New Study: Gut Bacteria Provides Clues to ME/CFS

The Hype
By now, you have probably heard something about the recent study out of Cornell that was published a month ago which looked at gut bacteria and inflammatory markers in the stool and blood of ME/CFS patients compared to healthy controls. This study was even covered in many mainstream media outlets. I had about five different healthy friends all forward me articles about it! So, why did it take me so long to write about it here?

Well, in short, I was annoyed by the headlines and press accompanying this study. While any mainstream media coverage of real scientific studies of our illness is great, and I am thrilled that my friends thought of me, it was yet another ME/CFS study that was publicized with all the sensationalism of tabloid news. This headline from Science Daily's article on the study was typical:

Chronic Fatigue Syndrome is in Your Gut, Not in Your Head

I can't fault Science Daily because that headline came directly from Cornell's press release. Seriously? Are we still in the "Breaking News: CFS is not all in your head" phase of press coverage?? Come on, people. We've had decades of serious scientific studies showing loads of abnormalities and dysfunction in the immune systems, endocrine systems, and autonomic nervous systems of people with ME/CFS. Why are even academic PR people still acting like its news that ME/CFS has real physiological causes?

The rest of the article and press release were just as bad. The very first paragraph (again, copied directly from Cornell's press release) is: "Physicians have been mystified by CFS...There are no known triggers..."

No known triggers?? Where have these researchers been for the past 30 years? Lots and lots of studies have identified infectious triggers for ME/CFS, and it is well known that most cases of it start that way - there have been studies on mono (Epstein-Barr Virus), Parvovirus B-19, Ross River Virus, and more. The famous Dubbo study first documented this connection, and ME/CFS is even sometimes referred to as Post-Viral Syndrome. In fact, there have even been studies previously on a common gut virus and ME/CFS, identifying enteroviruses (frequent causes of stomach viruses) as a trigger or cause for ME/CFS. The references for that article list many of the other infectious trigger studies previously conducted.

Shouldn't researchers be conducting a thorough literature study of previous studies related to their work before they embark on a new study? Shouldn't research facilities' PR people know what came before their study? Sorry for ranting, but this really makes me angry. If every researcher treats his or her new study like it's the first legitimate study ever done on ME/CFS, then we will never make any progress. OK, rant over.

The Real News
The actual study is interesting and does add to the body of knowledge on ME/CFS, once you strip away the National Inquirer-type headlines. They studied stool and blood samples of about 40 of Dr. Levine's ME/CFS patients and compared the results with about 40 healthy controls. The differences were enough that the researchers could correctly identify 83% of the ME/CFS patients - that's getting close to a usable, non-invasive diagnostic tool. They found there were more markers of inflammation in the blood (no surprise there) and fewer anti-inflammatory bacterial species in the gut of the ME/CFS patients (guess we better keep up those probiotics!). None of this is surprising, since most of us have GI symptoms as a part of ME/CFS, and it is said that about 80% of the immune system is in the GI tract. What's interesting here are the specifics of their work and its potential use in diagnosing ME/CFS - we all know how badly we need some diagnostic tools. You can see the full scientific article here and if you scroll past the early paragraphs of Cornell's press release, the second half of it provides a brief (and understandable) summary of the findings.

So, this is all good news for those of us with ME/CFS. I just wish we could get past the sensationalist headlines and that researchers would look at the whole body of research that's been done instead of just their own study.

Had you heard about this study yet? What was your reaction?

New Article on ProHealth about Chronic Illness & Summer

My latest article on the ProHealth website has been published: Summertime...and the Livin' Is Easy (Or Is It?) - read the full article at the link.

My article is about the unique challenges that this easy-living season can bring for those of us with chronic illness...and also the pleasures of summer that we can still indulge in.

What's the most difficult part of summer for you? And what do you enjoy about this season?

TV Tuesday: Aquarius

My husband and I started watching NBC's show Aquarius last year when it first came out and were hooked. This summer, we have been enjoying season 2, as well. Aquarius is set in 1960's L.A. during the time when Charles Manson was becoming popular and growing his following.

David Duchovny (of X-Files and Californication fame) stars as Detective Sam Hodiak, an L.A. homicide detective who is old-school and plays loose with the rules. One of his co-workers is Brian Shafe, played by Grey Damon, a long-haired cop of the younger generation who is working undercover on a drug case. Claire Holt plays Charmaine Tully, the first female police officer in the precinct, a pretty, young, blonde woman whom no one takes seriously. Hodiak, despite his gruff exterior, sees the potential in both of the young officers, though.

Meanwhile, a 16-year old girl named Emma, played by Emma Dumont, runs away from home and from her parents' constant fighting. She meets a group of other girls her age who bring her to their home. It's basically a hippie commune overseen by a charismatic guy named Charlie Manson. Charlie takes an instant liking to Emma and nicknames her Cherry, and she joins their happy family.

Emma's mother is an old friend (and former girlfriend) of Sam Hodiak's, so she goes to Sam for help in finding their daughter. Her husband has political aspirations, so she wants to keep things out of the news but hopes that Sam will agree to look for their daughter. And that's how Hodiak and Manson first cross paths. Soon Shafe - and later, Charmaine - are going undercover with Manson's group, and trying to find out exactly what is going on at his house. Of course, no one knows at this point just how dangerous Charlie will turn out to be, but they are looking into the drugs and all the runaways he attracts.

The show alternates back and forth between the police officers' work and personal life and what is happening at the Manson house. It's a slow boil. Hodiak is assigned all sorts of cases to work, while he's keeping an eye on Charlie on the side. Manson's followers are growing in number. All of this is set against a perfect 1960's backdrop of fashions, hairstyles, cars, and the civic unrest building in the community over the Vietnam War and race issues.

We have really been enjoying this show, now in the middle of its second season. It's a police drama, in part, but based on a well-known, mystical historical figure at its center. It pulls much of its material from actual history, with the rise of the Blank Panthers, the assassination of Bobby Kennedy, the growing threat of race riots, and of course, Manson's slow but steady growth and descent into madness. In addition, the main characters' personal lives come into the story, as well. It's an engrossing, fascinating story with excellent writing and acting. Duchovny is especially good in the lead role, as is Gethin Anthony as the scarily charismatic but crazy Manson.

The show is currently in the middle of its second season. Both seasons are available on Amazon Prime for $1.99 an episode or $21.99 a season. The first season is available on Netflix for subscribers. Cable On Demand and the NBC website currently have episodes 4 through 7 of the second season (on ours, episode 4 will be coming off on 7/28). It looks like the second half of season 2 will be starting up on July 28.

TV Tuesday: BrainDead

Without a lot of shows to watch during the summer, my husband and I decided to try something new last week. I'd been seeing ads for BrainDead. Frankly, I thought it looked really weird, but it's from the creators of The Good Wife (one of our recently departed favorites!), so we thought we'd give it a try. What followed was one of the oddest hours of television we've ever watched! As strange as it is, though, it is also really, really good - we're hooked!

OK, so try crossing the political drama and satire of House of Cards with the sci fi plot of Invasion of the Body Snatchers, and add in a hefty dose of humor. Got it? No, probably not. This is one show you definitely have to see to understand. Basically, it posits that the reason politicians seem so crazy these days is that a bunch of them have had aliens eat their brains. It makes as much sense as anything else, doesn't it?

Laurel Healy, a young woman who grew up in Washington, DC, reluctantly returns to her hometown to earn some money so that she can return to her real passion: making documentaries about obscure types of music in isolated places. Laurel is not all that happy to be back and really hates politics. The rest of her family, though, are DC-insiders. Her father, Dean, played by Zach Grenier (The Good Wife's David Lee), has worked in politics all his life and agrees to give Laurel the money she needs to finish her current documentary if she will work in her brother's office for 6 months. Her brother, Luke Healy, played by Danny Pino, is a Democratic Senator.

Right from Laurel's first day as Constituent Coordinator, it is as she feared: politics as usual, with back-room deals, extremist views, and power-hungry members of Congress (including her brother). To make matters worse, Congress can't agree on a budget and is about to shut-down the government. To try to avoid that and keep thousands of people in DC working, Laurel agrees to meet with Gareth Ritter, played by Adam Tveit from Graceland, a staffer for Republican Senator Red Wheatus (played hilariously by Tony Shalhoub), who is on the opposite side of the budget crisis.

Meanwhile, something very strange is going on in DC. Some aliens that look like ants have escaped from a meteor that was delivered to the Smithsonian. They crawl into people's heads through their ears and either eat up (and spit out) a good portion of their brains or their brains explode. Really. And to top it all off, Laurel keeps hearing "You Might Think" by The Cars playing.

Yes, it's just as weird as it sounds! But somehow, despite the complete goofiness of the concept, it works. The acting is excellent: Mary Elizabeth Winstead does a great job as smart, good-hearted Laurel, and the rest of the cast is great, too. The writing is top-notch; you can tell it shares a pedigree with The Good Wife. It manages to be a political satire, a sci fi mystery, and a comedy all at once. Oh, and there is even some romance in it, as Laurel and Gareth are clearly attracted to each other but on opposite sides of the aisle. We have now watched three episodes, and it just gets better and better. You have to at least try 2 episodes, minimum, so you can hear the hilarious little "previously on" song they sing at the beginning of the show!

I know it sounds incredibly strange, but you have to trust me on this one. Give it a try - it is oddly compelling and very funny.

BrainDead is currently airing on CBS Mondays at 10 pm and all three of the current episodes are available On Demand (I think episode #1 comes off Demand on 7/24, so hurry up!). All episodes are also available for free on Amazon Prime or for $1.99 an episode for non-Prime members (link below). They are also available on CBS All Access, if you are a member (since when do the networks require membership to watch their shows?).

Movie Monday: Room

I absolutely loved the novel Room by Emma Donoghue when I read it in 2011 (my review at the link). It lived up to all its hype - and more - and kept me captivated. My husband read it and loved it, too. When the movie came out last year, I was dying to see it and hoped to go with some book group friends, but I didn't get a chance while it was in the theater. I finally had my chance last week when my husband and I found it free on Amazon Prime. It was wonderful and loved up to the promise of the book.

The movie follows the book's story quite closely (Emma Donoghue also wrote the screenplay). A young woman, played fabulously by Brie Larson, has been held captive in an 11-foot by 11-foot room for 7 years. During that time, she gave birth to a boy named Jack, played remarkably by young Jacob Tremblay. Ma, as Jack calls her, has done a great job of bringing Jack up under these horrific conditions. Jack was born in the room and has never left it, so he doesn't realize there is anything else. He's happy and healthy, full of fun and very smart. Ma has kept up a nice routine for the two of them, with time for learning, exercise, and play.

As the movie opens, it is Jack's 5th birthday. He is full of questions, bright and curious, and he and Ma enjoy a small celebration. Their captor, known only as Old Nick, comes to visit during the night. Ma has put Jack to bed inside a large wardrobe, as usual, so that he won't know what's going on. Jack is getting older, though. He asks more questions, watches through a crack in the wardrobe, and one night, Old Nick sees him (Ma is usually careful to keep him out of sight). Ma begins to realize that Jack is growing up, and this room is no longer enough. Thus begins a dangerous period of trying to plan an escape from a place she previously thought was inescapable.

Just like the book, the movie is tense and filled with suspense, but it is also warm and tender. Because the story is shown from Jack's perspective, his innocence pervades the tone, keeping it from being too dark or disturbing (though, of course, the situation is still disturbing). It's a completely unique story, filled with hope and love, about healing and moving forward. We both loved it and thought it was an excellent adaptation of the book.

NOTE: If you have not yet read the book and want to, then skip the movie trailer for now - it gives away pretty much the whole story. I've been careful to avoid spoilers in my review here and in my book review.
 
 

Room is currently available for free on Amazon Prime (or available to rent for $4.99 if you don't have a Prime membership) or on DVD.

Weekly Inspiration: 7/17 Are You a Soldier or a Scout?

I haven't had time to watch any TED talks lately (nor much blogging time!), so this morning, with most of the household still asleep, I sought out an interesting one and listened with my earbuds.

I was intrigued by the title of Julia Galef's recent talk, "Why You Think You're Right - Even if You're Wrong." Let's just say I've been accused before of always thinking I am right! Since my husband has the same tendency, it can cause a bit of friction at times, if we are on opposite sides of an issue (for the record, we agree on most of the big stuff, but this tendency can cause arguments about all kinds of trivial things!).

The talk was very interesting - in ways I didn't expect. Galef explains how research has shown that people generally have one of two mindsets: the soldier, certain of his viewpoint & defensive of anything different, and the scout, curious and always interested in new information & learning new things. She weaves in an interesting story from French history to illustrate the two mindsets.

She explains it all far better (and more engagingly) than I can, in just 11 minutes:



What really interested me is how this simple idea applies to so much in our world. Yes, it is very applicable to one-on-one relationships, which is what I was thinking about when I clicked on it. But, as I listened, I couldn't help but think how strongly this concept explains the deep divisions going on in our world today politically - the increasingly nasty upcoming presidential election in the U.S. and the recent Brexit vote in the U.K. are two huge examples.

I also think this concept applies to our lives with chronic illness. First, our illnesses already provide a barrier between us and our loved ones. I still - after 14 years - have many family members who feel uncomfortable with the reality of my illness. With that kind of conflict already in place, the last thing I need is more tension in my personal relationships. This idea of trying to have a Scout mindset and be open-minded can certainly help to improve our personal relationships - and less stress equals feeling better.

Second, for some people, this Soldier mindset might even get in the way of living their best life with chronic illness. As I said, I am something of a Soldier myself at times, but in my case, I think that has helped me with my illness because my mindset is that I can improve, things will get better, and there are treatments out there to help me. This single-minded determination has helped me to not give up when things get rough (as they do), and the Scout in me has pushed me to constantly seek new information and remain open-minded. However, if your Solider beliefs are more negative - I will never improve, things will never get better, I am trapped in this life - than those could certainly have a negative impact on your well-being.

In any case, this is a fascinating talk and has inspired me this Sunday morning to try to be more of a Scout in my personal relationships.

How about you? Are you a Scout or a Soldier or a little of each?

TV Tuesday: The Last Ship

Summer is kind of a low season for TV - especially this year with Graceland cancelled (one of my favorites) - but there is one summer show that we love. The Last Ship just came back for its third season, and it just gets better and better, with an intriguing & unique story, high drama, and a great cast.

The Last Ship begins with a viral pandemic outbreak. The show follows the crew of a Naval Destroyer called the Nathan James, which was on a top-secret research mission in the Arctic when the pandemic hit. In fact, their mission, unbeknownst to them, involved the virus that caused the pandemic. On board their ship is Rachel Scott, a world-famous virologist who needed to go to the Arctic to look for a primordial version of the virus in order to create an effective vaccine. By the time that mission is complete, the whole world has gotten sick, and chaos has broken out.

Rachel finally tells the captain, Commander Tom Chandler, played wonderfully by Eric Dane (who could have guessed that McSteamy from Grey's Anatomy would make such a good military man?), what's going on, both with their mission and with the rest of the world. By now, millions of people have died, including the U.S. President and Vice-President, and Rachel's goal to create a vaccine has become even more important. Having been completely isolated in the Arctic, the crew of the Nathan James is healthy and not at risk as long as they stay out at sea. So, now they are a floating crew of survivors, tasked with nothing less than saving the world.

It's not as simple as Rachel just doing her work to create the vaccine, though, because chaos and anarchy are in full force all over the world. There are evil forces that want to capture Rachel and the vaccine for themselves and keep it from the rest of the world. Most of that happens in the first episode or two! From then on, it is a fight to survive...and to save the world.

My husband and I both love this show. It is an intriguing plot, with lots of twists and turns and plenty of action and suspense. The cast is incredible, and you quickly grow to care about them. The second-in-command, XO Mike Slattery, is played by Adam Baldwin. Plus, there is a full crew of excellent actors. This is truly an ensemble show, though I haven't had any trouble keeping track of the characters. The overall quality of the show is excellent, from the very first episode through the current third season, in which the world has changed dramatically, but the Nathan James is still of central importance. We can't wait to see what happens next!

Seasons 1 and 2 of The Last Ship are available on Hulu (with subscription), through Netflix DVD service (not but streaming), and on Amazon Prime for $1.99 an episode or $14.99 a season. Our Cable on Demand currently has the last 5 episodes of season 2 and all episodes so far (5) of season 3, as does the TNT website.

Movie Monday: Twinsters

Two weeks ago, ALONE in the house for an unheard-of four days, I was choosing a movie to watch. I decided to choose a documentary because it's been a long time since I'd watched one. I found Twinsters on Netflix and thoroughly enjoyed this fateful, mind-bending true story.

Samantha Futerman, a 25-year old actress living in L.A., had had a few significant TV and movie roles and had a growing following for her YouTube videos. In 2013, across the world in France, some young people were enjoying one of Samantha's videos when they noticed that she looked exactly like their friend, Anais Bordier. They watched more of the videos and showed them to Anais; the whole group was astounded by how much the two young women looked alike. Anais did some online searching and discovered that she shared a birthday with Samantha - November 19, 1987 - and that, like her, Samantha was adopted as a baby from South Korea.

Anais reached out to Samantha online - tentatively at first - and the two women began getting to know each other via video chats. The similarities between them were startling, even though Samantha had grown up in America and Anais in France. They contacted an agency that helps adopted children  find their birth parents and found a specialist on twins within the organization who recommended DNA testing, in addition to the adoption research. Eventually, the two young women and their families and friends met face-to-face in London, while they waited for the results of their DNA tests.

I won't give away how it ends, but it is a thoroughly enjoyable journey to watch these two young women get to know each other and find out more about their backgrounds. Samantha and Anais are both very sweet, endearing women, and watching them unravel the secrets of their lives is a joy.

Samantha wrote the documentary herself, and she and her friend, Ryan, directed it. Much of it is put together from real-time video chats between her and Anais, and videos friends and family took when they met. It's a charming and joyful (and fascinating) 90-minute documentary, perfect if you are looking for something light and life-affirming.

Twinsters is available free on Netflix or for $2.99 to rent on Amazon Prime.