Sunday, January 22, 2017

Weekly Inspiration: Moving TED Talk on ME/CFS

We have arrived, folks!

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

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

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



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

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

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

I can't wait to see the documentary!

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

Saturday, January 21, 2017

URGENT: Tell Senators How Repealing ACA Will Affect You

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

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

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

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

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

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

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

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

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

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

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

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

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

My e-mail:



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

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

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

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

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

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

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

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

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

Suzan Jackson"





Friday, January 20, 2017

ME/CFS Advocate Named an Oprah Health Hero!

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

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

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

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

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

Tuesday, January 17, 2017

TV Tuesday: Good Girls Revolt

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

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

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

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

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

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

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

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

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



    

Sunday, January 15, 2017

Weekly Inspiration: How to Live Passionately

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



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

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

Wednesday, January 11, 2017

Canadian Genetic ME/CFS Study Looking for Identical Twins

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

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

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

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

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

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

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

Tuesday, January 10, 2017

TV Tuesday: Favorite TV Shows of 2016

Copyright: believeinme33 / 123RF Stock Photo
Yesterday, I summed up my Favorite Movies Watched in 2016, so today it's time for TV to get its due. It was a GREAT year for TV shows! There is just SO much available now, between streaming services (we joined Netflix last year), cable channels, and networks, that it's impossible to keep up with all the amazing shows - but we gave it our best! In fact, our movie viewing fell way off last year because we were watching so much TV.

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

And here are a few superlatives to whet your appetite:

Best Comedy

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


Best Drama

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


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


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


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


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


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


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

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

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

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

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

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

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

Monday, January 09, 2017

Movie Monday: Favorite Movies Watched in 2016

Copyright: yuzach / 123RF Stock Photo
Time for a recap of the movies I saw this past year and which were my favorites. You can find a full list of ALL of my movie reviews (these recent ones plus past years) under the Movie Reviews tab.

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

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

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


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


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

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


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


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

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

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

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

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



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

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

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

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

What were your favorite movies you watched in 2016?

Saturday, January 07, 2017

Weekly Inspiration: Setting Goals with ME/CFS

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

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

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

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

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

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

Happy New Year!

Thursday, January 05, 2017

2016 ME/CFS Research Summary

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

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

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

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

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

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

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

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

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

Tuesday, January 03, 2017

TV Tuesday: The Man in the High Castle

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

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

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

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

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

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

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



    



Monday, January 02, 2017

Movie Monday: Sing Street

My husband and I enjoyed a quiet night at home on New Year's Eve, while our sons went to parties. We were having trouble choosing a movie and looking mostly at thrillers (my husband's favorite) when I spotted Sing Street on Netflix. I'd heard great things about this movie, and my husband said he'd rather watch something light and uplifting than something dark and disturbing to start the new year. This one hit the mark! Sing Street is a wonderful drama/comedy about teen boys starting a band in Ireland in the 1980's.

Life at home is hard and getting harder for Conor, a fifteen-year old boy in Dublin in 1985. His parents are constantly yelling at each other, his older brother dropped out of college and stays in his room most of the time, and now his parents have told him he needs to switch schools for financial reasons. He starts at Synge Street school, a public school run by priests, and runs into trouble the very first day, first with a priest who insists that black shoes are required with the school uniform and later with a bully. The only bright spot is that he meets a new friend, Darren.

Walking home, Conor meets the beautiful Raphina, a mysterious girl who says she is a model. Since music videos are all the rage, and Conor has been watching them with his older brother, he tells Raphina he is making a music video with his band and says they need a model to appear in it. With a little encouragement, Raphina agrees. Now all Conor needs is a band.

Conor and Darren post a notice at school and round up three other boys with some musical talent for their band, which they call Sing Street. Conor plays the guitar and sings. At first, they try imitating popular bands, but Conor's brother encourages him to try creating their own unique style. Conor and another band member, Eamon, work together to write songs, and the band practices. They film their first music video on the street after school one day, starring Raphina, and using styles and methods picked up from watching music videos on TV (to great amusement for the audience!). As they practice, both their music and their videos get better and better. Meanwhile, Conor is falling in love with Raphina, though she seems to have an older boyfriend.

This movie is a lot of fun, with some laughs and some serious moments, too. The music is great, with hits by Duran Duran, The Clash, The Cure, and other top groups of the mid-80's, as well as some excellent songs by Sing Street, who are surprisingly talented once they get going. I plan to listen to the soundtrack! The actors are all very good (though we occasionally had a bit of trouble with the Irish accents). It was just what we wanted on New Year's Eve - fun, upbeat, funny, and even moving. You'll root for Conor and his band to succeed on all fronts.

Sing Street is currently available for free on Netflix, on DVD, or for $3.99 to rent on Amazon Prime (link below).



Saturday, December 31, 2016

There's Still Time for 2016 Donations!

My sons on New Year's Eve - many, MANY years ago!
Want to squeeze one more tax deduction into 2016? There's still time today!

Use this guide I posted for Giving Tuesday to find worthy ME/CFS organizations to donate to, to help move research forward, support advocacy, and help patients (be sure to read the comments, too - there were some excellent suggestions there!). Even just $5 helps.

Sorry the blog has been so quiet lately. It's been all I can do to keep up with all the holiday activities, family visits, etc. We just returned from a visit to my hometown (Rochester, NY) last night - 7 hours each way! Whew. It's been fun but exhausting. I will get back into regular blog posts this week.

In the meantime, I'll raise my mug of herbal tea...

HERE'S TO A HEALTHY & HAPPY NEW YEAR!!!

Tuesday, December 20, 2016

TV Tuesday: Conviction

My husband and I were a little late in discovering ABC's new show Conviction this season, but now we are hooked. This legal/crime show has a unique premise and brings together a wonderful cast for a suspenseful and always surprising show.

The premise of Conviction is that NY District Attorney Connor Wallace, played by Eddie Cahill of CSI:NY and Under the Dome fame, starts up a Conviction Integrity Unit (CIU) to re-investigate old cases to either re-affirm that the convictions were valid or overturn them if the defendant was found to be wrongly convicted. He appoints Hayes Morrison, played by Hayley Atwell, who played Peggy Carter in the Agent Carter TV show and a bunch of Avengers movies. Hayes is a former first-daughter, is in constant trouble, and was Wallace's former lover. She's also a top-notch lawyer, and he appoints her to this position as a favor to her mother, who is running for Congress, when Hayes is arrested for possession of cocaine. Her arrest is hushed up, and she goes from prison to the lovely glass-walled offices of the CIU.

Joining Hayes are a team with a wide range of backgrounds and skills. Sam, played by Shawn Ashmore, whom we loved in The Following, was a lead prosecuter with the city's gang unit - and was slated to head up the CIU until Hayes got into hot water and was rescued by Wallace. Maxine, played by Merrin Dungey, is a detective in the NYPD and a recovering prescription drug addict. Frankie, played by Manny Montana (who we are thrilled to see back on the small screen after Graceland got cancelled), is a forensics expert who is also an ex-con. Finally, Tess, played by Emily Kinney of Walking Dead fame, rounds out the team as a paralegal who used to work for the Innocence Project. As you can see, it is an excellent cast with a lot of familiar faces.

In each episode, the team tackles a different case - it might be someone convicted of a crime who has always proclaimed his innocence or a case where new evidence has come to light or one where the case always seemed less than water-tight. Each time, they have just five days to re-investigate the case - interviewing suspects and witnesses, combing through evidence and trying to figure out if the conviction was valid or not. At first, I thought it might be predictable, with someone being wrongly convicted and released from prison at the end of each episode, but they mix it up - you never know if the convicted person is really guilty or not. And, as in real life, justice is not always served, despite their best efforts.

We are loving this show so far. We were quickly engrossed in its plots and its characters' lives. Besides the cases in each episode, we see glimpses of each team member's backstory and personal lives, a little at a time. It's a legal drama and a crime show rolled into one, with an engaging cast.

All 9 episodes of the first part of Conviction's first season are still available (until April) On Demand or on the ABC website (which also includes a handy guide to the characters). You can also purchase episodes for $1.99 (or $13.99 for the first season) on Amazon (see link below).

Have you watched Conviction yet? What new shows did you enjoy this fall?

(this is a good trailer but the very end of it includes a spoiler of the first episode...so stop it immediately after "Her redemption...is their salvation" at 2:37 min)




Tuesday, December 13, 2016

TV Tuesday: This Is Us

I posted this to my Facebook wall today for my family and friends:
"That damn show! Watched the mid-season finale (when did that become a thing??) of This Is Us with my lunch today. Cried like a baby, not once but twice! And laughed some in between. If you've been looking for a replacement for Parenthood, this is a good one!"
I thought that would make a good intro to my review today. I've been watching NBC's This Is Us, a new family drama, all season, and I absolutely love this show that often makes me laugh and cry in the same episode (much like Parenthood used to!).

There are a lot of potential spoilers here, so I will just try to tiptoe around the plot and set-up and only tell you the basics. In the first episode, we peek in on the lives of several different people who are all turning 36 on the same day. There's Jack, whose wife, Rebecca, is pregnant with triplets. She goes into labor on his 36th birthday, and they rush to the hospital. We meet Kate, a woman who is struggling with her weight, to the point that she has to put Post-Its on her 36th birthday cake to remind herself not to eat it before the party. Kate goes to a weight loss meeting and meets Toby, a friendly and funny guy. Meanwhile, Kevin is also turning 36 today. He's an actor on a very successful TV show called The Manny and is celebrating his birthday with not one but two beautiful women...but he is clearly unhappy. We also meet Randall, a black man working in a sleek office, dressed nicely, and clearly successful, as his office staff brings him a birthday cake. Randall is happily married to his wife, and they have two daughters. He has tracked down his birth father, who left him at a fire station as a newborn, and goes to his home to confront him.

All of that happens in the first three-quarters of the first episode. They are each interesting characters on their own, but the magic happens as you find out how their lives are interconnected at the end of that first episode (I admit, I was a little slow and didn't completely "get it"until the middle of the second episode!). Throughout this first season, we see Kate, Kevin, and Randall both as children growing up and in their current adult lives, as each of them struggles with his or her own issues. We also follow Rebecca and Jack.

I used the word "magic," and I think that is apt because there's a special kind of alchemy here that pulls you deep into these people's lives, brings them alive on the screen, and makes you care about them and what happens to them. It's one of those rare shows that reminds you that everyone is connected. The comparison to Parenthood is also appropriate because it is a family drama, and it pulls at your heartstrings in every single episode, but not in a saccharin or maudlin way. These two shows are the only ones I can think of where almost every episode makes me both laugh and cry! I've heard people who were determined not to like the show nevertheless get pulled in and moved by it. It's really something special.

The acting is excellent across the board, and it truly is an ensemble cast, with no one person more important than the others. I didn't mention the actor's names because most of them were unfamiliar to me at first. Mandy Moore plays Rebecca (which I didn't realize until it was pointed out to me). Jack is played by Milo Ventimiglia, who was unfamiliar to me as he appears in the show, with a mustache, but who I now recognize from other TV shows like Heroes and Gilmore Girls. Many of the other actors are less familiar but are all really great on this show, especially Sterling K. Brown as Randall. Both Mandy Moore and Chrissy Metz as Kate snagged Golden Globe nominations this week for Best Supporting Actress, and the show itself was nominated for Best TV Drama.

This is Us airs on NBS on Tuesdays. It just finished up for the holidays but will return with new episodes on January 10. In the meantime, you can catch up on all of the first 10 episodes On Demand (all episodes are available & should remain that way for a good while) or on the NBC website (all 10 episodes are up and free). On Amazon, the first episode is free and the other 9 are $1.99 (or the full first season starts at $9.99).

Have you seen this unique show yet? What TV shows can make you cry?




Monday, December 12, 2016

Movie Monday: The Jungle Book

Continuing our run of movies based on classic novels & jungle adventures (last week I reviewed The Legend of Tarzan), my husband and I recently watched the newest live-action version of The Jungle Book. Well, it is sort of live action - the main character is a live actor and the rest of the movie is all CGI. It's technically pretty amazing and also an entertaining new version of an old favorite.

Unlike The Legend of Tarzan, this is not a new take on the old story but more a new way of telling the classic story by Rudyard Kipling. You know how this one goes: a baby boy is found abandoned in the jungle & is raised by the animals. In Tarzan, it was apes; in The Jungle Book, it is a pack of wolves (why there are wolves & bears in the jungle is something I've never understood, but, hey, go with the flow). Shere-Khan, the tiger, has a vendetta against the boy, Mowgli, so his wolf family decides that he (and they) will be safer if they return him to the "man village." Mowgli's longtime friend (and the one who found him originally), Bagheera, the black panther, accompanies him on the journey back. Along the way, Mowgli meets Baloo the bear, a happy-go-lucky guy who convinces him to stay and live the easy life, and King Louie, a giant orangutan, who wants Mowgli to teach him about fire.

I grew up on Disney's animated version of The Jungle Book, as did our sons; it's an old favorite at our house. So, I was skeptical of a new version when the old one seems perfect to me. The latest take on the classic, though, surprised me in a lot of ways. First, technically, it is incredible. The entire movie was filmed against a green screen with child actor Neel Sethi acting all by himself as Mowgli, interacting with the jungle and his animal friends. You have to see it to believe it. You spend the first few minutes staring at the details of the environment and the animals, as Mowgli runs, jumps, and crawls through the jungle, but then you just accept it all as "real" and forget it is all CGI (go on, watch the trailer below and see for yourself). It's quite a feat, and Sethi is excellent in his first starring role.

The next surprise was the perfect slate of top-shelf actors playing our favorite Jungle Book characters: Ben Kingsley as Bagheera, Idris Elba as Shere Khan, Scarlett Johansson as the python Kaa, Christopher Walken as King Louie, and - best of all - Bill Murray as Baloo the bear. When we first heard Murray's familiar voice from Baloo, we whooped in delight. Can you think of any better actor to play the lazy, wise-cracking, fun-loving bear? Soon after that, I was just saying to my husband, "It's very good so far, but I do miss the songs," when Murray as Baloo started humming the familiar melody of The Bare Necessities. Another cheer from our family room! Not all of the songs from the animated movie are included here, but certainly the two best were included - Bare Necessities (sung by Baloo and Mowgli) and I Wanna Be Like You (sung by King Louie), plus Trust Me (sung by Kaa/Scarlett Johansson). That's how I knew this new version was also a Disney production. We were quite happy about that and sang the songs for the next 24 hours around the house (and now they are back in my head again, typing this!).

So, overall, we very much enjoyed this new version of an old family favorite. They've kept the best of the old animated movie and made the most of this new technology and the voice-acting for a fun and very entertaining experience. My husband and I watched it on our own, but this is a great film for the entire family to watch together, rated PG (my son and his girlfriend saw it in the theater when it came out & recommended it to us). Now we want to read the original book!

The Jungle Book is currently out on DVD, available through Redbox, streaming through Netflix and for $2.99 on Amazon (link below).



Thursday, December 08, 2016

Gifts Made by ME/CFS & Lyme Patients

Copyright: phive2015 / 123RF Stock Photo
I have been meaning to put this post together every holiday season, and I never get the timing right. Hopefully, this is still in time for some holiday shopping! If not...you can use this guide in 2017.

I have gathered together some wonderful handmade products - jewelry, knits, and a wide variety of other handcrafts - that are made by patients with ME/CFS and related conditions, many of them talented young people trying to find their places in the world while mostly housebound. If you choose to buy any of these products, you are not only supporting these talented patients, but in many cases, some or all of the proceeds go toward ME/CFS research and other charities - a win, win, win!

Here are some gifts to consider - for others or for yourself! - this holiday season & beyond:
 
Mia Anderson Jewelry - Mia is a young girl with ME/CFS who creates gorgeous jewelry from semiprecious stones (as well as velvet chokers). Her creations are beautiful, and she donates ALL proceeds to Stanford's ME/CFS Research Initiative, a very worthy cause. You can see her pieces and contact her through her Facebook Page, Mia Anderson Jewelery.

Some of Mia Anderson's bracelets

A necklace from Bergamot Jewels & Knits
Bergamot Jewels and Knits - Another very talented young woman - and a personal friend of ours who lives nearby - creates beautiful jewelry and knit products. She has temporarily closed her Etsy shop in order to take some time off to recuperate & recharge, but you can still order some beautiful items through her Facebook Page, Bergamot Jewels and Knits. I can attest to the beauty and quality of her jewelry myself, as my husband gave me one of her necklaces for Christmas last year!

Clay creatures from SkoffMagid Creations
SkoffMagid Creations - Another young woman with Lyme and POTS (a form of OI) sews and creates unique, intricate items from clay. Her products includes adorable clay creatures, unique stuffed animals, clothing, and pendants. Her mother creates beautiful beaded jewelry that is also available for sale. You can find all of their products on their Facebook page, SkoffMagid Creations.

Rachael's Crafty Corner - So many talented young women with these illnesses! Rachael is 16 years old, lives in the UK, and has ME/CFS plus other health conditions.  She creates a wide variety of unique, personalized gifts. She works with wood and other materials, does a lot of hand-lettering on wood and glass, and plenty of custom work. She has some wonderful holiday items, but they are closing up shop at the end of this week to take a break for the holidays (so I am too late again this year!). There are still plenty of things here that would make great gifts all year-round. Rachael splits her proceeds among 4 of her favorite charities. You can see her products at her Facebook Page or her Etsy Shop. She delivers worldwide.
A collection of creative items from Rachael's Crafty Corner

That's all I have for now, but I would love to feature more patient-made products on my blog! If you or someone you know with ME/CFS or related illnesses creates products that are available for sale, please leave a link to the website, Facebook page, or Etsy site in the comments below.

All of this creativity from our fellow sufferers is inspiring!

Happy Shopping!