Tuesday, March 13, 2018

Top ME/CFS Experts Cooperate on Treatment Guidelines

The good news in ME/CFS just keeps coming! This time, it's not in the realm of research, but the all-important topic of treatment. Many patients know that the only way to get complete and comprehensive medical treatments for ME/CFS is to see one of the U.S.'s few top experts. Now, those experts are coming together to document their expertise into treatment guidelines for primary care physicians and family doctors. Hurray!

This excellent article published on Medscape by medical journalist Miriam E. Tucker summarizes the first meeting of this esteemed group, a summit organized by Lucinda Bateman (one of those few top experts). This meeting was just the first step, but information from the group is already useful for doctors unfamiliar with ME/CFS and how to treat it.

From Dr. Bateman's own website, this is a summary of the meeting itself and which doctors attended - it's a Who's Who of top ME/CFS clinicians.

You don't have to wait for the final guidelines to be produced to begin to take action to educate your own doctor(s) and find effective treatments. Print the Medscape article and share it with your doctor - that alone will verify the severity and scientific underpinnings of our disease and begin to give them some ideas of what tests to run and the kinds of treatments that might be helpful to patients.

Here are some other recent documents that I've shared here on the blog previously that would also be great for printing and sharing with your doctor:
And if your doctor isn't interested in learning more about ME/CFS and won't read an article about it? Then, you need a new doctor. You don't necessarily need an expert - just someone who is open-minded and willing to listen and learn.

Monday, March 12, 2018

Movie Monday: The Big Sick

I'm a bit behind in my movie reviews, but it's turned out to be timely, with the Oscars just last week. Back on New Year's Eve, my husband and I watched The Big Sick, an original, warm, and funny romcom that is based on a true story.

As the movie opens, Kumail, played by Kumail Nanjiani, is doing his stand-up comedy routine and hanging out with his other comic friends. After the show, a pretty blond grad student named Emily, played by Zoe Kazan, talks to Kumail at the bar and tells him how much she enjoyed his set. The two start dating, and for a while, it's a typical romcom story, with two attractive main characters who are gradually falling in love. But Kumail is originally from Pakistan, and his parents - though very nice - are very traditional and expect him to marry a Pakistani girl. In fact, he has to sit through yet another set-up every Sunday, as his mother invites one eligible Pakistani girl after another to meet him at their weekly family dinner.

Eventually, Emily gets angry that Kumail won't introduce her to his family, and the two break up. Soon after, though, with both still upset over the break-up, Emily gets very sick and is admitted to the hospital, while doctors try to figure out what is wrong with her as she rapidly deteriorates. Suddenly, Kumail finds himself at Emily's bedside, facing down her parents, played by Holly Hunter and Ray Ramano, for the first time, who know that he's the guy who broke their daughter's heart - awkward!

The Big Sick won 16 different awards - many for "Best Movie" or similar - but was passed over for an Oscar last week, much to fans' disappointment. It was nominated for Best Original Screenplay, a recognition of which it was worthy. The backstory adds to its attraction, as Kumail and the real Emily (V. Gordon) wrote the screenplay based on their own real-life love story. As you can imagine, with a stand-up comic writing the script, it's a very funny movie, but it is also very warm and moving, too. Kumail and Zoe are both very good in their roles, as are the supporting cast and especially Kumail's family. As always, Hunter and Romano are fabulous. We both enjoyed it very much.

An Amazon original movie, The Big Sick is available free streaming on Amazon Prime or on DVD.

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.


Sunday, March 11, 2018

URGENT: Tell Congress To Increase Funding for ME/CFS!

There is a big decision being made in Congress in the US this week over additional discretionary medical funding, outside of the NIH budget. Now is our chance to be heard and let our representatives know that ME/CFS is worthy of more research funding!

Solve ME/CFS Initiative has made it easy - the simple form at this link only takes a few minutes to complete and sends these important messages to your representatives in Congress. It really is very quick and easy - a great opportunity for you to make a difference, even if you are bedridden!

But hurry! The deadline is this week (I think Tuesday 3/13), so follow the link to fill out the form right now.

Let your voices be heard!

Tuesday, March 06, 2018

TV Tuesday: 11/22/63

I couldn't wait to tell you about 11/22/63 - we LOVED this show!! Both my husband and I loved reading the novel by Stephen King, about a man who time travels back to 1960 in an effort to stop JFK's assassination (yes, King write more than just horror). We couldn't wait to watch the TV miniseries...but it was on Hulu, which we don't have. So, I gave my husband the DVDs for Christmas, and we took advantage of the hiatus of our favorite shows during the Olympics to watch it. Wow. This immersive, suspenseful historical drama was well worth waiting for. It's definitely one of my favorite TV shows.

James Franco plays Jake Epping, a high school English teacher going through a heart-rending divorce in a small town in Maine (naturally - it's a Stephen King story). He eats every day at his favorite local diner, marvels at the cheap burgers, and becomes friendly with the owner, Al, played by Chris Cooper. One day, visibly unwell, Al asks him to stay after he closes up for the night and shares a terrible secret with him: Al is dying of cancer and needs Jake to finish an uncompleted mission for him. He shows Jake a weird time fissure in the back of his closet, where Jake sees for himself that walking through it brings him to that same spot in 1960. Al has devoted the past years, since he discovered this time rift, to figuring out how to stop JFK's assassination. He's done a lot of research and figures out that things in the modern world started going downhill after that event. He wants Jake to complete his mission for him - go back to 1960, travel to Texas, find out if Lee Harvey Oswald was acting alone in killing JFK, and if so, stop him. After some convincing and Al's death, Jake takes on the mission, with a stop-off in 1960 Kentucky to fix another more personal horrific event from the past first.

We were completely engrossed in this mini-series and binged it over a week's time. It's a movie-quality show that perfectly recreates the 1960's, down to every last detail (in fact, a "making of" extra on the DVD explains how they did some of that). The plot - tracking down Oswald, watching him, and trying to figure out if he was acting alone - is riveting and suspenseful, but the scenes of ordinary life are just as engaging. Since he has to stay in the 1960's for three years, Jake has to establish an identity and a cover, so he finds a job teaching English in a small-town Texas high school, where he meets a lovely school librarian named Sadie, played by Sarah Gadon, who significantly complicates his mission. The entire show is so immersive and the writing and acting so good that you forget you are watching James Franco and come to see him as Jake. I also found myself constantly thinking about the show in between episodes and for days after we finished it. I always find time travel plots fascinating for that reason - the convoluted cause-and-effect - plus King's assertion (as with many time travel stories before it) that time resists being changed. It all makes for a gripping, engrossing TV mini series that is well worth your time.

King's novel was outstanding, and this TV series brings it to life perfectly. If you are a King fan, watch for small winks to his other stories interspersed throughout the show!
11/22/63 is a Hulu original, so it is available for streaming free on Hulu, but it is also available on DVD, for purchase or through your local library system. You can also stream it on Amazon for $1.99 an episode or $14.99 for the entire season.


Monday, March 05, 2018

Movie Monday: Red Sparrow

My husband and I had a nice treat this weekend - dinner out and a movie at our local recliner theater. Our son had given us a Fandango gift card for Christmas, so we saw bought 2 tickets for the recliner theater on a Saturday night...all for $1! We'd been waiting for Red Sparrow to come out (it was just released on Friday), and though we were disappointed to hear some critical reviews, we still wanted to see it. We're glad we did! We both enjoyed this exciting Russian spy thriller starring Jennifer Lawrence.

Lawrence plays Dominika, the star of the Russian ballet whose career is cut short by a horrible accident. As a prima ballerina, Dominika and her mother were supported by the state, which paid for their apartment and all of her mother's extensive medical bills. When Dominika's career ends, her (evil) uncle Ivan tells her that the state will continue to support her and her mother if she does something for them. She is supposed to just change out a man's cell phone for another one, but things go horribly wrong and soon Dominika finds herself facing a far worse choice: die for what she knows or join the ranks of Russian spies. With no other options, she joins the Sparrow program, a humiliating and intense program the Russians use to train young spies to use their bodies to manipulate people. After her training, she is assigned to get close to an American CIA agent named Nate Nash, played by Joel Edgerton, in order to find out who is the CIA's mole in the Russian government.

That's just the set-up of this complicated, twisty plot. Filled with fake-outs, double-crosses, and other staples of the spy genre, this gripping thriller kept us glued to the screen, wondering if there was any possible way for Dominika to come out of this alive and intact. On the downside, there is a LOT of violence in this movie, including sexual violence and two horrific scenes of torture. I had my eyes covered several times! The plot was gripping, though, and the acting was good. True, Jennifer Lawrence is clearly not Russian, but let's face it - in real life, Russians don't talk to each other in Russian-accented English, either - you just have to suspend disbelief a bit and go along for the ride. And what a ride it is! The plot twists keep you guessing until the last moments of the film, with plenty of action, intrigue, and suspense along the way.

Red Sparrow was just released March 2, 2018, and is out in theaters now. Check Fandango for showtimes and theaters near you (see if YOU have recliner theaters nearby!) or to buy tickets. It is planned for release on both DVD (pre-order now) and streaming through Amazon in June 2018.

Friday, March 02, 2018

Flashback Friday: 16 Years Ago Today...

Happy Illiversary to me!
16 years ago today, my life forever split into Before and After.

16 years ago today, my life changed dramatically, though I had no idea at the time.

16 years ago today, I woke up feeling awful, with a severe sore throat, exhausted, and achy all over. I thought I had a bad virus, but it never went away.

16 years ago today, I forced myself out of bed because we'd planned a day trip to Baltimore with our young sons, and I didn't want to ruin the special treat. I still vividly remember barely being able to hold myself up at the National Aquarium, clinging to the handrails, and thinking that it was the worst sore throat I'd ever had and so different from other sore throats.

(For more details on the start of my illness and those early years, read Our Story)

Another year has gone by of my post-ME/CFS life. Today makes 16 years, but the anniversaries don't really bother me much anymore. Someone asked me yesterday when I got sick, and I said, "About 16 years ago....oh! exactly 16 years ago tomorrow!" That date which once loomed so horribly over me each year now feels like any other day, but the anniversaries used to be tougher.

I was feeling bittersweet on my 5th Illiversary, doing a bit better overall with treatment, but recalling that researchers and doctors often cite 5 years as a turning point (that few people completely recover after being ill longer than 5 years).

By year 8, I was feeling less contemplative. By then, having ME/CFS was just a part of my new normal.

When I hit 10 years of illness, I barely noticed the anniversary date, even though it was a milestone year. I was focused on my sick kids by that point, and my own illness had become the norm for me by then.

Baltimore 2016 - in a museum!
My 14th Illiversary was a triumph of sorts, as I returned to Baltimore with my husband, this time able to enjoy the city, including plenty of walking (though I still needed my afternoon nap!). It was my first time ever visiting an art museum, and the first time since getting sick that I could manage any kind of museum.

I'm sure I would feel differently about my ME/CFS anniversary if I was still as sick as I was in those first few years, but over the past 16 years, I have found many effective treatments that have greatly improved my symptoms (and my life), allowing me to be much more active and making crashes rare. I still need my daily nap and have some limitations, but I am quite happy with my life these days. I met a friend for lunch today, picked up my car from the shop, and spent most of the day writing, so that's a good day for me. Ten years ago, I wasn't even been able to sit up to write - I had to lie down on the couch with my laptop propped up (beta blockers are to thank for that improvement).

So, Happy Illiversary to me!

Tuesday, February 27, 2018

TV Tuesday: The Marvelous Mrs. Maisel

Suddenly, I am overflowing with new-to-me TV shows to tell you about! The Olympics gave us a chance to try some new shows on streaming and DVD, and wow, we found some great ones! First, my new favorite lunchtime girl-show, The Marvelous Mrs. Maisel, an Amazon original that I am loving.

Rachel Brosnahan stars as the title character, Miriam "Midge" Maisel, in 1950's NYC. In the first episode, we see her fairytale romance and perfect Upper West Side life shattered when her husband Joel, played by Michael Zegen, suddenly leaves her for his secretary. Joel has been trying - unsuccessfully - to do stand-up comedy at night. He works in business, but comedy is his dream, which is destroyed when Midge finds out he's been stealing his material. Midge has been the perfect 50's housewife, fully supporting him by coming to all his shows and taking copious notes on what works and what doesn't (in addition to caring for their two young children and the house). Stunned by Joel's departure, Midge stumbles drunk into the dive bar where he often does stand-up and ends up on stage in her nightgown. She is actually very funny and the crowd loves her - but she also gets hauled off by the police and arrested. It's a rough start, but Midge is hooked. She realizes that comedy is actually her dream...and that she might even be good at it. The manager of the bar, Susie Myerson (played by Alex Borstein), is won over by Midge's raw talent, and the two pair up, with rough-talking, masculine-dressing Susie acting as Midge's new manager.

That's the basic plotline of the show, as Midge tries to both put her life back together and launch a stand-up career, but this show is so much more than its original plot! The cast are all outstanding and hilarious, with Tony Shalhoub as Midge's straight-laced father, and Marin Hinkle as her controlling  mother, to name just a few. The scenery, costumes, and atmosphere are also amazing - a brightly-colored, vibrant recreation of 1950's NY. It makes for a visually stunning show that is a lot of fun to watch. Some scenes are almost musical-like, without the singing, with a classic 50's song playing in the background as Midge struts down the street or takes on her new job in a colorful department store (you can check out the music from the show here). Midge is likable, and I find myself rooting for her to bust those 1950's social norms and make it as a comedian, so the show has warmth, but it is also very, very funny. All in all, The Marvelous Mrs. Maisel is an entertaining visual spectacle that will make you laugh out loud.

The Marvelous Mrs. Maisel is an Amazon original show, so it is available streaming exclusively on Amazon. And it has been approved for a second season, so there is more Midge to come!

Here is a trailer of the show:

Sunday, February 25, 2018

Weekly Inspiration: Emotional Agility

This morning, Susan David's TED Talk on The Gift and Power of Emotional Courage caught my eye. A psychologist from South Africa, she shares the story of her father's death and how she wasn't able to grieve openly until a teacher encouraged her to write about her feelings. Grief is something we all deal with in living with chronic illness, and David makes some excellent and thought-provoking points in this brief talk:

She talks about the need to recognize and feel your emotions - that's the only way to move forward. When she mentioned the pressures of our society to "stay positive," it reminded me of the early years of my illness, when my family was focused on "cheering me up" and "getting my mind off my illness" when what I really needed was simple recognition and acceptance of what I was going through.

We all need to grieve our losses. I write often about finding joy, being grateful, and taking positive steps, but this doesn't mean ignoring the darker feelings - you have to allow yourself to feel anger, sadness, resentment, and other difficult emotions in order to move past them.

Incidentally, today is my own father's birthday. He died 2 years ago of melanoma. I miss him every single day, but he's really been on my mind even more this week, when I would normally be picking out books I think he'd like or choosing a new golf course for him to try.

There are all kinds of grief - plus other difficult emotions, too. David talks here about emotional agility - being able to really feel all of our emotions, positive ones and darker ones - and it's a good lesson to remember.

Have you allowed yourself to grieve what you have lost? Have you been able to truly feel those emotions and move forward?

Thursday, February 22, 2018

In the News: Article on ME/CFS for Family Doctors Published

The winter 2018 issue of Family Doctor: A Journal of the New York State Academy of Family Physicians (volume 6, number 3) includes an article on ME/CFS called, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: What Every Family Physician Needs to Know." The article is co-authored by Dr. Susan Levine (a top ME/CFS expert), Mary Dimmock (a well-known ME/CFS activist whose son has the disease), and Terri L. Wilder (a patient and volunteer with #MEAction). You can read the full article at the link - it's a few pages long and begins on page 23.

The article provides a thorough overview of ME/CFS, including its history, the IOM effort to establish diagnostic criteria, demographics, diagnosis, and treatment. It is, of course, written specifically for practicing family doctors, so it provides facts to dispel the most common myths that doctors might have heard about ME/CFS in the past. The section on treatment is brief, but the article lays the groundwork for doctors who see patients to at least begin to recognize ME/CFS, understand how severe it can be, and begin to treat. As we all know, just getting doctors to recognize that ME/CFS is real, is debilitating, and that real medical treatments are available would be a huge step forward.

I was happy to see my home state (I grew up in Rochester) once again taking the lead in educating its doctors about ME/CFS. The NYS Department of Health also issued a letter to doctors last year about ME/CFS. Now, we need to get the other 49 states to follow its lead!

This is a great article to share with your doctor, as it provides a good overview and a long list of scientific studies to back it up. Just click the link to the article above and print pages 23 - 25.

As a reminder, an ME/CFS Pediatric Primer was also published last year, which is an excellent document to print and share with your pediatrician or family doctor, if your child has ME/CFS (or is suspected to).

Things are looking up! It's going to get harder and harder for ignorant doctors to remain in the dark, as great information like this continues to be published.

Wednesday, February 21, 2018

Great News! Glutathione Now Available as a Nasal Spray!

Copyright: sudok1 / 123RF Stock Photo
I wrote a post here about a year ago about Increasing Glutatathione in ME/CFS and Related Illnesses and about the improvements my son and I have seen from adding glutathione injections to our treatment regimen. You can read that post for more details on exactly what glutathione does, why it's important, and what roles it plays in our illnesses.

The bottom line is this: glutathione is a naturally occurring compound that people with ME/CFS, fibro, Lyme, and similar illnesses don't make enough of. Glutathione is crucial for methylation, energy production, detox, improving exercise intolerance, and immune function, so increasing glutathione (helping to give our bodies more since they're not efficient at making enough) can have ample positive effects on almost all of our symptoms. Oral glutathione supplements are poorly absorbed and don't get into the cells well, where they need to be to help. Until now, the best approaches were IVs or intramuscular injections. That post also explains the improvements we've personally seen from glutathione.

So, fast-forward to today. I have kept up the twice-weekly glutathione injections and have seen great benefits from them. Among other things, I went from getting bacterial bronchitis 4-6 times a year to not getting it at all for over 18 months! The downside is that intramuscular injections use a large needle and are painful...though I've gotten better at it with practice. My son hasn't kept up with his glutathione injections regularly, in large part because of the difficult and painful injections.

So, I was thrilled to hear recently that glutathione is now available as a nasal spray! I checked with our ME/CFS specialist, Dr. Susan Levine, who confirmed that it was true and assured me that the nose spray is even more effective than IV's or injections - and no needles!

Glutathione nasal spray is available through Skip's Pharmacy in Florida, a well-respected compounding pharmacy that provides many ME/CFS patients with low-dose naltrexone. The price is similar to what we were paying for injectable glutathione. We immediately filled a prescription for the new nose spray for my son.

He has been using the glutathione nose spray for a few weeks now. He just uses one squirt in one nostril each day. Because it's daily, it's much easier for him to remember it consistently than the twice-weekly injections...and he's not avoiding it because of pain. He says he is already noticing improvements in energy and how he feels overall. I am hoping this will also help with his recurring bronchitis, as it did for me. I am finishing up the injectable solution we have, and then I will switch to the nasal spray, too.

Glutathione can help improve SO many different aspects of our illnesses. Now it will be more accessible to more people - that's reason to celebrate!

NOTE: That earlier post on glutathione also lists additional ways to boost glutathione.

Tuesday, February 20, 2018

TV Tuesday: The X-Files

I was looking at the list of TV shows my husband and I are currently watching to see if there were any I hadn't reviewed yet. There is! We were avid viewers of The X-Files back in the 90's, rewatched many of the old seasons with our sons in the 2000's, and were excited last year to see our old favorite show come back with a new season 10. We are now enjoying season 11, and this unique mix of detective show, paranormal, sci fi, and humor is still going strong.

In case you somehow missed The X-Files phenomenon the first time around, the shows (and spin-off movies) center on two FBI investigators, Fox Mulder, played by David Duchovny, and Dana Scully, played by Gillian Anderson. Waaaay back in the very beginning, Mulder was stuck in a basement office investigating so-called X-files, strange or unexplained cases that often veer into the supernatural. Scully is a medical doctor and was initially assigned to keep an eye on Mulder and bring her skeptical, hardcore scientific point of view to bear on his supposedly woo-woo cases. Long story short, 11 seasons and more than 20 years later, Mulder and Scully still work together in that basement office, and Scully's medical and scientific expertise still can't explain away the X-files. Along the way, they uncovered a massive conspiracy involving aliens and alien DNA.

So, when the show came back last year for season 10, more than a decade after it ended, it picked up where it left off: at the end of season 9, the X-files had been closed and the two partners had been living their own lives. At the start of season 10, we see that Mulder never stopped investigating the alien conspiracy, and now the X-files are being re-opened, with Mulder and Scully back together, along with their longtime boss, Walter Skinner, played by Mitch Pileggi. Like the first 9 seasons, the show still alternates between stand-alone episodes with investigations of weird X-files type stuff and episodes that move the bigger storyline about the alien conspiracy forward.

As ever, The X-Files is creepy, suspenseful, intriguing, and has a great sense of humor, especially in some of those strange stand-alone episodes. The chemistry between Duchovny and Anderson is still great, even more so after so many years together (both the actors and the characters). Many of the same elements are still here from the original nine seasons, sometimes with a modern twist. We are thoroughly enjoying this old favorite.

If you have never watched The X-Files before, then you might want to start back at the very beginning with season 1 (especially if you are looking for a binge-worthy show) because of that ongoing conspiracy storyline that was slowly built up over time. The beginning of season 10 does provide some information on what came before, but it is a lot to pack into a single episode recap/continuation. Season 10 is just 6 episodes (I guess they were testing the waters), but we are now 6 episodes into season 11, which looks like it will be 10 episodes long. If you were an old X-Files fan back in the 90's, then definitely dive into seasons 10 and 11 - it's like seeing old friends!

You can still find all of season 10 and what has aired so far of season 11 On Demand for free. It looks like ALL 11 seasons are available online for free at the Fox website. You can also stream The X-Files on Amazon for $1.99 an episode or $14.99 a season. Here are links to season 1, season 10, and the current season 11.


Monday, February 19, 2018

Movie Monday: The Greatest Showman

Two weeks ago, one of my friends treated me and another friend of ours to a movie because she so enjoyed this film with her family that she wanted to share it with us! We went out to dinner and then saw The Greatest Showman (in my favorite local recliner theater), and she was right! It's a fun, joyful spectacle of music, bright colors, and dancing, along with plenty of heart.

Hugh Jackman stars as P.T. Barnum, and the movie is based (quite loosely) on his life. It begins in his childhood, the poor son of a tailor. He is in love with Charity, the daughter of a wealthy neighbor. Though he is sent away to school, he and Charity write letters to each other, and when he returns, she agrees to marry him and move to New York City. There, they barely scrape by and have two adorable little daughters, but Barnum has big dreams. He buys an old museum and tries to make it a success with wax figures and faked strange creatures. He finally gets the attention and success he craves when he changes it to a live show, peopled by those with unique talents, like trapeze artists, animal acts, and what was then known as freaks. In short, he created the first circus. He hires Phillip Carlyle, played by Zac Efron, as a second ringmaster, and their fame grows. Of course, things don't go smoothly for them, and the pair encounter plenty of challenges, including scorn and prejudice from some people.

The Greatest Showman is a musical, and one that the three of us enjoyed very much. It is filled with songs, dancing, and showmanship. It's best to approach this movie just as that - a colorful spectacle of fun. It is not a biopic of Barnum's life. According to the Wikipedia entry on Barnum, he was a bit more focused on money than on saving the forgotten people he hires, and there is no mention of a wife or children (and he was not nearly as handsome as Hugh Jackman!). It's best to go into this kind of film ready to be entertained - and we found it very, very entertaining. The music and dancing are all very well-done (who knew Jackman had so many talents?), and the brilliant colors and scenes of the show are joyful and fun, and heartwarming as well. Need a pick-me-up? We all left this movie with big smiles on our faces!

The Greatest Showman is still playing in some theaters - I highly recommend seeing this one on the big screen (check for recliner theaters near you!). Use the Fandango below or in the sidebar to find out where and when it is playing locally. It will be available for streaming on Amazon on March 20, 2018, and on DVD (available for pre-order now) sometime this spring.

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.


Thursday, February 15, 2018

Throwback Thursday: Correcting Sleep Dysfunction in ME/CFS

In the Facebook group I started for parents of kids with ME/CFS and related illnesses, there have been a lot of discussions recently about helping our kids get better quality sleep. The good news is that researchers have found out quite a bit about the sleep dysfunction in ME/CFS, and - even better! - there are ways to actually correct it at its root cause (not sedatives but ways to correct the hormonal problems that lead directly to sleep dysfunction). Correcting sleep dysfunction is extremely important because if your body isn't getting deep Stage 3 & 4 sleep (as is true for us without treatment), then everything else is going to be worse, especially immune dysfunction, endocrine dysfunction, and autonomic nervous system dysfunction - it is all connected together.

This blog post I wrote back in 2009, Treating ME/CFS Sleep Dysfunction, is still the best and most accurate information I have about sleep dysfunction. It explains WHY our sleep is messed up, exactly what is wrong with it (hint: sleep studies and sleep specialists rarely help), and how to correct it. These approaches have worked wonderfully for my son and I for about 12 years now - we both get normal, refreshing sleep (including deep sleep) every night for 9-11 hours and wake up feeling good and ready for a new day. Note that, like all treatments for ME/CFS, finding exactly the right treatment for sleep dysfunction for each person usually takes some trial and error because we are all different. The kind of meds (again, not sedatives) that work well for my son and I (low-dose TCAs) don't work for a small minority of people due to a genetic defect that prevents them from metabolizing TCAs - if you have your genetic data, you can check for that or you can try them and see. The best approach is to use the two articles I link to in that post (the chart is especially helpful) and to work with your doctor to try different things until you find what works best for you - always start with super-low doses.

That is the primary way to correct sleep dysfunction, but treating other aspects of ME/CFS will usually have a positive effect on improving sleep (though for us, we still need the meds to correct sleep dysfunction.

In particular, treating Orthostatic Intolerance can help prevent random bouts of tachycardia (racing heart beat) during the night that disrupt sleep, so that will help somewhat but won't completely correct your sleep dysfunction. Specifically, though all OI treatments have the potential to help sleep a bit, taking low-dose 24-hour (extended release) beta blockers at bedtime can reduce or eliminate those bouts of tachycardia during the night...and, bonus! you wake up in the morning feeling good and ready to be active.

Treating Immune System Dysfunction can also improve sleep somewhat, since immune dysfunction is at the heart of this disease and is behind the endocrine dysfunction that causes the sleep dysfunction (yeah, we have a LOT of dysfunctions). It's a vicious cycle, so improving one aspect of this illness almost always improves others.

Finally, when you have ME/CFS, you should ignore some of the classic sleep advice that you will get from doctors and even so-called sleep specialists - they usually don't understand our specific type of sleep dysfunction. In particular, I cringe when I hear that a doctor told an ME/CFS patient NOT to take daytime naps and to force him or herself to stay awake during the day. This is terrible advice for someone with ME/CFS because the more exhausted we get, the more dysfunctional our sleep will be. When we get over-tired like that, we end up "wired and tired" and even less able to get a good night's sleep. So, instead of listening to the so-called experts, you need to Listen to Your Body and focus on what helps you to feel best. As most of us have learned the hard way, pushing past our limits only makes us sicker. Also, proactive rest is usually very helpful - where you rest before you feel wiped out in order to to try prevent that complete crash. For me, this means a an afternoon nap every single day, as I explain in this post, How My Daily Nap Saves Me.

Hope all that helps you to improve your sleep and correct your sleep dysfunction - it makes every other aspect of the disease better!

Sweet Dreams!

Tuesday, February 13, 2018

TV Tuesday: The Alienist

My husband and I (and my dad, too) enjoyed reading The Alienist by Caleb Carr, shortly after it was published in 1994, amid a flurry of rave reviews. Now TNT has turned this best-selling story of an 1896 serial killer into a TV series.

If you cross the TV show Bones with an FBI psychological profiler and set it in the 1890's, you begin to get an idea of the feel of this dark thriller. In 1896 New York City, Dr. Laszlo Kreizler, played by Danial Bruhl, is an alienist. According to the show's intro:
"In the 19th century the mentally ill were thought to be alienated from their own nature. Experts who studied them were known as Alienists."
Kreizler is something of a renegade in showing both interest and compassion toward the mentally ill since the standard practice of that time was to lock them up or try to "cure" them through all kinds of barbaric methods.  When Kreizler hears that a young boy dressed as a girl has been found brutally murdered on top of the just-being-built Brooklyn bridge, he sends his friend, John Moore (played by Luke Evans), to the scene, since Moore sometimes works as a crime reporter, putting his drawing skills to work. Moore brings a drawing of the horrific scene back to Kreizler.

The police - who are mostly corrupt and operate on a bribe system - show little interest in solving the case, even after Kreizler points out that other child prostitutes have been found in similar condition recently. This is a class of people the police would prefer to just brush under the rug. Sara Howard, played by Dakota Fanning, grew up with Moore and now works as an assistant to Police Commissioner Roosevelt, the only woman in the police department. She is also interested in the case, and the three begin to investigate it on their own, along with the help of two Jewish brothers who are budding forensic specialists. Despite the apathy of the rest of the police force, Roosevelt wants to do the right thing and so allows this undercover investigation.

As with the original novel the show is based on, my husband and I are both enjoying The Alienist. If you enjoy modern detective and forensic shows, then it is pretty fascinating to see this turn-of-the-century approach, where fingerprint analysis was a brand-new concept and crime scene investigation cursory at best. The three main characters - and the supporting actors as well - are excellent in their roles, and the growing mystery is captivating. As you might expect from a show of this nature, it is pretty gruesome at times and very, very dark, both in topic and tone. I prefer not to watch this one right before bed! It's engrossing though, and we can't wait to see what happens next - I only wish my dad were still here - he would love this show!

We are three episodes into the new show, and all three episodes are still available On Demand (where we watch it) or on the TNT website. You can also watch The Alienist on Amazon, where the first episode is free and additional episodes start at $1.99 (or $15.99 for the entire season).

Thursday, February 08, 2018

Throwback Thursday: Lyme Disease & Other Tick Infections

Dozens of times each week, I get asked about Lyme disease and whether people with ME/CFS should get tested for it, so it seemed like a good topic for Throwback Thursday.

Just the title of this post I wrote in 2014 answers that question:

Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections.

The reasons why everyone with our diseases should also be evaluated for tick infections (including Lyme disease) are explained in detail in that post, but the bottom line is that these infections are often behind the scenes in ME/CFS or fibromyalgia, and it can be almost impossible for a patient or an inexperienced doctor to tell them apart. What makes getting evaluated for tick infections urgent is that when they are left untreated, they can cause permanent neurological damage. This essay by best-selling author Amy Tan tells about her horrible experiences with Lyme disease that have left her with lingering epilepsy, even after years of treatments. If you have joint pain, headaches, light sensitivity, nausea, or any neurological symptoms at all, it is even more urgent that you get evaluated immediately.

That post also explains why there are no reliable blood tests for Lyme, due to the nature of the Lyme bacteria (it doesn’t stay in the bloodstream) & the fact that many people – especially those with immune disorders like ME/CFS – don’t make the antibodies. The best blood tests only catch about 65% of cases. So, if you get a positive blood test result, you definitely have Lyme, but a negative blood test result doesn’t tell you anything. In addition, Lyme is only one of a dozen common tick infections, and most doctors only test for Lyme. The only way to know for sure if you have tick infections (including Lyme) is to see a Lyme specialist or LLMD who will run the best tests available but will also look at symptoms, history, and physical exam to determine if tick infections are present and which ones – any single positive test result for ANY of the tick infections means you were definitely bit by an infected tick (most people don't remember a bite), then the doctor can figure out which ones based on his or her experience (that’s why you need to see an LLMD). Use the tips and resources at this link to find an LLMD near you.

One you find out that you DO have Lyme or other tick infections, you again need a Lyme specialist or LLMD to get proper treatment. Do not rely on a non-LLMD because it can do more harm than good. We found that out the hard way. Our pediatrician diagnosed our son's Lyme disease (he was one of the lucky 65% to have a positive blood test) and treated him with one month of antibiotics. The problem was that he also had two other tick infections that she didn't know to look for. In fact, no one even mentioned the possibility of other tick infections to us, until more than 3 years later when I learned about them from other patients. By then, our son was almost bed-ridden. We took him to an LLMD and found out that he also had bartonella and babesia, two other tick infections, and still had Lyme because you can't get rid of it without also treating the co-infections.
Treating tick infections, especially in the presence of an immune disorder like ME/CFS, is very complicated, so you need an expert to guide you. The various tick infections all require different kinds of treatment - some are not even bacteria!

During treatment, you will likely get worse. This is actually a good thing, a sign that the treatment is working and killing off the culprits. Those dead bugs then flood into your bloodstream, causing a worsening of all symptoms that is known as a Herx reaction. Too many people stop treatment when they get worse, but then those infections are still in your system, doing damage. Instead, there are many, many ways to manage a Herx reaction - the key is to find a balance where you can tolerate the treatment and still function, but you are continuing to make progress against the infections. This blog post explains more about Herx reactions (they also occur when treating viruses with antivirals) and lots of ways to manage them.

Very often, treatment of tick infections includes antibiotics which can then cause yeast overgrowth, a problem that those with ME/CFS are even more susceptible to because of our immune problems. Yeast overgrowth by itself can cause severe symptoms, including sore throat, exhaustion, flu-like aches, and severe cognitive dysfunction/brain fog. This post explains how to treat yeast overgrowth.

Don't let the possibility of yeast overgrowth scare you off from treating tick infections. Antibiotics are not the only treatments used against Lyme, bartonella, and other bacterial tick infections. There are several all-herbal protocols available (your LLMD can tell you more about them). My son switched to the Byron White herbal protocol four years ago, and it has been surprisingly potent and very effective.

Finally, most of the treatments that can help those with ME/CFS will also help those fighting tick infections - things like improving methylation (crucial for those with infections), improving immune function, treating Orthostatic Intolerance, and correcting sleep dysfunction. All of these topics and more are covered in this post on Effective Treatments for ME/CFS.

Don't let the complexities of diagnosing and treating tick infections scare you off. If you have these infections behind the scenes in your body, you will continue to worsen over time, possibly ending up with permanent neurological damage. With treatment, you will see significant improvements over time. My son was almost bed-ridden in high school. Now, 7 years into treatment for his 3 tick infections, he is living on his own, finishing college this semester, working part-time, in the sailing club, and even plays sports. He still has ME/CFS, but treating those infections has provided significant improvement, little by little. He is living an almost-normal life now and hopes to work full-time after graduation. It's been a long and difficult process, but seeing him so much improved makes it all worthwhile.

Monday, February 05, 2018

Movie Monday: Hello, My Name is Doris

After writing my year-end movie wrap-up, Favorite Movies Watched in 2017, recently, I had one of those middle-of-the-night realizations (am I the only one who does that?) - I hadn't reviewed Hello, My Name is Doris last year! Somehow, the review fell through the cracks, which is a shame because it probably would have taken the prize for my favorite comedy last year. I watched this warm and funny movie with my two closest friends, and we all loved it.

Sally Fields stars as the 60-something Doris and steals the show in this fun, quirky role. As the movie opens, Doris has just lost her mother, whom she lived with and cared for her whole life. She is on her own for the first time and has lots of neuroses, including never throwing anything away and living in the midst of clutter. She works in an office, and someone new comes into her reclusive, habit-driven life when a new art director is hired. John, played by Max Greenfield (Schmidt on The New Girl), is hunky and kind to Doris. After a lifetime of reading romance novels, Doris is primed for true love (or lust) and falls for John, despite his being decades younger than her. Her best friend Roz, played by Tyne Daly, thinks she has lost her mind, but Doris' world is opening up for the first time. She is scared but also excited and enlists Roz's granddaughter's help in stalking John online. They discover that John loves a certain band that is playing locally the following week, so Doris goes to the bar where they are playing, sees John there, which leads to even more new experiences.

My friends and I just loved this warm, hilarious movie. Sally Field is perfect as Doris, with her wigs, brightly-colored clothes, and her infectious and growing enthusiasm for life. It's so much fun to see Doris' world opening up, as she explores her freedom for the first time in her 60+ years. It's an earnest, heart-warming, and very funny movie that is filled with joy. This is a great movie to watch when you need a lift!

Hello, My Name is Doris is available for free on Amazon Prime streaming or on DVD. It is available through Netflix only on DVD, not streaming.

You MUST watch this trailer, which highlights some of the warmth and humor of the movie:


Sunday, February 04, 2018

Weekly Inspiration: Celebrate the Small Stuff to Banish the Winter Blues

This is a tough time of year for many people, especially those with chronic illness. You may still be crashed from the frenzy of the big holidays, days are short and often gloomy, and you are probably stuck inside the house even more due to bad weather. This stretch between Christmas and Easter (signaling spring!) can be a long and difficult one for many.

For my family, though, this is a time of year filled with joy and fun because we celebrate all the little (sometimes tiny!) holidays in small ways that brighten up the gloomy winter days. Don't worry - you just made it through the major holiday season, and I'm not suggesting another push beyond your limits for even more holidays. Rather, we celebrate in small ways suited to our limits, and you can, too. If you have kids at home, even better - they can pitch in to help decorate (maybe even cook if they are older), and all kids love to celebrate! Even if you are bed-ridden, you can still brighten up these gloomy winter days with small sparks of joy, celebrating days like Mardi Gras, Valentine's Day, St. Patrick's Day...even Groundhog's Day! If you're in a part of the world that doesn't celebrate this stuff, even better! Add some new simple and joyful traditions to your life.

This article I wrote for ProHealth, The Joy of Celebrations, explains how to add small celebrations into your life, with tips that will work even from your bed - wear festive pajamas, ask your partner to bring home holiday-themed foods, have your kids create some decorations to hang in your bedroom,  watch something appropriate for the holiday on TV or your laptop, and more. The article includes lots of practical tips and ideas for bringing some joy into your winter days that will boost you up, not wear you out.

This blog post, The Joy of Celebrations, is one I wrote here on the blog about 7 years ago. You'll see that I used some of the same information and ideas for my ProHealth article, but the blog post includes some of our own family photos of our own small celebrations - even one for Groundhog's Day!

One of our biggest celebrations all year at our house is for Mardi Gras, because my husband and I used to live in New Orleans! My sons and I have now improved enough that we were able to resume our old tradition of hosting a party (though it's a small, quiet one now), but even in our sickest years, we still celebrated in our own small ways alone at home. Here are some ideas and links for celebrating Mardi Gras from your bed, no matter where you live! There's even a link there to live webcams of the parades in New Orleans. Unfortunately, the links to my recipes on that post are no longer working (the magazine I published them in was sold, so they are no longer on the site), but you can see those recipes here, in a copy of the article. Mardi Gras Day this year falls on Tuesday, February 13, so next weekend is a great time to celebrate.

Here at our house, we will be celebrating Superbowl tonight (no, I don't care about football, but I enjoy the foods and the ads!), and next week is Mardi Gras! We don't do as much for Valentine's Day, with our sons out of the house now (and this year, it is the day after Mardi Gras Day), but my husband and I will get some yummy take-out and share some chocolate.

My psychologist who specialized in chronic illness used to always ask me, "What are you looking forward to?" We have lots of spots of joy coming up in the next two months to look forward to! Add these no-fuss, no-work mini-celebrations into your life, and you'll be past those winter doldrums before you know it...maybe you'll even look forward to this time of year! (though you can keep celebrating small holidays any time of year)

How do you celebrate the small stuff?

Happy Mardi Gras!