TV Tuesday: Goliath

My husband and I just finished watching season 2 of Goliath, an Amazon Prime original show starring Billy Bob Thornton.

Thornton plays Billy McBride, a talented but disgraced lawyer living in L.A. He drives an old convertible, drinks way too much, and takes on small cases, nothing like what he used to do in the huge law firm that he helped start. Little by little, we find out about the case that sent Billy into a tailspin. Meanwhile, Patty, a real estate agent and part-time lawyer played by Nina Arianda, approaches him to ask his help on a case: a woman whose husband was killed in an explosion on a boat. The man's employer, a large and powerful corporation and the Goliath of the title, claims it was an accident, but his wife suspects something far more sinister. Patty convinces McBride to take the case, and against his better judgement, Billy finds himself drawn into it. Tania Raymonde plays Brittany, a prostitute who Billy has helped in the past and who sometimes serves as his legal secretary. The large corporation they are suing is represented by Billy's old firm (another Goliath), now run by Donald Cooperman, Billy's old partner played by William Hurt, who is a creepy recluse who spies on his employees and holds a grudge against Billy. Maria Bello plays Michelle McBride, Billy's ex-wife who still works for his old firm.

The plot is intricate and engaging, as each episode goes deeper and deeper into the legal case and the circumstances surrounding the man's death, providing plenty of suspense. The cast is outstanding and really pulls this show up to a higher quality than most TV shows. Billy is a screw-up in many ways, but you can't help but like him, with his crooked smile and fervent belief in justice. The rest of his team is just as likable, while William Hurt's performance as Cooperman is the perfect bad guy you love to hate (he's super creepy). Season 1 of the show follows this case through to its conclusion.

In season 2, Billy and his team are back, though I won't say much more about their circumstances to avoid spoilers of the first season. This time, Billy is drinking more than ever but is asked by his friend Oscar, played by Lou Diamond Phillips, to represent his 16-year old son, who is being held as a murder suspect. Oscar is certain his son is innocent, and Billy has known the boy for years, so he reluctantly gets pulled into the case. This time, the Goliaths and conspiracies are even bigger, involving the police, a drug cartel, and politics. This second season was far more gruesome and violent, with a couple of really warped people at the center of things. My husband and I were joking about needing to watch something more uplifting after watching Goliath this season, like an episode of Breaking Bad! It's pretty dark. I definitely preferred season 1, though season 2 still had a compelling plotline. It's really worth watching just for Billy Bob Thornton. Interestingly, though season 1 was enjoyed equally by critics and viewers, Rotten Tomatoes shows that for season 2, critics rated it an average of 86%, while regular viewers gave it only 53%.

Season 1 and Season 2 each feature 8 episodes and are available exclusively through Amazon Prime (at the links provided).

Here is the trailer for season 1, to avoid any spoilers:



    

URGENT: Tell Your Reps to Reinstate CFSAC

A week ago, the U.S. Department of Health and Human Services made a startling and unexpected announcement: the charter for the CFS Advisory Committee had expired and would not be renewed. This was news to EVERYONE, including the committee's Chairman, Dr. Faith Newton (a close friend of mine and educational specialist whose son has ME/CFS) and the rest of the committee members. CFSAC had been in place since 2002, and its charter had been renewed every two years, as required, since then.

Further investigation revealed that CFSAC was the ONLY HHS Advisory Committee shut down, and its operating costs were less than $200k per year - this was not part of some big cost-cutting move. Pushed for a reason, the next day the HHS added that "The Department feels that the committee accomplished the duties outlined in its charter." That statement is so far from true as to be laughable. All members of the committee agree that it had many open items that either hadn't even been started yet or were in process.

For more details and history on CFSAC and this sudden closure, see Jennie Spotila's blog post at Occupy M.E., Rest in Power, CFSAC. As always, Jennie has explained it all clearly and thoroughly.

What Can You Do?
So glad you asked! Solve ME/CFS has put together a quick and simple form for writing to your Congressional reps to ask them to reinstate the committee - I did it earlier this week, and it only takes a few moments.  All the pertinent information is already written for you, though you can add a brief description about your personal situation if you like.

This is such an important issue - without that committee ME/CFS patients, doctors, caregivers, and researchers have no voice in how the HHS approaches ME/CFS.

Many of us - including myself and my entire family - have participated in past CFSAC meetings and given testimony to the committee. This meeting summary from 2011 includes a photo of the teens that came to the meeting and a video of our own testimony on pediatric ME/CFS and will give you an idea of the important role this committee played.

PLEASE, act today and fill in that quick form to let your Senators and Representatives know how important CFSAC is to us.

Movie Monday: Jurassic World

We had a little movie spree a few weeks ago when we enjoyed a 3-day staycation with our sons and then the following week, our niece came to visit. I'll mention the second movie first. One night, it was just me, my 24-year old son, and my 16-year old niece, and everyone was worn out and wanted to watch a movie - but what would appeal to both of them?? They have very different movie tastes. I ended up with a movie I'd already seen this summer, but I though they'd both enjoy: Game Night, starring Jason Bateman and Rachel McAdams (you can read my review at the link). Great choice! They both loved this unique movie that combines suspense and humor, and I enjoyed it a second time, too. It's still for rent on Amazon, if you're looking for a crowd pleaser!

So, going back to our staycation, we had another tough crowd to please because our sons don't always like the same movies. So, we reached back in time and watched Jurassic World - not the new one out this summer, but the one from 2015. We'd never seen it before, and everyone agreed on it!

Set 22 years after the events in the original Jurassic Park movie, this movie takes place on the original site, where a fully-functioning theme park called Jurassic World is now in operation. They've ironed out the problems and made the park safe (they think) for all the tourists that flock there to see real dinosaurs. Bryce Dallas Howard (Ron Howard's daughter) plays Claire, who is the busy operations manager of the park. Her nephews, Zach and Gray, come to the island to visit, and get a tour of the amazing facilities. The research side of the operation has been working on a hybrid dinosaur - bigger and scarier than any other they have - called an Indominus. Meanwhile, Owen (played by Chris Pratt) has been carefully training the raptors so that they recognize him and respond to his commands. Owen evaluates the new Indominus and its enclosure and doesn't think the exhibit should be opened to the public because it's too dangerous and not secure enough. And guess what? He's right - the Indominus gets out and goes on a killing rampage, chewing up workers, tourists, and other dinosaurs indiscriminately. Zach and Gray are out in the park, so Claire and Owen go in search of them.

It's a pretty predictable plot but lots of fun to watch - giant dinosaurs terrorizing people, right? Of course, both Howard and Pratt are fun to watch, too - wait until you see Howard run from dinosaurs in her stilettos! (seriously, kick off the damn shoes when a dinosaur is chasing you!) It's what you'd expect from this franchise - loads of action, suspense, thrills, and peril. We all enjoyed it - it's just pure fun escapism, which was just right for our staycation. I was surprised to read just now that this is actually #4 in the Jurassic Park movies - I guess I missed a couple of them in the middle. And by the way, if you've never read the original novels by Michael Crichton - Jurassic Park and The Lost World - you should! They are both excellent.



You can stream Jurassic World starting at $2.99 on Amazon or watch it on DVD.

Weekly Inspiration: Who Are You, Really?

I've been thinking a lot lately about introverts vs. extroverts because I feel like chronic illness has changed me into an introvert. I've noticed lately that even though I feel better, crash less, and can do a lot more than in the early days of my illness, I still need plenty of quiet solitude. In fact, I'm working on a new article for ProHealth on this topic.

I found this TED Talk on a playlist called "For the Love of Introverts," and while the speaker, Brian Little, talks about introverts and extroverts, the talk covers a lot more than that. It's all about how to define who you are, using different kinds of criteria (introvert vs. extrovert is just one). In fact, one thing he talks about is how circumstances can change aspects of your personality...again, right along the lines of what I have been thinking about myself lately. Oh, and Brain is an excellent speaker and quite funny, too. Here's his TED Talk:

What do you think about Brian's system for defining who we are? I especially liked his last category of Idiosyncratic, to take into account our individual projects & interests and how circumstances can affect us. And, I did learn more about introverts and extroverts - watch for more on that subject as I finish my article. I'll share it with you when it's published. I think it is very important to know ourselves and understand our needs, especially when living a life defined in part by chronic illness.

Food for thought, right?

TV Tuesday: Fall TV Preview

It's September! And that means a new fall TV season is quickly approaching.

Here are some of our old favorites coming back, some new shows I'm excited to try, and a few disappointments of old shows that have been cancelled:

Old Favorites Coming Back

These are the shows we look forward to returning to in the fall, with expected start dates:

The Last Ship - 9/9/18 - We love this post-apocalyptic show starring Eric Dane (McSteamy) that has grown and evolved with each season - this year, it moves from summer to fall.

The Resident - 9/24/18 - We just started watching this new medical show last winter and although it has some flaws, we generally enjoy it (and especially its main cast members).

This Is Us - 9/25/18 - I watch this show on my own during lunchtime and love to laugh and cry with every episode! I can't wait to see what they do with season 3.

Grey's Anatomy - 9/27/18 - Season 15?? Yup, and we've watched it since season 1 and still love it! What other huge medical disasters and new couplings can they come up with?

Madam Secretary - 10/7/18 - One of the best shows on television, with an outstanding cast - suspenseful, intriguing, and even funny.

Blindspot - 10/12/18 - We've watched this fast-paced thriller for 3 seasons and are eager to see what's in store for Jane Doe next.

Favorite Shows That Got Cancelled
They're not coming back? Say it isn't so! These are worth watching the old seasons, if you haven't tried them yet:

Scorpion - Though it sometimes stretched the bounds of believeability, we enjoyed all 4 seasons of this suspenseful and funny show and will miss it in this fall's line-up.

Wisdom of the Crowd - Though it only aired 1 season, we loved this unique show about fighting crime with crowd-sourcing. Rumor is that allegations of sexual misconduct by Jeremy Piven, its star, (though he denied them) may have shut it down. I'm sorry to see it go.

Designated Survivor - My husband is going to be SO upset to hear this one isn't coming back. Though we both enjoyed this political thriller starring Keifer Sutherland, it was his favorite in the fall/winter line-up. Its 2 seasons are well worth watching.


New Shows We Plan to Check Out
I watched a lot of YouTube trailers tonight, and there are a few shows I am looking forward to trying.

Manifest - 9/24/18 - I can't wait to watch this one, about a plane full of passengers that went missing five years ago and suddenly reappears - oooh! Intriguing!



New Amsterdam - This looks pretty good, starring Ryan Eggold (Tom from Blacklist), but I don't know if we have room in our hearts (or viewing schedule) for a third TV medical drama.



A Million Little Things - A new ABC drama about a group of friends who are upset when one of their own commits suicide, along the lines of NBC's This Is Us, in terms of an ensemble drama. I will probably try this one on my own at lunchtime.



I Feel Bad - There are a whole slew of new sitcoms this season, but we don't watch too many of those (except Modern Family and Life in Pieces when our kids are home). I might try this one myself - the preview was pretty funny!



Those are the highlights for fall TV on our horizon.

What are YOU looking forward to this fall on TV?

Weekly Inspiration: New ProHealth Article - Roll with the Punches

Many of you know that this has been a difficult year for me and my family, especially if you follow me on Facebook or Twitter. Although our chronic illnesses have been fairly consistent, we've had a series of serious and intense crises, one after another, causing emotional stress and financial strain.

A family member commented to me during one crisis that we were amazingly calm, given what was happening, and I realized that a life with chronic illness has taught our family how to manage when things go wrong, as they do in every life. The result is my latest article for ProHealth, Roll with the Punches, that describes one of our biggest challenges this year, how we coped, and some tips for what YOU can do when the unexpected happens to you or a family member. You can read the full article at the link.

Let me know your thoughts. Have you been through some unexpected problems? Did your "normal" life of chronic illness help you to be more calm and accepting? I'd love to hear your thoughts and stories in the comments below.

Hope you are enjoying this weekend (a holiday weekend in the US!). I'm trying to take it easy and relax - read a lot! - to help recover from the stressful resolution of another crisis earlier this week.

Weekly Inspiration: Come Together

We had another successful get-together with our local chronic illness support group last night when we hosted a potluck dinner here at our house, with about 20 people. Some who attended were old friends, of the original five families that I gathered together over eight years ago, and some were new group members, struggling with their own or their children's illnesses or even still seeking a diagnosis. We talked for hours, shared our challenges and helpful advice with each other, and just laughed and enjoyed each other's company, too.

The adults and parents traded a lot of stories, experiences, and information, and the young people bonded. We had a new 21-year old young man here with his parents whose ME/CFS has recently forced him to greatly reduce his college work. He and my own 24-year old son hung out together in our basement. My son says they talked a bit about their illnesses, especially the isolation and challenges of being chronically ill with healthy friends, but they also just chatted about favorite TV shows, video games, and Pokemon! It can be incredible - sometime even life-changing - just to be able to relax with a friend who totally "gets it."

To read more about our own local group, Birds of a Feather describes how the group started and how I found those original other four families. That first local meet-up was just us moms (all with sick kids) at a local restaurant for lunch. That was followed by a second "mom's lunch" at the mall with another new family added, only this time some of our teens came along to meet each other. That was quickly followed by a family picnic, where all the kids and some husbands/fathers joined us, as well as two more families. That was a resounding success, and by then, we all felt like old friends (in addition to helping each other with treatments, doctors, school accommodations, and more). If you're still not convinced of the benefits of meeting up with others who are similarly sick, check out Party for Chronically Ill Kids, which always makes me tear up, thinking about how our kids bonded and what big a difference it made for them to meet others like themselves.

Our local group now includes more than 40 singles and families - some sick adults, like me, and some healthy parents with sick kids/teens/young adults - from five states (we live in Delaware, which is tiny!). Last night's get-together proved once again how powerful it is when patients and their families come together. One mom hugged me as she left and thanked me for hosting, saying it had been a life-changing evening for her - which is just what we all said those first times we got together!

Have I finally convinced you of the benefits of connecting with others locally? This article I wrote for ProHealth, Birds of a Feather: The Joys of Community, includes tips on how to find others nearby with the same or similar illnesses.

Now, go find your people!

TV Tuesday: Breaking Bad

It is quite possible that my husband and I are the last people on Earth to jump on the Breaking Bad bandwagon, but we finally gave it a try, after this popular show finished five seasons and won 147 awards! And, of course we were immediately hooked. We are now coming to the end of season three, and we are loving it.

So, in case you - like us - have been living under a rock, here's a quick recap. Bryan Cranston plays Walter White, a quiet, geeky family man who teaches high school chemistry. Walt's wife, Skyler (played by Anna Gunn), is expecting a new baby, and their teen son, Walt Jr., played by RJ Mitte, has cerebral palsy but is managing high school quite well. Then, Walter's world explodes when he finds out he has terminal lung cancer. Panicking and worried about what will happen to his family when he's gone (not to mention mounting medical bills), Walter remembers seeing loads of cash on the news when his brother-in-law, Hank, a DEA agent (played by Dean Norris), raided a meth house, and he also witnessed one guy escape from a raid when he did a ride-along with Hank. That guy happens to be an old student of Walter's, Jesse Pinkman, played by Aaron Paul. So, desperate to provide for his family before he dies, Walter partners up with Jesse, they get a rickety old RV, and Walter uses his expertise to set up an awesome meth lab. The two hapless criminals are surprisingly good at cooking meth, though they run into a LOT of challenges along the way.

I know this show sounds really dark - guy dying of cancer decides to cook meth - which is probably why it took us so long to try it, in spite of all the accolades, but it is really, really good - and has some surprisingly funny moments! It is definitely dark. Things rarely go well for Walter and Jesse, and there are some serious run-ins with major criminals in store for the pair, as well as other scary, unforeseen challenges. Both of them spin out of control at various times, as they get pulled deeper and deeper into the criminal world, all while Walt tries to hold his family together and keep his secrets. Most episodes, though, also make you laugh out loud, like the sight of straight-laced Walter cooking meth in nothing but his tighty-whiteys and an apron! This show is incredibly compelling - absolutely addictive. We kicked off watching it by binging the first season during Fourth of July weekend! Though you often want to shake some sense into Walt and Jesse, the characters and the show overall are complex and the plot is gripping. We are almost at the end of season three, and it just gets better and better.

If you also want to try Breaking Bad, all five seasons of the show are available on Netflix. But be warned, once you start, you won't be able to stop!

Movie Monday: Extinction

Last week, our young adult sons were home for a Staycation, after our camping plans got rained out. We had lots of fun and enjoyed several good movies! It's hard to choose a movie to appeal to all four of us, but the first one we chose was Extinction, a new Netflix original movie that we all enjoyed.

The movie begins with a man named Peter, played by Michael Peña, experiencing nightmares. In the dreams, he sees some sort of invasion from the sky, violence in the streets, and menacing figures attacking people. We see Peter go to work and interact with his wife, Alice, played by Lizzy Caplan, and their daughters, Lucy and Hannah. They seem like a nice family, and Peter seems like a good dad, though he is tortured by these nightmares that feel real and are becoming more intense and frequent. He comes to believe that they are premonitions, so he goes through the motions at work and at home, until his dreams begin to come true one night.

That's as far as I'm going with a plot description because the real excitement of this movie is its many unexpected twists and turns. There is some family drama, as Peter and his wife, Alice, argue about him working long hours and seeming distant, but there is a sense of dread imbued in the first part of the movie, thanks to Peter's increasingly disturbing nightmares. The rest of the movie is filled with action and suspense, like any disaster thriller, but also plenty of surprises. We all enjoyed it, and even my son and husband - who both always (annoyingly) correctly predict what's coming in suspense movies - were  surprised by some of the twists in this one.

Extinction is showing exclusively on Netflix.

Weekly Inspiration: Laughter is the Best Medicine

My older son, who has had ME/CFS for 14 years and three tick infections for about 12 years, is fond of saying, "Laughter really IS the best medicine, Mom!" While he was growing up, he and I frequently put this old adage to practical use. When he was badly crashed and home from school (which was a LOT some years), he and I would get videos from the library or watch old comedy TV shows on TVLand. I Love Lucy was one of our favorites - guaranteed to bring on belly laughs and make us both feel better. Our favorite episode was the one where Ricky thinks he's losing his hair, so Lucy does all these bizarre homemade cures for him - hilarious!! Here's a brief clip from that episode - it still works - my husband is asking what's so funny!



And even though my son had NO idea who Carol Burnett was, he proclaimed that this was the funniest thing he'd ever seen (he still thinks so) when I shared this clip of Tim Conway's dentist sketch from The Carol Burnett Show:



For some more recent TV shows that will tickle your funny bone and make you forget your worries for a little while, try these (my review and a trailer are at each link):

• The Letdown, an Australian comedy about a new mom, had me laughing out loud and will especially appeal to anyone who's a parent.
• The Marvelous Mrs. Maisal, an Amazon original show, has plenty of warmth and drama but is also very, very funny, about a woman in the 1950's who wants to do stand-up comedy. I can't wait for season 2!
• BrainDead, available on Amazon Prime, is a very weird but hilarious show that combines political satire and aliens (really!). My husband and I laughed through its first and only season last summer.

I also love to watch movies that make me laugh - a great pick-me-up on a crash day! Our all-time favorite "laughter is the best medicine" movie is Planes, Trains, and Automobiles, which we can just about recite by now, but that just makes us laugh even harder!

A few other (more recent) funny movies to pick you up when you're feeling down:

• Game Night starring Jason Bateman and Rachel McAdams surprised me by how funny it was. It's a mystery/thriller but with lots of laughs.
• Hello, My Name is Doris stars Sally Fields as an aging eccentric who has a crush on a young hot guy at work. My two friends and I loved this warm, funny movie.
• St. Vincent stars Bill Murray as a grumpy old man who gets roped into babysitting, with lots of laugh but also some poignant moments, too. My husband and I both enjoyed it.

And for those like me who are avid readers, there is nothing better than a book that makes you laugh out loud but is also warm and uplifting. Here are a few of my recent favorites:

• My Ex-Life by Stephen McCauley - an insightful and very funny novel about a gay man who moves in with his ex-wife and her daughter. I had the pleasure of reviewing the book, interviewing the author, and then meeting him in person. I am now looking forward to reading some of his earlier novels!
• Be Frank with Me by Julia Claiborne Johnson - a quirky, warmhearted, and hilarious novel about a unique little boy who bonds with his caretaker. My book group enjoyed it very much.
• The Impossible Fortress by Jason Rekulak - a very fun, poignant, and laugh-out-loud novel about a couple of kids who enters a computer programming contest in the 1980's - a must-read if you grew up in the 80's!

I could go on and on all day, but I want to hear from YOU - what are your favorite TV shows, movies, and books that make you laugh and provide a good pick-me-up on a bad day?

Failed Treatment Trial for Me: Berberine

Constant low blood sugar headaches made berberine a no-go for me.

About a month ago, I wrote here about new-to-me (and one entirely new) treatments for ME/CFS. I have since tried one of those treatments for myself, but I had to stop within a week due to side effects, so I wanted to report back.

As I explained in that earlier post, I'd read this research article on the antifungal effects of berberine, which is sold as a supplement. That same week that I wrote the post, I started taking berberine since chronic yeast overgrowth is a long-term problem for both my son and I, as it is for many patients with ME/CFS. My doctor had given me the OK, and the research seemed promising. I also read that berberine was excellent at reducing cholesterol and triglycerides, which would also be an added benefit to me, since mine are often borderline, and the medications and supplements used to treat high triglycerides are contraindicated for Orthostatic Intolerance (because they dilate the blood vessels, worsening OI and thus worsening most ME/CFS symptoms). So, I had high hopes for my berberine trial. My one concern, as I explained in that earlier post, was that I also read that it could reduce blood sugar, and like most patients with ME/CFS, I already have low blood sugar. I was right to be concerned.

I bought a bottle of 500 mg capsules of berberine and began with two a day. Its effect of lowering blood sugar was immediately obvious to me. Right from that first day, my low blood sugar got much worse, and I got a killer headache both before lunch and before dinner when my blood sugar was at its lowest. I reduced my dose down to just 1 pill (500 mg) a day and tried to keep up small snacks during the day, but the low blood sugar and resulting headache continued. In fact, I quit taking the berberine completely after a few days, but the nonstop headache continued for a full week. I was hugely relieved when it finally wore off.

I did read about one doctor who recommended a dose of only 200 mg, instead of 500 mg, but my reaction was so intense that I don't think I will try it again. I may try some new varieties of probiotics instead. There are a few I have heard about from other patients that sound worth a try. I'll let you know!

Just a reminder - this is the last week for endorsements for the WEGO Health Awards! I have been nominated for a Patient Leader Hero Award, so please click the link to my profile page and then click on Endorse Sue Jackson to show your support for my blog, the support groups I have started, and my other work to reach out and help other patients. It only takes a moment. Thank you!

Movie Monday: How It Ends

Last weekend, my husband and I were in the mood for a movie, so we watched How It Ends, a suspenseful, action-packed, thoughtful apocalypse film that kept us glued to the screen.

This disaster/road trip movie starts fast and keeps moving. In the opening scene, Will, played by Theo James (who played Four in the Divergent movies), is in Chicago, talking to his girlfriend, Sam, played by Kat Graham, on the phone. She is in Seattle, and he is headed home today, but while they are talking, he hears strange sounds through the phone, Sam says something is wrong, and then the connection cuts out. Unable to reach Sam again and hearing disturbing reports on the news of a huge seismic event off the West Coast, Will heads to Sam's parents' house, even though Sam's father, Tom, doesn't like him. Tom, played by Forest Whitaker, is ex-military and has high standards for his daughter. But with Sam's life apparently in danger and all planes grounded, the two men set aside their differences and head west in a car, while Sam's mom goes to stay with their son. Thus begins an epic cross-country road trip, while a series of cascading disasters unfolds around them. Mega storms, fires, and more bombard the travelers, as they get closer and closer to the center of the apocalyptic disaster. Plus, they have to deal with other people they meet along the way, some of whom are kind and in need of help themselves, but others who are taking advantage of the situation. It's a harrowing survival situation, and as the two drive westward, they gradually and grudgingly begin to bond and respect one another.

This apocalyptic disaster movie features nonstop action and plenty of suspense. Anytime you think the pair will be OK, some other unexpected challenge suddenly pops up. There is a fair amount of violence, but it is also a thoughtful movie, focusing in on the emotional relationship between Will and Tom as well as the physical challenges they face. The disaster itself is never fully explained, though all kinds of theories have popped up on the internet since it came out. It's a nail-biter thriller that certainly kept our attention, and the acting is excellent. We both enjoyed it.

How It Ends is a Netflix original movie, so it is available exclusively on Netflix.

Weekly Inspiration: ProHealth - Coming of Age with Chronic Illness

Happy weekend! Summer has been so incredibly busy around here, with my adult sons in and out, all kinds of crises, and some travel (though very little actual vacation time!). I hope to post more on the blog in the fall.

Today, though, for my Weekly Inspiration post, I wanted to share my latest article, published this week on the ProHealth website: Coming of Age with Chronic Illness. You can read the full article at that link.

This is a topic near and dear to my heart, as my oldest son - who's had ME/CFS for about 14 years and 3 tick infections for the past 11 years - just graduated from college. He was mostly couch-bound during his last two years of high school and worked hard for six years to get an engineering degree. Besides our own experiences, for this article I also reached out to the wonderful group I run on Facebook for Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses. Everyone agreed that maturing and becoming an adult with illnesses that are so limiting carries with it huge challenges, and the parents in the group came up with some great ideas and tips for helping your teen and young adult kids. I wish I'd read their advice about 10 years ago!

If you have sick kids, of any age, you might also be interested in an earlier article I wrote, When Your Kids Are Chronically Ill, which includes coping strategies for both sick kids and their parents.

And if your kids are healthy, but you are the one who is chronically ill, then check out The Challenges of Being a Sick Parent.

Finally, if you are wondering HOW my son managed to get through college with ME/CFS and 3 tick infections, it was due to our relentless (and somewhat successful) search for treatments that would help. He and I have both improved significantly and can now live fairly active, semi-normal lives again. This post on Effective Treatments for ME/CFS summarizes the treatments that have helped us the most, with plenty of links to more information.

I hope you are enjoying a lovely weekend, and that this information helps to inspire you and your family to improve your lives with chronic illness.

P.S. If you want to join the Facebook group, Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses, please answer the questions that pop up after you click "Join" - that is the only way we have now to screen potential members (the group is for parents of sick kids (of all ages) only). We also have a separate group for teens and young adults who are sick, Teens with ME/CFS and Related Illnesses.

Movie Monday: The Incredibles 2

We lost power for a few hours on Saturday, so we escaped to the a/c in the local movie theater! Much of what is playing now are the typical summer blockbusters - sequels of action movies filled with car chases and explosions - not really my kind of thing. So, instead, we watched The Incredibles 2, the sequel to an old favorite animated movie from when our kids were young. Yes, we have now graduated to going to children's movies without children! Just like the first movie, it was clever, funny, action-packed, and a lot of fun.

It's been 14 years since The Incredibles first hit theaters, but the original cast is back in this wonderful sequel. In case you somehow missed the original, it's about a family of superheroes, taking place in a 50's/60's style but modern world where superheroes have been outlawed because of the collateral damage they often cause while saving the day. As in the first movie, mom Helen (played by Holly Hunter) and dad Bob (played by Craig T. Nelson) are trying to act like a normal family and keep their superpowers under wraps. Teenage daughter Violet (voiced by Sarah Vowell) and over-active son Dash (voiced by Huck Milner) also have powers, as does baby Jack Jack (which the family doesn't know yet, though the audience does). The sequel begins with a major crisis, as the Underminer, voiced by John Ratzenberger, causes big problems in the city with his mole-like digging machine. Elastigirl (Helen) and Mr. Incredible (Bob) stop the rampage but not before the Underminer gets away and lots of that collateral damage occurs. Things change, though, when they are approached by a tech mogul named Winston Deaver, played by Bob Odenkirk, and his sister, Evelyn, played by Catherine Keener. They want to change the laws outlawing superheroes and have a plan for Helen and Bob to help them - all they need is some good PR!

As with the first movie, everything here is super-clever (pun intended!) and happens on two levels: one for the kiddos and one for the adults. Helen goes to work as Elastigirl, while Bob stays home with the kids, so there are the expected "inept dad left with the kids" jokes (only this time it's a superhero dad), but everything is executed perfectly, with plenty of suspense and lots of laughs. It's an intriguing plot with lots of twists and turns, and of course, this all-star cast is wonderful in their roles. Our favorite character, superhero costume designer Edna (voiced by Brad Bird), is back and even funnier, along with best super buddy Frozone, voiced by Samuel L. Jackson. Of course, the animation is top-notch, and the settings - a combination of high-tech and 50's/60's style - are a lot of fun. Whether you have kids to bring along or not, The Incredibles 2 is nonstop fun from beginning to end, with the cleverness and humor you expect from Pixar. Oh, and the animated short at the beginning of the movie, Bai, was excellent as well - and right on the mark for two parents with young adult sons like us!

The Incredibles 2 is currently in theaters (click Fandango below to check times and locations near you). Streaming (now available for pre-order) and DVD will be released in October 2018.

TV Tuesday: GLOW

After hearing rave reviews of the Netflix series GLOW for more than a year - and more raves when the second season was recently released - I finally found time to try it and was instantly hooked on this show about a group of women starting a women's wrestling TV program in the 1980's.

Ruth, played by Alison Brie of Community and Mad Men fame, is an out-of-work actress having an affair with a married man and struggling with her life. Her best friend (who she has a serious falling out with in an early episode) Debbie, played by Betty Gilpin, is also an actress who had an ongoing role in a soap opera and is now at home with her baby. Ruth goes to a casting call at an LA gym and realizes it's not a typical acting job. The director, Sam, played by stand-up comic Marc Maron (here with an awesome 80's mustache) is looking for women to star in a new low-budget TV show, GLOW - Gorgeous Ladies of Wrestling. It's meant to be a female-centered spin-off of the popular men's wrestling circuit, with stars like Hulk Hogan. Most of the women hired are a bit reluctant but in need of work, but after a while, they all begin to get into the spirit of it, as they figure out their characters and costumes and learn fake wrestling moves. Along the way, Ruth and the other women gradually get to know each other better.

If you are thinking - like I did this past year - that you're not interested in wrestling, you should still give this show a try. It is really about the women, their lives, and their relationships with each other. The 1980's are perfectly captured here - with the real clothing and hairstyles that we wore back then (as opposed to some of the over-the-top depictions of the 80's we often see on the screen). I noticed Ruth wearing the same Reebok hightops I treasured! But it's more than just a fun recreation of that time; the show also focuses in on issues like women's rights, racism, and equality - not in a hit-you-over-the-head way, but in a way that makes you think. Despite its serious moments, this show is also a LOT of fun to watch with the costumes, the moves, the shows, and the music. It is taking me back to the 80's and making me laugh, smile, and think. I finished season 1 and have just started season 2 (which many viewers say is even better).

GLOW is a half-hour Netflix original program, so it is available solely on Netflix.



Have you watched GLOW yet?

P.S. Ruth also drives my beloved car (that I still drive today!) - a VW convertible, though hers is yellow and mine is red. How could I not love this show?

Weekly Inspiration: Small Joys in Everyday Life

Today's Weekly Inspiration features a book recommendation, and a favorite quote from that book.

This spring, I had the wonderful opportunity to review a new novel, My Ex-Life, by a prolific author I'd never read before, Stephen McCauley. I also interviewed Stephen and thoroughly enjoyed our conversation, and then met him at Booktopia, a book event held in Vermont every May. I absolutely loved the novel, which was engaging and combines insights into human nature and life with plenty of laugh-out-loud humor. And the author was just as warm, funny, and charming as his book. You can read my review here and my interview with Stephen here on the Shelf Awareness website. So, if you enjoy reading fiction, I highly recommend My Ex-Life...and now I am excited to read some of Stephen's earlier novels, too.

I wrote a bunch of quotes from the novel into my Quote Journal - Stephen just has a way with words and many of his sentences and passages are either insightful or hilarious (or sometimes both). Here's the one I want to share with you today that expresses my own views:

"Julie had always believed that even if it's the big, unexpected events (good and bad) that make life memorable and exciting, it's the small, predictable routines that hold life together and make it worth living."         

          - from My Ex-Life by Stephen McCauley

(and if you want to see a sample of Stephen's humor, my review includes one of his humorous quotes!)

I love this sentiment and heartily agree with it. I think this is something I didn't recognize until after my illness (though having kids helped me realize its truth, too). I have especially noticed this in looking back over old photos - the holidays and vacations and big events were wonderful, and I am glad we have so many photos of those, but I wish we had more photos (and video) of just normal daily life when our kids were little.

As for my life now, this statement is especially true of life with chronic illness. The big events are often overwhelming for me and challenging, and I often have mixed feelings - excitement but also dread and fear at the same time. But I look forward every day to the "small, predictable routines" of my daily life - the cup of herbal tea every morning by the window, taking a walk around my neighborhood and admiring the flowers and changing seasons, sitting in my recliner working on a writing assignment, setting my laptop aside at 7:30 pm each night to lie on the couch and enjoy two TV shows with my husband. Rather than being boring, these routines bring me joy!

In fact, I wrote an article for ProHealth (and wrote many times here on my blog) about Finding Joy in Every Day, where I discussed exactly this idea, including my Joy Journal habit. I find it comforting that even when I can't participate in the bigger events - have to cancel out of an evening out or a family weekend - I know that these quiet joys are here for me, every day. I think I appreciate them much more now than when I spent all my time running around before I got sick.

What are the small, predictable routines of your life that bring you joy?

ME/CFS Research Update - July 2018

Busy around here lately - just back from a whirlwind double-reunion (college and family) trip to New York state - but I am trying to post research updates more frequently so that I don't just leave a bunch of open tabs in my browser for weeks!

Research news the past few weeks brings a lot of hope for a better future for ME/CFS patients! A few highlights:

• Possible ME/CFS Diagnostic Test with 84% Accuracy - This is HUGE news out of Columbia University (which has done other ground-breaking ME/CFS research in the past). Studying 50 ME/CFS patients and 50 controls, researchers found 562 metabolites (byproducts of metabolism) that the ME/CFS patients had in common. Combining these results with those of a previous study, they came up with a predictive model that identified the ME/CFS patients with 84% accuracy (that's far better than Lyme testing currently!). Not only do we desperately need a diagnostic test for this disease (population studies estimate that at least 85% of patients are not diagnosed), but this study also adds to the body of knowledge as scientists come to understand our complicated condition better and better. You can read the details of this study here (an article in layman's terms).
• Testing the Microbiome Hypothesis - Also out of Columbia University, Dr. Ian Lipkin (a renowned virologist who has devoted his work to untangling the mysteries of ME/CFS) is testing his theory that the root cause of ME/CFS is in the gut/microbiome. Since ME/CFS is an immune disorder, and much of the immune system is in the GI tract, this theory makes sense. Lipkin's group, The Center for Solutions for ME/CFS, will test this theory as part of a $9.6 million, 5-year research program funded by the National Institutes of Health (NIH). Part 2 of this program will investigate changes in patients' immune systems, using a new technology. This excellent blog post from ME/CFS Research Review  explains all about these two parts of this exciting program. These are the kinds of funds and extensive research that was completely missing from the ME/CFS world just five years ago...look at us now!
• Stanford Study Looks for the Immunological Basis of ME/CFS - And on the opposite coast of the US, Ron Davis has also received a sizeable NIH grant for an extensive study of the immune system dysfunction at the heart of ME/CFS, using cutting-edge technologies at the Stanford Genome Center. Unraveling the specifics of our immune dysfunction is the key to unlocking the mysteries of our complex disease. Ron Davis is at the center of the ME/CFS research community, and this new NIH grant adds to another $6 million from two other sources for his work earlier this year. Things are definitely looking up for the ME/CFS world! You can read a summary of this planned research and/or watch a video explanation in this article from ProHealth.
• New ME/CFS Collaborative Research Center at Harvard Medical School - But wait, there's more! As if Columbia and Stanford weren't impressive enough, The Open Medicine Foundation just funded $1.8 million to Harvard Medical School for a research center for ME/CFS, which further builds the growing integrity of our disease in the medical community. The team there will start with a focus on the muscles, building off the previous work of David Systrom of Harvard in exercise testing of ME/CFS patients. The new center will also set up a Clinical Trials Network at Mass General - clinical trials? A dream come true for ME/CFS patients! You can read more about the new center, the researchers, and their projects in this ProHealth article.

LOTS of good news to share on this Friday afternoon - now you can enjoy your weekend, full of hope for a brighter future!

P.S. I've been nominated for a Patient Leader Hero award by WEGO Health! I would greatly appreciate your support. Just click this link and click on the Endorse Sue Jackson button. It only takes a moment, and your vote of confidence will help me move ahead to the finals. Thank you!

TV Tuesday: Alias Grace

My husband's been traveling a bit lately, so I've been on the lookout for some new shows I can watch on my own (he and I have a long list of shows that we watch together!). One that I am enjoying is Alias Grace, the Netflix mini-series based on the historical novel of the same name by Margaret Atwood (my review of the book is at the link). I enjoyed the intriguing and compelling novel, and so far, the TV series is just as good.

It is based on the true story of Grace Marks, a young woman in Ontario accused of murder in 1843 and sentenced to life in prison at the age of sixteen. As the show opens, we see Grace in prison twenty years later, going to the adjoining Governor's house each day as a servant and returning to the prison each night. Dr. Simon Jordan, an American doctor in the new field of psychiatry, has been brought in by a local group who want to free Grace to assess her mental condition and get behind her amnesia of the events on the day of the murders to find out what really happened. From then, much of the action takes place in flashbacks, as Grace describes for Dr. Jordan, in great detail, her early life, her family's emigration to Canada from Ireland, her first job as a house maid, and her later job at the home where the murders took place. The story emerges bit by bit, with glimpses of Grace both in the past and today in the prison and the Governor's house. It's clear that Dr. Jordan is fascinated by Grace, though her memories of that fateful day remain trapped inside so far.

I'm just a few episodes into the 6-episode series, but I am enjoying it very much. The story has so far stayed close to the book, and it is wonderful to see this intriguing novel brought to life on the screen. While the story is engrossing, part of the appeal of this show (and the book) are the details of life in the 1800's - seeing Toronto as a growing city with muddy roads or the way that poor people lived or the wealthy homes are run with the servants' lives behind the scenes. The settings and costumes are as fascinating as the story. As with the book, the question that runs through the entire story is whether Grace Marks actually committed the murders she is accused of or whether she was an innocent victim? You decide (our book group was split!). Either way, this suspenseful historical fiction will keep you riveted.

Alias Grace is a Netflix original program, so it is available for streaming only on Netflix or you can get the DVD (buy it or borrow from your library).

I've Been Nominated for a Patient Leader Award!

I look forward to the WEGO Health Awards every year because it is a wonderful way to recognize some of the people who have done so much for our patient community! Last year, Jennie Spotila was nominated for a Best in Show Blog award for her excellent Occupy M.E. blog and Tom Kindlan was nominated for a Best in Show: Twitter award (and was a finalist). Both are tireless patient advocates for ME/CFS.

So, I am thrilled to be in such good company, with my nomination this year for a Patient Leader Hero Award!

This blog was nominated several years ago for a Best in Show Blog Award. This year's award nomination means a lot to me because I now spend so much of my time helping other patients, through this blog but also through both local and online support groups. I run groups for Delaware ME/CFS, Teens & Young People with ME/CFS and Related Illnesses, and Parents of Kids, Teens & Young Adults with ME/CFS and Related Illnesses (and participate in other groups). I also spend a lot of time helping patients through e-mail, Twitter, and Facebook and am working on a book on ME/CFS Treatments, based on our own experiences. Helping others has become a huge part of my life, so this award nomination means a lot to me - a big thanks to whoever nominated me!!

Now comes the fun part, where YOU can impact the outcome!

Just visit my WEGO profile and click on the "Endorse Sue Jackson" button to add your endorsement - you just have to enter your name and e-mail address, so it only takes a few seconds to complete. The nominees in each category with the most endorsements will be Finalists. Endorsements are only open until August 17, so click over now! While you're there, you can also stop by to endorse Tom Kindlan, who has again been nominated, this time for a Lifetime Achievement Award, which is well-deserved!

Good luck to all the award nominees in all the categories!

TV Shows We Are Watching - Summer 2018

In looking for a TV show to review today, I realized that I have already reviewed many of the shows we are currently watching or looking forward to this summer. So, here is an overview of some of our favorite shows of summer, with links to prior reviews (including trailers).

My husband and I are currently watching two shows on cable that we were excited to see returning this summer, plus I am watching two network shows on my own:

Humans (BBC/AMC) is a unique sci fi drama set in the near future where there are lifelike androids that act like servants to humans and do menial work. Now, in the third season, many of the "synths" have become conscious (I'll save the surprise as to how and why for you to discover in prior seasons), leading to fear and violence among humans. This is an intense, exciting, and thought-provoking drama that we look forward to each week. Season 1 and season 2 are currently available for free on Amazon, with season 3 episodes starting at $1.99 or available for free On Demand or at the AMC website.

Salvation (CBS) is another sci fi show that started last summer and is back for a second season. The premise is that a giant meteor, large enough to cause a massive extinction event, is headed for Earth, and a small group of scientists and government officials are working hard to figure out how to stop it, with time running out. Of course, there are bad guys who want to take advantage of the impending disaster for their own gain. As the second season starts, word of the meteor has gotten out to the public, causing panic, and a terrorist group has taken control of the rescue efforts. As with many popular TV shows, the science is a bit iffy, but we enjoy this action-packed thriller. Season 1 is available free on Amazon or at CBS All Access. Season 2 is currently airing (3 episodes so far) and is available On Demand and on the CBS website (just those first 3).

Younger (TV Land) is one of my favorite shows, and I look forward to its return every summer! It's a dramedy about a 40-year old single mom who lies about her age to get back into the publishing world, after her 15-year hiatus for motherhood. I know, I know - that doesn't sound very believable that a 40-year old woman could pass as a 26-year old, but Sutton Foster is great in the lead role, with an excellent supporting cast, and the whole show is very well done. Now, in its 5th season, Younger just gets better and better as the lies pile up, and certain people in her life find out the truth. You can watch Younger on Amazon, with season 1 starting at $1.99 an episode or $7.99 a season. All 5 seasons are available for free On Demand (a rarity!) for cable subscribers.

The Bold Type (Freeform, formerly ABC Family) got me hooked last summer, with its first season. The show features three young women just starting out in the world of magazine publishing in NYC. The three millennials all work for a fashion magazine (clearly based on Cosmo) in the first season, though each has a different job and different career aspirations. The show follows their ups and downs with friendship, work, and relationships. It's a lot of fun and visually gorgeous, but it also digs into some serious issues like racism, immigration, and sexual harassment. Season 1 and Season 2 are both available on Amazon, starting at $1.99 an episode or $16.99 a season. A few episodes (including the first two of season 1 if you want to try it out) are available free at the Freeform website, and season 2 is currently available free On Demand for cable subscribers.

And on streaming:

Bosch (Amazon) is a favorite that is back for its 4th season. My husband and I are both big fans of the books, written by Michael Connelly, and love the TV series that brings the books to life, with Titus Welliver perfectly portraying LAPD Detective Harry Bosch. This is a straight-up detective series, with each season the adaptation of one of Connelly's best-selling novels. Season 4 is currently airing, based on the novel Angels Flight. Everything about this show is top-notch, from the cast to the writing to the carefully plotted mysteries. If you want to start back at season 1, all seasons are available free on Amazon Prime.




Orange Is the New Black (Netflix) is coming back for its 6th and final season on July 27. I CAN'T WAIT!!! This is one of my all-time favorite shows, and my husband likes it, too. The trailer for season 6 looks amazing (but poor Suzanne!):



A few that I haven't reviewed yet (but hope to soon):

Goliath (Amazon) is back for its second season. We enjoyed the first season of this legal thriller starring Billy Bob Thornton.

Breaking Bad (originally AMC, now on Netflix and Amazon) - yes, finally! Are we the last people on Earth to discover this show? We spent our 4th of July binge-watching it. I know the plot summary doesn't sound interesting, but it is a great show. Review to come soon, in case there are other late adopters like us.

Alias Grace (Netflix) is adapted from the historical novel by Margaret Atwood, based on the true story of a woman accused of murder in the 1800's. I recently enjoyed the book, so I've started the TV mini-series (2 episodes in so far), and it is very good.

GLOW (Netflix) is another new one for me, though it just started its second season. Based in part on real life, it is about the start of GLOW, Gorgeous Ladies of Wrestling, in the 1980's. I've watched a few episodes so far and am hooked!

There are more, but those are the main shows we are watching so far this summer!

What summer shows are you enjoying or looking forward to their return?

Movie Monday: Lady Bird

After hearing so many accolades (nominated for 199 awards, including 5 Oscars, including Best Picture) of this movie, I was eager to see it, so when my husband was away on business recently, I watched it...and loved it! Lady Bird is a tender, realistic, funny coming-of-age story that focuses on the relationship between a mother and her teen daughter, with top-notch writing and acting.

Saoirse Ronan plays 17-year old Christine, on the cusp of adulthood, unsure what her future holds, and wanting to be called Lady Bird. The acclaimed and award-winning Laurie Metcalf plays her mother, Marion, who wants what's best for her daughter but doesn't always understand her struggles or her dreams. The story follows the relationship between the two of them in Sacramento during Lady Bird's senior year of high school. In the course of the movie, Lady Bird has her first boyfriend, discovers drama club, ditches her best friend for someone cooler and more popular, and struggles with college applications and plans for her future. Through it all, she and her mom are in constant conflict, though she has a very sweet relationship with her dad.

All the rave reviews I heard about this movie were right on-target. It's a perfect combination of warmth, angst, and humor - pretty much the epitome of being a teenager. Metcalf and Ronan are both excellent in their roles as the often-fighting but still loving mother and daughter. Both bring out the complexities of their roles and relationships. While some scenes are sad or angry, humor is perfectly woven through the entire film, making it a joy to watch. By the end, I was rooting for Lady Bird's dreams to come true.

Lady Bird is now out on DVD and is available for streaming free on Amazon Prime.



     DVD:

Weekly Inspiration: You Can Live a Great Life!

My editor at ProHealth, Julie Holliday (also known as the ME/CFS Self-Help Guru - check out her blog at the link) published a wonderful little booklet earlier this year called You Can Live a Great Life! Julie's blog and social media are always filled with positive encouragement for living your best life with chronic illness. In this case, the booklet features advice from 7 different women living with chronic illness...including me! (and also the wonderful author Toni Bernhard).

You can get a copy of the full document, with advice from all 7 writers by signing up for Julie's e-mail at this link.

For a sneak peek, here is the portion that I wrote - Julie sent us all questions and then included some of our answers in the final document. I always enjoy Julie's writing and love that she pulled together such inspiring advice from so many chronic illness writers - there is a wide-range of inspiration here from different perspectives. You can also follow the ME/CFS Self-Help Guru Facebook page - her focus is on self-care and inspiration.

Here's my section:

"In what ways do you consider yourself to be living a great/dream/successful life?
I have worked relentlessly to improve my condition and quality of life by seeking out treatments for ME/CFS. Some things don't help at all, but through trial and error, I have found lots of treatments that each help a little bit, and those bits have added up to signifi- cant improvement!
With that improvement, I have been able to get back to living my life and working toward my goals. Writing is a big part of my life, and I am living my dream of working as a free- lance writer, and gradually increasing my income to help with our family expenses (including medical expenses).
In addition to career, I make sure that my life includes things that bring me joy: spending time outdoors, traveling (with a camper at our own pace!), spending time with my family, and with my friends. All of these things enrich my life.
What is the most empowering thing you have learned whilst creating your dream life or what one piece of advice would you like to share to inspire oth- ers to create for themselves a great life despite chronic illness?
Never give up on improving your condition. Keep trying new treatments. It often takes a lot of trial and error to find the treatments that work best for each person, but it is well worth the time and effort. Since so few doctors understand how to properly treat ME/ CFS, this means that you have to educate yourself and become your own advocate...and often educate your doctor, too!"

"New" ME/CFS Treatments to Consider

This blog post is long overdue! I have been collecting open tabs in my browser with ME/CFS treatments I hadn't heard of before that we might consider trying - it's getting kind of cumbersome, so I figure it is time to summarize these here so I can save and close the tabs!

To be clear, the reason for the quotation marks in the post title is that only one of these treatments is actually something new - the rest are just new-to-me. But I have been studying (and trying!) ME/CFS treatments for 15+ years now and thought I'd heard about everything out there, so this is very exciting to me to have found a few potential new avenues of treatment. My son and I function quite well compared to most ME/CFS patients, thanks to a long list of treatments that have helped us, but we are both still very limited compared to normal, healthy people, so I am always on the look-out for anything else that might help.

I haven't tried any of these myself yet (well, I am just beginning to try the first on this list), so I'm not saying these have worked for us (yet), but I wanted to make you aware that these additional options are out there so that you can talk to your doctor. Don't have a doctor to help treat your ME/CFS yet? Check out these tips and doctor lists to help you find a doctor: both a local primary care doctor who can help with the easier stuff and - if you can manage it - an ME/CFS expert to help with the lesser-known or more complicated treatments. As for treatments, start with this summary of the treatments that have worked best for my son and I over the years - things that have definitely helped us improve, be more active, and live more normal-ish lives. Many of these you can either try on your own or with your primary care doctor.

Now, onto the new-to-me treatments:

Berberine for Yeast Overgrowth & Brain Fog:

Yeast overgrowth indicated by thrush

One of the other parents in our group for parents with sick kids/teens/young adults shared this study of berberine, showing it to be an effective antifungal, when we were discussing treating yeast overgrowth. This has been a chronic problem for both my son and I, due in part to the immune dysfunction inherent in ME/CFS. In fact, yeast overgrowth is very, very common in ME/CFS and can make all of your symptoms much worse. It often causes severe fatigue, flu-like aches, sore throat and mouth, and sometimes very severe brain fog (as do any underlying infections). My son and I already do all of the things listed in this post on Treating Yeast Overgrowth, and it has worked well for us - we are both in pretty good shape now. However, to keep the yeast under control, we have to stick to a strict diet (which my son never does), take loads of probiotics and supplements, and we both take prescription antifungals every day (for years now). I would love to be able to reduce the dose of prescription antifungals or maybe even get off them all together, and it would be amazing not to have to constantly be so careful about diet.

I asked our ME/CFS specialist, Dr. Levine, about berberine for its antifungal properties (as the study explains), and she told me that it's sold as a supplement, so I could try it on my own. She also surprised me by saying that she does sometimes recommend it to patients but for those with severe brain fog... which makes me wonder if those patients have brain fog due to yeast overgrowth! So, I just started taking it this week and will let you know how it goes. It's supposed to lower blood sugar, so I am a bit concerned about that since mine is already low (as is common in ME/CFS). It's also supposed to lower cholesterol and triglycerides, which would be a bonus!



Mestinon
This is actually a very old medication, and one doctor who specializes in exercise intolerance has been using it for years for his patients, but word is just beginning to spread to other ME/CFS specialists and patients. This excellent article about using mestinon to treat ME/CFS exercise intolerance explains how Dr. David Systrom, a pulmonologist at Brigham & Young Hospital in Massachusetts pioneered its use for this purpose. Though he is not an ME/CFS specialist, per se, and is not necessarily familiar with other aspects of the disease, his research and clinical practice has focused on exercise intolerance in all its forms, so he has seen a LOT of ME/CFS patients in his clinic. His work has focused primarily on two underlying reasons for exercise intolerance, both of which are highly relevant to ME/CFS patients: dysautonomia (aka Orthostatic Intolerance) and decreased oxygen uptake during exercise (i.e. our cells can't process oxygen properly).

I would love to backpack again!

Dr. Systrom found that an old drug called Mestinon (pyridostigmine bromide) is effective in treating exercise intolerance in many patients, and he has prescribed it for hundreds of ME/CFS patients over the past several years. This medication promotes better nerve firing, increases blood (and oxygen) flow to the mitochondria in muscles, and increases blood volume - all really great things for ME/CFS patients! Word of Dr. Systrom's work has just begun to spread to the top ME/CFS specialists in the U.S. (who all work cooperatively and share information on treatments). When I asked Dr. Levine about Mestinon, she said she is trying it out on a select few patients and will let me know if it is successful. Since in Dr. Systrom's work, this medication has dramatically improved exercise tolerance in hundreds of ME/CFS patients, this is one I am really excited about. Although I have already greatly improved my (and my son's) exercise tolerance and reduced post-exertional crashes through other treatments, further expanding those limits would definitely be life-changing for us. Stay tuned!

Cortene and CT38:
This is the one treatment on this list that is truly something new. CT38 is a brand-new medication, created by a group of scientists from the biotechnology and drug development fields. It was initially developed to prevent muscle wasting, and it worked well in animal studies but was dropped when the company developing it got out of the field. The scientists who developed it started their own company and named it Cortene. They wanted to find a use for their new drug and discovered ME/CFS in their research. It seems like a perfect fit. This medication targets the stress response and works against inflammation - two huge problems in ME/CFS. It looks like a match made in heaven! They are currently conducting clinical trials for CT38 with ME/CFS patients through Dr. Bateman's clinic - she's one of the top ME/CFS doctors. This could be a major move forward - to date, there is not a single FDA-approved treatment for ME/CFS (though there are plenty of effective off-label treatments in use). This blog post explains all about Cortene's development, history, and what it does. Part 2 explains more of the science behind how it works and why it might help ME/CFS patients. And Part 3 describes the clinical trial, with more details of why they think this drug might work for us.

All great news! I was feeling as if we were plateaued these past several years - we've improved a lot but are still quite restricted (I still can't get through the day without a nap), and I thought we'd tried everything available that isn't crazy expensive. So, having new treatment possibilities to explore is very exciting. I will let you know what we try and what works for us.

Have you tried any of these treatments yet? I would love to hear about your experiences in the Comments section below.