I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
We lost power for a few hours on Saturday, so we escaped to the a/c
in the local movie theater! Much of what is playing now are the typical
summer blockbusters - sequels of action movies filled with car chases
and explosions - not really my kind of thing. So, instead, we watched The Incredibles 2,
the sequel to an old favorite animated movie from when our kids were
young. Yes, we have now graduated to going to children's movies without
children! Just like the first movie, it was clever, funny,
action-packed, and a lot of fun.
It's been 14 years since The Incredibles
first hit theaters, but the original cast is back in this wonderful
sequel. In case you somehow missed the original, it's about a family of
superheroes, taking place in a 50's/60's style but modern world where
superheroes have been outlawed because of the collateral damage they
often cause while saving the day. As in the first movie, mom Helen
(played by Holly Hunter) and dad Bob (played by Craig T. Nelson) are
trying to act like a normal family and keep their superpowers under
wraps. Teenage daughter Violet (voiced by Sarah Vowell) and over-active
son Dash (voiced by Huck Milner) also have powers, as does baby Jack
Jack (which the family doesn't know yet, though the audience does). The
sequel begins with a major crisis, as the Underminer, voiced by John
Ratzenberger, causes big problems in the city with his mole-like digging
machine. Elastigirl (Helen) and Mr. Incredible (Bob) stop the rampage
but not before the Underminer gets away and lots of that collateral
damage occurs. Things change, though, when they are approached by a tech
mogul named Winston Deaver, played by Bob Odenkirk, and his sister,
Evelyn, played by Catherine Keener. They want to change the laws
outlawing superheroes and have a plan for Helen and Bob to help them -
all they need is some good PR!
As with the first movie,
everything here is super-clever (pun intended!) and happens on two
levels: one for the kiddos and one for the adults. Helen goes to work as
Elastigirl, while Bob stays home with the kids, so there are the
expected "inept dad left with the kids" jokes (only this time it's a
superhero dad), but everything is executed perfectly, with plenty of
suspense and lots of laughs. It's an intriguing plot with lots of twists
and turns, and of course, this all-star cast is wonderful in their
roles. Our favorite character, superhero costume designer Edna (voiced
by Brad Bird), is back and even funnier, along with best super buddy
Frozone, voiced by Samuel L. Jackson. Of course, the animation is
top-notch, and the settings - a combination of high-tech and 50's/60's
style - are a lot of fun. Whether you have kids to bring along or not, The Incredibles 2
is nonstop fun from beginning to end, with the cleverness and humor you
expect from Pixar. Oh, and the animated short at the beginning of the
movie, Bai, was excellent as well - and right on the mark for two parents with young adult sons like us!
The Incredibles 2 is currently in theaters (click Fandango below to check times and locations near you). Streaming (now available for pre-order) and DVD will be released in October 2018.
After hearing rave reviews of the Netflix series GLOW for more than a year - and more raves when the second season was recently released - I finally found time to try it and was instantly hooked on this show about a group of women starting a women's wrestling TV program in the 1980's.
Ruth, played by Alison Brie of Community and Mad Men fame, is an out-of-work actress having an affair with a married man and struggling with her life. Her best friend (who she has a serious falling out with in an early episode) Debbie, played by Betty Gilpin, is also an actress who had an ongoing role in a soap opera and is now at home with her baby. Ruth goes to a casting call at an LA gym and realizes it's not a typical acting job. The director, Sam, played by stand-up comic Marc Maron (here with an awesome 80's mustache) is looking for women to star in a new low-budget TV show, GLOW - Gorgeous Ladies of Wrestling. It's meant to be a female-centered spin-off of the popular men's wrestling circuit, with stars like Hulk Hogan. Most of the women hired are a bit reluctant but in need of work, but after a while, they all begin to get into the spirit of it, as they figure out their characters and costumes and learn fake wrestling moves. Along the way, Ruth and the other women gradually get to know each other better.
If you are thinking - like I did this past year - that you're not interested in wrestling, you should still give this show a try. It is really about the women, their lives, and their relationships with each other. The 1980's are perfectly captured here - with the real clothing and hairstyles that we wore back then (as opposed to some of the over-the-top depictions of the 80's we often see on the screen). I noticed Ruth wearing the same Reebok hightops I treasured! But it's more than just a fun recreation of that time; the show also focuses in on issues like women's rights, racism, and equality - not in a hit-you-over-the-head way, but in a way that makes you think. Despite its serious moments, this show is also a LOT of fun to watch with the costumes, the moves, the shows, and the music. It is taking me back to the 80's and making me laugh, smile, and think. I finished season 1 and have just started season 2 (which many viewers say is even better).
GLOW is a half-hour Netflix original program, so it is available solely on Netflix.
Have you watched GLOW yet?
P.S. Ruth also drives my beloved car (that I still drive today!) - a VW convertible, though hers is yellow and mine is red. How could I not love this show?
Today's Weekly Inspiration features a book recommendation, and a favorite quote from that book.
This spring, I had the wonderful opportunity to review a new novel, My Ex-Life, by a prolific author I'd never read before, Stephen McCauley. I also interviewed Stephen and thoroughly enjoyed our conversation, and then met him at Booktopia, a book event held in Vermont every May. I absolutely loved the novel, which was engaging and combines insights into human nature and life with plenty of laugh-out-loud humor. And the author was just as warm, funny, and charming as his book. You can read my review here and my interview with Stephen here on the Shelf Awareness website. So, if you enjoy reading fiction, I highly recommend My Ex-Life...and now I am excited to read some of Stephen's earlier novels, too.
I wrote a bunch of quotes from the novel into my Quote Journal - Stephen just has a way with words and many of his sentences and passages are either insightful or hilarious (or sometimes both). Here's the one I want to share with you today that expresses my own views:
"Julie had always believed that even if it's the big, unexpected events (good and bad) that make life memorable and exciting, it's the small, predictable routines that hold life together and make it worth living."
- from My Ex-Life by Stephen McCauley
(and if you want to see a sample of Stephen's humor, my review includes one of his humorous quotes!)
I love this sentiment and heartily agree with it. I think this is something I didn't recognize until after my illness (though having kids helped me realize its truth, too). I have especially noticed this in looking back over old photos - the holidays and vacations and big events were wonderful, and I am glad we have so many photos of those, but I wish we had more photos (and video) of just normal daily life when our kids were little.
As for my life now, this statement is especially true of life with chronic illness. The big events are often overwhelming for me and challenging, and I often have mixed feelings - excitement but also dread and fear at the same time. But I look forward every day to the "small, predictable routines" of my daily life - the cup of herbal tea every morning by the window, taking a walk around my neighborhood and admiring the flowers and changing seasons, sitting in my recliner working on a writing assignment, setting my laptop aside at 7:30 pm each night to lie on the couch and enjoy two TV shows with my husband. Rather than being boring, these routines bring me joy!
In fact, I wrote an article for ProHealth (and wrote many times here on my blog) about Finding Joy in Every Day, where I discussed exactly this idea, including my Joy Journal habit. I find it comforting that even when I can't participate in the bigger events - have to cancel out of an evening out or a family weekend - I know that these quiet joys are here for me, every day. I think I appreciate them much more now than when I spent all my time running around before I got sick.
What are the small, predictable routines of your life that bring you joy?
Busy around here lately - just back from a whirlwind double-reunion (college and family) trip to New York state - but I am trying to post research updates more frequently so that I don't just leave a bunch of open tabs in my browser for weeks!
Research news the past few weeks brings a lot of hope for a better future for ME/CFS patients! A few highlights:
Possible ME/CFS Diagnostic Test with 84% Accuracy - This is HUGE news out of Columbia University (which has done other ground-breaking ME/CFS research in the past). Studying 50 ME/CFS patients and 50 controls, researchers found 562 metabolites (byproducts of metabolism) that the ME/CFS patients had in common. Combining these results with those of a previous study, they came up with a predictive model that identified the ME/CFS patients with 84% accuracy (that's far better than Lyme testing currently!). Not only do we desperately need a diagnostic test for this disease (population studies estimate that at least 85% of patients are not diagnosed), but this study also adds to the body of knowledge as scientists come to understand our complicated condition better and better. You can read the details of this study here (an article in layman's terms).
Testing the Microbiome Hypothesis - Also out of Columbia University, Dr. Ian Lipkin (a renowned virologist who has devoted his work to untangling the mysteries of ME/CFS) is testing his theory that the root cause of ME/CFS is in the gut/microbiome. Since ME/CFS is an immune disorder, and much of the immune system is in the GI tract, this theory makes sense. Lipkin's group, The Center for Solutions for ME/CFS, will test this theory as part of a $9.6 million, 5-year research program funded by the National Institutes of Health (NIH). Part 2 of this program will investigate changes in patients' immune systems, using a new technology. This excellent blog post from ME/CFS Research Review explains all about these two parts of this exciting program. These are the kinds of funds and extensive research that was completely missing from the ME/CFS world just five years ago...look at us now!
Stanford Study Looks for the Immunological Basis of ME/CFS - And on the opposite coast of the US, Ron Davis has also received a sizeable NIH grant for an extensive study of the immune system dysfunction at the heart of ME/CFS, using cutting-edge technologies at the Stanford Genome Center. Unraveling the specifics of our immune dysfunction is the key to unlocking the mysteries of our complex disease. Ron Davis is at the center of the ME/CFS research community, and this new NIH grant adds to another $6 million from two other sources for his work earlier this year. Things are definitely looking up for the ME/CFS world! You can read a summary of this planned research and/or watch a video explanation in this article from ProHealth.
New ME/CFS Collaborative Research Center at Harvard Medical School - But wait, there's more! As if Columbia and Stanford weren't impressive enough, The Open Medicine Foundation just funded $1.8 million to Harvard Medical School for a research center for ME/CFS, which further builds the growing integrity of our disease in the medical community. The team there will start with a focus on the muscles, building off the previous work of David Systrom of Harvard in exercise testing of ME/CFS patients. The new center will also set up a Clinical Trials Network at Mass General - clinical trials? A dream come true for ME/CFS patients! You can read more about the new center, the researchers, and their projects in this ProHealth article.
LOTS of good news to share on this Friday afternoon - now you can enjoy your weekend, full of hope for a brighter future!
P.S. I've been nominated for a Patient Leader Hero award by WEGO Health! I would greatly appreciate your support. Just click this link and click on the Endorse Sue Jackson button. It only takes a moment, and your vote of confidence will help me move ahead to the finals. Thank you!
My husband's been traveling a bit lately, so I've been on the lookout for some new shows I can watch on my own (he and I have a long list of shows that we watch together!). One that I am enjoying is Alias Grace, the Netflix mini-series based on the historical novel of the same name by Margaret Atwood
(my review of the book is at the link). I enjoyed the intriguing and
compelling novel, and so far, the TV series is just as good.
It
is based on the true story of Grace Marks, a young woman in Ontario
accused of murder in 1843 and sentenced to life in prison at the age of
sixteen. As the show opens, we see Grace in prison twenty years later,
going to the adjoining Governor's house each day as a servant and
returning to the prison each night. Dr. Simon Jordan, an American doctor
in the new field of psychiatry, has been brought in by a local group
who want to free Grace to assess her mental condition and get behind her
amnesia of the events on the day of the murders to find out what really
happened. From then, much of the action takes place in flashbacks, as
Grace describes for Dr. Jordan, in great detail, her early life, her
family's emigration to Canada from Ireland, her first job as a house
maid, and her later job at the home where the murders took place. The
story emerges bit by bit, with glimpses of Grace both in the past and
today in the prison and the Governor's house. It's clear that Dr. Jordan
is fascinated by Grace, though her memories of that fateful day remain
trapped inside so far.
I'm just a few episodes into the
6-episode series, but I am enjoying it very much. The story has so far
stayed close to the book, and it is wonderful to see this intriguing
novel brought to life on the screen. While the story is engrossing, part
of the appeal of this show (and the book) are the details of life in
the 1800's - seeing Toronto as a growing city with muddy roads or the
way that poor people lived or the wealthy homes are run with the
servants' lives behind the scenes. The settings and costumes are as
fascinating as the story. As with the book, the question that runs
through the entire story is whether Grace Marks actually committed the
murders she is accused of or whether she was an innocent victim? You
decide (our book group was split!). Either way, this suspenseful
historical fiction will keep you riveted.
Alias Grace is a Netflix original program, so it is available for streaming only on Netflix or you can get the DVD (buy it or borrow from your library).
I look forward to the WEGO Health Awards every year because it is a wonderful way to recognize some of the people who have done so much for our patient community! Last year, Jennie Spotila was nominated for a Best in Show Blog award for her excellent Occupy M.E. blog and Tom Kindlan was nominated for a Best in Show: Twitter award (and was a finalist). Both are tireless patient advocates for ME/CFS.
So, I am thrilled to be in such good company, with my nomination this year for a Patient Leader Hero Award!
This blog was nominated several years ago for a Best in Show Blog Award. This year's award nomination means a lot to me because I now spend so much of my time helping other patients, through this blog but also through both local and online support groups. I run groups for Delaware ME/CFS, Teens & Young People with ME/CFS and Related Illnesses, and Parents of Kids, Teens & Young Adults with ME/CFS and Related Illnesses (and participate in other groups). I also spend a lot of time helping patients through e-mail, Twitter, and Facebook and am working on a book on ME/CFS Treatments, based on our own experiences. Helping others has become a huge part of my life, so this award nomination means a lot to me - a big thanks to whoever nominated me!!
Now comes the fun part, where YOU can impact the outcome!
Just visit my WEGO profile and click on the "Endorse Sue Jackson" button to add your endorsement - you just have to enter your name and e-mail address, so it only takes a few seconds to complete. The nominees in each category with the most endorsements will be Finalists. Endorsements are only open until August 17, so click over now! While you're there, you can also stop by to endorse Tom Kindlan, who has again been nominated, this time for a Lifetime Achievement Award, which is well-deserved!
Good luck to all the award nominees in all the categories!
In
looking for a TV show to review today, I realized that I have already
reviewed many of the shows we are currently watching or looking forward
to this summer. So, here is an overview of some of our favorite shows of
summer, with links to prior reviews (including trailers).
My
husband and I are currently watching two shows on cable that we were
excited to see returning this summer, plus I am watching two network
shows on my own:
Humans
(BBC/AMC) is a unique sci fi drama set in the near future where there
are lifelike androids that act like servants to humans and do menial
work. Now, in the third season, many of the "synths" have become
conscious (I'll save the surprise as to how and why for you to discover
in prior seasons), leading to fear and violence among humans. This is an
intense, exciting, and thought-provoking drama that we look forward to
each week. Season 1 and season 2 are currently available for free on Amazon, with season 3 episodes starting at $1.99 or available for free On Demand or at the AMC website.
Salvation(CBS)
is another sci fi show that started last summer and is back for a
second season. The premise is that a giant meteor, large enough to cause
a massive extinction event, is headed for Earth, and a small group of
scientists and government officials are working hard to figure out how
to stop it, with time running out. Of course, there are bad guys who
want to take advantage of the impending disaster for their own gain. As
the second season starts, word of the meteor has gotten out to the
public, causing panic, and a terrorist group has taken control of the
rescue efforts. As with many popular TV shows, the science is a bit
iffy, but we enjoy this action-packed thriller. Season 1 is available free on Amazon or at CBS All Access. Season 2 is currently airing (3 episodes so far) and is available On Demand and on the CBS website (just those first 3).
Younger
(TV Land) is one of my favorite shows, and I look forward to its return
every summer! It's a dramedy about a 40-year old single mom who lies
about her age to get back into the publishing world, after her 15-year
hiatus for motherhood. I know, I know - that doesn't sound very
believable that a 40-year old woman could pass as a 26-year old, but
Sutton Foster is great in the lead role, with an excellent supporting
cast, and the whole show is very well done. Now, in its 5th season, Younger just gets better and better as the lies pile up, and certain people in her life find out the truth. You can watch Younger on Amazon, with season 1
starting at $1.99 an episode or $7.99 a season. All 5 seasons are
available for free On Demand (a rarity!) for cable subscribers.
The Bold Type
(Freeform, formerly ABC Family) got me hooked last summer, with its
first season. The show features three young women just starting out in
the world of magazine publishing in NYC. The three millennials all work
for a fashion magazine (clearly based on Cosmo) in the first
season, though each has a different job and different career
aspirations. The show follows their ups and downs with friendship, work,
and relationships. It's a lot of fun and visually gorgeous, but it also
digs into some serious issues like racism, immigration, and sexual
harassment. Season 1 and Season 2
are both available on Amazon, starting at $1.99 an episode or $16.99 a
season. A few episodes (including the first two of season 1 if you want
to try it out) are available free at the Freeform website, and season 2 is currently available free On Demand for cable subscribers.
And on streaming:
Bosch
(Amazon) is a favorite that is back for its 4th season. My husband and I
are both big fans of the books, written by Michael Connelly, and love
the TV series that brings the books to life, with Titus Welliver
perfectly portraying LAPD Detective Harry Bosch. This is a straight-up
detective series, with each season the adaptation of one of Connelly's
best-selling novels. Season 4 is currently airing, based on the novel Angels Flight.
Everything about this show is top-notch, from the cast to the writing
to the carefully plotted mysteries. If you want to start back at season 1, all seasons are available free on Amazon Prime.
Orange Is the New Black
(Netflix) is coming back for its 6th and final season on July 27. I
CAN'T WAIT!!! This is one of my all-time favorite shows, and my husband
likes it, too. The trailer for season 6 looks amazing (but poor
Suzanne!):
A few that I haven't reviewed yet (but hope to soon):
Goliath (Amazon) is back for its second season. We enjoyed the first season of this legal thriller starring Billy Bob Thornton.
Breaking Bad
(originally AMC, now on Netflix and Amazon) - yes, finally! Are we the
last people on Earth to discover this show? We spent our 4th of July
binge-watching it. I know the plot summary doesn't sound interesting,
but it is a great show. Review to come soon, in case there are other
late adopters like us.
Alias Grace (Netflix) is
adapted from the historical novel by Margaret Atwood, based on the true
story of a woman accused of murder in the 1800's. I recently enjoyed the
book, so I've started the TV mini-series (2 episodes in so far), and it
is very good.
GLOW (Netflix) is another new one
for me, though it just started its second season. Based in part on real
life, it is about the start of GLOW, Gorgeous Ladies of Wrestling, in
the 1980's. I've watched a few episodes so far and am hooked!
There are more, but those are the main shows we are watching so far this summer!
What summer shows are you enjoying or looking forward to their return?
After
hearing so many accolades (nominated for 199 awards, including 5
Oscars, including Best Picture) of this movie, I was eager to see it, so
when my husband was away on business recently, I watched it...and loved
it! Lady Bird is a tender, realistic, funny coming-of-age story
that focuses on the relationship between a mother and her teen daughter,
with top-notch writing and acting.
Saoirse Ronan plays
17-year old Christine, on the cusp of adulthood, unsure what her future
holds, and wanting to be called Lady Bird. The acclaimed and
award-winning Laurie Metcalf plays her mother, Marion, who wants what's
best for her daughter but doesn't always understand her struggles or her
dreams. The story follows the relationship between the two of them in
Sacramento during Lady Bird's senior year of high school. In the course
of the movie, Lady Bird has her first boyfriend, discovers drama club,
ditches her best friend for someone cooler and more popular, and
struggles with college applications and plans for her future. Through it
all, she and her mom are in constant conflict, though she has a very
sweet relationship with her dad.
All the rave reviews I
heard about this movie were right on-target. It's a perfect combination
of warmth, angst, and humor - pretty much the epitome of being a
teenager. Metcalf and Ronan are both excellent in their roles as the
often-fighting but still loving mother and daughter. Both bring out the
complexities of their roles and relationships. While some scenes are sad
or angry, humor is perfectly woven through the entire film, making it a
joy to watch. By the end, I was rooting for Lady Bird's dreams to come true.
My editor at ProHealth, Julie Holliday (also known as the ME/CFS Self-Help Guru - check out her blog at the link) published a wonderful little booklet earlier this year called You Can Live a Great Life! Julie's blog and social media are always filled with positive encouragement for living your best life with chronic illness. In this case, the booklet features advice from 7 different women living with chronic illness...including me! (and also the wonderful author Toni Bernhard).
For a sneak peek, here is the portion that I wrote - Julie sent us all questions and then included some of our answers in the final document. I always enjoy Julie's writing and love that she pulled together such inspiring advice from so many chronic illness writers - there is a wide-range of inspiration here from different perspectives. You can also follow the ME/CFS Self-Help Guru Facebook page - her focus is on self-care and inspiration.
Here's my section:
"In what ways do you consider yourself to be living a great/dream/successful
life?
I have worked relentlessly to improve my condition and quality of life by seeking out
treatments for ME/CFS. Some things don't help at all, but through trial and error, I have
found lots of treatments that each help a little bit, and those bits have added up to signifi-
cant improvement!
With that improvement, I have been able to get back to living my life and working toward
my goals. Writing is a big part of my life, and I am living my dream of working as a free-
lance writer, and gradually increasing my income to help with our family expenses
(including medical expenses).
In addition to career, I make sure that my life includes things that bring me joy: spending
time outdoors, traveling (with a camper at our own pace!), spending time with my family,
and with my friends. All of these things enrich my life.
What is the most empowering thing you have learned whilst creating your
dream life or what one piece of advice would you like to share to inspire oth-
ers to create for themselves a great life despite chronic illness?
Never give up on improving your condition. Keep trying new treatments. It often takes a
lot of trial and error to find the treatments that work best for each person, but it is well
worth the time and effort. Since so few doctors understand how to properly treat ME/
CFS, this means that you have to educate yourself and become your own advocate...and
often educate your doctor, too!"
This blog post is long overdue! I have been collecting open tabs in my browser with ME/CFS treatments I hadn't heard of before that we might consider trying - it's getting kind of cumbersome, so I figure it is time to summarize these here so I can save and close the tabs!
To be clear, the reason for the quotation marks in the post title is that only one of these treatments is actually something new - the rest are just new-to-me. But I have been studying (and trying!) ME/CFS treatments for 15+ years now and thought I'd heard about everything out there, so this is very exciting to me to have found a few potential new avenues of treatment. My son and I function quite well compared to most ME/CFS patients, thanks to a long list of treatments that have helped us, but we are both still very limited compared to normal, healthy people, so I am always on the look-out for anything else that might help.
I haven't tried any of these myself yet (well, I am just beginning to try the first on this list), so I'm not saying these have worked for us (yet), but I wanted to make you aware that these additional options are out there so that you can talk to your doctor. Don't have a doctor to help treat your ME/CFS yet? Check out these tips and doctor lists to help you find a doctor: both a local primary care doctor who can help with the easier stuff and - if you can manage it - an ME/CFS expert to help with the lesser-known or more complicated treatments. As for treatments, start with this summary of the treatments that have worked best for my son and I over the years - things that have definitely helped us improve, be more active, and live more normal-ish lives. Many of these you can either try on your own or with your primary care doctor.
Now, onto the new-to-me treatments:
Berberine for Yeast Overgrowth & Brain Fog:
Yeast overgrowth indicated by thrush
One of the other parents in our group for parents with sick kids/teens/young adults shared this study of berberine, showing it to be an effective antifungal, when we were discussing treating yeast overgrowth. This has been a chronic problem for both my son and I, due in part to the immune dysfunction inherent in ME/CFS. In fact, yeast overgrowth is very, very common in ME/CFS and can make all of your symptoms much worse. It often causes severe fatigue, flu-like aches, sore throat and mouth, and sometimes very severe brain fog (as do any underlying infections). My son and I already do all of the things listed in this post on Treating Yeast Overgrowth, and it has worked well for us - we are both in pretty good shape now. However, to keep the yeast under control, we have to stick to a strict diet (which my son never does), take loads of probiotics and supplements, and we both take prescription antifungals every day (for years now). I would love to be able to reduce the dose of prescription antifungals or maybe even get off them all together, and it would be amazing not to have to constantly be so careful about diet.
I asked our ME/CFS specialist, Dr. Levine, about berberine for its antifungal properties (as the study explains), and she told me that it's sold as a supplement, so I could try it on my own. She also surprised me by saying that she does sometimes recommend it to patients but for those with severe brain fog... which makes me wonder if those patients have brain fog due to yeast overgrowth! So, I just started taking it this week and will let you know how it goes. It's supposed to lower blood sugar, so I am a bit concerned about that since mine is already low (as is common in ME/CFS). It's also supposed to lower cholesterol and triglycerides, which would be a bonus!
1/20/2020 UPDATE: I tried berberine but couldn't even stay on it for a week - I gave up after a few days . Turns out that a side effect is low blood sugar, and--like most people with ME/CFS--mine is already too low.
Mestinon
This is actually a very old medication, and one doctor who specializes in exercise intolerance has been using it for years for his patients, but word is just beginning to spread to other ME/CFS specialists and patients. This excellent article about using mestinon to treat ME/CFS exercise intolerance explains how Dr. David Systrom, a pulmonologist at Brigham & Young Hospital in Massachusetts pioneered its use for this purpose. Though he is not an ME/CFS specialist, per se, and is not necessarily familiar with other aspects of the disease, his research and clinical practice has focused on exercise intolerance in all its forms, so he has seen a LOT of ME/CFS patients in his clinic. His work has focused primarily on two underlying reasons for exercise intolerance, both of which are highly relevant to ME/CFS patients: dysautonomia (aka Orthostatic Intolerance) and decreased oxygen uptake during exercise (i.e. our cells can't process oxygen properly).
I would love to backpack again!
Dr. Systrom found that an old drug called Mestinon (pyridostigmine bromide) is effective in treating exercise intolerance in many patients, and he has prescribed it for hundreds of ME/CFS patients over the past several years. This medication promotes better nerve firing,
increases blood (and oxygen) flow to the mitochondria in muscles, and increases blood volume - all really great things for ME/CFS patients! Word of Dr. Systrom's work has just begun to spread to the top ME/CFS specialists in the U.S. (who all work cooperatively and share information on treatments). When I asked Dr. Levine about Mestinon, she said she is trying it out on a select few patients and will let me know if it is successful. Since in Dr. Systrom's work, this medication has dramatically improved exercise tolerance in hundreds of ME/CFS patients, this is one I am really excited about. Although I have already greatly improved my (and my son's) exercise tolerance and reduced post-exertional crashes through other treatments, further expanding those limits would definitely be life-changing for us. Stay tuned!
Cortene and CT38: This is the one treatment on this list that is truly something new.CT38 is a brand-new medication, created by a group of scientists from the biotechnology and drug development fields. It was initially developed to prevent muscle wasting, and it worked well in animal studies but was dropped when the company developing it got out of the field. The scientists who developed it started their own company and named it Cortene. They wanted to find a use for their new drug and discovered ME/CFS in their research. It seems like a perfect fit. This medication targets the stress response and works against inflammation - two huge problems in ME/CFS. It looks like a match made in heaven! They are currently conducting clinical trials for CT38 with ME/CFS patients through Dr. Bateman's clinic - she's one of the top ME/CFS doctors. This could be a major move forward - to date, there is not a single FDA-approved treatment for ME/CFS (though there are plenty of effective off-label treatments in use). This blog post explains all about Cortene's development, history, and what it does. Part 2 explains more of the science behind how it works and why it might help ME/CFS patients. And Part 3 describes the clinical trial, with more details of why they think this drug might work for us.
All great news! I was feeling as if we were plateaued these past several years - we've improved a lot but are still quite restricted (I still can't get through the day without a nap), and I thought we'd tried everything available that isn't crazy expensive. So, having new treatment possibilities to explore is very exciting. I will let you know what we try and what works for us.
Have you tried any of these treatments yet? I would love to hear about your experiences in the Comments section below.
Searching for a new show to try last week while my husband was out of town (we watch a lot of shows together), I stumbled onto The Letdown,
an Australian comedy now on Netflix. Though I am well past the babies,
breastfeeding, and diapers stage of life, I found this show about a
struggling new mother both hilarious and heartwarming.
Alison
Bell plays Audrey, a new mom taking a break from her career to stay
home and care for her baby, while her husband Jeremy, played by Duncan
Fellows, works hard to support their new family. Audrey wants to be a
good mom (or mum, rather) but worries that she is failing miserably at
it. Her daughter won't sleep through the night, Audrey and Jeremy can't
bear to let her "cry it out," and Audrey is seriously sleep-deprived and
misses her old life...but of course, feels guilty about that. She joins
a new mother's group, where at first she feels like everyone else is
doing a better job than she is at motherhood. Attempts to have a night
out, meet up with old work friends, and even take on a temporary job all
have disastrous - and hilarious - results.
I expected
to find this half-hour comedy mildly amusing (perhaps because my own
sons are in their 20's now, so I am well past Audrey's stage of life),
but right from the start, it was very, very funny and had me laughing
out loud. Any parent will be able to relate to Audrey and Jeremy's
struggles to figure out how they fit into their new roles, though the
show also deals with other issues as well, including marriage, aging
parents, and work lives. The scenes with the new mother's group are
especially good, as those characters gradually become a part of Audrey's
life. The laughs were expected, but I also grew to really care about
Audrey and found each new episode even more warm and engaging. I just
finished season 1 today, and it looks like they are set up for a second
season - I certainly hope so!
The Letdown is currently available on Netflix.
Not
really a trailer, but here is a brief scene from the show, from one of
the mother's group meetings, where they were asked to bring a parenting
book they recommend, and Audrey misunderstood (sleep deprivation!) and
brought Frankenstein:
As regular readers of my blog know, we've had a rough month or so
around here. In the midst of a string of crises a few weeks ago, my
husband and I were in desperate need of a light, funny movie to escape
into, so we chose Game Night from Redbox. To be clear, when I
first saw the previews and ads for this movie in the winter, I did not
plan to see it - I thought it looked kind of stupid. Then, I heard a
good review of it from my friends at Pop Culture Happy Hour,
one of my favorite podcasts, so I decided to give it a try. This
thriller comedy turned out to be a lot of fun, surprising, and very
funny.
Jason Bateman and Rachel McAdams star as Max and
Annie, a married couple who are highly competitive and love to play
games. They often host game nights for their friends. On this particular
night, they've invited two other couples over for games and worked hard
to hide their game night preparations from their creepy neighbor, Gary
(played by Jesse Plemons). Max's super-successful brother, Brooks
(played by Kyle Chandler) shows up. As usual, Brooks one-ups Max and
hosts another game night at his expensive house the following weekend,
and explains that he's booked a special surprise for the night - a
murder mystery put on by a local company. Soon, a fake FBI agent shows
up at the house to kick off the evening's fun - he explains that one of
the guests will be kidnapped and the others have to follow the clues to
find him or her. In the midst of his explanation, two thugs show up and
violently take Brooks away. Max, Annie, and their friends assume this is
the fake kidnapping and set off to follow the clues. What they don't
know is that Brooks was really kidnapped by some serious criminals and is involved with some scary stuff.
What
follows is a comedy of errors, as the couples set off to find Brooks,
not realizing they are following real thugs carrying real guns. As you
can imagine, this leads to plenty of suspense and lots of laughs. Though
I expected the sort of slapstick, silly comedy I don't really enjoy,
this movie turned out to be really, truly funny and quite clever in a
unique blend of thriller and comedy. Bateman and McAdams are excellent
in these roles and play off each other perfectly. Their acting and the
writing are absolutely hilarious, but it is also a suspenseful thriller
with plenty of surprising twists along the way to an ending we never saw
coming. All in all, it was exactly what we needed that weekend: a lot
of laughs and a lot of fun.
DVD: 
