Tuesday, June 28, 2016

TV Tuesday: Wayward Pines

We recently started watching the second season of Wayward Pines on Fox. It's a twisty-turny sci fi thriller, but I'm going to be careful not to tell you too much about the plot. Discovering its secrets one by one is part of its unique charm.

The pilot was directed by M. Night Shyamalan, who is an executive producer of the series, so right away, you know you are in for some super creepy, unexpected surprises, and he doesn't disappoint.

In the first episode, Secret Service Agent Ethan Burke, played superbly by Matt Dillon, is searching for two fellow agents who disappeared about a month ago. He tracks them to a small town in remote Idaho called Wayward Pines, but he gets in a car accident. Ethan wakes up in the hospital and immediately notices something is "off" about the town and its residents. He can't call outside the town, the local police seem completely uninterested in his missing agents, and Sheriff Pope, played by Terrence Howard, tells him he can't leave the town. Back in Seattle, we see that Ethan's wife, Theresa, played by Shannon Sossamon, is worried about her husband and wonders whether he left her for Kate, one of the missing agents and Ethan's former mistress.

Ethan does find Kate in Wayward Pines in that first episode, but she seems to be happily settled in the bucolic town. Nothing makes sense to Ethan, and no one will listen to his urgent pleas that something is wrong. Back in the oddly deserted, quiet hospital, Nurse Pam, played by Melissa Leo, gives off a super-creepy vibe, while Megan, played by Hope Davis, is equally disturbing as the ever-smiling head of the local school. Everything seems strange and unexplainable to Ethan, and it's clear the town's residents aren't going to give him any answers. By the second episode, those eerie feelings are replaced by true fear as Ethan gradually learns more about the town's rules and consequences.

I really don't want to say anything beyond describing the first episode, because like most of M. Night Shyamalan's movies, this show is best discovered on your own, moment by moment, without any spoilers. I can tell you that you will be surprised - again and again - as the town's secrets are gradually revealed.

This is one of the few shows that our college son comes home to watch with us! He, my husband, and I all like it very much, even as it constantly reinvents itself, as its secrets are slowly disclosed. Wayward Pines is a thriller, with plenty of action and suspense. It is also a dystopian sci fi show, with all the elements that we love in those genres. And it is a drama, as the viewers get to know the town's residents and root for the good guys (and boo the evil ones!). The second season (we are 5 episodes into it now) brings even more surprises, as the first season ended with a disaster, and the second season brings in an almost entirely new cast...but it works and is still just as gripping as ever.

Season 2 of Wayward Pines is currently available free On Demand (our cable service shows it available until 3//17) or on the FOX website. It airs Wednesday nights at 9pm Eastern (I sometimes forget that some people still watch TV live when it airs!). Season 1 is available through Netflix DVD service (but not streaming), it looks like it is available on Hulu, and it is $1.99 an episode (or $17.99 for the entire first season) on Amazon Prime (see link below).



Monday, June 27, 2016

Weekly Inspiration: We Are Born for Joy

It's been a few weeks since I've had time for a Weekly Inspiration post. Between my son's high school graduation, and both of our sons running in and out of the house in between their trips, it has been super hectic, noisy & chaotic here! I think I am finally started to get caught up...and am seriously looking forward to a few days this week ALL BY MYSELF!

One of the things I caught up on this weekend was my Quote Journal. If you're a regular reader of my blog, you know that I love to read and often write down quotes from the books I read that I find inspiring.

Today's inspiring book quote is one of my favorites but comes from an unexpected source: Life Expectancy by Dean Koontz. Koontz is best known for his horror novels, which I started reading when I was a teenager. I hadn't read much Dean Koontz in years, but after my dad died a year ago, my husband and I brought home his extensive collection of Stephen King and Dean Koontz books, with the encouragement of his wife. Reading and enjoying books was something special we shared with my dad. Coincidentally, just a week after that, I joined the ME/CFS Book Group on Facebook and found that their next book choice was Life Expectancy by Dean Koontz. It was on my dad's shelf, so I read it with the group and was pleasantly surprised (my review at the link - no spoilers).

Life Expectancy is not horror - like Stephen King, Koontz actually writes a wide variety of novels in lots of different genres. This one was a genre-bending blend of thriller and humor. But I realized last night, while writing down favorite quotes from the book, that it was also thoughtful, introspective, and inspiring! The family at the heart of the novel (who, yes, are being pursued by killer clowns - cue suspense & humor both) is the greatest literary example ever of a loving, joyful, happy family.

Here's what the main character, Jimmy Tock, says toward the end of the novel:
"No one's life should be rooted in fear. We are born for wonder, for joy, for hope, for love, to marvel at the mystery of existence, to be ravished by the beauty of the world, to seek truth and meaning, to acquire wisdom, and by our treatment of others to brighten the corner where we are.

...No one can grant you happiness. Happiness is a choice we all have the power to make. There is always cake."
                    - Jimmy Tock in Life Expectancy by Dean Koontz

That last line is because Jimmy and his dad are bakers, and his family delights in all the wonderful foods - and especially baked goods - they prepare for their daily meals together.

I loved this fictional family, and I loved these words. They perfectly capture my own view of life, a view I have had for many decades but that has been strengthened by my experiences with chronic illness. It's easy, when our lives are filled with exhaustion and pain, to focus only on suffering, but this is a reminder that no matter what happens in our lives (and Jimmy's family endures a LOT in this novel), life is really about wonder, joy, hope, and love.

I often write on this blog about the importance of these positive emotions and experiences, even (especially) in the midst of a life of chronic illness, but this brief quote seems to sum up all of that in one beautiful, succinct passage. I want to pin it on my wall and read it every morning to start my day!

Words to ponder...and to live by.

What books and authors have surprised or inspired you?

Tuesday, June 21, 2016

TV Tuesday: The Fosters


With both of my sons home for summer, TV is very action/thriller-oriented right now (I'm the only female in the household!) and time to watch "my" shows is very limited. So, when I had a rare lunchtime to myself last week and was looking for something to watch, I wanted some "comfort TV." I wanted something that would remind me of the glory days of Parenthood (one of my all-time faves) or my more recent discovery, The Girlfriend's Guide to Divorce (only season 1 is available on Netflix and I finished it). I was thrilled to discover that one of my old favorites is on Netflix - all of its seasons - so I could catch up.

The Fosters is a wonderful family drama set in California. If you think that there's not enough diversity on TV, then this show is for you! Stef and Lena are a lesbian couple with a group of pre-teen and teen kids who are a mixture of natural, adopted, and foster (of multiple races)...and their family keeps growing! Stef, played by Teri Polo (who I just discovered is from Delaware, where we live), works as a police officer. Her ex-husband, Mike (played Danny Nucci), who is also a police officer, lives nearby - he later gets into fostering, too! They had a son together, Brandon (played by David Lambert), who is now in his late teens and lives with Stef and Lena. Lena (played by Sherri Saum), works as vice-principal at a local charter school, where Brandon attends, along with his adopted brother and sister, Jesus (played by Jake T. Austin) and Mariana (played by Cierra Ramirez), who are twins and a year younger. Stef and Lena adopted the twins when they were just toddlers.

Into this mix, in the first episode, comes Callie, a troubled teen just out of Juvie. Callie comes to Stef and Lena on a temporary basis, while the system tries to find her a new foster home. Callie has a single-minded purpose: to get her little brother, Jude, out of his foster home, where their foster father is abusive. Stef insists to Lena that they can't possibly take in any more kids, but after getting to know Callie and Jude, they agree to find a way to add them to their family.

The Fosters is a typical family drama in that awful things keep happening to this poor family! But the show also has a good sense of humor, which keeps it entertaining and not depressing. Additional foster kids come in and out of their lives, and Callie - who has had some terrible experiences in the system - continues to get into trouble, though she is clearly a good kid. You'll be rooting for her from the very first episode. I think what I like best about this show is the quality of the writing and the acting, especially the kids. When I started watching it, I admit to a bit of a bias, thinking that maybe an ABC Family show might not be of very high quality...but I was wrong. Now I am midway into season 3 and absolutely thrilled to have found it available on streaming, so I can get back to it. And I see that season 4 has just started...oh, boy! If you are looking for a replacement for Parenthood or The Gilmore Girls - a warm, funny, moving family drama - this is for you.

The Fosters is an ABC Family show (now called Freeform). Some recent episodes plus new season 4 episodes are available free on Freeform, as well as on cable On Demand. Netflix streaming has all seasons of The Fosters available - yay! It is also available on Amazon for $1.99 an episode or $24.99 for a season (which usually contains 20 or more episodes).

Have you seen The Fosters yet? What's your favorite family drama?

Just watch this trailer - you'll be hooked! Makes me want to watch it all over from the beginning.




Thursday, June 16, 2016

Unique Opportunity To Provide Input to NIH on ME/CFS

Invisible No More!

I posted last week about the opportunity to share your experience using low-dose naltrexone (LDN)with the NIH (US National Institutes of Health). Well, it turns out I posted that a little too quickly without reading all the details. What I said was perfectly accurate, but...this Request for Information (RFI) is NOT just about LDN...they are requesting input from scientists, doctors, advocates, and yes, patients, on all aspects of ME/CFS research.

This is a unique - and very rare - opportunity for patients to provide direct input to the NIH on what kinds of research you think are needed for ME/CFS, what challenges or barriers exist, and what opportunities exist. So, let NIH know - as a patient - what do you need? What priorities do you see for ME/CFS research, what treatments have helped you and need further study to make them more widely available, what needs to happen to make better, faster, more effective ME/CFS research a reality?

Otherwise, the rest of what I said is accurate -  responses to the RFI should be e-mailed and the deadline for input is June 24, 2016 (next Friday).

Here is the content of the e-mail I am sending today - I focused on treatments that have helped my son and I and how they should be more widely available to all ME/CFS patients (and the great need for educating doctors), with some notes at the end about my desire for US research into Rituximab and the need to focus research ultimately on finding a cure. I had a lot to say, but you don't need to write this much - even just a sentence or two will help.

(NOTE: for detailed information on the treatments I discuss in this e-mail and lots of links to more information, see my earlier post on Effective Treatments for ME/CFS).

Here is my e-mail - send yours today & let our voices be heard! 

"I am a patient who has had ME/CFS for over 14 years. Two years after I got sick, on March 1, 2002, both of my young sons, then ages 6 and 10, also got ME/CFS. After 10 years, one of them (whose ME/CFS was always milder) is completely recovered, but the older son, now 22, still has ME/CFS, as do I.

There is an urgent need for treatments to be officially approved in the US for ME/CFS. Having a technical background myself (ChE), I have devoted much of the past 14 years to researching and trying treatments. Although nothing so far helps a lot, we have found quite a few treatments that each help a little, and those add up to greatly improved quality of life and ability to function. Both my son and I are far more functional than most people with ME/CFS, though we are both still clearly disabled by the illness and must live our lives as defined by restrictions & limitations.

I also manage several online and in-person groups for parents whose kids have ME/CFS and so have collected information on treatments from them, as well. Many of their children are housebound or bedridden by this debilitating disease. There is an serious lack - and an urgent need - for more research into treatments for children with ME/CFS. There has never even been an ME/CFS population study of children & teens conducted!

There are millions of Americans - including many, many children and teens - suffering from ME/CFS in the US…and not a single approved treatment.

All of the treatments that have helped my son and I are currently available in the US, and many of them are off-label uses of existing medications. Research is needed to quickly assess the effectiveness of these already existing treatments in order to approve them and make them available to more people. Currently, most of these treatments are either not known by most doctors or doctors are hesitant to prescribe the drugs off-label. We have been fortunate to be able to travel to see ME/CFS experts, but that is not possible for most patients. We are also fortunate to have a primary care physician who understands ME/CFS and was willing to listen when I brought her information, so some of these treatments were prescribed by her. Most SHOULD be readily available through primary care physicians - they are only lacking the knowledge.

ALL of these simple and inexpensive treatments should be made available to ALL patients (and doctors should be trained in their use for treating ME/CFS) - I am including links to more information:
  • Correcting the sleep dysfunction characteristic of ME/CFS using low-doses of tricyclic antidepressants at bedtime to help increase serotonin and/or dopamine, as a healthy body would naturally. This has worked remarkably well for my son and I, providing deep, normal sleep every night for over 10 years now. https://web.archive.org/web/20011201183549/http://www.cfids.org/archives/2001rr/2001-rr3-article01.asp
  • Treating Orthostatic Intolerance with a variety of medications, including (Florinef), midodrine, and various beta blockers at low doses. Note that different people respond differently to beta blockers, so any study on using them for OI should 1) start with an extremely low dose - even 1/2 or 1/4 of the lowest dose available, and 2) allow for patients in the study to try a variety of types and doses (trial and error) to find the one that works best for them. Keeping the dose low helps to prevent additional fatigue from the medication. When given the opportunity to use trial and error to try different types and doses of beta blockers, ME/CFS patients are almost always successful in finding one that helps them. http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
  • Treat immune dysfunction. Immune dysfunction is at the heart of ME/CFS and is the root of many (perhaps all) of its resulting symptoms. Normalizing the immune system can therefore help to improve all symptoms. Two treatments that have worked very well for us and contributed a great deal to our improvement over the years are inosine (available as a supplement in the US) and low-dose naltrexone (LDN), which uses a tiny dose (1 mg - 4.5 mg) of an already long-approved drug, naltrexone. Both of these help to normalize the immune system in ME/CFS but - again - dosing is critical as most ME/CFS patients over-respond to medications. Though LDN is typically thought of with 3 mg or 4.5 mg as ideal doses, many people with ME/CFS do better with only 1 mg or 1.5 mg. Inosine must be used according to a complicated dosing schedule in order for it to remain effective. Dozens & dozens of studies on LDN for immune disorders (but none yet for ME/CFS): http://www.ldnresearchtrust.org/Clinical-trials-studies More info on LDN & how it works: https://www.ldnscience.org/ Inosine - note that this article refers to the name brand Imunovir, sold in Europe & Canada, but we have found the generic inosine supplement to work exactly the same for us: http://www.anapsid.org/cnd/drugs/isoprinosine.html http://www.anapsid.org/cnd/diagnosis/cheneyis.html
  • Treat underlying infections. Perhaps the most important step in improving or even recovering from ME/CFS but one that most doctors do not understand or know about. The immune dysfunction of ME/CFS causes reactivation of latent infections, so these should be treated aggressively with antivirals or antibiotics. Common culprits in ME/CFS include mono (EBV), HHV-6, CMV, enteroviruses, Lyme disease and other tick-borne infections. My own son has 3 different tick infections and has improved greatly with treatment for those. If someone with ME/CFS has high levels of EBV or contracts mono for the first time (as is true of many teen ME/CFS patients), most doctors only know the standard protocol - no treatment and wait for it to pass. But people with ME/CFS - especially children and teens - stand to improve significantly and perhaps even recover with aggressive antiviral treatment using Valtrex or Famvir. Dr. Martin Lerner pioneered much of the existing research into treating underlying infections in ME/CFS with great success: http://www.hhs.gov/advcomcfs/meetings/presentations/presentation_10122010_martinlerner.pdf  http://www.ncbi.nlm.nih.gov/pubmed/23080504
  • Address methylation. For most ME/CFS patients, their methylation cycle is severely dysfunctional, causing problems with energy production, adrenal function, and detox pathways. This last one is probably at least partially responsible for the fact that so many ME/CFS patients can not tolerate even small doses of medications. Often, methylation can be addressed very simply (and cheaply) with B12 folate (specific types) supplementation and results in significant improvement. This was key in my own son's improvement. Dr. Amy Yasko in the UK has written extensively about this: http://www.dramyyasko.com/our-unique-approach/methylation-cycle/  Here in the US, Rich Van Konyenburg (sadly, now deceased) also did some important work in methylation, including a simplified protocol for ME/CFS patients: http://www.prohealth.com/library/showArticle.cfm?libid=17178&site=articles
For more information on all of these treatment approaches and how they have worked effectively for my son and I, see this blog post I wrote: http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html

All of these areas need attention from NIH - to further research the effectiveness of these treatments for ME/CFS (again, keeping in mind that doses must be VERY low for most ME/CFS patients), and even more importantly, to help educate mainstream doctors about the use of these simple treatments to help improve functionality and quality of life in their ME/CFS patients. Right now, the education and information sharing is happening almost exclusively among patients, with almost no knowledge among most doctors of how to treat ME/CFS - even the simplest of facts, like that Orthostatic Intolerance is an integral part of ME/CFS and is easy to treat.

One final note: all of the treatments I mentioned here are currently available using already-approved medications and/or supplements, but the lack is in educating doctors.

There is also a significant need for continuing new research into ways to diagnose ME/CFS, its cause and exact physiology, and more effective treatments. One particular area of current focus is the use of Rituximab for ME/CFS. To date, the only studies that have been done have been in Norway (one is planned in the UK), but the results from Norway have been very promising, with 60% of ME/CFS patients improving significantly or even recovering. The US needs to get moving and do its own patient-based studies to move this research along further and fully investigate any dangers or downsides.

Challenges:
ME/CFS has some significant challenges that have gotten in the way of effective research in the past and could make further research useless if ignored:
  • ME/CFS is a multi-system disease that affects almost every part of the body. The traditional approach of trying to squeeze it into one single category or medical specialty doesn't work.
  • ME/CFS patients tend to over-respond to "normal" doses of medication or supplements (see notes above re: beta blockers and LDN)). Studies that use a single standardized dose to test a treatment are bound to fail. ME/CFS patients need a period of trial and error, starting with the tiniest dose available (often needing to cut pills in halves or even quarters or use a liquid) and only increasing dose as tolerated. Studies should be set up with this understanding.
  • ME/CFS is heterogenous. Different patients have different primary symptoms and respond differently to treatments. Again, allowing for some trial and error in clinical studies would help tremendously, and standardized dosing is certain to fail.
Ultimately, the goal for ME/CFS research should be not just finding treatments that help to improve symptoms a little bit but finding the cause of ME/CFS and a cure so that patients no longer need to live with a lifelong sentence of disability and limitations."


Now, go and write your own e-mail and send it before June 24! Remember, even just a few sentences would help. Let ME/CFS patients' voice be heard!

Tuesday, June 14, 2016

TV Tuesday: Sticthers

Last week, with all of our favorite spring shows wrapping up and June beginning, I looked up start dates for some of our favorites from last summer. I was surprised - and alarmed - to see that one show we loved, Stitchers, had actually come back for its second season in March! Luckily, all of the season two episodes are still On Demand, so we settled in for some binge-watching and are almost finished with season two now.

Stitchers is an ABC Family show (and BTW, did anyone else know that ABC Family has renamed themselves FreeForm? News to me as of 5 minutes ago) that combines a suspenseful crime drama with some sci fi and a hefty dose of character development and drama, too. We were hooked from the first episode.

The show focuses on a secret government program within the NSA. A new technology allows the team to take a recently dead body and "stitch" a live team member's consciousness into its brain in order to retrieve memories. In this way, they hope to use the technology to solve crimes (especially murders) that were previously unsolvable. Maggie, the team's leader and a former covert operative, recruits a young woman named Kirsten to be the one to stitch into bodies. Kirsten has a disorder where she doesn't feel emotions, so her calm, detached demeanor makes her perfect for the job. Other team members include Cameron, a brilliant young scientist; Linus, who handles communications technology; and a local police officer, Detective Fisher, to handle the law enforcement side of things. They also recruit Kirsten's roommate Camille, played by Allison Scagliotti (who we loved on Warehouse 13), to help with the program. All of these characters, except for Maggie and Fisher, are young, brilliant scientists.

Like any crime show, in each episode, there is a new murder or other crime to solve. The difference is that this team looks at regular evidence but also "stitches" into the dead body to recover memories leading up to the death to help them figure out who the culprit(s) are. The show is action-packed and full of suspense, as the team races against time (there is a limited time when stitching is viable) to solve the latest case. In the second episode, viewers find out that Kirsten's father - who disappeared when she was young - was somehow involved in the Stitchers program, and that becomes an on-going plotline as well, as she searches for answers to her own past. In addition to the crime and sci fi elements, there is plenty of character drama, too.

Like I said, we were hooked from the first episode. Admittedly, this is one of those premises where you just have to ignore the supposed technical explanations and go with the flow - this is, after all, science fiction. There are several aspects of the show that you could pick on if you wanted to - especially the youth and attractiveness of the main characters (all brilliant scientists) and the stitching process itself. The character of Kirsten seems cold and unappealing in the first episodes, but her character really grows and develops over the course of two seasons. In fact, all of the characters - and the on-going plot - continue to develop throughout these first two seasons, so this is one of those shows that gets better as it moves forward and benefits from watching at least a few episodes before deciding if you like it. We just chose go with the flow, and we've thoroughly enjoyed the fast-paced, suspenseful episodes and the overall plot arc. We have just a couple of episodes of season two left, and we can't wait to watch them this week!

All episodes of both season 1 and season 2 of Stitchers are currently available for free on the FreeForm (formerly ABC Family) website. We've been watching season 2 for free on our cable On Demand; our cable company has it up until April 24 (hurry and you can binge the whole season like we have!). It is also available on Amazon for $1.99 an episode or $14.99 for a full season (links below).



    

Monday, June 13, 2016

Movie Monday: Captain America: Civil War

I vowed not to watch anymore superhero movies after a glut of them with my husband and two sons a couple of years ago, but I made an exception for this one for several reasons last week: my friends on Pop Culture Happy Hour (one of my fave podcasts) assured me it was one of the better superhero movies, with a fully developed plot; I do enjoy seeing Robert Downey, Jr. in movies; and it happened to be showing at the best time for us in our local theater last week when we went for $5 Tuesdays (a rare event for us to go to the theater!). So, we saw Captain America: Civil War on the big screen.

First, the title is somewhat misleading. Though Captain America does play a large role in this movie, it's not all about him. This is truly an ensemble cast of superheroes. In fact, as the title does accurately depict, it's about a civil war among superheroes.

Apparently, the Avengers created a lot of chaos and damage the last time they saved the world. The world is getting kind of fed up with having to clean up their messes after they swoop in to save the day. In particular, one country, Sokovia, where the latest destruction occurred (see last Avengers movie, apparently) now leads efforts internationally to reign in the superheroes and give them some oversight. In fact, representatives of over 100  countries are gathering in Vienna to sign the Sokovia Accords, which will create a UN panel to oversee the team and determine when and where they should be called in to help.

This causes a rift among the Avengers. Some, including Tony Stark aka Iron Man, played by Robert Downey, Jr., are wracked with guilt over what happened in Sokovia and agree that there should be some oversight of them. Others, led by Steve Rogers aka Captain America, played by Chris Evans, are against any kind of oversight and believe the Avengers should continue as they have been - dispatching themselves whenever and wherever they see a need for their services. The Avengers each choose sides on this conflict and are splintered by the disagreement.

Meanwhile, the building where the Sokovia Accords are to be signed is bombed, and it seems that Bucky Barnes aka Winter Soldier is responsible. Captain America firmly believes that his old war buddy is innocent or was set up, but the Iron Man team thinks he's letting his personal feelings interfere and that they should be  - carefully and responsibly - trying to capture Bucky. As you might have guessed, multiple fights, chases, and battle scenes ensue as the two sides of the Avengers each seek different resolutions, including one really cool battle (even I had to admire it) between the two factions of superheroes, with some extra muscle they each pulled in to help. In fact, the highlight of the movie was when Tony Stark visits a very young Peter Parker, who is just starting out as Spiderman and is mostly unknown, and recruits his help.

That complicated synopsis is just the tip of the iceberg. When PCHH said this movie has plenty of plot behind it, they weren't kidding. It's a very complex plot, and sometimes we weren't entirely following it. In fact, there were a bunch of characters whose superhero names were never spoken during the movie but it was assumed the audience would know (we didn't). This is the downside of skipping a couple of years' of superhero movies; this one, as is true of others, relies heavily on past Avengers' movies. My husband and I kept whispering to each other, "Wait, who is THAT?" There were some characters with a fair amount of screen time whom I didn't know until 10 minutes ago when I looked the movie up on IMDB to write this review!

Our approach was to just go with the flow. We tried not to get annoyed when we didn't know who someone was, and most plot points were eventually explained. We just went along for the ride. And it's quite a ride! Nonstop action, plenty of battles, plus a bit of character development for the more major characters and a good dose of humor. That last element is - for me - what makes the difference between an incredibly boring, barely watchable superhero movie and one that I can enjoy. Of course, there is plenty of humor from Robert Downey, Jr, in his usual wise-cracking mode as Tony Stark, but the best moments in the movie come from a surprising source: Tom Holland as the very young Spiderman, on his first big gig and (over)eager to impress "Mr. Stark."

So, lots of action, a complex plot, and some good laughs - all in all, not a bad way to spend a couple of hours (actually a bit more). And if you are a fan of superhero movies and the Avengers anyway, then certainly, this is a movie you'll love.

[For those in the know, the other superheros in Civil War (and the all-stars who played them) include Black Widow (Scarlett Johanssen), Falcon (Sam Wilson), War Machine (Don Cheadle), Hawkeye (Jeremy Renner), Vision (Paul Bettany), Scarlet Witch (Elizabeth Olsen), Ant-Man (Paul Rudd), and introducing Black Panther (Chadwick Boseman), who will have his own movie later this year.]

Captain America: Civil War is now out in theaters (we are rarely so current on movies!).



Friday, June 10, 2016

Share Your Experience with LDN To Move Research Forward

I received an e-mail today from the LDN Research Trust (LDN = low-dose naltrexone):
"The National Institute of Health in the USA which is the body that grants funds for public research into ME/CFS has put out a "Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)"

They are asking for ideas from individuals as well as bigger groups. The response date is by 24th June so we need to act quickly!

The request can be found at this NIH link.

If you have any experience of LDN for ME/CFS as a user or prescriber please send an email to MECFSRFI@mail.nih.govMECFSRFI@mail.nih.gov Your input would be invaluable."





Low-dose naltrexone (LDN) is a treatment used for all kinds of immune disorders, including ME/CFS, to help normalize the immune system. It is extremely safe, as it is a medication that has been used in large doses of 50 mg (or much more) for many decades, and for this purpose, it is used in tiny doses of only 0.5 mg - 4.5 mg.

My son and I have had great success with LDN. I felt better - with more energy and less fatigue - the very first day after my first bedtime dose! Many people take a bit longer than that, with some trial and error, to find just the right dose for them, but it is a treatment that has helped many people with ME/CFS. For more on our experiences and links to more information on LDN, check out this past LDN blog post.

Please take a moment to use the e-mail link above to share your positive experiences with using LDN for ME/CFS - there have been many dozens of studies proving its effectiveness for many immune disorders, but - no surprise - not a single study yet on LDN and ME/CFS.

Remember the deadline is June 24!

Wednesday, June 08, 2016

New ProHealth Article: Where Is Your Journey Taking You?

My latest article has been published on the ProHealth website (a highly recommended resource for information on ME/CFS, fibro, and Lyme): Where Is Your Journey Taking You?

This article was inspired by a quote I recently read in a novel (which in turn also inspired one of my recent Weekly Inspiration posts here on the blog).

It's all about how this unexpected journey of chronic illness - that none of us saw coming - can result in some equally unexpected positive results. The article recounts some of the positive things that have come out of my own family's struggles and some ideas to help you consider the positives in your own unexpected journey.

Let me know what you think - here or on the ProHealth site. Where Is Your Journey Taking You?

Tuesday, June 07, 2016

TV Tuesday: Humans

Last fall, my husband and I started watching Humans but only got halfway through the season when it was pulled from our cable's On Demand. So, we were thrilled when it was recently added to Amazon Prime! We re-watched the first episode and then realized we didn't remember much and ended up watching the entire season in less than two weeks.

This brilliant joint project between American AMC and British Channel 4 is an engrossing sci fi series with a great cast.  The show is set in London in the present or near future in a world where robots have become so advanced, they are almost impossible to tell apart from humans. These Synthetics or Synths have become an integral part of human life, working at manual jobs, in people's homes as servants, and even working as prostitutes.

In the first episode, we meet a normal suburban family who has just gotten their first Synth. Husband Joe is exhausted by wrangling the three kids and the house while his wife, Laura, works as a lawyer with frequent trips out of town. So, one day on a whim, he buys a Synth to help around the house. They name her Anita, and she is an instant hit with adorable little Sophie. Teenaged Toby is taken with her as well but for entirely different reasons, as he quickly develops a crush on the beautiful feminine Synth. Teen daughter Mattie, though, who is a very skilled computer programmer, is distrustful of the Synth. Worst of all, when Laura returns from her business trip, she is furious that Joe made this decision without her, a bit creeped out to have a Synth in the house, and soon also quite jealous at the way her family comes to depend on Anita.

Meanwhile, we see glimpses into other lives nearby, both Synth and human. George, an elderly man (played by William Hurt), has memory problems and relies on his equally-aging (and malfunctioning) Synth, Odi. The Health Service wants to replace Odi, but he has become like a part of the family to George. We see a pair of police officers who are tasked with investigating any crimes related to Synths (which are rare), and one of them goes home to a handsome Synth physical therapist in his house who is helping his wife recover from a car accident. Most intriguingly, we are introduced to a young man named Leo who seems to have a sort of family made up of Synths that are unlike the typical ones. He refers to a Synth named Max and another named Fred as his brothers, and in the first episode, visits a prostitute Synth named Niska, promising that he is trying to break her out. These unusual Synths that Leo knows seem to be more human-like, even able to feel pain.

Believe it or not, most of that is all packed into the first episode or so! There is a lot going on here, but it all comes together, with surprises and plot twists around every corner. Humans works on two different levels. It's a fast-paced, action-packed sci fi tale about the Synths themselves, their development, and whether or not they might be a danger to humans in some way. At the same time, though, the show also has a more thoughtful, emotional side. It focuses on how the Synths interact with humans (like how George relies on Odi or Laura is jealous of Anita) as well as the relationships  between humans. In addition, woven throughout are intriguing moral questions about the Synths and the ways they are used by humans, especially as we get to know those in Leo's family who seem to be conscious.  It's a compelling and intricate story with many layers that kept us watching every night until we'd finished the first season!

Season 2 of Humans is in production now and due out in 2016 in the UK and 2017 in the US (uh-oh, we may have to re-watch season 1 for a third time!). Season 1 is currently available for free on Amazon Prime. Watching the trailer makes me want to watch the whole season again now!




Monday, June 06, 2016

Movie Monday: A Walk in the Woods

Last week, with most of our favorite TV shows finished with their winter or spring seasons and summer TV shows not yet started, my husband and I decided to watch a movie one night. We chose from among the free movie options on Amazon Prime and settled on A Walk in the Woods, a movie based on Bill Bryson's hilarious memoir of walking the Appalachian Trail with a friend. We had both loved the book and also used to be avid backpackers ourselves. It turns out that those two things kept us from really loving this movie. It was light and pleasant but not much more.

In the movie, Robert Redford plays Bill Bryson (a real-life famous author whose memoirs and nonfiction books are often hilarious and always informative). The movie departs from the book in quite a few ways, so I will focus on the movie's plot here. Faced with aging and attending a friend's funeral, Bill decides to walk the entire Appalachian Trail. His wife, played by Emma Thompson, is not at all happy with his decision and is concerned about his safety, but he can't be dissuaded. He calls every friend he can think of, old and new, to find someone to accompany him, but most of them think he's crazy and have no desire to join his ill-conceived mission. One friend, though, does respond: Stephen Katz, a childhood friend from Iowa, who has had the opposite life that Bill's had, filled with trouble with alcoholism and the law, and never leaving their hometown. Katz is played by Nick Nolte, who is - by far - the highlight of the movie.

So, the two old friends (and I do mean OLD) fly to Georgia and set off on the AT. They hike along, meeting other hikers, encountering a few minor problems, with plenty of beautiful montages of scenes along the AT and some adventures off the trail as well.

I think this movie would probably be far more enjoyable if you have NOT read Bryson's book and if you have no experience of backpacking yourself. For us, the departures from the book made no sense and the two characters' experiences were so far off from reality as to be distracting. For starters, Bryson was in his 40's when he tried hiking the AT, not his 70's. I read that this was Redford's project, though, so obviously, he couldn't play the lead if it were a guy in his 40's. The part that really didn't make sense to us was that the funniest parts of the book don't appear in the movie - all the trouble and challenges Bryson and Katz encountered in trying to hike 10-12 miles a day with heavy packs with absolutely no experience and no preparation at all. In the book and in the movie, Katz was especially out of shape, so this led to some hilarious passages in the book (all told in Bryson's exaggerating style). In the movie, they just jumped right into hiking 10 miles a day carrying packs (which weren't nearly big enough for long-distance backpacking) with very few problems - two out-of-shape men in their 70's! OK, I'm done with with the rant.

So, why is this movie still enjoyable and not a total disaster? Because of Nick Nolte. He's always been a favorite actor of mine, and he does his thing here - acting like the gruff but lovable guy who's always getting into trouble. All of the laughs in the movie are his, and it's fun, as always, to watch him. Overall, the movie (much like the severely airbrushed photo on its cover!) is light and shallow, with a few thoughtful moments toward the end. It has some funny moments but is lacking in the kind of belly laughs induced by the book it is based on. It was a pleasant hour and 45 minutes with a few laughs, but I'm glad it was free! It actually had decent user ratings on Amazon and Redbox, so perhaps we were biased from our own experiences and enjoying the book so much.

A Walk in the Woods is available for streaming free on Amazon Prime and is available on DVD through both Netflix and Redbox.

If you are interested in reading some of Bryson's books, A Walk in the Woods is very funny and definitely recommended, but my favorite of his is The Life and Times of the Thunderbolt Kid, about his childhood in the 50's in Iowa.



         

Friday, May 27, 2016

Physical Therapy For Patients with ME/CFS

Copyright: 123RF Stock Photo
First, to clear up any confusion right away, these are NOT guidelines for using physical therapy as a treatment for ME/CFS. For more information on that topic, see my earlier post New ME/CFS Treatment: Manual Physical Therapy which includes details of a specialized form of manual therapy that uses nerve gliding for ME/CFS patients, to reduce pain and improve stamina.

Instead, this post is about guidelines for when someone who has ME/CFS needs physical therapy for another reason - an injury, post-surgery, specific chronic pain, etc. I recently developed some tendinitis in my right shoulder and, when resting it for several months didn't work, my doctor and I decided I needed physical therapy. I was very worried about getting a physical therapist who wouldn't understand about Orthostatic Intolerance (OI) or exercise intolerance, that I might end up working with someone who would push me too hard, resulting in post-exertional crashes.

To prevent that, I wrote up a simple 2-page set of guidelines for physical therapy when the patient has ME/CFS. The owner of our local PT clinic was thrilled with my summary, and each of the several physical therapists I worked with was very grateful and interested in learning about ME/CFS. I was thrilled by their open, welcoming responsiveness! I was just discharged from PT yesterday, and the whole experience was overwhelmingly positive. The owner of the PT office told me he would add my guidelines to their permanent files, where they keep information on various medical conditions that patients might have.

Here is a link to the pdf file of my document: Guidelines for PT for Patients with ME/CFS (I just learned how to link to a pdf file, so please let me know if there is any problem with this link!). Since it is a pdf file, you should be able to print right from this document and have a nicely formatted 2-page document to share with your physical therapist and/or doctor.


Wednesday, May 25, 2016

#MillionsMissing Awareness Campaign for ME/CFS - TODAY!

Sorry for the late notice (I just can't seem to catch up lately), but today is a worldwide ME/CFS awareness campaign called Millions Missing.

In locations all over the world, people sent their old shoes to Washington, DC, London, and many other global cities to create a vivid picture of how many people are missing from their own lives due to ME/CFS. One of those many protests is shown in the photo above.

There is still time to join in from home. Check out the ME Action website for more information on actions you can take for this global day of protest.

I just used their site to add a Twibbon (an overlay with #MillionsMissing) to my profile pictures on both Twitter and Facebook, and I explained on my Facebook page what it means. Here's what I wrote to my friends and family:

"Today is the #MillionsMissing awareness campaign for ME/CFS, to recognize the millions of people in the US and all over the world who are missing from their lives and/or missing out on favorite activities because of ME/CFS. I am lucky to have found some treatments that help me avoid being completely housebound or bedridden, but I do still miss a lot of my old life, including backpacking, hiking (longer than 1 mile!), running, vigorous exercise, working, and being able to get through a full day without a nap!"

Since my friends and family often see me out in the world, I added an explanation of the things I am missing out on and used a photo showing something I love that I can no longer do (backpacking). For others who aren't even able to leave their homes or beds, the photos of empty shoes are powerful symbols.
 
There are 5 other ways to join in and lend your voice (or a picture of your shoes) - see the link above at ME Action.

You can also read more news and posts on Twitter at #MillionsMissing.

Tuesday, May 24, 2016

TV Tuesday: The Night Manager

This winter, many of my friends in the UK were raving about a new TV series there called The Night Manager and starring Hugh Laurie (of House fame). Alas, repeated checks of Amazon, Netflix, and our cable On Demand showed that it wasn't available here in the US...but now it is! Being broadcast on AMC as a "miniseries event" (I guess that is how they are dealing with the shorter seasons typical in the UK), the first season, with 6 episodes, can now be seen by US viewers, too. We have seen 3 episodes so far and are enjoying this tense spy thriller.

The show is based on the novel of the same name by John le Carré. Jonathan Pine, played by Tom Hiddleston who has been rumored as a possibility for the next James Bond, works at a luxury hotel in Egypt as the night manager. He's happy with this quiet job after years in the military. A gorgeous hotel guest named Sophie attracts his attention. She is the mistress of Freddie Hamid, a notorious criminal who owns much of Cairo. Sophie gives Jonathan an envelope of confidential documents to copy, and when he does so, he sees that they include lists of illegal weapons and chemical warfare agents being sold to Hamid by a company called Ironlast, whose CEO Richard Roper, played by Hugh Laurie, is also a visitor to the hotel. Jonathan turns the documents over to authorities in England (where he is from), but his actions have devastating effects.

Jonathan flees Egypt and becomes night manager at a remote hotel in the Swiss Alps, where - 5 years later - Roper shows up again as a hotel guest with his entourage. A British intelligence agent named Angela Burr, played by Olivia Colman, contacts Jonathan to ask him to go undercover and become a part of Roper's organization. Still feeling guilt over what happened in Cairo and knowing from his military experience what harm this kind of weapons dealing can do, he agrees. From then, there is a complex process to help him get into Roper's inner circle.

It might sound a little bit complicated, but all spy thrillers start out that way, don't they? Once Angela recruits Jonathan, the plot is fairly straightforward. We are on episode three so far (the episodes are longer than usual for US shows, as is typical for the UK). The acting so far has been superb. We'd heard that from others with respect to Hugh Laurie (who here is a charming bad guy, whereas on House he was a good guy with no charm), but Tom Hiddleston is equally as good as the newbie undercover spy. The settings are incredible - gorgeous places all over the world. We are hooked so far and enjoying the suspense and tension.

We have been watching The Night Manager On Demand through our cable provider, as the episodes air on AMC (Tuesdays at 10 pm Eastern Time). They are also available for $1.99 on Amazon.

Have you seen The Night Manager yet? What do you think of it? What other thrillers do you enjoy on TV?




Sunday, May 22, 2016

Weekly Inspiration: Enjoying the Journey

I recently read The Love Song of Miss Queenie Hennessy by Rachel Joyce, an uplifting, funny,
warm story about a woman in hospice at the end of her life, waiting for her friend, Harold, to arrive (and, of course, also waiting to die). This is the companion novel to another excellent book, The Unlikely Pilgrimage of Harold Fry, which I also highly recommend (reviews of both books at the links - no spoilers!).

In the novel, Queenie writes while she waits, and her observations are often so insightful and beautiful that I filled several pages in my Quote Journal with them. Given Queenie's situation in hospice, her insights are almost always relevant to those of us living with chronic illness. I could easily write a post too long for you to read, but I will try to choose just a few of my favorites that feel extra-significant for us.
"You don't get to a place by constantly moving, even if your journey is only one of sitting still and waiting. Every once in a while, you have to stop in your tracks and admire the view, a small cloud and a tree outside your window. You have to see what you did not see before. And then you have to sleep."

I loved this one, and it's a point of view I often write about here on the blog. Just because we are sick - even if we are homebound or bedridden - doesn't mean we have to miss out on what is all around us. Look out your window and watch the changing seasons, the clouds moving across the sky, and listen to the birds. Read wonderful books, watch riveting TV shows, enjoy uplifting movies that make you laugh or cry tears of joy. Look online at photos of beautiful artwork, listen to music that lifts your spirits, read poetry that moves you. There is plenty of joy to be had in life, even if you are currently stuck in one place, feeling in limbo.
"The sky and the sun are always there. It's the clouds that come and go. Stop holding onto yourself, and look at the world around you. ...You're upset. You're frightened. So what can you do? You can't run anymore. Those days are over. You can't make the problem beautiful by dancing. You can't even prune it. Those days are over, too. So, the only thing left for you to do now is to stop trying to fix the problem.

...Don't try to see ahead to the nice bits. Don't try to see ahead to the end. Stay with the present, even if it's not so good. And consider how far you've already come."

This passage also touched me. I think it is easy with these illnesses to fall into the trap of just waiting - for things to get better, for things to change. I know I did in the early years. But your life is still here, right in front of you, even if it is now a much more limited life. It is easy to regret the past or look forward to the future but more challenging (though also far more rewarding) to just live in the present.
"All journeys have secret destinations of which the traveler is unaware."
          - Martin Buber, The Legend of Baal-Shem

This quote was at the start of the novel, and it immediately struck a chord with me. So many positive things have resulted from this unexpected journey of chronic illness (14 years and counting) - things that I never could have foreseen. With three of the four of us sick at home together for many years, our family became very close. We spent a lot of time together and relied on each other for enjoyment, as well as support and care. Now that our sons are both young adults, those bonds that formed during our worst years are still strong.

Just this week, we got together with four other families in our local area - the original members of the local support group I started six years ago. Yes, we still talked about medical issues and traded doctor recommendations and treatment advice over dinner, but these people have become some of our closest friends now. We share an unusual bond - something that no one else can really understand. When we get together, even if we're just talking about trivial things, we always know that the others "get it" without us having to explain. You can refer to needing to lie down in a public place or having to stay home from school or any other things that are a normal part of our lives and see smiling faces and nodding heads instead of looks of pity. We can even laugh together over the horror stories - the clueless doctors or passing out suddenly. They're our people. And they are wonderful, caring, fun people that we never would have met without this illness.

The same goes for all of the people we've met online (yes, I'm talking to YOU!). Helping others has always been important to me (I even chose a career where I felt like I was improving the world), and our experiences with this illness have allowed us to reach out and help hundreds of other people, all over the world. I never would have dreamed of any of this before I got sick, but now it feels like being able to help others makes our own suffering more worthwhile.

So, yes, this journey has brought with it many destinations that I never expected. Of course, if I had a choice, I would prefer that my sons and I had never gotten sick, but this journey has taken us to some pretty amazing places that have enriched our lives in unexpected ways.

Have you read either of these novels? How do you remind yourself to live in the present and enjoy this moment? What unexpected destinations has this chronic illness journey brought you so far?

Please share your experiences in the Comments section - and stop today to remind yourself to live in the moment and notice what is around you!

Tuesday, May 17, 2016

TV Tuesday: The Girlfriend's Guide to Divorce

I just started watching Bravo's The Girlfriend's Guide to Divorce on Sunday (two days ago) when my husband was out of town, and I have already watched 5 episodes!  I am hooked on this smart, funny, sexy drama about three moms experiencing divorce.

Abby McCarthy, played by the talented Lisa Edelstein, is the author of a highly successful series of books called "The Girlfriend's Guide to..." and covering all aspects of being a wife and mother. She and her husband have two kids, adorable little Charlie and snarky teen Lilly. Abby is just about to go on a book tour to promote her latest book (which is all about loving your husband). There's just one problem: she and her husband, Jake, played by Paul Adelstein (Dr. Cooper from Private Practice), are secretly separated, and now it looks like they are headed for divorce.

As Abby's life falls apart, she relies more and more on two divorced moms from her kids' school: the gorgeous, promiscuous, New Age-y Phoebe, played by Beau Garrett, and intense workaholic Lyla, played by Janeane Garofalo (one of my favorite actresses). The three of them try to support each other through all of the challenges of their changing lives. In addition, there's Abby's gay brother, Max, who is caught in the middle because he was friends with Jake before he and Abby married.

It's a very smart, funny, sexy show with a female-centric cast and storyline, all of which is a breath of fresh air. It strikes a perfect balance between drama (the effects of divorce on kids, the legal and financial problems, the mixed feelings) and comedy (trying to date again, dealing with your spouse's much younger lover, the great guy who's a terrible kisser). The cast is all top-notch, with guest stars adding to the star-power. In episode 5, Bernadette Peters guest stars as Lyla's mother - and is wonderful in the role, as you would guess.

If you have some quiet girl time all to yourself, give it a try! I can't wait to see more.

There have been two seasons of The Girlfriend's Guide to Divorce on Bravo so far. Both of them are available for streaming on Netflix. Episodes are $1.99 each or $19.99 for a season, both on Amazon, and cable On Demand (season 1 only).

Have you seen this show yet? What other female-centric shows do you like?



Monday, May 16, 2016

Movie Monday: Stuck in Love

With a very rare evening all alone at home last night, I decided to watch a movie. My selection criteria was a bit odd: free on Netflix or Amazon, about 90 minutes (ish), and something my husband probably wouldn't be thrilled to watch. I quickly paged through dozens of movies under one of the "You might like..." categories on Netflix, checking the time stamps and ratings, and chose Stuck in Love because it was only 96 minutes and had 4 stars. My random selection method worked pretty well, and I enjoyed this warm, funny, thoughtful movie about family and love that follows the romantic experiences of an entire family for a year.

William Borgen, played wonderfully by Greg Kinnear, is a famed novelist and father of two teenagers. William won a prestigious award for his last novel, but hasn't been able to write anything at all since his wife, Tricia (played by Jennifer Connelly), left him for another man two years ago. Instead, he spends his free time tip-toeing around in the bushes outside her house, spying on her and her new husband and looking for signs of trouble in their marriage. When he sets a place for her at their Thanksgiving table at the start of the movie, even his kids tell him he needs to let go and move on.

His son, Rusty, played by Nat Wolff, is also hopelessly in love. He pines after a girl in his high school English class, Kate, who barely knows he is alive and has a jock boyfriend. Rusty also has writing aspirations and loves Stephen King novels. His older sister, Samantha, played by Lily Collins, is home from college for the holiday with big news: at just 19, her first novel is being published, following in her dad's famous footsteps. When it comes to love, though, Samantha takes the opposite approach, having a series of meaningless one-night stands and avoiding love at any cost because she doesn't want to get hurt or end up like her parents. In fact, Samantha hasn't spoken to her mother in over a year and blames her for the break-up and her father's rut.

The movie follows the love lives of the family - and especially William and his two children - for a year. William has quick trysts with a married neighbor, played by Kristen Bell, and tries her advice to start dating again. Rusty takes his dad's advice to get more "life experiences" and takes a chance on telling Kate how he feels. Samantha meets Lou, a really nice guy who wants to be her friend (and more), but she keeps brushing him off and keeping him at arm's length. Meanwhile, William never gives up on his dream that Tricia might still come back to him.

I really enjoyed this romantic comedy that doesn't follow the typical romcom plot line, with its three different but intersecting romantic stories, alongside the love between the family members. It was warm and thoughtful, with plenty of humorous moments. The entire cast was great, especially Greg Kinnear who is one of my favorite actors. The movie also has a wonderful Indie soundtrack - I listened to it on Spotify again this morning! As a bonus, with a whole family of avid readers and writers, there is a thread of books throughout the story - the books they read, the books they share with others, and the books they write. A romantic comedy about a family with a bookish focus? Perfect for me!

Stuck in Love is currently available free on Netflix and for $2.99 on Amazon.




Thursday, May 12, 2016

2016 International ME/CFS Awareness Day!

Today is International ME/CFS Awareness Day...and we can use all the awareness we can get!

I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May 12th is the exception each year. Here is what I am posting on my Facebook wall today for my friends and family:

"Today is International ME/CFS Awareness Day. Most of you know that Jamie and I both have ME/CFS, but you may not know what that means, especially since the U.S. name, Chronic Fatigue Syndrome, is very misleading. ME/CFS is actually a serious & debilitating immune disorder that has dramatically changed our lives the past 14 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives..but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need to get a LOT of extra sleep, I can't get through the day without a nap after lunch, almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. We have found some treatments that each help a little, but nothing helps a lot. We each take 60-70 pills a day, at 6 different times of day. And even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks at a time. A simple infection like bronchitis can knock us out for months. But, we are the lucky ones. Many people with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - even understand what ME/CFS is, so this Awareness Day is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or Lyme which Jamie also has & has similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far!"

Feel free to copy that, edit it to fit your own situation, and share it with your own friends and family.

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on CFS
  4. Our public testimony on pediatric CFS at the 2011 CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day!  Help to spread the word!

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

Wednesday, May 11, 2016

New on ProHealth: What Are You Looking Forward To?

From ProHealth website
My latest article has been published on the ProHealth website, in their Inspiration Corner: What Are You Looking Forward To? You can read the full article at that link.

The title - and the subject - come from a wonderful psychologist I used to see who specialized in chronic illness (her own grown son had ME/CFS). She often asked me what I was looking forward to, and I still use this question now, on my own, to re-center myself and remind myself to look at the bigger picture and focus on the positives in my life. This is actually a good reminder this week in particular because I have been feeling a little down and very overwhelmed.

So, let's see...right now, I am looking forward to...dinner with all four of us home tonight (a rarity now with one son in college); watching an episode of Orphan Black when our college son comes home tonight (our favorite show); reading more of the wonderful novel I am engrossed in, A Tale for the Time Being by Ruth Ozeki; Memorial Day weekend (end of May) when we have absolutely nothing planned; and the week after my son's high school graduation in June, when my husband and I plan to spend a few quiet days camping in Shenandoah National Park.

What are YOU looking forward to?

Tuesday, May 10, 2016

TV Tuesday: Catastrophe

The Amazon Prime original comedy series Catastrophe recently released its second season...and my husband and I devoured its six new episodes in about a week! This is a unique story and one of the funniest comedies we've ever seen.

Rob, played by Rob Delaney, is an American businessman working in the pharmaceutical industry who travels to London for a business trip. Sharon, played by Sharon Horgan, is an elementary teacher living in London and originally from Ireland. The two of them meet during Rob's visit to London and hook up - your classic girl meets boy story. Except that they spend every night together for a week, having wild sex and then Sharon calls Rob a couple of months later in America to tell him she's pregnant.

So, Rob moves to London and the two embark on a real relationship. Of course, they are doing things out of order, dealing with all of the intimacies of having a baby together when they barely know each other. Sharon has Irish parents and a married brother in London, plus some strange-ish friends, and Rob's only friend in London is an obnoxious American party animal named Dave.

In Season 1, they deal with the pregnancy and their impending parenthood, while trying to get to know each other better. In Season 2, the story jumps ahead a few years to see them married and with two young children. Each season is only 6 half-hour episodes, and they go by much too quickly! This show is absolutely hilarious, one of the funniest we have ever seen. In fact, my husband doesn't usually like TV comedies, but this isn't your usual sitcom. For starters, it is seriously R-rated - definitely not one to watch with the kids! The writing is spectacular (the two lead actors also write the show), and the two actors are perfect in their roles, with great chemistry on screen together. The supporting actors are all excellent as well, including Carrie Fisher as Rob's mother. Here's a wonderful interview with the actors/writers.

This has become one of our favorite shows, one that keeps us laughing out loud. Now we have to wait for Season 3 to watch more! I hope Amazon won't make us wait too long.

Since this is an Amazon original program, it is only available on Amazon Prime, for Prime members (though anyone can watch episode 1 for free). I just watched that interview at the link above, which states that you can also watch Catastrophe on Channel 4 in the UK (though it is called an Amazon Original Series, so I'm not sure how that works).



    

Tuesday, May 03, 2016

TV Tuesday: When Good Shows Get Cancelled

My plan for today was to write a full review of You, Me, and the Apocalypse, a funny, suspenseful dramedy that aired on NBC this past fall. I'd been meaning to get to it for a while, and planned to work my way through the 10 episodes of the first season the past few weeks so I could write about it here. I thought it started out just OK, but it grew on me with each episode, as I got to know the characters and became accustomed to its format. It's about a huge comet heading straight for earth, big enough to cause the next big extinction event (ahem, us). As the show starts, the comet is about 30 days away from its impact with earth, and we meet various people around the world coping with the news. Jenna Fischer (Pam from The Office) stars as a kind mom who is in federal prison because she took the fall for her son who hacked the NSA. Rob Lowe plays Father Jude, not-your-usual-priest who has been assigned by the Vatican to find the next messiah (since this seems to be the end of times). And there are lots of supporting actors in all kinds of roles. We know from the opening scenes of the first episode that many of these people from all over the world somehow end up in a bunker together under the London suburb of Slough on the day the comet actually hits...but we don't know how they all end up there together.

So far, so good. Like I said, the show was really growing on me, and I've been enjoying it and looking forward to each episode, as the comet gets closer to earth and time is running out. I've come to care about the main characters, and with just a few episodes left to go in the first season, wanted to know what would happen to them.

Then...BAM! I checked online yesterday and found that the show has been cancelled! This first season is also its last. I invested that time, grew to like it, and then they pulled the rug out from under me. This isn't the first time I've seen a good show get cancelled, and I bet this has happened to you with favorite shows, too.

So, instead of writing a full review of You, Me, and the Apocalypse (though all of its first season is still available On Demand and on Amazon for $1.99 an episode), I decided to instead write about how and why good TV shows get cancelled.

The Washington Post had an interesting article in the fall about how the networks make these seemingly random decisions. For instance, FX puts equal weight on the producers' opinion, the critics, and the public. The article also explains how these decisions are changing with the new ways that people are watching TV, so that networks have to consider not just who is tuning in when the show airs, but how many people are watching it later. Good thing - we don't watch anything when it actually airs anymore!

Here is an actor's perspective about why shows get cancelled, focused on one of the most puzzling cancellations of modern times, Heroes. That show had a huge fan base, but still got the ax. Interestingly, this past fall - 5 years later - it was revived with Heroes Reborn.

And this recent list from TV Cheat Sheet gives a depressing run-down of current shows that might possibly be on the chopping block.

My family has seen many of our favorite shows cancelled after just a single season. Fox in particular seems to chop some amazing shows without giving them much of a chance, but I guess that's show biz! Here are some of our past faves that got the ax:
  • Firefly -  Perhaps the classic example of a fantastic show with a huge fan base that was cancelled too early, this 2002 sci fi show featured Nathan Fillion (of Castle fame) as the captain of a ragtag group of space outlaws. We were late to this one and didn't see it when it first aired but have watched its 14-episode first (and last) season on DVD. At least they made a movie, too! (TV show available free on Amazon Prime).
  • John Doe - Also in 2002, my husband and I really enjoyed John Doe, about a man with no memory who helped police solve crimes while looking for clues to his own identity. They set up a great story in a first season with 22 episodes but then left us hanging.
  • Life on Mars - this unique time-travel show, with Jason O'Mara as a modern NYPD detective who finds himself back in the 1970's, was based on a UK show of the same name and was an outstanding show. It got chopped after just one amazing season (18 episodes), but to their credit, the show's creators hurried up and rewrote the season finale to wrap up the whole show.
  • Terra Nova - Our whole family LOVED this show, about a family on a dying future earth who is sent back 85 million years to prehistoric times, where humans are trying to establish a colony to give themselves a second chance. This one also starred Jason O'Mara (tough luck, Jason). Time travel, adventure, and dinosaurs - what more could you want? Our sons were devastated when it was cancelled after just one excellent season (13 episodes) (available on Netflix).
  • Alkatraz - My son and I loved this show! A unique premise, combining crime show with the paranormal. Prisoners and guards who mysteriously disappeared from Alkatraz in 1963 suddenly begin to reappear in present day, and a secret government group must work quickly to recapture them. This show was SO cool, and we loved seeing our old buddy Jorge Garcia (Hurley from Lost). This captivating show lasted just one season (13 episodes).
  • Awake - In the same season as Alkatraz, my son and I also enjoyed watching Awake, another show with a touch of the supernatural (seeing a pattern here?). Jason Isaacs stars as a father whose life is split into two different realities after a car accident. In one, his wife was killed, and in the other, his son was killed. The primary driver here is wondering whether this is really happening to him or whether he is dreaming (or crazy). We couldn't wait to see more, but it was cancelled after one 13-episode season (my son tells me it is on Netflix!)
  • Believe - My son and I also loved this show (we used to watch a lot of TV together when we were both home sick a lot) about a little girl with special powers who was being hunted by people that wanted to take advantage of her, with Jake McLaughlin (now on Quantico) as a convict tasked with protecting her. Fast-paced suspense plus a supernatural element - we were hooked, but it only lasted one season (13 episodes).
I could go on and on here! So many excellent shows never make it past their first season. We had some favorites that only made it two seasons, too, like Touch and Revolution.

How about you? What were some of our favorites that got cancelled? What would you like to see come back?

(NOTE: All of the above titles are available on DVD (our library has most of them) and some are available on Netflix or Amazon Prime, as noted.)

Terra Nova Trailer (available on Netflix):



Awake Trailer (available on Netflix):