Thursday, June 30, 2016

Stanford ME/CFS Study Looking for Female Participants

Here's a great opportunity to participate in an ME/CFS study at a renowned research facility with one of the top ME/CFS experts in the world. This can help to move research and knowledge forward and might also help you to learn more about your own illness (I'm not sure whether they will be sharing individual results with participants or not). Details and contact info below:

"Recently the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative began recruiting for the neuroendocrine study.

Dr. Jose G. Montoya, Professor of Medicine at Stanford, is conducting a study investigating the endocrine system in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and healthy controls.

He is looking for individuals with ME/CFS to participate in the study.
Participants must be female and 18 ‐ 45 years old.

Participation in the study involves an online questionnaire and two study visits at Stanford with blood draws and endocrine testing.

There is no cost to participate in the study.

Participants will be compensated $200 for completion of the study.

If you are interested in participating or have any questions, please contact the study coordinator, Jill Anderson, at (650) 723-9711.

For general information about participant rights, contact 1‐866-680-2906."

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.
  • 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.
  • 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): More info on LDN & how it works: 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:
  • 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:
  • 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:  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:
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:

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.

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: Stitchers

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 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.