Thursday, July 27, 2017

Donate to ME/CFS Research While You Shop - Special Bonus!

I have often touted iGive here on my blog, as a way to painlessly donate to your favorite ME/CFS charity - for research, patient support, advocacy, or whatever is important to you. And this month ONLY (ending on Monday, July 31), if you use this link to sign up for iGive, they will donate an extra $5 to the Solve ME/CFS Initiative (my choice of cause) to help further ME/CFS research.

That's it! All you have to do is click that link, provide your name, zip code (for U.S.), e-mail, and a password to sign up for iGive, and they will give an extra $5 to ME/CFS research. You don't even have to use iGive to shop yet - the bonus is just for signing up! It's a win-win, and it costs you nothing.

Then, anytime you need to purchase something online, just start at iGive (you can add it to your menu bar or create a button), and a percentage of your purchase will be donated to the cause that YOU choose. There are plenty of ME/CFS, fibro, and Lyme related causes to choose from.

It only takes 2 minutes to earn $5 for ME/CFS research, so sign up now! Remember this special bonus only lasts until July 31. Sign up even if you don't have any shopping to do now (or even if you don't ever do any online shopping!). Just think how much we could add to research funds if everyone who reads this signs up!

NOTE: Although iGive includes hundreds of popular online stores, Amazon runs their own, separate charity donation program called Amazon Smile. Click the link to sign up and choose your charity there, too.

Tuesday, July 25, 2017

TV Tuesday: Master of None

A year or two ago, I watched a couple of episodes of Master of None, a Netflix comedy, enjoyed it, and then got caught up in other shows and kind of forgot about it. I recently came back to it and ended up watching all of the first season episodes in quick succession and moving onto season two. It's a smart, funny comedy that is different from most.

Aziz Ansari, an actor and comedian who was on Parks & Recreation, plays a 30-year old Indian American actor (basically himself) living in New York. When he's not meeting with his agent, going on auditions, and taking bit parts in ads and movies, he hangs out with his friends: Arnold, a very tall guy played by Eric Wareheim; Brian, an Asian-American played by Kelvin Yu; and Denise, a black lesbian played by Lena Waithe. Think of of Master of None as a more diverse version of Seinfeld. Like that famed sitcom, there is plenty of amusing banter among friends and funny discussions about trivial things in their lives.

What really sets Master of None apart from other sitcoms, though, is its cleverness and how it delves into important issues in our world that are seldom talked about openly - all while making you laugh. In season one, episode four deals with the racism Dev encounters every day in his acting career, as someone like him of Indian descent (even though he is 100% American) is only offered parts as a convenience store owner, an IT guy, or "the Indian friend." He and his friends sit in a bar talking about how many black people are allowed on a show before it is considered "a black show." It's achingly honest but also hilarious. In episode seven, Dev and the other males have an eye-opening discussion with the women at their table about how they are treated in everyday life, and how their experiences are completely different than those of the males.

I love the honesty and wit of this wonderful show. After watching a few episodes, I was hooked and just wanted to watch all of them! I just finished watching the first episode of season 2 today, which is a unique show, filmed in black and white, chronicling Dev's adventures in Italy, with the feel of an old-time movie. Ansari is warm and endearing as Dev, and the supporting cast is all great, too. Aziz's real-life parents play his parents on the show! Although it is a comedy, it is also a moving drama, following Dev and his friends through relationship ups and downs, career mishaps, and family challenges, with plenty of laughs along the way.

Master of None is a Netflix original program, so it is available for streaming exclusively on Netflix. Seasons 1 and 2 are currently available there. Season 1 is also available on DVD (and season 2 will follow). I hope there will be a season 3!




Thursday, July 20, 2017

Our Story Featured on Facing Forward

I wrote a guest post for the wonderful blog, From This Point. Forward., which is hosted by Mariah. Her blog is all about her life with Rheumatoid Arthritis, as the mother of two adorable and active boys. Her posts cover research and other news about RA (an autoimmune disease), as well as inspiration and tips for living with any kind of chronic illness. Check it out!

Mariah hosts a weekly feature, Facing Forward, where a guest blogger answers questions about his or life with chronic illness. I was honored to be a part of this wonderful feature. You can read my full post here:


In it, I discuss treatments that have worked for my sons and I, challenges we deal with, tips for managing each day, and how to stay positive and keep moving forward.

If you want more details on the treatments that have most helped us, check out my own blog post on Effective Treatments for ME/CFS.

Thanks to Mariah for this wonderful opportunity to be featured on her blog. It's a great blog - hope you enjoy it!

Tuesday, July 18, 2017

TV Tuesday: Sense8

Our 22-year old son was home for a while when the college semester ended, and we had finished up our spring TV shows together (Colony and Travelers) and were waiting for our summer show (Orphan Black!!) to start, so we were searching for something new that he, my husband, and I could all enjoy together. We settled on Sense8, a Netflix show, and quickly got hooked on its intriguing supernatural premise.

The first episode or two of Sense8 is a bit confusing (but stick with it) because a lot of different characters are introduced and there is no connection between them at first. Sun, played by Doona Bae, is a young professional woman in South Korea whose father doesn't recognize her accomplishments because she is female. Jamie Clayton plays Nomi, a trans woman living happily in San Francisco with her partner when things go terribly wrong on Pride Day and she ends up in the hospital. Kala, played by Tina Desai, is a beautiful Indian woman engaged to a very eligible bachelor who she is not certain she is in love with. Riley Blue, played by Tuppence Middleton, is a blue-haired DJ in London who may be in too deep with her drug dealing boyfriend. Max Riemelt plays Wolgang, a young German man struggling with his background as the son of a criminal. Miguel Angel Silvestre plays Lito, a handsome Brazilian actor who is a sex symbol on screen but harbors his own secret in his private life. Will, played by Brian J. Smith, is a practical-minded cop in Chicago who can't make sense of what he's just seen. Finally, Capheus, played by Aml Ameen, is a matatu (van) driver in Nairobi, a jovial man known as Van Damme for his obsession with the actor (and his colorful van's motif) whose mother is seriously ill.

Whew - see what I mean about confusing at first? But within a couple of episodes, you get to know each of these characters better. All eight of them see the same vision at the start of episode one, of a woman, played by Darryl Hannah, in a churchyard. Gradually, after that, they each begin to see the world through one of the other eight's eyes, seemingly transporting through time and space to a world very different from their own. In this way, they begin to become aware of each other, especially when one of them is in trouble or in danger.

We have watched 4 episodes so far, and it is more and more engrossing. Exactly what gifts and powers the eight disparate people possess is still somewhat of a mystery - to the viewers and to the eight "sensates" themselves - but we want to see more to find out what unfolds. Single sentence summaries of the show indicate that there are powerful people who want to stop these eight, but we haven't gotten to that point yet in the plot.

The multi-cultural cast are all very good, and you quickly form a bond with all eight sensates, seeing their challenges and flaws as well as their talents. The action moves around from one character (and one place) to another, but quite soon, they begin interacting with each other, as the story becomes more intricate. I hope I haven't made it sound too complicated because by the end of the second episode, you have a good idea who each character is and how he or she lives. The show also has a wonderful soundtrack (see Amazon link below), and after episode 4, you will be singing "What's Up" for weeks (we were!).

Sense8 is a Netflix original program, so it is available exclusively on Netflix. I see that the first season has 12 episodes, and there are already two seasons on Netflix, so I can't wait to see what happens next! Note that Netflix just announced last month that the show has been cancelled after its second season, with possibly a single 3rd season episode finale in 2018 to wrap things up.



Monday, July 17, 2017

Movie Monday: The Dressmaker

Last week, I reviewed a movie I watched while my husband was away recently: Me Before You, based on the best-selling novel. That same week, I watched another movie that is a book adaptation: The Dressmaker, starring Kate Winslet.

Kate plays Tilly Dunnage, a woman in the 1950's returning for the first time in decades to the small, rural town in Australia where she grew up. It's a tiny, insular town where everyone knows everyone else's business. When Tilly arrives, she finds her mother, Molly (played by Judy Davis) in terrible shape: physically frail, barely cognizant and living in squalor. Tilly, always beautifully dressed and in full make-up, sets to work clearing out and cleaning up the decrepit house. It immediately becomes obvious that Tilly is not well-liked in the town, as townspeople gossip about her return and some dark secret from the past about why she left.

Tilly ignores the gossip and not only takes care of her mother but sets up shop as a dressmaker. She worked in fashion houses in Paris and Milan, so she brings haute couture to the Outback and transforms the plain women of the town, one by one. She is extremely talented and is soon a much-revered dressmaker, though the townspeople still gossip. Details of Tilly's childhood, the reason why she left, and the reason behind her cool reception in town gradually become clear. Tilly really has only one ally in town besides her mother: the handsome Teddy (played by Liam Hemsworth), whose family are also outcasts in town.

Tilly and Teddy become closer, as details of Tilly's and the town's history are slowly revealed, and the women of the town become more and more glamorous. Tilly is not one to forgive and forget, though, and as she remembers how various townspeople wronged her as a child, she plots revenge against each of them.

The tone of this movie is much different than I expected. Rather than a straightforward drama, there is actually a good bit of dark humor and satire here. Yes, there is also tragedy and sorrow, but often there is a tongue-in-cheek aspect to the story. Colors in the film are super-bright and vibrant (especially after Tilly dresses the town's women in gorgeous fabrics) in contrast to the dull sameness of the surrounding countryside and decrepit town. The seemingly sweet story of the transformation of the town's women is underlaid with the dark backstory and Tilly's behind-the-scenes scheming. I was pleasantly surprised by the dark humor and enjoyed the film overall. Kate Winslet is wonderful in it, as are her supporting cast, including Hugo Weaving as the flamboyant, cross-dressing town police officer, who is thrilled with Tilly's fashion sense.

The Dressmaker is currently available on DVD and is available for streaming free for Amazon Prime members (or $3.99 to rent or $12.99 to purchase for non-Prime members). It is only available on DVD through Netflix.



    

Tuesday, July 11, 2017

TV Tuesday: Fleabag

With my husband and sons out of town two weeks ago, I had a quiet five days to myself at home, so I wanted to indulge in some "me time," enjoying something new on TV. I discovered Fleabag, a short British Amazon series. It looked like a funny, sexy comedy - perhaps along the lines of Chewing Gum (which I loved) - but it turned out to also have plenty of depth to it.

Fleabag is adapted from an award-winning play, and its lead actress, Phoebe Waller-Bridge, starred in and wrote both the play and the TV series. She plays an unnamed single woman, living in London, looking for love, and caught up in the crises of her daily life. Her sister, Claire, is seemingly perfect, married to a handsome American, thin and pretty, and with a life that seems perfectly put together. Though they don't have a lot in common, the two sisters do sometimes come together, in grieving for their mother, being disgusted by their inappropriately blunt stepmother (who was/is godmother to the narrator), and rolling their eyes about their inept father.

The narrator, who I guess can be referred to as Fleabag, also has an on-again, off-again relationship with a boring guy named Harry and a string of hilarious encounters (during the off periods) with other guys, including a man she meets on the bus who has teeth like a rabbit and a late-night booty call in the first episode who wants anal sex. Shortly into the first season, we also find out that Fleabag recently lost her best friend and business partner in an accident, which suddenly puts everything else into perspective and adds a significant layer of emotional depth.

The first season is only six half-hour episodes long (as is more the norm in the UK), but there is a lot packed into those three hours of television. Fleabag often looks directly into the camera to share an aside with the audience (or sometimes, just a look that says it all), again reminding me of Chewing Gum. The overall result here is a fascinating main character with interesting supporting characters, moments of laugh-out-loud hilarity, and moments of quiet introspection, too. It's the life of a modern woman, with all of its complexities and challenges (and more laughs than in a typical life!). This mix of humor and real-life emotion reminds me very much of another British Amazon show that my husband and I enjoy, Catastrophe. Just watching the trailer (below) reminded me again of how much I enjoyed this funny, moving, outrageous show - and it's perfect for binging.

The 6 episodes of season 1 are available on Amazon Prime. I was very excited to see that a season 2 is planned for 2018 - I can't wait!



Monday, July 10, 2017

Movie Monday: Me Before You

My husband was away for a week recently, and my sons were on vacation, so I had five days all to myself! A couple of evenings, I watched movies - choosing girly movies that the rest of my male household would never watch with me.  On my first evening alone, I chose Me Before You, a movie adaptation of a novel by JoJo Moyes I have wanted to read for years.

Me Before You is a sweet romance (that's why my husband and sons wouldn't be interested in it!). Sam Claflin plays ruggedly handsome, wealthy Will. At the start of the story, Will is at the top of his game - happy, successful, and engaged to a beautiful woman. On the other side of town, Lou, played by the adorable Emilia Clarke, lives in her childhood bedroom in her parents' house, to help them out. When she loses her job at the local cafe, the whole family is worried about the loss of her income.

Lou finally finds a new job at the huge castle in town (this is England). The wealthy Traynors are looking for a companion to help with their son, who was paralyzed in an accident. You guessed it - that scruffy-looking guy in the wheelchair is Will, but now he is sullen and depressed about the turn his life has taken. He has a muscular physical therapist/caregiver to help with the big stuff, but Will's parents want Lou to spend time with their son, to keep him company and get him re-engaged with life.

The plot from that point on is pretty predictable, but it's still an emotional movie and surprisingly fun. Much of the fun comes from Lou herself, who dresses in bright primary colors, wild patterns, and often wears her hair in braids or little pigtails. She is full of life, always smiling, and a good foil to Will's dark moods. She comes up with a plan to try to show Will that his life can still be full of joy and worthwhile.

As I said, the plotline isn't terribly surprising, but the story is well-executed, warm, and fun. The two main actors are both charismatic and engaging and pull you into their story. I recall hearing some complaints from fans of the novel when the movie first came out, but I can't speak to that since I didn't read the book. I did have one problem with the movie - its ending. I don't want to give away any spoilers, but suffice to say here that complaints from disabled people about the movie's ending and its message are definitely valid. Generally, though, up until that point, I enjoyed it. It made me smile and laugh and - yes, I cried, too. It was a mostly entertaining evening, though I would have preferred a different ending.

Me Before You is currently available on DVD and streaming on Amazon (free for Prime members; others can rent it for $2.99).



    

Friday, July 07, 2017

LDN 2017 Conference Coming in September



I have written often here on my blog about low-dose naltrexone (LDN), a medication that is used in tiny doses to help normalize the immune system in a wide range of medical conditions and diseases, including ME/CFS, fibromyalgia, and Lyme disease. My son and I have both taken LDN for 10 years now, and it has helped us a lot. I felt better - less fatigue, more energy, more alert, improved mental clarity - from the very first morning after I took my first bedtime dose. You can read all about LDN, what it is, how it works, and our experiences with it in this post.

There have been hundreds of research studies on the use of LDN over the past 20+ years (unfortunately, as you might expect from our lack of research funds, none yet on ME/CFS), including some very positive studies on using LDN for fibromyalgia. You can see a long list of LDN research studies, conducted from 1991 through 2013.

So, the reason for this new post is that the LDN Research Trust is hosting its annual LDN Conference in Portland, Oregon, on September 21-24. In addition to attending the conference (which probably few of us can manage), they are providing recorded presentations with pdf downloaded documents via a Livestream option so that anyone, anywhere can watch the presentations of interest to them (at any time - they don't have to be watched live). You can even get Continuing Education Credits from some of the Livestream options.

Some of the presentations included are on the topics of using LDN in:
  • Thyroid disease
  • For children
  • Lyme disease and other tick infections (multiple presentations)
  • Autism Spectrum Disorder (there has been extensive research on LDN for autism in kids)
  • Inflammatory Bowel Disease
  • Celiac Disease
  • Cancer
  • POTS (a type of Orthostatic Intolerance which is an integral part of ME/CFS)
  • Bipolar Disorder
  • Hashimoto's disease
  • Fibromyalgia
  • and more!
For more information on the conference, the Livestream options, and the presentations and speakers, click on the link below:




Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

Sunday, July 02, 2017

New ME/CFS Pediatric Primer Published!

Kids & teens with ME/CFS speak up in DC in 2011
Get your horns and confetti ready - it's time to celebrate! Dr. Peter Rowe, renowned pediatric ME/CFS and OI expert at Johns Hopkins, has teamed up with his colleagues around the world to write comprehensive guidelines on the diagnosis and treatment of ME/CFS in children and teens. This ME/CFS Pediatric Primer has been published in a mainstream medical journal, Frontiers in Pediatrics, where it will be seen by doctors all over the world. This is a HUGE step forward for all of us and should go a long way toward educating both pediatricians and primary care doctors about the care of kids with ME/CFS (and adult patients, too).

The full title of the paper is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer and you can read its full text and share it with your doctor(s) at that link.

The primer itself describes its purpose:
"While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents."

Wonderful! It is a long document, with plenty of detail on both diagnosis and treatment. It explains that few studies have been done on children with ME/CFS but that the guidance in the document is based on what research there is, plus the extensive clinical experience of the authors. It mentions the presence of orthostatic intolerance right in the introduction! It also emphasizes several times that ME/CFS is a physical illness and not a psychological condition and explains over and over that some children and teens may be homebound, in a wheelchair, or even bedridden from ME/CFS. And, of course, it explains in detail WHY you can't "cure" ME/CFS with exercise (GET) or cognitive behavioral therapy (CBT) and why it may be harmful to patients to try.

The primer includes sections on:
  • Etiology and Pathophysiology (that is, how the disease starts, what keeps it going, and its effects on various systems in the body)
  • Adolescent Development
  • Clinical Diagnosis (which includes a very helpful worksheet for doctors to aid in recognizing ME/CFS in kids)
  • Management/Treatment
  • Co-Morbid Conditions (including OI, EDS, food intolerances & allergies & more)
  • Areas of Special Clinical Concern (includes management of severely affected patients)
  • The School System
  • Appendices A through G (which include Fact Sheets for schools, sample doctor's note for school, a more complete discussion of OI, and more)
Overall, it is an excellent document and will provide far better care of pediatric patients than what is currently available.

However, I would have liked to see mention of or more detail on the following treatments to further help young patients (links provided explain more, including how these treatments have helped my son and I):
  • Treating sleep dysfunction - There is a section on sleep dysfunction but no mention of the typical mechanism behind it in ME/CFS (light sleep, mainly in Stages 1 & 2 without enough deep Stage 3 & 4 sleep caused by endocrine dysfunction that causes disruption in normal hormones that provide deep, refreshing sleep). There is a small table listing medications that might help in treating sleep dysfunction, and it does include tricyclic antidrepressants or TCAs (when used in small doses at bedtime, these lose their antidepressant properties but help to increase the hormones necessary for normal, deep sleep). However, the table lists amitriptyline, which many patients including myself find too sedating, and makes no mention of trazodone and nortriptyline, the two milder TCAs that are more commonly used to to effectively treat sleep dysfunction in ME/CFS, including in kids and teens. These two meds have worked beautifully for my son and I for over 12 years and for many other young patients.
  • Treating immune system dysfunction - There is a brief section on this critical topic, but the only treatment mentioned is IVIG, which is very expensive and sometimes difficult for the patient and not always approved by insurance. There is no mention at all of low-dose naltrexone (which I know Dr. Rowe prescribes for some patients) or inosine, two very safe and very cheap approaches to helping to normalize or balance the immune system that have helped my son and I immensely. 
  • Looking for and treating underlying infections - There is a brief mention that antivirals are used sometimes to treat adult ME/CFS patients and that there have been no studies on the use of antivirals for children. The section on co-morbid conditions also mentions the possibility of infections, like Lyme disease. Often, though, underlying infections are a critical component of ME/CFS and diagnosing and treating them can bring dramatic improvements. In people with ME/CFS, the immune system dysfunction that is part of our disease can cause old, dormant infections (that are harmless to most people) to reactivate. The primer does explain that mono (caused by EBV) is a common trigger for ME/CFS in kids and teens, but there is no mention of the fact that treating that initial case of mono with antivirals within the first few years of ME/CFS can bring improvement or even full recovery. And many people with ME/CFS discover that they have tick-borne infections, like Lyme disease, often many years after fruitless treatment of their ME/CFS (my son ended up having 3 tick-borne infections, in addition to his ME/CFS, that we missed for over three years). Experience has shown that searching for and treating these kinds of underlying infections can bring dramatic improvement in patients and return to a more normal life or even full recovery.
  • The prevalence of food intolerances - Dr. Rowe himself authored a study that found that a full 30% of his young ME/CFS patients in the study had developed an intolerance to dairy, so I was surprised that this statistic - backed up by a study - was not included in the primer. There is some vague mention of food intolerances in the section on co-morbid conditions and the section on GI symptoms, but the section on Dietary Management doesn't recommend eliminating common allergic foods on a trial basis. Eliminating diary almost completely eliminated GI symptoms for my son and I. From what is written here, I can imagine kids being put through all kinds of invasive testing for co-morbid conditions when they really just need to eliminate dairy or gluten or other common allergens from their diet.
  • Treating methylation issues - Oddly, one of the references at the end of the primer is to a study on the presence of genetic methylation problems in ME/CFS patients, but there is no mention in the body of the document of methylation at all. There are a few mentions of B12 supplementation (B12 is critical to the methylation process), but no mention of folate or other aspects of methylation. Treating methylation has helped my son and I very much, and I know this approach has helped many other young patients in our Parents group on Facebook.
So, I am a little disappointed that the treatment section either doesn't mention or doesn't include details of all of these treatments that have been crucial in improving the overall condition of my son (and myself) as well as countless other pediatric patients (I lead an online group with over 600 parents from all over the globe, so I hear about what works and what doesn't for their kids). I do understand that the doctors who wrote this document were trying to base their recommendations on studies and were focused on doing no harm, but there aren't very many studies on treatments for ME/CFS (pediatric or adult), and they stated up front that their advice was based in part on clinical experience - and I know patients of Dr. Rowe's that have benefited from everything I have listed here.

All that said, my criticisms are minor. This document provides well thought-out guidelines for any doctor treating pediatric ME/CFS patients and a good starting point. Just the inclusion and explanation of Orthostatic Intolerance alone will provide very helpful information to doctors treating kids with ME/CFS, as treating OI often brings dramatic improvements, especially in kids.

This primer is certainly a giant leap forward from where we are today, with most doctors not even realizing that ME/CFS is a serious disease that can completely incapacitate kids and thinking there are no effective treatments (or worse, thinking that forced exercise is the way to treat ME/CFS).

A big thank you to Dr. Rowe and his team for once again blazing trails for pediatric ME/CFS!