Friday, August 18, 2017

Take Action Now to Restore ME/CFS Funding at CDC

Most Americans with ME/CFS and other chronic illnesses breathed a big sigh of relief this month when Congress' efforts to repeal the Affordable Care Act (ACA) failed, and we will - for now - hang onto our rights as those with pre-existing conditions and retain some (though not perfect) access to health insurance.

You can't breathe easy yet, though, because we now have another, familiar threat to ME/CFS in the federal government: the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again. Yup, that's right, even that meager and insufficient little $5 million we get for research in the CDC (far, far below what other similar diseases get) is in danger of being yanked away completely. If this seems familiar to you, it's because this happened exactly 2 years ago, in August 2015, and ME/CFS patients and advocates spoke up and successfully got our little $5 million reinstated to the budget.

So, it is time once again for your voices to be heard! No need to run to the rooftops and shout, "We Are Here! We Are Here!" - unlike the Whos, we have the internet.

Just take a few minutes to fill out this quick form and hit send, and an e-mail letter will be sent to your Congressional reps. I just did it, and it took me 5 minutes from start to finish (and I added a fairly detailed message about our family and dozens of other families locally).

Use this link from Solve ME/CFS to send your message NOW, while we still have a chance to get this reversed.

Tuesday, August 15, 2017

TV Tuesday: Gypsy

Another TV show my husband and I have been enjoying this summer on Netflix is Gypsy, an original drama about a therapist who gets too involved in her patients' lives. It's intriguing, with a slightly dark and creepy feel to it that leaves you constantly wondering what's going to happen next.

Naomi Watts plays Jean, a wife and mother who works as a therapist and seems to have a good life. She and her husband, Michael, played by Billy Crudup, live in a large and lovely suburban home with their daughter, Dolly, who is struggling with some gender issues (well, she's not struggling - she thinks of herself as a boy and is happy that way, but everyone around her is struggling with it!). Jean commutes into NYC on the train and works as a therapist, in private practice but consulting with a small group of other therapists. Michael also works in the city as a lawyer, and he and Jean seem to have a decent relationship.

What Michael doesn't know is that Jean makes a habit of lying and sneaking around and getting WAY too involved in her patients' lives. In the first episode, we see her meet with her patient, Sam, a youngish man who is having trouble getting over his ex-girlfriend, Sidney. He mentions that Sidney is a barista at a nearby coffee shop, and soon Jean is hanging out at the coffee shop, introducing herself to Sidney as Diane and befriending her, though it seems that Sidney may be interested in "Diane" as more than just as a friend. Remember, this is Jean's patient's ex-girlfriend! Another patient, Claire, played by Brenda Vacarro, is estranged from her grown daughter, and before long, Jean is seeking out the daughter to see their relationship from her perspective. She just can't seem to stop from inserting herself - secretly - into her patients' lives. Interestingly, Jean actually seems like a decent therapist - caring, thoughtful, and often helpful - though you know her creepy habits can't end well.

As Jean follows various people or meets up with Sidney or Claire's daughter or other people related to patients, she has to keep lying to her husband, her friends, and her co-workers to cover her tracks. In Sidney's case, since Jean is kind of attracted to the younger woman and enjoys stepping into her alter ego, Diane, that she created, these lies and secret running around (often in the middle of the night) become more and more convoluted.

Gypsy (Stevie Nicks recorded an acoustic version of the iconic song for the show's theme) has an unusual tone. It's a drama - sometimes about Jean and her family, sometimes about her patients - but it has a dark, slightly creepy undertone. The more that Jean lies and the more deeply she gets involved with her (unwitting) patients' lives, the more tension builds, as it seems inevitable that she will get caught out sooner or later. Sometimes, what she's doing seems downright dangerous, as with Sidney's alluring and manipulative advances, or visiting a patient who lives in a bad part of town with an abusive boyfriend. So, although I wouldn't call it a thriller, there is a growing feeling of suspense and dread. You want to keep watching to find out what happens, even as you feel an urge to cover your eyes or yell at Jean to watch out! Naomi Watts is brilliant as Jean, switching to these different personas she adopts when she's pretending to be someone else and capturing Jean's underlying feelings of discontent beneath her normal-seeming exterior.

We have watched six of Gypsy's ten episodes in its first season. As a Netflix original show, it is available exclusively on Netflix.

Monday, August 14, 2017

Movie Monday: The Circle

We've really been on a movie roll lately, seeing so many movies I can barely keep up with reviews! We kind of go in streaks, depending on how many good TV shows are on at the time - late summer is always a lull. Our college-aged son was home sick last week, so to cheer him up, we rented a movie Saturday night that we've all been wanting to see: The Circle, starring Tom Hanks and Emma Watson. We all enjoyed this creepy movie about social media gone mad, based on a Dave Eggers novel by the same name.

Emma Watson plays Mae, a young twenty-something woman who is very sweet and a bit shy and devoted to her family. Her dad, played by Bill Paxton, has MS; her mom, played by Glenne Headley, takes care of him as his disease progresses; and Mae lives at home so she can help, too. At the start of the movie, Mae is working as an anonymous customer service rep in a dead-end job, until her best friend, Annie, suggests she apply for a job at The Circle, the huge tech/social media company where she works. Mae gets the job, and her life begins to change dramatically.

The sprawling campus of The Circle is similar to what I have heard the main headquarters for Google and Facebook are like, with employees using bikes in between buildings, beautiful landscaping, and all kinds of extras for employees, like parks and amphitheaters and play areas. Although she is still in customer service, Mae's job is much different, too, with constant electronic monitoring and a spiffy grading system that gives her instantaneous feedback on her performance. Her co-workers are also very different - pleasant and welcoming, encouraging Mae to stop going home on the weekends and spend more time at The Circle in her off-hours, too. There are parties and live bands and more right there on campus.

Soon, Mae is swept up in life at The Circle and keeping in touch with her parents only through video chats. Her childhood friend, Mercer, doesn't approve of her new job or lifestyle - he prefers the simple, unconnected life. Mae is impressed when she meets the head of the company, Eamon Bailey, played by Tom Hanks, though she is beginning to get an inkling that all of this connectedness might have a downside. When Bailey asks her to take part in a social media experiment, though, and offers to include her parents and add them to the very generous company health plan, Mae is all in. As you might guess, things don't go quite as planned as the openness and connections the company touts are taken to new heights.

We all enjoyed this taut drama. It's suspenseful - not in a horror-story way but in a I-know-this-won't-turn-out-well way that makes it very compelling. Besides the growing tension, it is also an intelligent and thoughtful look at our own modern society and how our craze for sharing our lives 24/7 could easily get out of hand. Issues of privacy, ethics, and freedom are explored. And of course, the cast is excellent, especially Watson and Hanks. The Circle is a cautionary tale that is highly entertaining.

The Circle is now out on DVD and available to stream on Amazon, starting at $4.99.


Sunday, August 13, 2017

Weekly Inspiration: Find Your People!

You might have noticed the blog was pretty quiet this week, after Tuesday - that's because I poured all my time & energy into hosting a potluck dinner for our local ME/CFS (and related illnesses) group on Wednesday! I started the group seven years ago, but this is the first time we've hosted a gathering ourselves, and I was worried about managing it, but there was no cooking since everyone brought something (and we provided burgers and hot dogs and snacks and drinks) and my husband and two sons all helped a LOT. In fact, when everyone left at 8 pm (that's the up-side of socializing with others with chronic illness - they SO get my limits!), I felt a bit tired but mostly just incredibly satisfied and happy. These are my people!

In total Wednesday, from 4 - 8 pm, we had 7 sick adults, 3 sick teens/young adults, and 4 healthy parents/siblings/spouses (14 total, including us). Some have been with the group since its beginning seven years ago, others have been added through the years, and two families were new to our group and just meeting everyone for the first time. We have a couple dozen additional families in our local group who weren't able to make it this time. The great thing about getting together with others dealing with the same illnesses and issues is simply that they "get it." Everyone was making sure the ones with ME/CFS and OI were sitting down, we had plenty of salty snacks, foods were labeled for those with dietary restrictions, and you just know that everyone else understands your limits without you having to say a word. When we get together like this, it is about 50% socializing and about 50% helping each other, with tips on local doctors, treatments that help, diagnoses to consider, etc. It's an incredibly warm and supportive environment. ME/CFS and other similar illnesses can be so isolating that finding other people going through exactly what you are going through is an incredible experience - and definitely inspiring.

How We Got Started & Evolved
Just in case you haven't been reading every blog post here for the past 7 years (!), I'll give you a little background on how we got started. Back in 2010, when both of my sons had ME/CFS (and me, too), I kept hearing about other kids in our area who also had it. I found out about these other families through a wide variety of means and talked or met up with some of them, but at one point I thought, I'm meeting each of them, but they haven't met each other! So, I arranged a lunch meeting at a local restaurant, and five moms from the surrounding region (here in tiny Delaware that means some came from PA and some from MD or NJ) came. That first meeting was a mind-blowing experience for all of us, and we decided that our families had to meet, too. You can read all about that first meeting - including how I found these other parents, in my post, Birds of a Feather.
Adults at our first family gathering

We followed up that first meeting with a second "Mom's lunch," and some of our kids came along this time to meet each other. This was another huge success, both for the parents and the teens. You can read all about it in my post CFS Mom's Lunch. By then, us moms were good friends, and our kids got along well, so one mom offered to host a backyard barbecue the following month. This was another amazing event, with all the kids present and the dads finally able to meet the other families, too. I wrote about it in Local CFS Picnic a Huge Success!  On the way home that night, our own sons were very enthusiastic and asked when we could do it again.

And so, our local group was formed. Seven years later, I now have 36 Party for Chronically Ill Kids, explains how just the opposite is true, and how freeing and fun it is for these kids (and adults!) to hang out together.
people on my local e-mail list, and we get together several times a year for weekday lunches at a restaurant or potluck dinners in someone's home for the whole family. The group is no longer just families with sick kids; plenty of sick adults are now a part of it, too. Our original families are still an active part of the group (though one family moved). Some people never miss a gathering, some come when they can, some have never been to a gathering, and some are housebound and can't come...but they are all on the e-mail list and appreciate being connected with others in the local area even in that limited way - to know they are not alone. And lest you think these gatherings of sick people are boring and depressing, this post,

Kids & teens at one of our lunches
How You Can Find Others Locally
As you can probably tell, our local group is not a typical support group, where you meet one Saturday a month in a library or church to sit in a circle and talk about your illness. In fact, where I live, in Delaware, I know of three support groups like that - they all eventually fizzled out and no longer meet. I can't claim any great wisdom in doing this differently - it just sort of happened this way naturally! As you can see, our group is more social, while still providing support and helping each other. We have become good friends over the years, and the new people who came to our house this week also said they felt comfortable and supported by friends in our group, at their very first gathering. We keep the vibe low-key and friendly, but there is a LOT of important information that gets passed along when we get together, too.

You may not know anyone else locally with ME/CFS (or related illnesses like fibro, EDS, and Lyme), but - unfortunately - there are plenty of people in every region of the world just like you. The key is finding them, especially since most of us don't leave home very much. You can find others in a lot of different places, as I did - through your doctors, schools (in the case of sick kids & teens), mutual friends, and even online. This article I wrote for ProHealth, Birds of a Feather - The Joys of Community, provides lots of tips on how to find others, both online and locally.

Having a support network of friends who are dealing with the same challenges that you are is incredibly rewarding, both in terms of friendship and in terms of actionable information that can help to improve your health. These friendships we make - and continue to nurture - have enriched all of our lives.

So, get started and find your people!

Tuesday, August 08, 2017

TV Tuesday: The Bold Type

My son was home sick for about a week, so he and I reverted back to old habits - a paleo chocolate smoothie and an NCIS episode for lunch (and sometimes an extra Bob's Burgers episode if we're feeling wild). He went back to his apartment Sunday night, and I went back to my latest lunchtime girl-centric obsession: The Bold Type, a new show about three young career girls working for a fashion magazine, inspired by the life of Cosmopolitan editor-in-chief, Joanna Coles.

The magazine on the show is called Scarlet, but it's clear it is based on Cosmo, with a focus on modern, independent young women, with lots of flash and a reputation for plenty of sex. On the show, the editor-in-chief is the supremely confident, always fashionable Jacqueline Carlyle, played by Melora Hardin who played Jan on The Office. The show focuses mainly on three young women in their early 20's, just starting out in their adult lives and their careers.

Jane, played by Katie Stevens (who was apparently on season 9 of American Idol), is a staff writer at Scarlet. She's only recently been promoted to this position, and she desperately wants to be taken seriously as a writer, but she's worried she will get pigeon-holed into writing only about sex or fashion at Scarlet. No such luck yet for Sutton, played by Meghann Fahy, who is still toiling away as a lowly assistant, fetching nonstop green juices for a grumpy, demanding senior editor. Sutton has always dreamed of working in fashion, but she comes from moderate means and doesn't have the credentials. She's also secretly dating Richard, a young man who works in the corporate offices of the magazine's parent company. Kat, played by Aisha Dee, rounds out the trio. Kat has worked for Scarlet for the past couple of years as their social media coordinator, wrangling Instagram, Twitter, and the other platforms to help keep Scarlet's readers engaged.

These three bright, ambitious young woman are trying their best to move forward in their careers, while dealing with all the usual drama of the early 20's. I've found it refreshing that these characters are all well-rounded, complex, and interesting - no worn-out stereotypes here. They are also - the three main characters as well as their high-powered boss - all intelligent and ambitious without being portrayed as bitches. Hallelujah! In fact, they're all kind as well as smart. It's about time. The young actresses perfectly capture the conflict of trying to appear confident and bold when you are actually very unsure of yourself on the inside.

In addition, the show deals with some important and engaging topics. Yes, there is plenty of frank sex talk - this is, after all, meant to be Cosmo - but the show tackles a lot more than that, too. And even its sex-related topics are things that aren't usually discussed openly, like when Jane is assigned to write the monthly sex column on how to have the best orgasm, and she confides to her friends that she's never had one. Recent episodes have dealt with online bullying and shaming, racial profiling, and sexual identity.

I've watched four episodes so far (#6 airs tonight), and I'm enjoying it very much. It's full of life, joy, and love but also deals with serious issues. I also like the behind-the-scenes view of working for a big magazine (as both a writer myself and a lover of magazines). It's kind of like a modern version of Good Girls Revolt (a fabulous show on Amazon set in 1969), and it's exciting to see smart, young women getting these kinds of roles for younger girls to watch on TV and emulate. I suppose this show is probably aimed at a younger audience, but I am in my 50's and I'm enjoying it!

The Bold Type is currently airing on Freeform (formerly ABC Family), so you can watch it On Demand or you can find all episodes (free) on the Freeform website. It is also available through Amazon, for $1.99 an episode or $16.99 for the season (link below).

Monday, August 07, 2017

Movie Monday: War for the Planet of the Apes

Last week, my husband and I had a real date night treat: dinner out and a movie in the theater! Even better, we went to a theater that's been newly refurbished in our area that our son told us had real recliners. So amazing!! These theaters have been refitted with FULL recliners - the foot rests go all the way up, the backs lean back - ahhhh! Almost like being at home. For someone like me - very short and can't sit for long with my legs down due to medical problems with blood pressure & heart rate - this is a game-changer! I've been frustrated lately because lots of theaters are putting in new seats around here, but they are using huge seats with high seat backs and extra leg room. I'm too small to lean back comfortably in these giant seats, the way my husband does, and the wider space between aisles and high seat backs means I can't usually put my feet up anymore, either. I LOVED the new recliner theater and may not ever go anywhere else!

Oh, and the movie was good, too! I almost forgot, in my ecstasy over the recliners. We saw The War for the Planet of the Apes, the third and final prequel to the original Planet of the Apes movie (1968). My husband and I were big fans of the original movie, and our whole family has enjoyed these prequels. This one was just as good as its predecessors. If you haven't seen those yet, I highly recommend you go back and start at the beginning, with Rise of the Planet of the Apes and Dawn of the Planet of the Apes.

The War for the Planet of the Apes picks up where the last movie left off, with Caesar (the original intelligent chimpanzee who started this whole revolt) and his followers ensconced in the forest, trying to stay protected from the human armies that are trying to find them. Caesar has maintained his focus on peace (though the humans don't seem interested in that goal) and only fighting to defend themselves, never to attack the humans offensively. That all changes when a defector leads the human armies to the apes' secret cave hideouts, and Caesar (and many others) suffers a horrific loss. Once the humans have been fought off, Caesar knows that his first priority must be to get the remaining members of his group to safety and find a new hiding spot, but he is personally bent on revenge now as well.

Caesar sends the community on a journey to a new safe place they've heard about, while he and a few loyal followers head off in another direction, tracking the human army - and especially a ruthless man known as The Colonel, played by Woody Harrelson. Along the way, they pick up a deaf human girl, whom they name Nova, played wonderfully by Amiah Miller, and another ape who can talk, who thinks his name is Bad Ape because he grew up in a zoo and is voiced hilariously by Steve Zahn. The small group makes their way through snowy mountains until they find the abandoned armory (that was later used as a quarantine facility) to face off against The Colonel. The humans have plenty of high-powered weapons at their disposal here, though, so the odds are against the apes...but hey, all of this is leading to The Planet of the Apes, so we know how it ends, right?

Like the previous two prequels, this movie was filled with action and suspense that kept us glued to the screen (that and those wonderful recliners). Also like its predecessors, this film is also filled with warmth, poignancy, and plenty of humor, which is why I enjoy these movies so much. Ironically, there is plenty of human drama among the primates. Since this is the last prequel, it was also fun drawing the lines between this movie and what we know happens in The Planet of the Apes. For instance, when the group names the little girl Nova, I remembered there was a human female in the original movie named Nova. We both enjoyed this latest addition to the saga very much. Now, we are thinking of watching the 2001 remake of The Planet of the Apes, to come full-circle (and since neither of us has seen the remake yet).

The War of the Planet of the Apes is now playing in theaters. You can purchase tickets ahead of time through Fandango - Know Before You Go! Buy Movie Tickets in Advance. (look for a recliner theater near you!). The first two prequels, Rise of the Planet of the Apes and Dawn of the Planet of the Apes (both highly recommended) are available for streaming through Amazon, starting at $2.99 or on DVD through Netflix or Amazon.

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.

First two links below are for streaming, starting at $2.99 each (regardless of what price the link shows) and the last three links are for inexpensive DVDs:


Sunday, August 06, 2017

Weekly Inspiration: Living As Usual

I recently read The Handmaid's Tale by Margaret Atwood for the first time...finally! (my review is at the link) Both Margaret Atwood and her renowned dystopian novel had been on my must-read list forever, and I was thrilled to get to it. Many people read The Handmaid's Tale in school (I am a bit too old for that; it came out in 1985), and the book has recently enjoyed a resurgence on the best-seller list, thanks in part to a new Hulu TV series based on it (which I heard is amazing) and in part to the current state of affairs in the world (many dystopian classics have been on the best-seller list recently).

I always find inspiration in the books I read, as I mentioned in my recent article The Joy of Reading, published on the ProHealth website (that article also includes tips for those who struggle to read due to cognitive function, plus lots of book recommendations!). I keep a Quote Journal to jot down quotes from books that I relate to or find inspiring or thought-provoking.

This was my favorite quote from The Handmaid's Tale:
"Is that how we lived, then? But we lived as usual. Everyone does, most of the time. Whatever is going on is as usual. Even this is as usual, now.

We lived, as usual, by ignoring. Ignoring isn't the same as ignorance, you have to work at it."
          - from The Handmaid's Tale by Margaret Atwood

This passage struck me for two different reasons. The first half of it speaks to life with chronic illness - as extreme and horrific as it seems at first, we eventually gets used to it, and it becomes our new normal - life as usual. Human beings can get used to anything. In many ways, that helps us to live with chronic illness, to accept our new, restricted lives, and to move forward in a new life now defined by limitations (when you think of it like that, it's not too different from Offred's life in the novel!). The potential downside is that you might forget there are any other options and be so accepting that you stop trying new treatments, reading about new research developments, and recognizing that there is a possibility of a better life ahead for you. I have found that a truly healthy life with chronic illness requires a careful balance between acceptance and hope.

The second way this passage affected me was the way that it was intended: that last line goes right to the heart of both Offred's world and our own. Ignoring the small changes happening in society - the steady chipping away of freedom and tolerance - can eventually lead to huge, horrific changes. Ignorance - not knowing what is going on - is perhaps a valid excuse, but ignoring is something else entirely. It is very easy for each citizen to simply keep living his or her own life - as usual - while ignoring what is happening in the wider world, but that kind of ignoring can have serious consequences. I have been reading a lot of WWII fiction lately, and that is a recurrent theme - how ordinary citizens ignored what was happening to others, until it was too late. It's a brilliant and very thought-provoking sentence that stopped me in my tracks.

Just for fun (there's not a lot of fun in The Handmaid's Tale), I enjoyed another quote because I have a bit of a magazine obsession, and this passage is all about magazines, when Offred sees an old glossy magazine in a world where they no longer exist:
"What was in them was promise. They dealt in transformations; they suggested an endless series of possibilities, extending like reflections in two mirrors set facing one another, stretching on, replica after replica, to the vanishing point. They suggested one adventure after another, one wardrobe after another, one improvement after another, one man after another. They suggested  rejuvenation, pain overcome and transcended endless love. The real promise in them was immortality."
                    - from The Handmaid's Tale by Margaret Atwood

I rarely have time to read magazines at home, but when we go on a road trip (as we often do with our camper), I bring a stack of magazines with me and happily flip through them in the passenger seat. I can't read books in the car because I get car sick, but I can look through magazines (frequently glancing up to look at the horizon!). I love Offred's musings on what makes magazines so enticing. I think part of what I like is just that it feels to lazy and decadent, a treat I rarely have time for. With my time and energy so limited at home, I always feel pressure to be productive when I am not resting - to get as much done as possible in my very restrictive life. But in the car with my magazines, I am free and can sit there doing nothing productive, gazing into other people's lives, with no guilt at all.

Have you read The Handmaid's Tale? Do you find books inspiring and thought-provoking? Most importantly, do you like magazines? (ha ha)

Hope you are enjoying a relaxing weekend!

Friday, August 04, 2017

ME/CFS Symposium Sponsored by Open Medicine Foundation

The Open Medicine Foundation (OMF), the renowned ME/CFS Research Center at Stanford University in California, is hosting a Community Symposium on the Molecular Basis of ME/CFS on Saturday, August 12, 2017. This exciting scientific update for patients and other interested parties will follow a two-day meeting of OMF's huge team of top ME/CFS research scientists, many of them rock stars in the ME/CFS world! You can read details of the Symposium at the link.

Anyone is welcome to take part in the symposium in one of two ways:
1. If you are in California or can travel to the site, you can attend the 1-day symposium in person - there's a button at the bottom of the Symposium page to register.

2. Everyone else can register for the Livestream of the Symposium, so you can watch all the presentations from home (or wherever you are!).
NOTE: The folks at OMF told me that they understand most patients can't watch the Livestream all day, but you can check the agenda at the link to see which speakers you would like to tune in for. They will also be recording the entire day and will either offer a DVD or post the presentations on Youtube (maybe both) after the symposium.

The Symposium is scheduled for next Saturday, August 12, so register today for attending the event or watching it via Livestream! I've already heard from lots of patients (and parents of patients) who are planning to participate.

Tuesday, August 01, 2017

TV Tuesday: Ozark

In need of a new show to watch in the end-of-summer TV lull, my husband and I watched the first episode of Ozark, a new Netflix show, last week and immediately watched the second episode, too! That trend has continued this week - we are totally addicted to this unique, suspenseful, poignant, funny show filled with movie-star talent.

Jason Bateman plays Marty Byrde, a seemingly mild-mannered (some might say dull) financial planner in Chicago. Marty normally lives a quiet life, but in the first episode, that gets blown away in a single day. First, he finds out his wife, played by Laura Linney, has been cheating on him, and then he's called out in the middle of the night to answer to Del, the scary head of a Mexican drug cartel, about missing money. It turns out that Marty and his partner, Bruce, have been laundering money for the cartel, and Bruce has been skimming some off. Marty barely saves his own life and his family's lives by convincing Del that he can continue to launder his money from a new location, Lake of the Ozarks in Missouri (this involves some fast-talking and total BS on Marty's part, after Bruce had given him an Ozarks brochure earlier in the day). Del says that Marty and his family must be out of Chicago and settled down there within 48 hours.

And that's where this family's adventure - and nightmare - begins! Marty rushes home and tells his (cheating) wife, Wendy, everything, the house is on the market by morning, and their poor kids - 15-year old Charlotte and younger brother Jonah - are suddenly ripped from their lives and into a stuffed family van heading to Missouri. They arrive to find a depressed region filled with rednecks that relies heavily on summer tourist money. Marty immediately sets out to find cash-based businesses to launder the drug money through, but no one wants anything to do with this fast-talking stranger, until he finally stumbles onto a run-down old summer resort that has seen better days and whose owner is just desperate enough to buy Marty's story of being an "angel investor."

That's the basic set-up, but every episode of Ozark is just chock-full of twists, turns, and surprises, as the Byrde family begins to settle into their new home and Marty struggles to keep his family not only financially afloat but alive. One of the best aspects of the show is the local family of hicks known as the Langmores, who butt up against the Byrdes right from day one. With her father in prison, nineteen-year old Ruth Langmore, played by the brilliant Julia Garner, heads up the ragtag family. She is far more intelligent than her uncles and cousins and also hardened from growing up in the midst of a criminal family. Before long, Ruth worms her way into Marty's business, though her intentions are far from noble. Throw in a local drug business that sees Marty as a threat, a preacher on the water, a dying man in the Byrde's new basement, and an FBI agent hot on Marty's trail, and you have a gloriously tangled and constantly changing plot!

We have watched seven episodes so far of the 10-episode first season (oh, no - only three more to go!), and we are completely hooked on this original show. The actors are all first-rate and completely inhabit their characters. The plot is constantly moving, with surprises in every episode - sometimes the good guys become the bad guys in an instant or the bad guys are suddenly allies! It's a unique and intriguing setting, with the gorgeous backdrop of Lake of the Ozarks and its wealthy summer tourists against the poverty of the locals. Despite its serious themes and nonstop suspense, the show also has a good sense of humor (often dark humor!) that we love and delves into the emotional lives of its characters, too. We are loving every minute of it (as are many of my friends) and hope there will be a season two! I can't wait for my husband to get home tonight so we can watch another episode.

Ozark is a Netflix original program, so it is available exclusively on Netflix.

Monday, July 31, 2017

Movie Monday: Extortion

We actually saw two movies this weekend! Friday evening, my husband brought home a DVD from Redbox (woohoo - Friday!) - a thriller called Extortion. Neither of us had heard of it before, but it turned out to be a taut, tension-filled thriller about a family vacation gone wrong.

Kevin Riley, played by Eion Bailey, is a doctor and seems like a nice guy. He is taking a break from work (though still making last-minute calls about his patients) and taking his beautiful wife, Julie, played by Bethany Joy Lenz, and their adorable son, Andy, on a vacation to a gorgeous resort on a Caribbean island. They arrive, and the place looks idyllic - aqua-colored water, golden sands, palm trees waving in the breeze. Andy is very excited to try Jet Skis, but they are all booked when Kevin checks, so he decides to rent a boat instead. Those are all booked at the resort, too, but the rental clerk tells Kevin he can also rent a boat from a local down the beach. So, Kevin hands over $200 to a random local man in exchange for a very no-frills looking motor boat, and the family of three set off on their own into the ocean with no means of navigation. What could go wrong?

The answer, of course, is everything. Not only is the family stranded on a deserted island miles off-shore, but they are rescued by a fisherman, played by Barkhad Abdi, who was so good in Captain Phillips as a Somalian pirate. He sees a golden opportunity in this desperate wealthy American family, and as the name of the film suggests, extorts from Kevin a very large sum of money in return for not letting his family die of thirst and exposure. Things go from bad to worse, as they generally do in these movies. Eventually, Constable Haagen, the town's police chief played by Danny Glover, gets involved in the case, but even that doesn't go well for poor Kevin.

This is a classic vacation disaster film: your basic Gilligan's Island 3-hour tour gone wrong times 100. There were lots of holes in the plot (like WHY did this family go out for 3 hours on a boat and bring nothing with them?), but we tried to ignore those and just go along for the ride. And it is an exciting ride - a rollercoaster of ups and downs (mostly downs) and unexpected twists and turns. If you're looking for action and adventure, there is plenty of suspense and tension here to keep you holding your breath until the very last frames. If you can just suspend disbelief a bit, it's a very fast-paced and entertaining movie.

Extortion is now out on DVD and is available on streaming through Amazon (as low as $3.99). It is not available on Netflix.

Sunday, July 30, 2017

Weekly Inspiration: Emotional First Aid

I have been feeling a bit "off" lately - just overwhelmed, too busy, and not taking good care of myself. I know that and yet, I keep pushing. In fact, I'm not feeling very well-qualified to provide inspiration to others right now, so I went looking in search of inspiration this morning on the TED Talks website. I found a TED Talk Playlist about The Importance of Self-Care. It includes lots of great talks, many of which I have previously featured here on my blog, so I encourage you to check it out.

The particular one that caught my eye from that list today, though, was Why We All Need to Practice Emotional First-Aid by Dr. Guy Winch, a psychologist. Check out this brief but inspirational talk:

(P.S. NOTE: On my screen, the above viewer isn't showing up correctly - it is only half a screen. If it isn't working for you, either, this direct link will take you to the talk.)

He describes how our society focuses on physical pain and care but ignores the emotional and psychological side. He mentions several specific emotional states - including loneliness, frustration, lack of self-confidence, and more - that do require care yet are often ignored. And he provides ideas for taking better care of your emotional health, illustrated with examples from his own life. His advice on stopping obsessive thinking - what he calls "rumination" - really hit home for me, and I intend to try it.

I have certainly been neglecting my emotional health! I think another contributing factor that he doesn't mention (probably because it tends to be more of a female thing) is that we women tend to take care of others and ignore ourselves. That is a big problem for me during the summer, with my older sons home from college part-time and very little alone, quiet time for myself.

How about you? Do YOU take care of your psychological health? Do you need some "emotional first-aid"? Share your own thoughts & experiences in the comments below.

Hope you are enjoying your weekend! We are catching up on lots of stuff at home after several weeks of travel, but we did take time out last night for dinner out and a movie (at a new theater with fully reclining seats - I'm in love!)

Saturday, July 29, 2017

New ProHealth Article: The Joy of Reading

My latest article on the ProHealth website is one that allowed me to combine my two blogs and two interests: The Joy of Reading, with tips on enjoying books for those with ME/CFS and other chronic illnesses, including some ideas for those who have difficulty reading due to cognitive problems. You can read the full article at the link (and I will post the full article on the blog in a month).

In addition to this blog, I have also written a book blog for the past 11 years. It is called Book By Book, and you can visit it at the link. I write reviews of books I've enjoyed, as well as reviews of TV and movies. I also post photographs related to nature and travel and some food-related posts as well.

Do you like to read? Are you still able to read with ME/CFS? I hope some of the tips I've offered in the article will help you enjoy books even more (or perhaps for the first time since getting sick!) and also provide some ways to connect with other readers and book lovers to ease the isolation of living with chronic illness.

Tell me what you are reading right now! I love to talk books.

Thursday, July 27, 2017

Donate to ME/CFS Research While You Shop - Special Bonus!

I have often touted iGive here on my blog, as a way to painlessly donate to your favorite ME/CFS charity - for research, patient support, advocacy, or whatever is important to you. And this month ONLY (ending on Monday, July 31), if you use this link to sign up for iGive, they will donate an extra $5 to the Solve ME/CFS Initiative (my choice of cause) to help further ME/CFS research.

That's it! All you have to do is click that link, provide your name, zip code (for U.S.), e-mail, and a password to sign up for iGive, and they will give an extra $5 to ME/CFS research. You don't even have to use iGive to shop yet - the bonus is just for signing up! It's a win-win, and it costs you nothing.

Then, anytime you need to purchase something online, just start at iGive (you can add it to your menu bar or create a button), and a percentage of your purchase will be donated to the cause that YOU choose. There are plenty of ME/CFS, fibro, and Lyme related causes to choose from.

It only takes 2 minutes to earn $5 for ME/CFS research, so sign up now! Remember this special bonus only lasts until July 31. Sign up even if you don't have any shopping to do now (or even if you don't ever do any online shopping!). Just think how much we could add to research funds if everyone who reads this signs up!

NOTE: Although iGive includes hundreds of popular online stores, Amazon runs their own, separate charity donation program called Amazon Smile. Click the link to sign up and choose your charity there, too.

Tuesday, July 25, 2017

TV Tuesday: Master of None

A year or two ago, I watched a couple of episodes of Master of None, a Netflix comedy, enjoyed it, and then got caught up in other shows and kind of forgot about it. I recently came back to it and ended up watching all of the first season episodes in quick succession and moving onto season two. It's a smart, funny comedy that is different from most.

Aziz Ansari, an actor and comedian who was on Parks & Recreation, plays a 30-year old Indian American actor (basically himself) living in New York. When he's not meeting with his agent, going on auditions, and taking bit parts in ads and movies, he hangs out with his friends: Arnold, a very tall guy played by Eric Wareheim; Brian, an Asian-American played by Kelvin Yu; and Denise, a black lesbian played by Lena Waithe. Think of of Master of None as a more diverse version of Seinfeld. Like that famed sitcom, there is plenty of amusing banter among friends and funny discussions about trivial things in their lives.

What really sets Master of None apart from other sitcoms, though, is its cleverness and how it delves into important issues in our world that are seldom talked about openly - all while making you laugh. In season one, episode four deals with the racism Dev encounters every day in his acting career, as someone like him of Indian descent (even though he is 100% American) is only offered parts as a convenience store owner, an IT guy, or "the Indian friend." He and his friends sit in a bar talking about how many black people are allowed on a show before it is considered "a black show." It's achingly honest but also hilarious. In episode seven, Dev and the other males have an eye-opening discussion with the women at their table about how they are treated in everyday life, and how their experiences are completely different than those of the males.

I love the honesty and wit of this wonderful show. After watching a few episodes, I was hooked and just wanted to watch all of them! I just finished watching the first episode of season 2 today, which is a unique show, filmed in black and white, chronicling Dev's adventures in Italy, with the feel of an old-time movie. Ansari is warm and endearing as Dev, and the supporting cast is all great, too. Aziz's real-life parents play his parents on the show! Although it is a comedy, it is also a moving drama, following Dev and his friends through relationship ups and downs, career mishaps, and family challenges, with plenty of laughs along the way.

Master of None is a Netflix original program, so it is available for streaming exclusively on Netflix. Seasons 1 and 2 are currently available there. Season 1 is also available on DVD (and season 2 will follow). I hope there will be a season 3!

Thursday, July 20, 2017

Our Story Featured on Facing Forward

I wrote a guest post for the wonderful blog, From This Point. Forward., which is hosted by Mariah. Her blog is all about her life with Rheumatoid Arthritis, as the mother of two adorable and active boys. Her posts cover research and other news about RA (an autoimmune disease), as well as inspiration and tips for living with any kind of chronic illness. Check it out!

Mariah hosts a weekly feature, Facing Forward, where a guest blogger answers questions about his or life with chronic illness. I was honored to be a part of this wonderful feature. You can read my full post here:

In it, I discuss treatments that have worked for my sons and I, challenges we deal with, tips for managing each day, and how to stay positive and keep moving forward.

If you want more details on the treatments that have most helped us, check out my own blog post on Effective Treatments for ME/CFS.

Thanks to Mariah for this wonderful opportunity to be featured on her blog. It's a great blog - hope you enjoy it!

Tuesday, July 18, 2017

TV Tuesday: Sense8

Our 22-year old son was home for a while when the college semester ended, and we had finished up our spring TV shows together (Colony and Travelers) and were waiting for our summer show (Orphan Black!!) to start, so we were searching for something new that he, my husband, and I could all enjoy together. We settled on Sense8, a Netflix show, and quickly got hooked on its intriguing supernatural premise.

The first episode or two of Sense8 is a bit confusing (but stick with it) because a lot of different characters are introduced and there is no connection between them at first. Sun, played by Doona Bae, is a young professional woman in South Korea whose father doesn't recognize her accomplishments because she is female. Jamie Clayton plays Nomi, a trans woman living happily in San Francisco with her partner when things go terribly wrong on Pride Day and she ends up in the hospital. Kala, played by Tina Desai, is a beautiful Indian woman engaged to a very eligible bachelor who she is not certain she is in love with. Riley Blue, played by Tuppence Middleton, is a blue-haired DJ in London who may be in too deep with her drug dealing boyfriend. Max Riemelt plays Wolgang, a young German man struggling with his background as the son of a criminal. Miguel Angel Silvestre plays Lito, a handsome Brazilian actor who is a sex symbol on screen but harbors his own secret in his private life. Will, played by Brian J. Smith, is a practical-minded cop in Chicago who can't make sense of what he's just seen. Finally, Capheus, played by Aml Ameen, is a matatu (van) driver in Nairobi, a jovial man known as Van Damme for his obsession with the actor (and his colorful van's motif) whose mother is seriously ill.

Whew - see what I mean about confusing at first? But within a couple of episodes, you get to know each of these characters better. All eight of them see the same vision at the start of episode one, of a woman, played by Darryl Hannah, in a churchyard. Gradually, after that, they each begin to see the world through one of the other eight's eyes, seemingly transporting through time and space to a world very different from their own. In this way, they begin to become aware of each other, especially when one of them is in trouble or in danger.

We have watched 4 episodes so far, and it is more and more engrossing. Exactly what gifts and powers the eight disparate people possess is still somewhat of a mystery - to the viewers and to the eight "sensates" themselves - but we want to see more to find out what unfolds. Single sentence summaries of the show indicate that there are powerful people who want to stop these eight, but we haven't gotten to that point yet in the plot.

The multi-cultural cast are all very good, and you quickly form a bond with all eight sensates, seeing their challenges and flaws as well as their talents. The action moves around from one character (and one place) to another, but quite soon, they begin interacting with each other, as the story becomes more intricate. I hope I haven't made it sound too complicated because by the end of the second episode, you have a good idea who each character is and how he or she lives. The show also has a wonderful soundtrack (see Amazon link below), and after episode 4, you will be singing "What's Up" for weeks (we were!).

Sense8 is a Netflix original program, so it is available exclusively on Netflix. I see that the first season has 12 episodes, and there are already two seasons on Netflix, so I can't wait to see what happens next! Note that Netflix just announced last month that the show has been cancelled after its second season, with possibly a single 3rd season episode finale in 2018 to wrap things up.

Monday, July 17, 2017

Movie Monday: The Dressmaker

Last week, I reviewed a movie I watched while my husband was away recently: Me Before You, based on the best-selling novel. That same week, I watched another movie that is a book adaptation: The Dressmaker, starring Kate Winslet.

Kate plays Tilly Dunnage, a woman in the 1950's returning for the first time in decades to the small, rural town in Australia where she grew up. It's a tiny, insular town where everyone knows everyone else's business. When Tilly arrives, she finds her mother, Molly (played by Judy Davis) in terrible shape: physically frail, barely cognizant and living in squalor. Tilly, always beautifully dressed and in full make-up, sets to work clearing out and cleaning up the decrepit house. It immediately becomes obvious that Tilly is not well-liked in the town, as townspeople gossip about her return and some dark secret from the past about why she left.

Tilly ignores the gossip and not only takes care of her mother but sets up shop as a dressmaker. She worked in fashion houses in Paris and Milan, so she brings haute couture to the Outback and transforms the plain women of the town, one by one. She is extremely talented and is soon a much-revered dressmaker, though the townspeople still gossip. Details of Tilly's childhood, the reason why she left, and the reason behind her cool reception in town gradually become clear. Tilly really has only one ally in town besides her mother: the handsome Teddy (played by Liam Hemsworth), whose family are also outcasts in town.

Tilly and Teddy become closer, as details of Tilly's and the town's history are slowly revealed, and the women of the town become more and more glamorous. Tilly is not one to forgive and forget, though, and as she remembers how various townspeople wronged her as a child, she plots revenge against each of them.

The tone of this movie is much different than I expected. Rather than a straightforward drama, there is actually a good bit of dark humor and satire here. Yes, there is also tragedy and sorrow, but often there is a tongue-in-cheek aspect to the story. Colors in the film are super-bright and vibrant (especially after Tilly dresses the town's women in gorgeous fabrics) in contrast to the dull sameness of the surrounding countryside and decrepit town. The seemingly sweet story of the transformation of the town's women is underlaid with the dark backstory and Tilly's behind-the-scenes scheming. I was pleasantly surprised by the dark humor and enjoyed the film overall. Kate Winslet is wonderful in it, as are her supporting cast, including Hugo Weaving as the flamboyant, cross-dressing town police officer, who is thrilled with Tilly's fashion sense.

The Dressmaker is currently available on DVD and is available for streaming free for Amazon Prime members (or $3.99 to rent or $12.99 to purchase for non-Prime members). It is only available on DVD through Netflix.


Tuesday, July 11, 2017

TV Tuesday: Fleabag

With my husband and sons out of town two weeks ago, I had a quiet five days to myself at home, so I wanted to indulge in some "me time," enjoying something new on TV. I discovered Fleabag, a short British Amazon series. It looked like a funny, sexy comedy - perhaps along the lines of Chewing Gum (which I loved) - but it turned out to also have plenty of depth to it.

Fleabag is adapted from an award-winning play, and its lead actress, Phoebe Waller-Bridge, starred in and wrote both the play and the TV series. She plays an unnamed single woman, living in London, looking for love, and caught up in the crises of her daily life. Her sister, Claire, is seemingly perfect, married to a handsome American, thin and pretty, and with a life that seems perfectly put together. Though they don't have a lot in common, the two sisters do sometimes come together, in grieving for their mother, being disgusted by their inappropriately blunt stepmother (who was/is godmother to the narrator), and rolling their eyes about their inept father.

The narrator, who I guess can be referred to as Fleabag, also has an on-again, off-again relationship with a boring guy named Harry and a string of hilarious encounters (during the off periods) with other guys, including a man she meets on the bus who has teeth like a rabbit and a late-night booty call in the first episode who wants anal sex. Shortly into the first season, we also find out that Fleabag recently lost her best friend and business partner in an accident, which suddenly puts everything else into perspective and adds a significant layer of emotional depth.

The first season is only six half-hour episodes long (as is more the norm in the UK), but there is a lot packed into those three hours of television. Fleabag often looks directly into the camera to share an aside with the audience (or sometimes, just a look that says it all), again reminding me of Chewing Gum. The overall result here is a fascinating main character with interesting supporting characters, moments of laugh-out-loud hilarity, and moments of quiet introspection, too. It's the life of a modern woman, with all of its complexities and challenges (and more laughs than in a typical life!). This mix of humor and real-life emotion reminds me very much of another British Amazon show that my husband and I enjoy, Catastrophe. Just watching the trailer (below) reminded me again of how much I enjoyed this funny, moving, outrageous show - and it's perfect for binging.

The 6 episodes of season 1 are available on Amazon Prime. I was very excited to see that a season 2 is planned for 2018 - I can't wait!

Monday, July 10, 2017

Movie Monday: Me Before You

My husband was away for a week recently, and my sons were on vacation, so I had five days all to myself! A couple of evenings, I watched movies - choosing girly movies that the rest of my male household would never watch with me.  On my first evening alone, I chose Me Before You, a movie adaptation of a novel by JoJo Moyes I have wanted to read for years.

Me Before You is a sweet romance (that's why my husband and sons wouldn't be interested in it!). Sam Claflin plays ruggedly handsome, wealthy Will. At the start of the story, Will is at the top of his game - happy, successful, and engaged to a beautiful woman. On the other side of town, Lou, played by the adorable Emilia Clarke, lives in her childhood bedroom in her parents' house, to help them out. When she loses her job at the local cafe, the whole family is worried about the loss of her income.

Lou finally finds a new job at the huge castle in town (this is England). The wealthy Traynors are looking for a companion to help with their son, who was paralyzed in an accident. You guessed it - that scruffy-looking guy in the wheelchair is Will, but now he is sullen and depressed about the turn his life has taken. He has a muscular physical therapist/caregiver to help with the big stuff, but Will's parents want Lou to spend time with their son, to keep him company and get him re-engaged with life.

The plot from that point on is pretty predictable, but it's still an emotional movie and surprisingly fun. Much of the fun comes from Lou herself, who dresses in bright primary colors, wild patterns, and often wears her hair in braids or little pigtails. She is full of life, always smiling, and a good foil to Will's dark moods. She comes up with a plan to try to show Will that his life can still be full of joy and worthwhile.

As I said, the plotline isn't terribly surprising, but the story is well-executed, warm, and fun. The two main actors are both charismatic and engaging and pull you into their story. I recall hearing some complaints from fans of the novel when the movie first came out, but I can't speak to that since I didn't read the book. I did have one problem with the movie - its ending. I don't want to give away any spoilers, but suffice to say here that complaints from disabled people about the movie's ending and its message are definitely valid. Generally, though, up until that point, I enjoyed it. It made me smile and laugh and - yes, I cried, too. It was a mostly entertaining evening, though I would have preferred a different ending.

Me Before You is currently available on DVD and streaming on Amazon (free for Prime members; others can rent it for $2.99).


Friday, July 07, 2017

LDN 2017 Conference Coming in September

I have written often here on my blog about low-dose naltrexone (LDN), a medication that is used in tiny doses to help normalize the immune system in a wide range of medical conditions and diseases, including ME/CFS, fibromyalgia, and Lyme disease. My son and I have both taken LDN for 10 years now, and it has helped us a lot. I felt better - less fatigue, more energy, more alert, improved mental clarity - from the very first morning after I took my first bedtime dose. You can read all about LDN, what it is, how it works, and our experiences with it in this post.

There have been hundreds of research studies on the use of LDN over the past 20+ years (unfortunately, as you might expect from our lack of research funds, none yet on ME/CFS), including some very positive studies on using LDN for fibromyalgia. You can see a long list of LDN research studies, conducted from 1991 through 2013.

So, the reason for this new post is that the LDN Research Trust is hosting its annual LDN Conference in Portland, Oregon, on September 21-24. In addition to attending the conference (which probably few of us can manage), they are providing recorded presentations with pdf downloaded documents via a Livestream option so that anyone, anywhere can watch the presentations of interest to them (at any time - they don't have to be watched live). You can even get Continuing Education Credits from some of the Livestream options.

Some of the presentations included are on the topics of using LDN in:
  • Thyroid disease
  • For children
  • Lyme disease and other tick infections (multiple presentations)
  • Autism Spectrum Disorder (there has been extensive research on LDN for autism in kids)
  • Inflammatory Bowel Disease
  • Celiac Disease
  • Cancer
  • POTS (a type of Orthostatic Intolerance which is an integral part of ME/CFS)
  • Bipolar Disorder
  • Hashimoto's disease
  • Fibromyalgia
  • and more!
For more information on the conference, the Livestream options, and the presentations and speakers, click on the link below:

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

Sunday, July 02, 2017

New ME/CFS Pediatric Primer Published!

Kids & teens with ME/CFS speak up in DC in 2011
Get your horns and confetti ready - it's time to celebrate! Dr. Peter Rowe, renowned pediatric ME/CFS and OI expert at Johns Hopkins, has teamed up with his colleagues around the world to write comprehensive guidelines on the diagnosis and treatment of ME/CFS in children and teens. This ME/CFS Pediatric Primer has been published in a mainstream medical journal, Frontiers in Pediatrics, where it will be seen by doctors all over the world. This is a HUGE step forward for all of us and should go a long way toward educating both pediatricians and primary care doctors about the care of kids with ME/CFS (and adult patients, too).

The full title of the paper is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer and you can read its full text and share it with your doctor(s) at that link.

The primer itself describes its purpose:
"While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents."

Wonderful! It is a long document, with plenty of detail on both diagnosis and treatment. It explains that few studies have been done on children with ME/CFS but that the guidance in the document is based on what research there is, plus the extensive clinical experience of the authors. It mentions the presence of orthostatic intolerance right in the introduction! It also emphasizes several times that ME/CFS is a physical illness and not a psychological condition and explains over and over that some children and teens may be homebound, in a wheelchair, or even bedridden from ME/CFS. And, of course, it explains in detail WHY you can't "cure" ME/CFS with exercise (GET) or cognitive behavioral therapy (CBT) and why it may be harmful to patients to try.

The primer includes sections on:
  • Etiology and Pathophysiology (that is, how the disease starts, what keeps it going, and its effects on various systems in the body)
  • Adolescent Development
  • Clinical Diagnosis (which includes a very helpful worksheet for doctors to aid in recognizing ME/CFS in kids)
  • Management/Treatment
  • Co-Morbid Conditions (including OI, EDS, food intolerances & allergies & more)
  • Areas of Special Clinical Concern (includes management of severely affected patients)
  • The School System
  • Appendices A through G (which include Fact Sheets for schools, sample doctor's note for school, a more complete discussion of OI, and more)
Overall, it is an excellent document and will provide far better care of pediatric patients than what is currently available.

However, I would have liked to see mention of or more detail on the following treatments to further help young patients (links provided explain more, including how these treatments have helped my son and I):
  • Treating sleep dysfunction - There is a section on sleep dysfunction but no mention of the typical mechanism behind it in ME/CFS (light sleep, mainly in Stages 1 & 2 without enough deep Stage 3 & 4 sleep caused by endocrine dysfunction that causes disruption in normal hormones that provide deep, refreshing sleep). There is a small table listing medications that might help in treating sleep dysfunction, and it does include tricyclic antidrepressants or TCAs (when used in small doses at bedtime, these lose their antidepressant properties but help to increase the hormones necessary for normal, deep sleep). However, the table lists amitriptyline, which many patients including myself find too sedating, and makes no mention of trazodone and nortriptyline, the two milder TCAs that are more commonly used to to effectively treat sleep dysfunction in ME/CFS, including in kids and teens. These two meds have worked beautifully for my son and I for over 12 years and for many other young patients.
  • Treating immune system dysfunction - There is a brief section on this critical topic, but the only treatment mentioned is IVIG, which is very expensive and sometimes difficult for the patient and not always approved by insurance. There is no mention at all of low-dose naltrexone (which I know Dr. Rowe prescribes for some patients) or inosine, two very safe and very cheap approaches to helping to normalize or balance the immune system that have helped my son and I immensely. 
  • Looking for and treating underlying infections - There is a brief mention that antivirals are used sometimes to treat adult ME/CFS patients and that there have been no studies on the use of antivirals for children. The section on co-morbid conditions also mentions the possibility of infections, like Lyme disease. Often, though, underlying infections are a critical component of ME/CFS and diagnosing and treating them can bring dramatic improvements. In people with ME/CFS, the immune system dysfunction that is part of our disease can cause old, dormant infections (that are harmless to most people) to reactivate. The primer does explain that mono (caused by EBV) is a common trigger for ME/CFS in kids and teens, but there is no mention of the fact that treating that initial case of mono with antivirals within the first few years of ME/CFS can bring improvement or even full recovery. And many people with ME/CFS discover that they have tick-borne infections, like Lyme disease, often many years after fruitless treatment of their ME/CFS (my son ended up having 3 tick-borne infections, in addition to his ME/CFS, that we missed for over three years). Experience has shown that searching for and treating these kinds of underlying infections can bring dramatic improvement in patients and return to a more normal life or even full recovery.
  • The prevalence of food intolerances - Dr. Rowe himself authored a study that found that a full 30% of his young ME/CFS patients in the study had developed an intolerance to dairy, so I was surprised that this statistic - backed up by a study - was not included in the primer. There is some vague mention of food intolerances in the section on co-morbid conditions and the section on GI symptoms, but the section on Dietary Management doesn't recommend eliminating common allergic foods on a trial basis. Eliminating diary almost completely eliminated GI symptoms for my son and I. From what is written here, I can imagine kids being put through all kinds of invasive testing for co-morbid conditions when they really just need to eliminate dairy or gluten or other common allergens from their diet.
  • Treating methylation issues - Oddly, one of the references at the end of the primer is to a study on the presence of genetic methylation problems in ME/CFS patients, but there is no mention in the body of the document of methylation at all. There are a few mentions of B12 supplementation (B12 is critical to the methylation process), but no mention of folate or other aspects of methylation. Treating methylation has helped my son and I very much, and I know this approach has helped many other young patients in our Parents group on Facebook.
So, I am a little disappointed that the treatment section either doesn't mention or doesn't include details of all of these treatments that have been crucial in improving the overall condition of my son (and myself) as well as countless other pediatric patients (I lead an online group with over 600 parents from all over the globe, so I hear about what works and what doesn't for their kids). I do understand that the doctors who wrote this document were trying to base their recommendations on studies and were focused on doing no harm, but there aren't very many studies on treatments for ME/CFS (pediatric or adult), and they stated up front that their advice was based in part on clinical experience - and I know patients of Dr. Rowe's that have benefited from everything I have listed here.

All that said, my criticisms are minor. This document provides well thought-out guidelines for any doctor treating pediatric ME/CFS patients and a good starting point. Just the inclusion and explanation of Orthostatic Intolerance alone will provide very helpful information to doctors treating kids with ME/CFS, as treating OI often brings dramatic improvements, especially in kids.

This primer is certainly a giant leap forward from where we are today, with most doctors not even realizing that ME/CFS is a serious disease that can completely incapacitate kids and thinking there are no effective treatments (or worse, thinking that forced exercise is the way to treat ME/CFS).

A big thank you to Dr. Rowe and his team for once again blazing trails for pediatric ME/CFS!