ME/CFS Community Symposium Saturday

This Saturday, September 29, 2018, the Open Medicine Foundation and Stanford University will hold their Second Annual ME/CFS Community Symposium, featuring top experts and doctors in the ME/CFS world, presenting updates on research, diagnosis, and treatment. Anyone, anywhere in the world, can join in via Livestream. Details and registration for Livestream are at the link.

The Working Group already began meeting on Wednesday - 50 top experts from all over the world discussing the latest research in ME/CFS! They will provide updates to patients and anyone else who wants to join on Saturday at the Community Symposium.

I will be away and offline this weekend - finally getting to go camping after 2 cancellations this summer! - so let me know what you hear! The entire thing will also be recorded and available on YouTube afterward (link also on the Symposium website above).

Movie Monday: Ocean's 8

During our mini vacation last weekend in the Berskshires, my husband and I watched a movie in our rental apartment one night: Ocean's 8, an all-female addition to the popular series that began with Ocean's 11 about groups of cons pulling off cool capers.

Sandra Bullock stars as Debbie Ocean, sister to renowned con man Danny Ocean, played by George Clooney in earlier Ocean movies. Debbie has just been paroled from prison, but instead of staying out of trouble, she immediately begins gathering old friends together for an impossible caper: stealing jewels from the Met Gala, the most exclusive celebrity event of the year. First, she recruits her old friend, Lou, played by Cate Blanchett. Their plan involves asking washed-up designer Rose, played by Helena Bonham Carter, to convince big-time celebrity Daphne Kluger, played by Anne Hathaway, to let her "dress her" for the ball, including wearing the most expensive necklace in Cartier's vault. They also recruit jeweler Amita, played by Mindy Kaling, computer whiz Nine Ball, played by Rihanna, talented pickpocket Constance, played by Awkwafina, and soccer mom/fencer of stolen goods Tammy, played by Sarah Paulson. Once they have their team assembled, the fun begins, with each member using her talents to bring their plan to fruition. As in all caper movies, the climax is the event itself, watching the team's plans become reality as they they create illusions, play their roles, and make the impossible happen.

Like the other Ocean's movies before it, this film is just pure fun. The twist of an all-female criminal crew adds to the entertainment, with - as always in this series - a slew of top-name actors playing the lead roles, and quite a few cameos and bit parts by equally big actors and other celebrities (some of them play themselves at the Met Gala). It's fast-paced, action-packed, and oh-so-clever, and we thoroughly enjoyed watching the plan unfold. And, as always, there are some twists in the plot that we never saw coming. All in all, it's straight-up entertainment, with plenty of suspense, laughs, and eye candy.

Ocean's 8 is currently out on DVD and streaming, available on Amazon Prime to rent starting at $4.99.



    

Weekly Inspiration: Coming of Age with Chronic Illness

Back in July, my article, Coming of Age with Chronic Illness, was published on the ProHealth website (at the link). I have reprinted its text in full below.

The article was based in part on our own experiences. Our sons both became ill with ME/CFS in late summer 2004, at ages 6 and 10. The younger one had milder ME/CFS for about 10 years and then recovered completely at 16. Our older son also got Lyme disease plus two other tick infections - which went undiagnosed for over 3 years - at age 12, so his journey has been more difficult. He is now 24 years old and just graduated from college. So, both of our sons came of age with chronic illness, though the younger one was far less affected by it.

I also reached out to an amazing community to get input for the article - our Facebook group, Parents of Kids/Teens/Young Adults with ME/CFS and Related Illnesses. They came up with some wonderful advice and tips that I incorporated into the article - I wish I had though of some of this stuff 10 years ago!

So, if you have kids who are chronically ill, this article is a must-read, with practical advice for helping them to mature and develop, even if they can't leave the house. And if you do have sick kids, you are welcome to join our support group mentioned above. It is solely for parents of sick kids (I use the term "kids" loosely - some of our members' kids are now adults but still dependent or semi-dependent). Just click the Join button for our group and then answer the questions that pop up so we can add you quickly. In the meantime, here's the article:

Coming of Age with Chronic Illness

When a child or teen becomes ill with ME/CFS, fibromyalgia, or tick infections, he or she faces many unique challenges in meeting typical growing-up milestones. My oldest son, now 23, has had ME/CFS since age 10 and three tick infections since age 12, so his illnesses have been an integral part of his coming of age. I have watched him struggle with things that come easy to his peers and fall behind in various ways, all while trying his best to live his life with these devastating conditions.

I asked the members of our Parents’ support group about the biggest challenges young people with chronic illness face as they grow and mature, and they came up with some great ideas to help overcome those challenges:

Isolation
One of the biggest challenges of chronic illness at any age, staying connected is especially important during the formative years. Sick young people are often isolated from friends and spend much of their time with their parents. Some tips for staying connected with peers:

·      Find friends online. Join groups for young people suffering with similar illnesses. Look for others on social media who share your interests. Play your favorite games online.

·      Attend school as much as possible. By law, schools must provide an equivalent education in the “least restrictive environment.” Use an educational advocate to help your young person get what he or she needs: home education plus as much time with peers as is physically possible. One teen could only manage to go to school for lunch and art class, so her accommodations plan allowed that. My son took some classes at home and went to others in person when he was able to.

·      Stay in touch with old friends. Young people can text, message, or talk to friends. My son has spent many days on the couch Snapchatting with friends! Make a standing date with close friends. One girl had to switch schools, but her best friend still came to spend time with her every Friday. We hosted movie nights for my son and his friends – low-key but lots of laughs.

·      Siblings and cousins count, too! Connecting with siblings, cousins, and other family members can help. Don’t limit cousin time just to holidays – our sons have ongoing group chats with their cousins year-round.

Keeping Up with Peers

It is painful for a sick young person to watch his or her classmates (and younger siblings) achieve normal milestones – everything from learning to drive to having a girlfriend or boyfriend – while they feel left behind. This gets even tougher as they get older and friends leave to live on their own, start full-time jobs, and get married.

·      Take time to grieve. Let your young adults grieve for what they are missing. Acknowledge their feelings rather than dismissing them.

·      Work on meeting milestones in their own way. Maybe your son will need lots of 15-minute sessions in the car with mom or dad instead of driver's ed. There are lots of options for keeping up in school, including part-time or full-time homebound instruction and online classes, plus having the school waive all but the most necessary graduation requirements. Even homebound kids can learn how to pay bills online, write checks, and other adult skills.

Having a Purpose

When you are stuck at home, it is hard to feel engaged with the world around you. Try to focus on something outside yourself and find your own unique talents that fit within your limitations. Here are some ideas from other sick young people:

·      Get a pet. Having a pet accomplishes several goals, including caring for someone else, having a purpose, and learning life skills. One girl got a puppy and is helping her parents train him as a service animal.

·      Express yourself artistically. Sick kids can focus on developing talents and expressing themselves, with music, art, or graphic design. Some chronically ill young people post their creations online or even sell them.

·      Find an online audience. One girl started her own YouTube channel at age 12 and has grown it to over 80 thousand subscribers. Take advantage of your own interests in make-up, video games, fashion, or other hobbies and find your audience through social media.

Earning Your Own Money

That first job is a big milestone, an important step toward adulthood plus the exhilarating freedom of earning your own money. There are ways for sick kids to start their own businesses, even from bed!

·      Work as mom or dad's assistant. Teach your young person how to order supplements online, refill medications, pay bills, and do online research and then pay him or her to do some of these tasks. This could lead to a real job as an Electronic Assistant, a hot new field.

·      Turn creative hobbies into cash. Help find markets online for your young person's creations, through eBay, Etsy, and other websites. Search for "turn art into products" for loads of ways to make money from personal creations.

·      Start a small business. The opportunities to make money from home are endless. You can sell products or services, create online courses, and more. Check out the podcast, website, and book Side Hustle School for hundreds of ideas and tips to get started.

·      Apply for disability. Young people who are disabled and unable to earn their own money can apply for disability. One mom said, "It’s not a lot (of money), but giving her some financial independence has been really positive. In a world where she has so little control...this is a bit."

Delayed Development

Two developmental issues to consider: emotional development that comes from interacting with others and the physical development that healthy teens experience. Both can be seriously impacted by chronic illness. Some tips to consider:

·      Socialize as much as possible. See the tips above. Both online and face-to-face socializing will help with emotional development.

·      Be patient and recognize delayed development. Try not to get annoyed when your normally compliant 20-something begins to argue and rebel – these are good signs! He or she was probably too sick as a teen to go through the normal rebellious phase, so it's coming later.

·      See a doctor. These illnesses are known to cause endocrine (i.e. hormone) dysfunction, which sometimes affects development, including moods, growth, and libido. See an endocrinologist to check for primary endocrine disorders that can be treated, like thyroid dysfunction or low growth hormone. Also watch for signs of self-hatred or body dysmorphia – not unusual when you feel like your body is betraying you – that would indicate the need for professional counseling. 

Growing up while struggling with a chronic illness is a double-whammy, but there are things that you and your kids can do to help with development and maturity. In a life that often feels out of control, taking these small steps toward adulthood can make a big difference.

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.