Tuesday, June 19, 2018

TV Tuesday: American Gothic

Our oldest son moved in back home after graduation and hasn't been feeling well (he has the same immune disorder I do plus some tick infections), so he, his Dad, and I have been binge-watching some TV shows together. Our obsession the past two weeks was American Gothic, a family-based murder mystery with a dark sense of humor and a great cast that we all instantly loved!

The Hawthorne family is one of Boston's most prestigious power families. Dad Mitch, played by Jamey Sheridan, made his fortune with a cement company, and mom Madeleine, played by Virginia Madsen, rules the family with an iron fist. Oldest daughter Alison, played by Juliet Rylance, is a city councilwoman and is running for mayor. Younger sister Tessa is married to a detective named Brady and trying to get pregnant. However, the youngest brother in the family, Cam (played by Justin Chatwin of Shameless fame), has his share of troubles, including drug addiction, an erratic ex-wife, and a very strange kid named Jack. When Mitch has a heart attack, the whole clan gathers at the family mansion, and even oldest brother Garrett, played by Antony Starr, returns home after a mysterious 14-year absence. Meanwhile, a bridge collapse reveals an old clue in the broken cement to an unsolved serial killer case: the Silver Bell Killer. This killer terrified the city years ago, leaving a silver bell at each murder scene. In the first episode, a couple of the Hawthorne kids, back home for their dad's crisis, find a shoebox full of silver bells out in the shed. And then the fun begins!

Clearly, from the evidence found in that box, someone in or near the Hawthorne family had something to do with the Silver Bell Killer...but who? As each tense episode unfolds, viewers will suspect first one and then another Hawthorne family member - no one seems to be immune from this roulette wheel of suspicions. At the same time, of course, the police, including Brady - unaware of the mysterious shoebox in the shed - are also trying to unravel the years-old case and are closing in on the truth. In addition to plenty of suspense and all kinds of unexpected plot twists, this gripping show has a thread of dark humor in it that often made us laugh out loud, despite its serious themes of murder and deception. This show keeps you guessing right up until the very last episode and is completely addictive, making it perfect for binging!

Originally a CBS show, American Gothic is now available for streaming on Amazon Prime or by subscribing to CBS All-Access.

Thursday, June 14, 2018

ME/CFS Research Update - Spring 2018

I have fallen behind these past couple of months on the blog, due to too much going on at home with my family - travel, graduation (yay!), family visits, and my sons moving back home from college. For several weeks now, I've only managed blog posts on TV reviews and Weekly Inspiration (and not even every week for those). During that time, the number of open tabs on my browser has grown steadily because I keep seeing news of new research or treatments for ME/CFS and thinking, "I need to mention this on my blog." So, I am finally getting to some of that, so I can close of a few of those browser tabs and catch up a bit.

This is by no means a comprehensive summary of all ME/CFS research reported this spring - thankfully, that keeps growing and is too much for me to include all in one post - but I've included a few choice studies that have been released recently that might change things for ME/CFS patients and/or lead to important breakthroughs.

Stay Informed
First, some great resources for keeping up-to-date on what's happening in the ME/CFS research world - this is where I usually get my information:
Top Research News
So, some of the latest big updates from the ME/CFS research world include:
  • Scientists Discover Promising "Off-Switch" for Inflammatory Diseases - Although ME/CFS is not specifically mentioned in this article, this joint study by American, Irish, and British scientists is important for ME/CFS patients. It is now well-understood that ME/CFS is a disease characterized by high levels of inflammation which contribute to many of our symptoms. So, this new research that found a potential "off-switch," a biochemical made by the body called itaconate, could lead to an important treatment approach for us.
  • Infection Elicited Autoimmunity and ME/CFS: An Explanatory Model - This study conducted by a team of Swedish and Libyan scientists proposes a model to explain the process that initiates and sustains ME/CFS, based on other recent studies of the disease that have been reported. Their theory involves an infectious trigger and a cascade of immune dysfunction effects, leading to problems with endocrine dysfunction, energy production, orthostatic intolerance, and more. We need this kind of scientific study that pulls together the wide variety of research occurring in different fields to propose models that explain the disease as a whole - only by understanding its genesis and how it is sustained can we hope to figure out how to stop the process. 
  • Exercise Elevates Blood Signature Difference Between People With and Without ME/CFS - Top ME/CFS researcher and clinician Dr. Jose Montoya at Stanford University found that taking blood samples after exercise better allowed doctors to identify the ME/CFS patients versus sedentary controls. This is very important because we desperately need a solid way to diagnose ME/CFS, and while many studies have found abnormal identifiers in the blood of some patients, it is not always a reliable indicator in all patients. This work could lead to a combined exercise-blood testing approach to help diagnose ME/CFS (obviously this would not work in those so severely affected that they can't exercise at all, even for a test).
Lots of good news and continuing research into all aspects of ME/CFS! The rate of new discoveries and study reports just keeps increasing, as funding grows and more scientists get involved. These are trends we need!

Tuesday, June 05, 2018

TV Tuesday: Safe

Last week, my newly graduated son and I (who both have medical issues) were in rest & recovery mode after the long weekend with two graduation ceremonies, family visiting, and a big party on Monday. My husband was out of town on business, so the two of us needed to find a new show we could watch on our own (there are several the three of us watch together). We discovered Safe, a Netflix original thriller series and loved it so much that I called my husband in Michigan and told him he needed to watch it, too. After watching six episodes in two days, my son and I laughed and agreed this was the very definition of binge-watching!

Safe stars Michael C. Hall, of Dexter fame (another favorite show of ours), only with a British accent, which sounds really weird at first, but he pulls it off (I checked - he's originally from North Carolina). He plays Tom Delaney, the father of two daughters who recently lost his wife to cancer. The grieving family lives in a gated community in the UK, a place with extra security measures to make it "safe." When his 15-year old daughter, Jenny, played by Amy James-Kelly, doesn't come home one night, he's understandably worried, and as her disappearance continues over the next days, his concern turns to outright panic, as he tries to figure out where she went and what happened to her. The audience knows that Jenny went to a wild party the night before with her older (secret) boyfriend, Chris. When Chris shows up dead, Jenny's missing status takes on a whole new level of importance. Tom is aided in his search by Sophie (played by Amanda Abbington), a close friend - and maybe becoming something more - who is also a local police officer. In each episode, the mysteries pile up, with several more questions arising every time one is answered, and the audiences suspicions changing constantly.

As you can tell by the way my son and I gobbled up this fast-paced mystery/thriller (we finished all eight episodes in just three days!), it is gripping, suspenseful, and completely immersive. Its twists and turns kept us guessing right until the last episode (and my son almost always figures these kinds of things out early). We were completely addicted for those three days and couldn't wait to watch more each evening. My husband couldn't keep up with us, with his commitments on the business trip in the evenings, but he also finished the series after he got home. The TV series was created by Harlan Coben, the famous thriller author, though I don't see a book by the same name, so I think this may have been created directly for TV rather than adapted from a novel. In any case, its thriller-writer roots shine through.

Safe is a Netflix original, so it is available exclusively on Netflix, with a single 8-episode season - you can easily finish it in a week! And you will want to.

Sunday, June 03, 2018

Weekly Inspiration: ME/CFS Patients & Awareness Day

As I mentioned last week, I haven't been here on the blog this past month much, due to a crazy schedule and a huge milestone: my son's college graduation last week (he's the one with ME/CFS plus 3 tick infections). I have been working this week to catch up on everything, so this post is a little late, but I didn't want to skip it entirely.

Today's Weekly Inspiration is focused on YOU, ME/CFS patients all over the world who made this year's ME/CFS Awareness Day (and month) the biggest and best ever! Some summaries (and ideas for next year!):

#MEAction again spearheaded the #MillionsMissing campaign, which just keeps growing. Patients and their friends and families and supporters gathered in over 100 countries (!) around the world for over 300 separate actions, focused on bringing attention to ME/CFS and how its sufferers are missing out on their lives. You can read more about the 2018 campaign here, and you can read a detailed summary and see some amazing photos of the worldwide protests here, including online actions. Check out those photos - it is truly remarkable to see patients and their loved ones mobilizing all over the world!

Another organization, Solve ME/CFS, made an impact with a different kind of approach - ME/CFS Advocacy Day (May 15) on Capitol Hill here in the US, visiting offices of members of Congress and talking to them and their staff about ME/CFS and the urgent need for funding. This year, the group of patients, loved ones, Solve ME/CFS staff, and advocates met with 122 Congressional offices! That's a big leap forward from last year. You can read the summary and watch a short video about Advocacy Day here. Note that the video is not 100% accurate, in that it says that 2017 was the first time something like this occurred - Solve ME/CFS's precurser, The CFIDS Association, also hosted Lobby Days each year during ME/CFS Awareness Week. It's great to see this very valuable event occurring again. My husband, sons, and I participated in a Lobby Day with the CFIDS Association many years ago, and it was an incredible experience. If you or your loved ones can go next year, I highly recommend you do. You can also do what I did this year and participate from home by sending messages to your Congressional representatives.

Also note that you don't have to wait until May 2019 to help raise awareness of ME/CFS! The #MEAction website has a Take Action page all year-round that lists actions you can take TODAY to make a difference, usually from your own home - petitions to sign, letters to send, surveys to participate in, and more.

Congratulations to ME/CFS patients all over the world who participated in 2018 Awareness Day/Month activities, whether in person or online - you are making a difference! And today, YOU are my inspiration.

Tuesday, May 29, 2018

TV Tuesday: The Crossing

Way back in September, in my Fall TV Preview post, I mentioned that The Crossing was one of the new shows I was most excited to see. It was supposed to start in October, and I kept checking, but its start date kept getting pushed back. It finally started in March 2018, and my husband and I have been enjoying this intriguing sci fi thriller ever since!

Steve Zahn (one of our favorites from Treme) stars as Jude Ellis, the sheriff of a small seaside Oregon town, who moved to the area to escape his past and live a quiet life. That life is shattered one night when dozens of people wash ashore in his town, many of them dead but some still alive. There was no record of a shipwreck, and these unusual refugees claim to have come from 180 years in the future, where the world is war-torn and violent. Jude is intrigued, especially by a little girl named Leah, played by Bailey Skodje, who washed ashore without her mother, who is not among the dead, either. The refugees are cared for, while the dead bodies are catalogued, until Homeland Security suddenly arrives on the scene and takes over, shrouded in secrecy, and ferries the refugees off to a hidden spot. But Jude can't forget them - especially Leah - and can't shake the feeling that something is off in Homeland's response.

That's pretty much just a vague sketch of the plot of the first episode - to tell you any more would be giving away some of this show's many, layered secrets. It's a twisty, action-packed show with lots of suspense, but it has plenty of heart, too. Jude is estranged from his wife and eager to welcome his beloved son to his new home in Oregon, but it's a difficult time for some quiet father-son time with all that's going on. Jude is not the kind of guy to just forget about a group of people who seem to need his help. My husband and I are both loving this thriller with a time travel/sci fi twist and can't wait to see what happens next.

The Crossing airs on Mondays on ABC. Eight episodes have aired so far in the 11-episode first season. You can catch up On Demand or on the ABC website (where episodes 4 through 8 are currently available for free and you can unlock the first 3 episodes by logging in with your cable password). It is also available on Amazon with the TV Season Pass or for $1.99 an episode (or $19.99 for the entire season). So, you could buy the first 3 episodes on Amazon and then watch the rest for free at the ABC website.

Sunday, May 27, 2018

Weekly Inspiration: My Son

You may have been wondering where I've been for the past couple of weeks, and why I haven't been posting much here (or on Twitter or Facebook)...we have been getting ready for a huge event and the subject of today's Weekly Inspiration...

Our son graduated yesterday from college with a Bachelor of Science degree in Environmental Engineering!! This would be a wonderful accomplishment for any young person, but he has had ME/CFS for almost 14 years (since age 10) and also has Lyme disease plus two other tick infections. He barely remembers a life before chronic illness, and the combination of these diseases has been devastating and, at times, incapacitating.

For the past six years, he has worked harder than anyone else had to in order to achieve this incredible milestone. He showed amazing persistence, taking 3 classes each semester (that's all he could manage), plus often taking a class during summer and winter sessions, so that some years, he had almost no time off all year. He remained committed and determined, even after most of his friends graduated two years ago. He hit some major roadblocks along the way: the year he caught the flu in November and was completely incapacitated for 3 months; the many times he crashed so badly that he had to come home for 2-4 weeks and then catch up on all the schoolwork he'd missed; and just last week, days before graduation, a professor told him he failed him for missing too many classes (despite his accommodation plan), which resulted in an incredibly stressful lead-up to graduation with visits to Disability and the Dean of Students (now you know why I've been too busy to blog!). The result of that fiasco was that he still needs to take one last elective this summer...but he did walk in the graduation ceremonies this weekend.

I am in awe of what he has done. I think back to my own college days - the most carefree days of my life! I was perfectly healthy (and took that for granted, of course), partied wildly on the weekends, and worked hard all week, graduating easily in four years, ready to start my adult life. I manage support groups, both online and locally, for families whose "kids" have ME/CFS and related conditions, so I personally know or know of thousands of young people struggling with these diseases, and I have huge admiration for all of them. I was 37 years old when I first got sick, and that was immensely challenging. I can't even imagine what's it like for all these young people, including my son, to grow up like this. Of course, some of them are too sick to even try school, but many of them, like my son, struggle every day, week, and month to do what other kids do effortlessly. It truly is awe-inspiring.

So, here's to my son, my inspiration, my heart, for this incredible accomplishment. His commencement speaker said something to the effect of "the important thing in life is not what you achieve but what obstacles you overcome to get there." Our son overcame one obstacle after another to achieve this goal that other young people might take for granted, and we are so proud of him!

I hope that you are inspired by his journey, too.

NOTE: If you are wondering how someone with all those diseases was able to manage college and graduate, check out my post on Effective Treatments for ME/CFS - it outlines the treatments that have worked the best for both of us over the years and those that have allowed us both to become more active and live semi-normal lives. If you have a teen yourself, you might also be interested in the post, How My Son Went from Couchbound to College, about the treatments that helped him that summer before college, when we were desperate to find what would work to allow him to start college on time with his friends (which he did), after he'd missed 90 days of high school his senior year.

Tuesday, May 15, 2018

TV Tuesday: Splitting Up Together

My husband is not a huge fan of sitcoms, but there are a few that I enjoy watching on my own at lunchtime. One new one I am enjoying is Splitting Up Together, starring two favorite actors.

Jenna Fischer, who played the beloved role of Pam in The Office, stars as Lena, and Oliver Hudson, who played Adam on Rules of Engagement (a hilarious show), plays her husband, Martin. Well, technically he's her ex-husband because they split up in the very first episode. They tell their family and friends that they have the perfect solution to make sure their break-up doesn't affect their three kids. They remodel their garage into an apartment and trade off weeks - one lives in the house and handles all responsibilities while the other lives a single life in the garage, and then they swap. Sounds simple, right? Of course, it's not, and all sorts of problems crop up from Lena's inability to give up control to Martin's jealousy when Lena begins dating.

This is a typical family sitcom - light and funny - with an original concept. I adore both Jenna Fischer and Oliver Hudson, so I enjoy watching them both on-screen, and their three children are also played by able young actors. Diane Farr, another favorite of mine from Numb3rs, also co-stars as Lena's sister. There are plenty of unique twists in this strange situation to provide sitcom laughs, and even some warmth and heart as Martin realizes what he lost and Lena rediscovers herself as more than wife and mother. There are the usual stereotypes in the characters - the controlling mom and the hapless dad - but it's a fun show and a nice escape when I need a few laughs. Ellen Degeneres is an executive producer on the show. Check out the trailer below to sample the show's sense of humor.

Splitting Up Together airs on ABC Tuesdays at 9:30 pm Eastern time. I watch it On Demand, where most episodes are still available, and all of the episodes are available at the ABC website for free. Episode 7 airs tonight, with 8 episodes planned for season 1, and there is a season 2 planned.

Thursday, May 10, 2018

What YOU Can Do for 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:
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 16 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 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!
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day/Month!  Help to spread the word!

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

Tuesday, May 08, 2018

TV Tuesday: Instinct

My husband and I have been eagerly awaiting Instinct, a new TV show starring Alan Cumming (who we loved as Eli Gold on The Good Wife). We are now six episodes into this crime show with a sense of humor and are enjoying it immensely.

Cumming plays Dr. Dylan Reinhart, a seemingly mild-mannered college professor who teaches abnormal behavior, though it is revealed in the first episode that he used to be in the CIA. The show begins when Dr. Lizzie Needham, played by Bojana Novakovic, comes seeking Dylan's advice on a murder case. The killer has left a playing card at the scene of the crime, which was a theme Dylan used in his best-selling book on psychopaths, Freaks. Clearly, the killer is trying to get Dylan's attention, and Lizzie needs his help to track him down. Additional murders follow, and the two work together, running all over NYC, to find this serial killer. They do so well together that the NYPD asks Dylan to be an ongoing consultant for them, working with Lizzie when his expertise can help with a case. Dylan is reluctant at first - he left the CIA for a quieter life - but he loves solving puzzles and he enjoys working with Lizzie, so the two are soon partnered up.

As with most crime shows, Dylan and Lizzie face a new case in each episode, always involving some sort of abnormal psychology. Besides his expertise in that field, Dylan is also very observant, and he and Lizzie make a good team together. We are thoroughly enjoying this show so far. Cumming's character of Dylan is charismatic, mischievous, and very smart. Lizzie is also intelligent and likable. Best of all, the show has a great sense of humor (often bolstered by Dylan's grinning comments) - this is not a dark, brooding crime show. We look forward to watching it every week!

The first season of Instinct is airing on CBS on Sundays, with seven episodes aired so far (and a total of 13 planned for the season). We watch it On Demand, where the last four episodes are available. On the CBS website, you can watch the last 5 episodes for free or get all of them with a subscription to CBS All Access. You can also watch on Amazon for $1.99 an episode or $19.99 for the first season (right now, you could buy the first two episodes and watch the rest for free on CBS).

I can't wait to watch the latest episode tonight!

Also, if you are a fan of Alan Cumming, check out this short interview with Seth Myers - I had no idea he was Scottish!! He does such natural U.S. accents - Chicago and now NY - that this interview blew our minds.

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.

Wednesday, May 02, 2018

Groundbreaking EBV Research Sheds Light on ME/CFS

Cause for Celebration!
A new scientific research paper was just published in Nature Genetics Journal that could be the breakthrough that ME/CFS patients have been waiting for in pointing the way to better understanding - and treating - our complicated disease. The study was focused on better understanding the unique behavior of the Epstein-Barr Virus (EBV), the virus that causes mononucleosis/glandular fever and that is a factor in many ME/CFS patients' illnesses.

The paper itself is complicated, but journalist and ME/CFS patient Cort Johnson has, as always, done a great job of explaining the study in layman's terms in this article on the Simmaron Research site (an organization devoted to ME/CFS research). Click the link to read Cort's excellent summary of this research and what it might mean for ME/CFS patients.

I'll just summarize a few key points and leave the full explanation to the article.

First, there are some things that researchers already know about EBV's role in ME/CFS (some of this has been known for 20+ years):
  • EBV is one of about a dozen known infectious triggers for ME/CFS - that means that roughly 10% of the people who get mono/glandular fever (or one of the other known triggers) goes on to develop ME/CFS.
  • EBV is a unique kind of virus (in the herpes family) that remains in your body forever once you've had it. For most healthy people, it remains dormant or inactive but can be seen in blood tests in over 90% of adults.
  • Many ME/CFS patients' bloodwork shows that EBV has been reactivated in their bodies, even if they had mono decades ago. For instance, I had mono at age 13 but showed EBV reactivation after getting ME/CFS in my late 30's and 40's.
Researchers also knew that EBV has been implicated in many other immune disorders besides ME/CFS, including lupus and MS and other autoimmune diseases. This was news to me.

The excitement from this study is because it finally - for the first time - found out HOW exactly EBV is able to trigger immune disorders later in life, sometimes decades after it entered the body. In defining the mechanism of EBV's ability to reactivate and cause immune changes, this study has opened the door to all kinds of future research (and hopefully, treatments) on a wide range of diseases, including ME/CFS.

This is HUGE. Though experts understand some things about ME/CFS, the mechanism behind how it starts and continues has been a mystery - this new study provides a key that may lead to unlocking that mystery.

Even better news? Because SO MANY different and debilitating diseases have been implicated in EBV research, there will be plenty of interest - and funding - for further research into this promising area.

What can you do now?

This blog post explains all about the immune dysfunction at the heart of ME/CFS, including treatments that will help to improve your immune function (all those listed are simple, cheap, and easily accessible) and treating underlying infections, like EBV. That blog post also includes our own experiences in treating EBV and HHV-6, tick infections, and yeast overgrowth. Most people with ME/CFS have some sort of infections behind the scenes that either triggered their ME/CFS to start or are reactivated, and treating them often brings dramatic improvements. In fact, patients who say that no treatments seem to help them almost always discover there are underlying infections present. Once those are treated, then those patients often improve significantly...and then other treatments will also work better.

To help your doctor understand the need for testing, diagnosing, and treating underlying infections, share these resources with him/her:
Exciting news and hope for better times ahead!

Tuesday, May 01, 2018

TV Tuesday: Rise

On my own at lunchtime, I have started a new TV show: Rise, about a high school drama club in a small town. I'm enjoying it so far - it's kind of like Glee, only about drama and with a more serious tone.

Josh Radnor (well-known for playing Ted on How I Met Your Mother) stars in Rise as Lou, a high school English teacher in a small town in rural Pennsylvania. He volunteers to take over the drama club, which he feels has been stuck in an unimaginative rut - an opinion that the current head of drama club, Tracey (played by Rosie Perez), doesn't appreciate. The two of them end up teaming up to try to breathe new life into the school's plays. The problem is that, as in most small American towns, football is king and drama is treated as the ugly stepchild and gets little funding. Lou immediately makes waves with the principal, parents, and school board by ditching the same old tired plays and choosing Spring Awakening, a show that deals with all kinds of taboo topics relevant to teens. He and Tracey struggle to recruit enough kids to play all the parts, even convincing the star quarterback, Robbie, to try out when Lou hears his incredible voice (slightly familiar, Glee fans?). The show chronicles both the play production as well as the challenges of the families of key students. Lou's own son, Gordy, is on a wild streak and seems to have a drinking problem.

I always enjoy TV shows about high school - I was a total Gleek and absolutely loved Freaks & Geeks when I finally discovered it just last year - so I am enjoying Rise so far. It's mostly a straight-up drama, with scenes that include the kids practicing the play, and is as much about what happens outside of school as within those walls, touching on issues like sexual identity, gender identity, infidelity, divorce, single parents, teen drinking, and more. I've always liked Josh Radnor, and he does a great job portraying Lou's passion to make a difference. Rosie Perez is excellent as always, here in a multi-faceted role. The other actors playing parents, teachers, and kids are also very talented; it's a great ensemble cast. I'm interested to see where the show will go the rest of its first season.

I've watched five episodes of the 10-episode first season so far (episode 8 airs tonight at 9 pm on NBC). I watch it On Demand, and you can also catch up on past episodes at the NBC website for free. You can also watch it on Amazon for $1.99 an episode or $16.99 for the first season.

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.

Monday, April 30, 2018

Movie Monday: A Quiet Place

While my husband and I were on vacation recently, camping in Virginia, the beginning of the week was a bit too cold for sitting around a campfire and relaxing outside. One evening, we went into town to see a movie (once we figured out that the "late" shows in this small, rural town were at 6 pm!). We saw A Quiet Place, a unique, captivating movie that defies categorization.

Jon Krasinski (who is well-known for playing Jim on The Office in the US for many years) and his wife, Emily Blunt, star as a husband and wife, Lee and Evelyn (though I didn't know their names until just now). They are living with their three children in some sort of post-apocalyptic world, as the film opens. Noah Jupe plays their preteen son, Marcus; Cade Woodward plays their youngest son, Beau; and Millicent Simmonds is magnificent as their deaf teen daughter, Regan. It becomes obvious from the first scenes that the dangers in this new world are some sort of terrifying creatures that hunt by sound. The family takes great pains to stay silent, first at the deserted store in town where they are restocking supplies and later at their home on a farm. They are all barefoot and have even covered the paths they walk with sand so as to muffle the sound of their footsteps. Fortunately, they all know sign language because of Regan, so they manage to communicate. Right from the start, though, you notice that Evelyn is pregnant, and thoughts of a crying baby (not to mention giving birth) in this silent world add to the growing tension, even before you completely understand the dangers.

Watching this movie is a unique experience. For most of the 90 minutes of the film, it is almost entirely  silent - no dialogue, few background noises, no music. You quickly acclimate to the family's silent communications, but the suspense builds as you grow to understand what a single noise could mean. On IMDb, this movie is listed as Drama, Horror, Sci Fi, and Thriller, and that sounds strange but is pretty accurate. I've heard it called a horror movie (my son was surprised that I wanted to see it), but it is as much a family drama. The tension lives up to its thriller moniker, and once you get a glimpse of the creatures, you immediately understand that they must be some sort of alien thing, hence the sci fi tag. But this movie is far more than the sum of its parts. Krasinski wrote and directed as well as starred in it, and the full cast listing includes just six people (and "man in the woods" is not on-screen for long!). To create a film with essentially just five characters and all that silence that is so compelling you can't take your eyes from the screen is quite an achievement.

As for the scaredy cats wondering if this is too horror-ish...I don't normally like horror movies, and I loved this movie. However, while it is a (very) quiet family drama delving deep into these few characters' lives (I cried at one point), the suspense and tension are high throughout, and there are a few gotcha moments that made me scream and grab my husband's arm! It doesn't take much after all that silence to feel alarmed, especially when you know the new baby will be coming soon. The few glimpses of the creatures are pretty gruesome, though the movie only gets a PG-13 rating, and there is little gore or on-screen violence (but what you imagine off-screen is enough, when it happens). In short, we were both spellbound for 90 minutes. We've told our sons they must go see it!

A Quiet Place is still in theaters, and that's definitely the best way to see it, if you can, on the big screen, with silent people around you. Chewing popcorn sounds frighteningly loud! Click the Fandango link below to find theaters and times near you - maybe you have a local recliner theater like we do. It is due to come out on DVD, Redbox, and Netflix on July 3, 2018 (link here and below to pre-order the DVD).

Disclosure: I paid for this movie myself. My review is my own opinion.

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.

Look up theaters and times:

Sunday, April 29, 2018

Weekly Inspiration: Find Your People

I have often written here on the blog about the importance of connecting with others like yourself, dealing with the same issues. Besides my own blog posts, I also wrote an article for the ProHealth website called Birds of a Feather: The Joys of Community, about the benefits of connecting and how to find others, even if you can't leave your house (that article also chronicles the start and growth of my own local group).

In addition to the tips I included in that article on finding others, I wanted to tell you about another resource. #MEAction is a quickly-growing patient advocacy group that was started as a result of Jen Brea's wonderful documentary Unrest. The #MEAction staff has been working hard to bring people together from all over the world, and one of their efforts is this list of Facebook groups for ME/CFS. There are over 100 groups listed there now and the list keeps growing! These groups offer a wide range of options to connect with others - some are regional, offering you the chance to not only interact online but to maybe get to know people locally, too, and some are focused on a specific audience, like Pregnancy and Parenting, Military and Veteran's Families, and Caregiver's Support Group. There are over 100 to choose from, so browse through the list and join the groups that are right for you.

This is a great way to get to know other patients and to relieve that loneliness and isolation that are so common in chronic illnesses, especially ours which leaves so many bedridden or homebound.

Join some groups today and find your people!

Thursday, April 26, 2018

Two Surveys - Help ME/CFS Research from Home!

There are two online surveys for ME/CFS patients currently open for participation - this is a great way for even those who are homebound to help move ME/CFS research forward - even from your bed!

The first is sponsored by the excellent Massachusetts CFIDS/ME and FM Association and is a VERY brief survey on patient experience with commercial medical insurance companies - it is just a few questions (with room for explanation, if you like) and literally took me less than 5 minutes to complete.

The renowned Leonard Jason at DePaul University has already contributed a lot to knowledge of ME/CFS through his studies, and is now conducting one on Abnormal Response to Physical and/or Cognitive Exertion in ME and CFS Patients.  This is a longer and more in-depth survey, but Dr. Jason understands our limits and has designed it so that you can work on a bit at a time and save it to finish later.

You can do your part, right from your own couch or bed. Check out those two surveys today to help keep ME/CFS research moving forward!

Tuesday, April 24, 2018

TV Tuesday: Good Girls

As regular readers know, I enjoy watching more girl-centric TV shows when I am on my own at lunchtime. My latest obsession is a new NBC show, Good Girls, about three suburban moms gone rogue. It's a unique plot with a great cast, and I am loving it.

Christina Hendricks, well-known for playing Joan on Mad Men, is Beth, an overworked mom of four kids who has devoted her life to her family. In the first episode, she finds out that her husband's been having an affair with a woman at his car dealership and that his midlife crisis has cleared out the family's bank accounts so that they are now in serious debt. Beth's younger sister is Annie, played by Mae Whitman who is known for her role as Amber on Parenthood. Annie is divorced and shares custody with her ex of their young daughter, Sadie, who dresses like a boy. Her dad and his new wife have threatened to sue for sole custody, so Annie is also in dire financial straits, needing to hire a lawyer to fight for her daughter. Rounding out the trio is Ruby, played by Retta (best known for her role on Parks and Recreation, though I know her from The Girlfriend's Guide to Divorce). Ruby is happily married and has two kids. She works at a diner, and her husband works as a security guard, so their money is already stretched thin, but now their daughter needs an expensive medication for her kidney disease. These three very desperate friends decide they are desperate enough to do something crazy - rob the grocery store where Annie works. As you might have guessed, nothing goes according to plan, and their one night of crime turns into much, much more.

This is such a fun show. It deals with some serious issues and family drama but mostly in a light way. The women's escapades - which grow out of control into something they never envisioned - provide plenty of suspense but also lots of laughs as these normal moms try to act tough. I love all three of these actresses, and they are great in these roles, playing off each other. It's wonderful to see a show like this that puts a spotlight on women's friendship (even though they are leading a life of crime). There are always surprises in every episode, and I look forward to watching each one.

Good Girls is currently airing on NBC, Mondays at 10 pm Eastern, but I don't watch anything live anymore! Nine episodes have aired so far, and the tenth and final episode of season 1 airs next week. I am up to #7 so far and still loving it. All episodes from season 1 are available On Demand if you have cable or on the NBC website for free. It is also available on Amazon for $1.99 an episode or $16.99 for the entire season.

Finding a Doctor for ME/CFS

I have had a LOT of requests for this information recently, on how to find a doctor to help with treatments and which doctors are experts in ME/CFS. I've been working on a book, Effective Treatments for ME/CFS: Our Experiences (which will hopefully be published this fall), which includes a section on finding doctors. What follows is from my first draft, but I think it is fairly complete - I've shared this with people in different parts of the world and gotten feedback and added to my lists. You can read more about Effective Treatments for ME/CFS here on my blog at the link.

What follows is excerpted from my upcoming book, Effective Treatments for ME/CFS: Our Experiences (© 2018 Suzan L. Jackson). Please don't reprint it without permission, though feel free to share this post with those looking for a doctor. And let me know in the comments if you know of other doctors with expertise in treating ME/CFS that I have not included here.

" You will see that there are some treatments discussed in this book (and on this blog) that you can try on your own, things involving diet, supplements, or other do-it-yourself approaches. However, for us, the most significant improvements have required the help of a doctor – either for prescription medication, expertise, labwork, or supplements that have to be ordered through a compounding pharmacy (which also require a prescription). The very best situation is the kind that we are now in: we travel about once a year to see one of the top ME/CFS experts (about a 2-hour train ride away for us) who helps us with specialized treatments, and we also have a local primary care/family doctor who understands the basics about ME/CFS and is willing to help us with treatments she is familiar with and also follow us for basic medical care.

Primary Care Doctor
Finding a local doctor who is willing to help you can sometimes be challenging, but it is well worth the effort. At the start of my illness, it took me a full year of seeing various doctors to find a new primary care physician who knew about ME/CFS – as I explained in Chapter 1, she is actually the first doctor who immediately recognized that I had ME/CFS, after a year of other doctors saying, “I have no idea what’s wrong with you.”

However, you don’t necessarily need a local doctor like mine who is already familiar with ME/CFS – what you need most is an open-minded doctor who is willing to listen and learn alongside you. Our pediatrician was a great example of that. She knew nothing about ME/CFS before my sons got sick, except that I had it. When they became ill, she gladly read all the information I gave her about the disease, listened to the recommendations from a top expert (now retired) we went to see, and called another expert to ask questions about a treatment we wanted to try for the boys. Over time, she became something of a local expert herself, just through her willingness to listen and learn. We’ve all run into arrogant doctors who dismiss you if they’re not familiar with your condition. If you encounter one of those, don’t go back.

You need a doctor whose attitude is, “I don’t know much about ME/CFS, but I am willing to learn and help you as best I can.” They are out there – it just may take you some trial and error to find one. You can do some upfront screening by calling potential primary care doctors and asking if they treat other patients with ME/CFS.

With a complicated, long-term illness like ME/CFS, it is very important to have a good relationship with your doctor, to feel like you can talk openly to him or her and to know that he or she will listen to you. If your doctor is unfamiliar with ME/CFS, share the CDC and Solve ME/CFS websites with him or her as a starting point. That last article I listed (on page 23 of the pdf) on the previous page for family doctors is also a great introduction.

ME/CFS Top Experts
In addition to having a local doctor – both for certain ME/CFS treatments and to follow your general health and well-being and take care of other medical problems – you should consider seeing a doctor who has specific expertise in ME/CFS and is up-to-date on the latest research. There aren’t a lot of these around, but it is worth traveling to see one of them, if you can manage it. They are all accustomed to working with patients long-distance, via e-mail and phone, after an initial in-person visit and with intermittent in-person follow-up visits.

The following are considered the top experts in ME/CFS – they may not all be accepting new patients all the time, but it’s worth a phone call to ask. Sometimes, a doctor whose practice is full may agree to take on a new patient if they fit into a research study the doctor is currently conducting or participating in:

United States:

Dr. Lucinda Bateman and staff – Bateman Horne Center -  UT
Dr. John Chia – Torrance, CA
-->Theresa Dowel, NP (Nurse Practitioner) – Four Peaks Clinic – Flagstaff, AZ (she studied under Drs. Montoya and Chia)
Dr. Kaufman & Dr. Chheda – Center for Complex Diseases – Mountain View, CA
Dr. Nancy Klimas & other doctors – Institute for Neuro Immune Medicine – two locations in FL
Dr. Susan Levine – NYC
Dr. Jose Montoya & his staff at Stanford in Palo Alto, CA
Dr. Ben Natelson - NYC
Dr. Daniel Peterson – NV
Dr. Peter Rowe – Johns Hopkins, MD (pediatric – hasn’t been able to accept new patients for many years but you can sometimes get in as part of a study, and he is happy to talk to your doctor by phone or e-mail even if you are not a patient)
Dr. Kogelink and staff at Open Medicine Institute in northern CA

All of the above doctors work closely together to coordinate on the latest treatments for patients and participate in ground-breaking research, so you will get similar treatment approaches from all of them. All have been working in this field for a long time and have treated many ME/CFS patients.


Dr. Ian Andrew Hyams – West Vancouver
Dr. Byron Hyde – Ottawa

United Kingdom:
(Note that it is harder to get real medical treatments for ME/CFS in the UK currently because the NHS prescribes exercise and therapy as the only approved “treatments” for ME/CFS; however, the NHS is currently (finally!) revising these treatment guidelines since the faulty research they were based on has been debunked. So, hopefully, things will improve soon for UK patients, but for now you need to go outside the NHS and/or advocate even harder for yourself to see specialists, as described in the treatment chapters, to treat one aspect of ME/CFS. Some of these doctors work both within NHS and in private practice – you need to see them outside the NHS for them to be able to offer real medical treatments for ME/CFS.)

Dr. Bansal – St. Helier University Hospital – Carshalton (may be retiring from clinical practice at the end of 2018 to focus on research)
Dr. Sarah Myhill – Knighton
Dr. Vinod Patel - Warwickshire
Dr. Nigel Speight – Durham (pediatrics)
Dr. William Weir – London
Doctors at Breakspear Medical Clinic - Hertfordshire

Other Europe:

Dr. Kenny De Meirleir – Brussels, Belgium
Gottfries Clinic – Mölndal - Sweden


Dr. Christabelle Yeoh – Central Coast of NSW
Doctors at CFS Discovery Clinic - Melbourne

New Zealand:

Dr. Rosamund Vallings – Howick, Auckland

Other Doctors Who Treat ME/CFS
These doctors are sort of a second-tier of experts. They are not personally involved in the research or with other cooperative efforts in the field, but feedback from patients has indicated that they know how to treat many aspects of ME/CFS effectively.

United States:

Dr. Dale Guyer – The Guyer Institute – Indianapolis, IN (I’ve heard of him from other patients but don’t know anyone personally who has seen him for ME/CFS)

The Holtorf Clinic - multiple locations, including Southern CA, Atlanta, UT, and Philadelphia.

Dr. William Spurlock - Dallas, TX (note: you may see that Dr. Spurlock has been disciplined by the Texas Medical Board for ordering “medically unnecessary tests” and using “medically unproven” treatments for ME/CFS – ALL ME/CFS doctors could be said to do this, since there are no FDA-approved treatments for ME/CFS currently and treating it effectively requires ordering tests and using treatments that are officially unproven for the condition. I know that he uses many of the same treatments as the top experts listed above, and I personally know of patients who’ve improved with treatment from him – even one young woman who fully recovered.)

Dr. David Systrom - Brigham & Young Hospital - Massachusetts - focuses mainly on treating OI and exercise intolerance - very knowledgeable in those areas

Dr. Amy Yasko – Maine (her expertise is broader than ME/CFS but the treatments she focuses on are applicable to ME/CFS)

For all locations, check these doctor databases/lists, keeping in mind that the level of expertise of these doctors might vary widely, but they all say they treat ME/CFS – some may specialize more in fibromyalgia, so read their information and call with questions for any potential doctors you are considering.

Doctor Database: http://fmcfsme.com/doctor_database.php (not currently available?)

List of ME/CFS Doctors & Clinics – top experts and second-tier ME/CFS doctors are mixed together on this list (mostly US and Canada):

Chronic Fatigue Syndrome: A Roadmap for testing and Treatment (scroll to the end of the document for a list of ME/CFS Doctors and Clinics:

UK – List of Physicians Trained to Treat ME/CFS from Dr. Myhill’s website:

The Australian ME/CFS Good Doctors List

Sunday, April 22, 2018

Weekly Inspiration: You Deserve a Break Today!

My husband and I just returned last night from a week-long camping trip to Virginia with our pop-up camper. We had a few hiccups (including the weather in this incredibly cold spring we are having!), but overall, we had a good time. It was a nice, relaxing, quiet getaway with lots of time spent outdoors, which was just what I needed. As I explained in this article on The Restorative Power of Nature, being outdoors is very rejuvenating for me, and plenty of scientific studies bear this out. Spending time in nature (or even looking at photos of nature) has been shown to have all sorts of positive physical effects on the body, including improving the immune system! Many years ago, I also wrote this post on The Joy of the Outdoors, about how spending time outdoors brings us joy.

Our camper at dusk - home away from home!
This very cold, wintry spring we've been enduring made me feel even more desperate for a little vacation. For me, it was mostly about feeling overwhelmed by my normal daily life. With limited time and energy and necessary naps every day, I have been juggling two blogs, support groups both online and locally, a growing freelance writing business, plus all the normal, necessary stuff related to maintaining our home, helping our kids, managing bills and medical care (a full-time job in itself!), and just the daily maintenance tasks of life. No wonder I have been feeling overwhelmed and worn out! Those are my issues, but maybe for you it's more a matter of feeling bored and sick of the same old thing every day. Whatever your situation (unless, of course, you are fully bed-ridden), we can all use a little break from our normal lives once in a while and a change of scenery - it really is rejuvenating!
Enjoying an easy paddle on a quiet afternoon.
While our relentless and successful search for Effective Treatments for ME/CFS has helped me improve to where I am today - able to hike or kayak (with a heart rate monitor and staying below my limits) for an hour - we never stopped traveling or camping, even during the worst years of illness, when both of my sons and I all had ME/CFS pretty severely. For tips on how you can manage a getaway, check out my article on Travel Tips for the Chronically Ill and this post on Camping and Enjoying the Outdoors with ME/CFS. Both include lots of helpful tips on managing to get away for a bit. Camping works for us (with the accommodations mentioned in that post above), but for you, maybe it's just a couple of days in a hotel or a rented cabin (there are some inexpensive ones in many state parks, often with lovely views and some with handicapped access) that feels more home-like. Or maybe it's just an hour with a friend or family member driving along the back roads for a change of scenery or even lying in your yard, garden, patio, or deck outdoors instead of on the couch. However you define it, just getting away from the same old, same old can help revive your mental health - and a dose of nature helps even more.
Relaxing with a book while dinner cooks on the campfire
So, this past week, we enjoyed a quiet, restorative getaway. We just drove a couple of states away (south!) to Virginia, with our pop-up camper (home away from home), and stayed in two lovely state parks in the southeastern part of the state. Nothing fancy or expensive, but it was just what I needed. We spent a lot of time reading and relaxing, took short walks according to my limits, enjoyed campfires, and explored a few small towns nearby. When it got really cold and our camper's furnace broke, we went into town to buy a space heater, and on one cold evening, we went to the local movie theater instead of sitting by a campfire. We just relaxed and took things at our own pace (my husband is quite happy to also take a nap when I do every afternoon!). It was wonderful to be totally unplugged - no internet, no social media - and to be away from my ever-growing to-do list.

And now we are back home - it was great to have my couch back last night! And I feel refreshed and ready to tackle all my to-do's anew. Everyone deserves a break, no matter how you define it to fit your needs.

Sunshine selfie, from a bench during a short walk.