed the main characters. Jack Messina, who plays young Cal, plays a growing role as the season continues, and is excellent. All in all, we enjoyed every episode and can't wait for season two!

All episodes are still available free On Demand, if you have cable. Some of them are also free on the NBC website (looks like #1 and #12-16), while the rest need a login from your cable provider to unlock. The first season is also available on Hulu, and it looks like Amazon is trying to get it for streaming (I would check back again).  Youtube has it available for $1.99 an episode. It is available on DVD, for purchase or to borrow through your library.

Weekly Inspiration: Stillness and How To Be Alone

I have been trying to catch up on my Quote Journal, where I write down passages I want to remember from the books I read. I've gotten behind and have a stack of books on my coffee table with quotes tabbed and waiting to be transcribed.

One of the reasons for this backlog is a classic book of essays, Gift from the Sea by Anne Morrow Lindbergh. I re-read it last year during Nonfiction November and felt like I was reading it for the first time. So many passages spoke to me and inspired me that my copy of the book (lovingly inscribed to me from an old friend) is filled with dog-eared pages, and I have been slowly copying those favorite passages into my Quote Journal. You can read my review of the book (plus some of those quotes!) on my book blog.

Quiet Sunday mornings when I am up before my husband are one time when I like to work on transcribing quotes into my journal, and one this morning from Gift from the Sea really struck me:

"Now, instead of planting our solitude with our own dream blossoms, we choke the space with continuous music, chatter, and companionship to which we do not even listen. It is simply there to fill the vacuum. When the noise stops, there is no inner music to take its place. We must re-learn to be alone."
          - Gift from the Sea by Anne Morrow Lindbergh

The really amazing thing about this passage is that she wrote it in the 1950's! There were TV, radio, and stereos, but Anne had never heard of Facebook, Twitter, Instagram, podcasts, streaming services, or even e-mail. Most of our modern-day distractions didn't even exist back then, yet Anne still saw a crisis of people filling every possible moment with noise and no longer knowing how to be silent and alone with our thoughts. This is something that strikes me over and over in her book (as I show with a couple of quotes in my review) - how relevant her words, written over 60 years ago, still are today, in a digital world she never could have imagined.

These thoughts brought me back to one of my all-time favorite TED talks, The Art of Stillness by Pico Iyer, which I watched again today (for the third time!). In it, he speaks eloquently about the power of stillness in the world of infinite distractions we now live in:

Ironically, while watching this video, I had constant urges to click to another tab and check social media while listening or go through some of those 100+ unread e-mails waiting in my inbox! With difficulty, I ignored those urges and tried to just concentrate on his meaningful words and soothing voice.

The funny thing is that no one is more experienced in the art of physical stillness than those of us with ME/CFS, for whom even mild exertion can have long-lasting dire consequences. When we feel bad, we are forced to lie in our beds and on our couches and recliners, while the rest of the world moves around us. But, we are just as prone to this absence of emotional stillness in the face of the constant onslaught of media and online distractions. For instance, anytime I am up and about, I have my earbuds in and am listening to audio books or podcasts (ironically, one of my favorite podcasts is the Slow Home Podcast, which advocates stillness!). I spend almost all day on my laptop and frequently check Facebook, Twitter, blogs, and e-mail. Even when I am crashed and stuck on the couch, I still often have my laptop balanced on my belly.

Though I don't practice a weekly digital Sabbath, as Iyer suggests, I have successfully incorporated stillness into my life in some limited ways. I cherish weekday mornings when I am in the house alone and it is completely quiet. No TV, no music, no iPod. Granted, I am still using my laptop but mostly using it to write, with my social media windows closed and no external sounds, except the chimes on my porch and birdsong out my window. That quiet time is rejuvenating. I put my laptop away by 7:30 each evening. This is not entirely still time because my husband and I watch TV and read together but it is at least free of online distractions and a time to just relax and focus on one thing only. And, of course, there is my afternoon nap - a sacred time that I never miss each day in my dark, quiet bedroom (earplugs and eye mask help!). Finally, several times a year, my husband and I go camping with our pop-up camper. The laptop stays home, there is no internet, and I don't own a smart phone. Those weekends or occasional weeks away are a complete respite from the electronic world and even from the distractions that Lindbergh spoke about. It's just the two of us, outdoors in nature (which is itself rejuvenating), with plenty of quiet time - a complete departure from my normal life!

There is definitely room in my life for more stillness, though. I should walk sometimes without the iPod (though I do use only one earbud so I can still hear the sounds of nature, but that's kind of cheating!) and give myself more time away from social media. I could definitely use some quiet stillness just to think, instead of always filling my quiet time with reading or writing or even copying down inspirational quotes!

I love Lindbergh's lyrical line: "...planting our solitude with our own dream blossoms." I think that is a worthy goal for all of us.

How do you find quiet solitude or stillness in your life? How do you escape the constant modern siren call of the digital world?

TV Tuesday: Good Trouble

I've written here before about The Fosters, a family drama that began on ABC Family, which is now Freeform. You can read my review at the link - I still love this show and am currently watching the final season 5 on Netflix. It's my ultimate comfort TV (even better than The Gilmore Girls), about a blended family headed by a lesbian couple with a mix of biological, adopted, and foster kids. It's one of those shows where surprising plot twists happen in every episode, and this one family endures so much hardship, but it is also warm and full of love. So, imagine how thrilled I was to discover a Fosters sequel!! While my husband was out of town, I was searching On Demand for something to watch just for me, and saw a new show called Good Trouble that had just posted its first episode. It was about two sisters, just out of college, who move to L.A. and live together. I started to watch the first episode and was shocked to realize the two sisters were Callie and Mariana from The Fosters!

So, in that first episode, Callie, played by Maia Mitchell, and Mariana, played by Cierra Ramirez, are driving a rental truck to L.A. to begin their adult lives. Callie is fresh out of law school, with a job clerking for a judge, and Mariana has just graduated from MIT and is starting a software engineering job at a tech start-up. Mariana has chosen their first post-college digs: a communal living space in the upper floors of an old theater building. It's got lots of character...and lots of characters! I haven't been able to count, but they have lots of company in this cool old space, and Callie and Mariana share a room. Of course, being a spin-off of The Fosters, they run into all sorts of problems right from the first episode. Callie, who has strong liberal views (hey, she grew up in a multi-racial, lesbian-led household), is working for a conservative judge, and her first case is about a police shooting of a black boy...and one of her new roommates is involved in protesting the shooting and is getting close to the boy's mother. For Mariana, her dream job with her sparkling, impressive degree comes with racism and some serious gender bias. Her co-workers are almost all males who treat her like a second-class citizen (and an idiot). And of course, there are sister squabbles and lots of romantic possibilities and hooking up for the two of them.

Just like The Fosters, this show is packed full of crises and issues in every episode, which keeps it interesting, thoughtful, and compelling. Though the actresses playing Callie and Mariana are at the center of the action, the show features a multi-cultural ensemble cast who add in additional crises and issues, and the acting is engaging. Right from that first episode, I was surprised to see how much semi-explicit (but not graphic) sex is included in the show (this is definitely no longer ABC Family) - Callie dates a bisexual man and Mariana gets involved in a threesome in one episode! Though the Fosters' kids were always getting into trouble (including exploring sexuality as teens), this is definitely more of a grown-up nature, which is appropriate for the show's themes and ages. I am loving Good Trouble for all the same reasons I love The Fosters: great cast, good writing, exploring interesting moral dilemmas in every episode, warmth, and just the right touch of humor and lightness. You can watch this new show without watching The Fosters - they explain what backstory you need to know - but why would you? All five seasons of The Fosters is still available on Netflix, so you can begin making your way through those episodes while you wait for each new weekly episode of Good Trouble. And knowing those details just makes Good Trouble all the richer. For fans of The Fosters, Callie and Mariana's siblings and moms often make guest appearances. I am thoroughly enjoying revisiting characters from one of my favorite teen shows as adults and can't wait to see what happens next!

Season 1 of Good Trouble is currently airing on Freeform, so it is available On Demand or at the Freeform website for free (11 episodes have aired so far). You can catch up on The Fosters on Netflix. Good Trouble is also available for $1.99 an episode on Amazon, as are all the seasons of The Fosters.

Movie Monday: Lion

Last month, while my husband was traveling on business, I had a chance to watch a movie I've wanted to see since its 2016 release, Lion. Nominated for 6 Academy Awards (and winner of many other national and international awards), this adaptation of a memoir is moving, powerful, and uplifting.

As the movie opens, little Saroo, played by Sunny Pawar, is five years old, growing up with his mother, older brother, and baby sister in a small village in India. When his brother, Guddu, heads out one night to make money at the local train yard, Saroo begs him to let him come along. Against his better judgement, Guddu agrees and tells Saroo to wait on a bench near the tracks until he comes back because Saroo is so sleepy. Saroo wakes up disoriented and looking for Guddu, so he boards an empty train, calling his brother's name. He falls asleep on the train and wakes the next day to find the train is moving - and still empty. He is stuck on the moving train for days until it finally arrives in Calcutta. Saroo doesn't understand the Bengali language in Calcutta and no one understands him, so he wanders around the far-away city, searching for his family in vain. Eventually, he is adopted by a kind Australian couple, Sue, played by Nicole Kidman, and John, played by David Wenham. He grows up in Australia and has a happy childhood, alongside another Indian boy they adopt. As an adult, Saroo, played by Dev Patel (of Slumdog Millionaire fame), starts having flashbacks from his earliest years. He remembers his mother and his siblings, and viscerally recalls the anguish of being separated from them and of trying to find Guddu. Saroo begins a virtual journey using Google Earth to find his lost family of origin, a task that is made even harder by the fact that his young child memories are not entirely reliable...but he has distinct memories of his family and the tiny town they lived in, and he searches across India, along the train routes, to try to find the town. Saroo becomes obsessed with this impossible quest until it takes over his life.

This is one of those "truth is stranger than fiction" stories that you might think unbelievable if it was made up. It is true, though, and that makes it all the more remarkable. The acting here is excellent, from the tiny, adorable Sunny Pawar playing young Saroo to Dev Patel's gut-wrenching portrayal of an adult tortured by memories of his lost family. And, of course, Kidman is especially good as his loving mother who wants to support him but fears how his search will end. It's an absolutely compelling narrative (hence, its many nominations and awards for adapted screenplay), and the cinematography is jaw-dropping, especially the scenes in India and the contrast between the poverty there and the wealth he is adopted into in Australia. Lion is a poignant, heart-wrenching, and inspiring  story of one man's undeniable drive to find his lost family. It deserved all of its accolades - and more.

Lion is currently available on Netflix or to stream on Amazon, starting at $2.99, or on DVD (only $3.99 through Amazon or at your local library). I don't usually watch movies twice, but this is one I could definitely watch again and again.



    

Weekly Inspiration: Hope Written Deeply Into Our Hearts

In January, my neighborhood book group read and discussed The Rent Collector by Camron Wright, a wonderful book that was universally loved by our members, a rare occurrence! You can read my review of this moving, uplifting novel based on real-life people at the link. The author wrote the novel based on a stirring documentary, River of Victory, that his son made about a family that lives in Cambodia in the largest garbage dump in Phnom Penh. The real-life husband, wife, and children survived by "picking trash," sifting through the mountains of new trash brought in every day to find small items that could be recycled and thus exchanged for cash. They barely made enough to feed themselves, and their baby son was very sick, but they couldn't afford the treatments that sometimes helped him temporarily.

Based on this true story, the filmmaker's father, Camron Wright, wrote a novel, The Rent Collector, about this family, recreating much of the truth from the documentary but imagining how their lives might change if Sang Ly, the wife and mother, was able to learn how to read. In the novel, she spends hours with a tutor - a one-time enemy who turns out to be a friend - learning to read and how to interpret and appreciate literature. It's a captivating, moving book about life, hope, and the power of books that I highly recommend.

Here are just a few of my many favorite quotes from the novel:

"Life will not always be so hard or so cruel. Our difficulties are but a moment."

This is a Buddhist concept echoed by Sang Ly's grandfather when she is young. Many of the truths of Buddhism resonate with me, with respect to living with chronic illness. When I was first diagnosed, kind notes poured in from my friends, but the one that struck me most and moved me to tears was from an old colleague and close friend who'd had ME/CFS himself for a year during college. He just simply said, "This too shall pass," which made me burst into tears and was very comforting. And he was right. Yes, the illness is still here, 17 years later, but with treatments and lots of emotional coping and adjustment, I have found my new normal. That acute time of such terrible emotional pain did, indeed, pass.

"When you find your purpose - and you will find your purpose - never let go. Peace is a product of both patience and persistence."

"Patience is the best remedy for every trouble."

These two quotes especially struck me because I often counsel others in patience and persistence! I usually say that in terms of finding just the right treatments for each person, but I love this sentiment about finding purpose and peace as well.

"...the desire to believe, to look forward to better days, to want them, to expect them - it seems to be explained in our being. Whether we like it or not, hope is written so deeply into our hearts that we just can't help ourselves, no matter how hard we try otherwise."

Here, Sang Ly's tutor is talking about hope as a theme in literature, and how that applies to real life, as well. I love this quote because I believe strongly in hope and its power. Early on in my illness, I read The Anatomy of Hope by Jerome Groopman, and it had a tremendous impact on me. In fact, I gave my dad a copy of it when he was diagnosed with cancer, and it helped him, too, transforming his normally pessimistic attitude to one of hope, which helped him to not only endure but enjoy his last year of life. Hope is a powerful thing.

Those are just a sampling of the many beautiful passages in this inspiring and compelling novel. My book group also watched the original documentary just this past week and enjoyed that, too.

What books or quotes have you found inspirational?

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

          

TV Tuesday: The Passage

At my house, we are BIG fans of Justin Cronin's trilogy that begins with The Passage. My husband has finished all three books, and my son and I have read the first two and plan to read the third (I'm thinking Big Book Summer Challenge). So, we were all very excited to hear it was being made into a TV show. My husband and I just finished watching season 1 of The Passage on Fox, and we loved it! It's not exactly like the book in every detail, but it sticks to the basic story and is really well-done. Whether you have read the books or not (though of course, I recommend that you do!), the TV show is riveting and quickly became our favorite show this winter.

Dr, Jonas Lear, played by Henry Ian Cusick, is desperate to find a cure for his wife Elizabeth's early-onset Alzheimer's disease. He and his best friend, a neurologist named Dr. Tim Fanning, played by Jamie McShane, travel to South America when they hear about a man who is immune to disease. What they find, though, is a monster who, when they try to capture him, bites Tim and passes his freaky condition onto the doctor. Now, Jonas has two goals: to cure his wife and his best friend. He establishes a team and gets funding from the DOD to find a way to control this strange virus that transforms its victims into blood-hungry but super-human creatures. When a bird flu pandemic breaks out in Asia, the pressure mounts to find a way to cure it using a version of this virus.

Brad Wolgast, played by Mark-Paul Gosselaar, is one of the FBI agents tasked with traveling around the country to pick up death row inmates with no families who have been chosen for the testing of this modified virus, to try to get the immunities it provides without the drastic side effects. Given the choice between execution or a "drug trial," eleven prisoners choose to travel with Brad and his partner to a secluded research facility in Colorado. When the bird flu worsens, the scientific team gets desperate and concludes that a child would be the perfect host for a virus with just the right characteristics. Brad is sent to pick up Amy Bellafonte, played by Saniyya Sidney, a 10-year old girl whose mother has just died. On the way back to Colorado, though, Brad realizes he can't deliver this innocent child to whatever horrible things are happening in the facility, and the two of them go on the run.

All of that happens in the first episode! I won't ruin the fun with any spoilers because this show is filled with twists and turns in every episode. It's an intriguing plot, and the show has plenty of suspense and fast-paced action, but the relationship between Brad and Amy is at the heart of it and what makes it so compelling. All of the actors do a great job in their roles and are a big part of what makes this show so good, but Gosselaar and Sidney, as Brad and Amy, keep you coming back. Little by little, through season one, you not only see what the scientists are doing but also get flashbacks on who each of the prisoners was before they arrived in Colorado, including what their lives were like and how they ended up in prison. They all develop some telepathic abilities and so begin to interact with the staff, even though they are kept in isolation. Just as in the books, the premise is original, clever, and thought-provoking. We watched the show as soon as it aired each week, On Demand, and it was our favorite of the dozen or so shows we kept up with this winter. Now, we can't wait for season 2!

The Passage has finished its first season, but all episodes are still available free On Demand, on the Fox website (though you might need to sign in with your cable provider's password to view some of the episodes) or on Amazon for $1.99 per episode and $18.99 for the season (so you could watch those episodes available free on the Fox site and buy the other episodes on Amazon, if you don't have cable).

Check out this trailer, then watch the first episode, and you'll be hooked, too:

Movie Monday: The Edge of Seventeen

While my husband was out of town recently, I chose a 2016 high school movie that I knew he wouldn't be interested in watching with me. I love high school TV shows and movies, though, so it was a good choice. The Edge of Seventeen is a sweet, funny story about the travails of being a teenager.

Nadine, played wonderfully by Hailee Steinfeld, wants to be a sarcastic, edgy seventeen-year old, but she is also awkward and self-conscious. Her father died of a sudden heart attack when she was younger, sitting right next to her while driving. He was her greatest admirer and protector, so Nadine feels lost without him. At least she still has Krista, played by Haley Lu Richardson, who has been her best friend (really, her only friend) since they were little girls. The two of them are inseparable...until Krista starts dating Nadine's seemingly perfect, Golden Boy older brother, Darian, played by Blake Jenner. Suddenly, Krista has entry into the world of cool teens that has previously been closed to them, but that leaves Nadine alone and isolated. Things go from bad to worse when Nadine mistakenly sexts her secret crush. The only person Nadine can talk to is her history teacher, Mr. Bruner, played by Woody Harrelson, who seems just as sarcastic and hard-edged as she is, but he helps to ground her when drama threatens to take over and is truly there for her when she really does need him. Will Nadine survive high school?

I really enjoyed this funny, warm movie. The writing is excellent, as is the acting, especially by Steinfeld and Harrelson, as you can see in the clip below. It's an age-old story but very well-done and with a modern edge to it. Despite Nadine's crusty exterior, I was rooting for her not only to survive but to thrive. Nadine does manage to work through many of her problems by the end, though there are plenty of laughs along the way. Maybe people (myself included) enjoy watching the painfully awkward teenage years play out on screen because we are just SO glad to be past all that now! This is a very entertaining look at high school, and just seeing the clip below makes me want to watch the movie again.

The Edge of Seventeen is currently available on Netflix. You can also rent it to stream on Amazon for $3.99 or on DVD.