Sunday, April 22, 2018

Weekly Inspiration: You Deserve a Break Today!

My husband and I just returned last night from a week-long camping trip to Virginia with our pop-up camper. We had a few hiccups (including the weather in this incredibly cold spring we are having!), but overall, we had a good time. It was a nice, relaxing, quiet getaway with lots of time spent outdoors, which was just what I needed. As I explained in this article on The Restorative Power of Nature, being outdoors is very rejuvenating for me, and plenty of scientific studies bear this out. Spending time in nature (or even looking at photos of nature) has been shown to have all sorts of positive physical effects on the body, including improving the immune system! Many years ago, I also wrote this post on The Joy of the Outdoors, about how spending time outdoors brings us joy.

Our camper at dusk - home away from home!
This very cold, wintry spring we've been enduring made me feel even more desperate for a little vacation. For me, it was mostly about feeling overwhelmed by my normal daily life. With limited time and energy and necessary naps every day, I have been juggling two blogs, support groups both online and locally, a growing freelance writing business, plus all the normal, necessary stuff related to maintaining our home, helping our kids, managing bills and medical care (a full-time job in itself!), and just the daily maintenance tasks of life. No wonder I have been feeling overwhelmed and worn out! Those are my issues, but maybe for you it's more a matter of feeling bored and sick of the same old thing every day. Whatever your situation (unless, of course, you are fully bed-ridden), we can all use a little break from our normal lives once in a while and a change of scenery - it really is rejuvenating!
Enjoying an easy paddle on a quiet afternoon.
While our relentless and successful search for Effective Treatments for ME/CFS has helped me improve to where I am today - able to hike or kayak (with a heart rate monitor and staying below my limits) for an hour - we never stopped traveling or camping, even during the worst years of illness, when both of my sons and I all had ME/CFS pretty severely. For tips on how you can manage a getaway, check out my article on Travel Tips for the Chronically Ill and this post on Camping and Enjoying the Outdoors with ME/CFS. Both include lots of helpful tips on managing to get away for a bit. Camping works for us (with the accommodations mentioned in that post above), but for you, maybe it's just a couple of days in a hotel or a rented cabin (there are some inexpensive ones in many state parks, often with lovely views and some with handicapped access) that feels more home-like. Or maybe it's just an hour with a friend or family member driving along the back roads for a change of scenery or even lying in your yard, garden, patio, or deck outdoors instead of on the couch. However you define it, just getting away from the same old, same old can help revive your mental health - and a dose of nature helps even more.
Relaxing with a book while dinner cooks on the campfire
So, this past week, we enjoyed a quiet, restorative getaway. We just drove a couple of states away (south!) to Virginia, with our pop-up camper (home away from home), and stayed in two lovely state parks in the southeastern part of the state. Nothing fancy or expensive, but it was just what I needed. We spent a lot of time reading and relaxing, took short walks according to my limits, enjoyed campfires, and explored a few small towns nearby. When it got really cold and our camper's furnace broke, we went into town to buy a space heater, and on one cold evening, we went to the local movie theater instead of sitting by a campfire. We just relaxed and took things at our own pace (my husband is quite happy to also take a nap when I do every afternoon!). It was wonderful to be totally unplugged - no internet, no social media - and to be away from my ever-growing to-do list.

And now we are back home - it was great to have my couch back last night! And I feel refreshed and ready to tackle all my to-do's anew. Everyone deserves a break, no matter how you define it to fit your needs.

Sunshine selfie, from a bench during a short walk.

Saturday, April 14, 2018

Scholarship for Young Person with ME/CFS in NJ

Copyright: ktsdesign / 123RF Stock Photo
The wonderful NJ ME/CFS Association has an annual scholarship for a young person with ME/CFS (who lives in NJ) - and the award has been increased for 2018! 

Here are the scholarship details on their website.

This is a great opportunity!


Friday, April 13, 2018

ME/CFS Treatments & Blog Updates

It probably seems like I haven't been posting much here on the blog lately, but I have been working hard behind the scenes to update older posts - mostly those about treatments for ME/CFS, since they are the most popular - and to make it easier to find what you need when you visit the blog. Here's a quick recap.

I added two new pages to the blog - those are the tabs that run across the top of the page, just below the title and description of the blog, and are always there, no matter what posts you navigate to (there are also pages for TV and Movie Reviews, for fun!).
  • Our Story - a brief essay describing our own story, how first I got ME/CFS and then my two sons also got it two years later, and our challenges and progress through to today, with links to more information where appropriate.
  • ME/CFS Treatments - this is mostly a reprinting (with some updates) of one of my most popular posts. It provides an overview of ALL the treatments that have most helped my sons and I over the past 15 years, with links to more detailed blog posts within each topic. You can use this page as a roadmap for your own treatment, using the tips there and making sure you are treating all aspects of ME/CFS. Thanks to these treatments, my oldest son and I now live active, almost-normal lives again (my younger son recovered fully from ME/CFS after 10 years of mild illness).
I have also spent a lot of time updating older treatment posts, again focusing on those that have been most popular over the years. I started this blog in 2006, so a lot has changed in that time! Sometimes I rewrote the post to update the information or explain it better and sometimes - if the post was still accurate - I added an addendum to the end with any new developments and an update on our own use of that treatment. Here are some of the posts I have updated:
  • Orthostatic Intolerance and ME/CFS - OI is an integral part of ME/CFS and all patients have some form of it - this post explains what it is and how to diagnose and treat it. It is very treatable and often dramatically improves all ME/CFS symptoms!
  • Heart Rate and Post-Exertional Crashes in ME/CFS - a topic closely related to OI, this post explains how you can track your heart rate and use that information to avoid post-exertional crashes.
  • The Methylation Cycle: Central to ME/CFS - an essential topic for all those with ME/CFS, about how to improve methylation, a process related to energy production, brain function, hormone production, and ability to detox that is dysfunctional in those with ME/CFS. Lots of ideas here on improving methylation, and many of them you can try on your own.
  • Vitamin B12 and ME/CFS - this topic is a part of improving methylation but is complex enough that it needed a separate post! I explain why we all need B12 supplementation and the various options available.
  • Treating CFS Sleep Dysfunction - one of my oldest treatment posts, and one of the critical steps to treat first. This is about how to actually correct the sleep dysfunction at its root so that your sleep is normal, natural, and refreshing every night, not about using sedatives to mask the problem.
  • Immune System Abnormalities in ME/CFS - not updated recently (because the information is still up-to-date), but an essential one to read first so you will understand the following treatments for immune system dysfunction, which are absolutely critical to improving with ME/CFS since it is at the heart of the disease.
  • Low-Dose Naltrexone Update and Dosing - one of several simple, inexpensive treatments available to help normalize your immune system.
  • Imunovir Update and Inosine - another cheap immune system modulator that has greatly improved everything for us - inosine is sold as a supplement, so you can even try this on your own.
  • Increasing Glutathione in ME/CFS and Related Illnesses - another thing that helps to normalize the immune system, but it is also essential for energy production, detox, and more. It's a naturally occurring compound in our bodies, but people with ME/CFS just don't make enough of it. Post includes lots of options for increasing glutathione and was just updated this week with news of a new nasal spray!
  • Treating Yeast Overgrowth/Candida - a common problem in ME/CFS patients because of our immune dysfunction, this can make you feel terrible though you may be completely unaware that you have it! Lots and lots of options for treating.
Those are just the posts that I have updated most recently. For a full overview of all the treatments that have helped us and how they fit into the bigger picture, visit that new tab, ME/CFS Treatments.

Thanks for your patience as I try to keep everything up-to-date here and make it easier to use. It's been 12 years and 1269 blog posts, so that's a lot to keep up with!





Monday, April 09, 2018

Movie Monday: Ready Player One

We enjoyed a rare treat this weekend: we got both of our college sons, my father-in-law, and my husband and I together for dinner! We met at a restaurant in our sons' college town. After dinner, my husband, our older son, and I walked to the movie theater (our favorite recliner theater) to see the much-anticipated Ready Player One. The three of us all read the novel (my review at the link) when it first came out, passing the book around the house with "you have to read this!" so we have all been excited to finally see the movie adaptation. Of course, the book is always better, but all three of us thoroughly enjoyed the movie.

Tye Sheridan plays Wade, a seventeen-year old boy in 2045 who lives in "the stacks," a huge trailer park outside of Columbus, OH, with beaten-up trailers literally stacked up on top of each other (we're not sure why they added one year to the date or changed the location from Oklahoma for the movie - that's Hollywood, right?). In this near-future world, life has become so challenging that people spend most of their time in the OASIS, an online virtual world created by multi-millionaire programmer James Halliday. When Halliday died, he hid an Easter egg (a secret hidden in a video game) in OASIS, accessible only with three hidden keys. Whoever finds the egg first will inherit not only Halliday's wealth but also his ownership of the OASIS.

It's been five years since Halliday's death, and no one has found even the first key yet. Some people have lost interest, but Wade, or Parzival as his avatar is called in the OASIS, is still looking. It's common knowledge that Halliday was obsessed with 80's pop culture, from his own youth, so Wade has become an expert not only on Halliday's history but also 80's music, movies, TV shows, and video games. His best friends in OASIS (whom he's never met in person) are Art3mis, played by Olivia Cooke, and Aech, played by Lena Waithe of Master of None fame. The three of them, along with a couple of other friends, work together after Parzival finds the first key and eventually meet in the real world. Of course, there are bad guys here to fight against - an evil corporation that wants to control OASIS so they can add advertising and monetize it.

This is a fun, rollercoaster ride of a virtual adventure! Watching it unfold on the big screen was a very different experience than reading the book but just as captivating. Here, many of the 80's pop culture references are visual and auditory, so you have to watch and listen carefully (I think I would probably pick up on a lot more references watching it a second time), but it has that same fun feel to it, with a mix of retro and futuristic. The scene that takes place within the world of The Shining was one of our favorites! Although half (or more) of the story takes place in virtual reality, you don't have to be a video game fiend to enjoy it - it's just a suspenseful mystery adventure in a different kind of visual environment. Of course, we liked the book better (isn't that almost always the case?), but all three of us thoroughly enjoyed the movie and left the theater with big smiles on our faces.

Ready Player One is currently in theaters - look for a recliner theater near you!  It is due for DVD and streaming (Amazon) release in July 2018. Or if you'd prefer, you can read the book first (it was my favorite book read in all of 2012!)




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



Book:

Sunday, April 08, 2018

Weekly Inspiration: Living in the Moment

It's been awhile since I've written a book-inspired Weekly Inspiration post, which is odd since I read constantly, review books for a living, and have a book blog! I am definitely past due for a bookish post.

Last fall, I finally read Before the Fall by Noah Hawley, a literary suspense novel (my review at the link - no spoilers) that I had given my husband the previous Christmas. It was an engrossing and gripping story that was part mystery and part character study. It begins with a small, private plane crashing into the water between Martha's Vineyard and NYC. Almost all of its eleven passengers dies instantly, except for a man named Scott and a four-year old boy. Scott finds the boy in the water and saves his life by swimming to shore (he used to be a competitive swimmer). The rest of the novel follows the investigation into the crash and goes back to before the crash to look at what led up to it from all the different characters' perspectives. It's a good story and quite captivating, with the mystery of what or who caused the plane to crash, but I also enjoyed the chapters following Scott and the boy post-crash, as they struggle to cope with what happened.

Here, Scott muses about life and living:
"He tries to exist solely in the moment he's living, a man driving a car on an Indian summer day. ...Life is made of these moments - of one's physical being moving through time and space - and we string them together into a story, and that story becomes our life.

...Because what if instead of a story told in consecutive order, life is a cacophony of moments we never leave? What if the most traumatic or the most beautiful experiences we have trap us in a kind of feedback loop, where at least some part of our minds remains obsessed, even as our bodies move on?"
That passage really struck a chord with me with respect to living with chronic illness. It is very easy to fall into that trap he describes in the second paragraph, where we become obsessed with the trauma we've experienced. It may be the experience of our illness itself, suddenly having our lives come to a halt and losing things that we enjoyed doing. And sometimes, even after we've accepted the physical limits of the illness, we still become stuck on the emotional traumas - family that abandoned you when you most needed them, friends who you never heard from again, and other personal slights. Those have certainly been the toughest traumas for me to move past and stop obsessing over (and I'm still not 100% of the way there).

I love that first paragraph, too, though. It is something I write about often here on the blog, especially in my Weekly Inspiration posts - the focus on moments of joy and living in the moment. I love how he says we string these moments together and that becomes our story.

I want my story to be moments of joy and existing in the moment I am living, rather than about brooding and obsessing over the past.

How about you?

Tuesday, April 03, 2018

TV Tuesday: The Resident

Even though we still watch (and love!) Grey's Anatomy and don't really need another medical TV show, during the doldrums of winter TV, my husband and I tried The Resident, mostly because we both love the main actor, who played Cary on The Good Wife (and, I just discovered, Logan on Gilmore Girls). We have some complaints about this new medical show but are still watching and enjoying it overall and plan to continue.

Matt Czuchry stars as Conrad Hawkins, a third-year resident at sparkling, expensive Chastain Hospital in Atlanta. This is not the gritty public hospital filled with drug addicts and gunshot victims we saw back in the days of ER! In the first episode, idealistic new resident Devon Pravesh, played by Manish Dayal, starts at Chastain on his first day as a doctor, working under Conrad. It's a tough first day, and Devon quickly learns that Conrad is brilliant and cares about his patients fiercely but has little patience for following the rules. Nicky, played by Emily VanCamp, is a very intelligent and caring nurse who works with them, and Mina, played by Shaunette Renee Wilson, is an arrogant but highly skilled surgical resident. Heading up the hospital are star surgeon Randolph Bell, played by veteran actor Bruce Greenwood, and a bevy of other high-profile, very wealthy senior doctors. All is not as it seems at beautiful Chastain, though, and we see in the very first episode that Bell has developed some sort of tremor in his hands, which he is hiding - and still operating on patients, to their detriment - in order to save his reputation and career.

Much of The Resident is like any other medical show - different patient cases each week, with a few longer-term patients we see again, taken care of by a group of very attractive doctors, with some sex and scandal thrown in to keep things interesting. The difference in this show - and the thing that bothers us about it - is that the residents, nurses, and other underlings are all the good guys, and the senior staff at the hospital are all, to a person, evil and obsessed with maximizing profits, their own shiny reputations, and remaining powerful and wealthy. Really - every single senior doctor is evil. We get the point the show is trying to make: that sometimes hospitals, which are supposed to help people, are too focused on profit, especially in this time of privatization, to the detriment of the patients they are supposed to be caring for. But, every senior doctor? There's not a single doctor in charge here who wants to do what's best for his or her patients? It's kind of hard to swallow. Still, we are now up to episode 9, and we are still watching and enjoying it. The rest of the characters and stories are compelling enough to keep up tuning in each week, and Czuchry and the other actors are very good.

The Resident is a FOX show, currently airing on Mondays. We watch it On Demand. It looks like it is also available for free on Fox's own website, though as of today, the first four episodes are only available there if you are a cable subscriber (it asks you to sign in with your cable password) - the next 5 are available free to anyone. All of the episodes are also available on Amazon for $1.99 each or $19.99 for the whole season (so, you could pay for the first four and then watch the rest free on the Fox website).




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

Sunday, April 01, 2018

Weekly Inspiration: Spring Cleaning for Your Spirit

Happy Easter! Happy Passover! Happy Spring!

After four snowstorms in March, I am REALLY appreciating the first glimpses of our late spring here. Seeing those first flowers blooming, hearing the birds singing outside, and reveling in these rare sunny days with blue skies fills me with joy.

This season of renewal and hope is the perfect time to pay attention to your emotional and spiritual health. Living with chronic illness, we tend to focus on our physical health, but our emotional well-being is just as important in how we feel overall and how we experience life. This article I wrote was published on ProHealth last month, and is reprinted with permission here, in its entirety - Happy Spring!


Spring Cleaning for Your Spirit
(published on ProHealth March 17, 2018)

Though many of us living with chronic illnesses can’t manage a thorough spring cleaning of our homes, we can all undertake – and benefit from – a spring cleaning of our spirits. Think of it as a mental health scrub, clearing out the old “dirt” in our minds, like resentment, envy, anger, and loneliness, and replacing them with healthier feelings like joy and connection. Stress and negative emotions can actually make us sicker physically, so this is a worthwhile pursuit for both mind and body. What better time for a mental clean-out than this season of renewal and hope?

Here are some ways to get started:

Release old feelings of bitterness, resentment, and anger.
Although this is easier said than done, it is so important for our mental well-being. When corrosive emotions like these are held inside, they eat away at us and often make our physical symptoms worse. Just recognizing that the old anger you are holding onto is hurting you can be a step forward.

First, make sure you have fully acknowledged and accepted what you are feeling – denial is even more harmful. Writing can be very therapeutic. Try to write out your feelings – of hurt, abandonment, and resentment – to get them out of your head and onto paper. Be honest and allow yourself to grieve. Then tear up or even burn the paper, as a symbolic way to say good-bye. You can’t change the past – and you can’t change other people – but you can let go of old hurts. Your own response is the one thing you have control over.

Practice empathy.
We all want compassion, so begin by showing empathy toward others. Put yourself in someone else’s shoes and really try to see the world from their perspective. When I did this with a family member, I realized that she sincerely thought she was doing what was best for me. She did see how sick I was, but she thought she needed to get my mind off it and cheer me up. Once I recognized that her intentions were good, just misguided, then we could start over from the same place of understanding, and I could explain how I experienced her actions and what I needed.

You can also empathize with other people’s difficulties. Everyone has challenges in their lives, and they are often invisible, like our illnesses.  By showing interest and concern about your friend’s child’s learning disability or your sibling’s divorce, you are not only showing them that you care, you are also modeling the kind of compassion you would like. Avoid comparing suffering – that’s a contest no one can win. Show others that you care about what they’re going through, and you will receive caring back.

Reach out and make the first move to contact family or old friends.
If you are feeling abandoned by friends and family, turn those negative feelings into positive actions. First, as mentioned above, recognize that their intentions were probably good – perhaps they were afraid of disturbing you or saying the wrong thing, so they said nothing and stayed away.

Instead of waiting for someone to call, reach out yourself to a friend you’ve lost touch with or a family member who has seemed distant. Ask how they’ve been and show genuine interest in their lives, as well as being honest about your own. Even a text message or a comment on Facebook could start the ball rolling. Some people won’t ever feel comfortable with your illness, but most want to do the right thing and just need some encouragement to re-establish a relationship. Take the first step.

Find your people, online or in person.
While our relationships with healthy friends or family may require some work to heal and find common ground, interacting with others in your same situation is immediately supportive. What a relief it is to chat with others who “get it”! Look for local support groups (search online for your illness and location or try meetup.com) or ask your doctor(s) to pass your contact information along to others with similar conditions.

Online, check Facebook for groups related to your illness or search for your illness + forum or discussion. Yahoo Groups, Groups.io, and Google Groups all offer a wide range of e-mail groups on every topic imaginable. You can even use online groups to connect with others who live nearby. Look for groups that have a positive tone, with supportive and kind discussions between members. Finding your people can enrich your life – we all need that sense of connection.

Focus on joy and gratitude.
Becoming aware of your mental habits and focusing on the positive (once you have dealt with the negative feelings openly) can provide a huge boost to your mental health. Try to notice your speech and thought patterns. Do you spend a lot of time complaining or feeling sorry for yourself? Do you think constantly about what you’ve lost?

Writing can help again here. Try some stream-of-consciousness private journaling. You may need to grieve first & accept those darker feelings so that you can release them. Noticing things that make you feel joy or gratitude can make you far more aware of positive aspects of your life. Keep a joy journal or write a daily gratitude post on Facebook or Twitter (I use #GratefulToday on Twitter). After a few weeks, you will find yourself just naturally noticing joy and gratitude more. Lots of small moments of joy can add up to a lifetime of happiness.

Get professional help, if needed.
If these suggestions seem insurmountable or you are struggling with intense anger or sadness that you can’t work through on your own, consider professional help. I have found counselors very helpful at two different points in my 16 years of chronic illness. Benefits vary by policy, but therapy is usually covered by health insurance. If you or your spouse works, check to see if the company has an Employee Assistance Program (EAP) – I used my husband’s EAP both times to find therapists with chronic illness experience who were a good fit for me. Psychology Today magazine also has an online database, as does findapsychologist.org. If you are unable to leave the house, there are now plenty of online therapists – search for “online therapy chronic illness” for options.

Spring is in the air, with sunny days ahead. Take advantage of this season of renewal to focus on your own spiritual growth. Sweep out the cobwebs of abandonment and loneliness, and scrub out the harmful effects of anger and resentment. Focus in on your own mental well-being and make a fresh start with relationships, old and new. Your mind and body will thank you.

Suzan Jackson is a freelance writer who has had ME/CFS for 16 years and also has Lyme disease. Both of her sons also got ME/CFS 14 years ago, but one is now fully recovered after 10 years of illness and the other is in college, with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com You can follow her on Twitter at @livewithmecfs.

Tuesday, March 27, 2018

Quick Update - Personal & ME/CFS

Hello! Yes, I'm still here! Sorry that the blog hasn't gotten much love lately. Things have been super busy around here, and I've been more than a little overloaded. A few quick personal updates & some links to ME/CFS news, too:

Personal Updates:
I had a rough couple of weeks, with a BUNCH of medical appointments - nothing to do with my ME/CFS, but they took a lot out of me anyway. I had two broken dental fillings replaced (one each week) and two minor toe surgeries to try to fix ingrown toenails - those started last winter when my feet were swollen from erythromelalgia, which has been in remission this year (see how here), but the ingrown toenails keep coming back and are very painful. Hoping this took care of them for good - we'll see! There were also appointments for my 92-year old father-in-law, so the medical stuff has kept me busy.

Writing has also been keeping me busy...and that is good, but as always, time and energy are the limiting factors. I'm trying to do more travel writing because I really enjoy it and want to focus on it more in two years when my husband retires. I had two travel articles published in March:
So, that's been fun, and I've been hard at work the past month pitching more travel stories to more publications.

I've also been writing a lot more for Shelf Awareness, continuing the monthly book reviews I started last year but now writing columns for their From My Shelf feature and author interviews, too. I am really enjoying both of these! There was a bit of a learning curve regarding how to effectively record the author interviews (and some operator error on my part), but I love doing the interviews - they are like my own private book clubs with the authors! Those new pieces of mine haven't been published yet, but if you enjoy books and want to see what I'm writing, you can check out my book blog (where I will post my reviews, interviews, and columns) and/or sign up for the Shelf Awareness newsletter (sign-up box in the upper right corner). That's all been a lot of fun, but a bunch of these assignments are all due close together, so that's keeping me very busy.

Here at home, we helped our sons head off on their spring break this week, and last week my husband and I managed a short - and very much needed! - weekend getaway to Annapolis, MD, a wonderful waterfront town with so much amazing food that we both gained weight in spite of a lot of walking. You can check out some of my photos here - this coming weekend, I will be posting the food-related photos and brief reviews of some of the best restaurants we found.

(By the way, if you are wondering how I got well enough to manage my writing career and some travel, here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again.)

Quick ME/CFS Updates:
I have a backlog of research studies and other information I want to review, summarize, and share with you, but in the meantime, here are a couple of great summaries of recent studies & other events:
  • Solve ME/CFS Research 1st update - including research study news, upcoming webinars, and advocacy events - check out the list of upcoming advocacy efforts for International ME/CFS Awareness Day in May.
  • News in Brief - March 2018 from Science for ME - a long list of recently published research studies, updates, publications, and events - including a LOT on the debunking of the PACE trials (i.e. the studies that resulted in doctors recommending Graded Exercise Therapy - GET) - we should finally be seeing some long overdue changes in patient care, especially in places like the UK where GET was the only so-called "treatment" offered for ME/CFS. This is exciting news! 
Ok, that should catch you up - sorry for the lack of blog posts lately. I hope to get back into my normal routine now.


Tuesday, March 13, 2018

Top ME/CFS Experts Cooperate on Treatment Guidelines

The good news in ME/CFS just keeps coming! This time, it's not in the realm of research, but the all-important topic of treatment. Many patients know that the only way to get complete and comprehensive medical treatments for ME/CFS is to see one of the U.S.'s few top experts. Now, those experts are coming together to document their expertise into treatment guidelines for primary care physicians and family doctors. Hurray!

This excellent article published on Medscape by medical journalist Miriam E. Tucker summarizes the first meeting of this esteemed group, a summit organized by Lucinda Bateman (one of those few top experts). This meeting was just the first step, but information from the group is already useful for doctors unfamiliar with ME/CFS and how to treat it.

From Dr. Bateman's own website, this is a summary of the meeting itself and which doctors attended - it's a Who's Who of top ME/CFS clinicians.

You don't have to wait for the final guidelines to be produced to begin to take action to educate your own doctor(s) and find effective treatments. Print the Medscape article and share it with your doctor - that alone will verify the severity and scientific underpinnings of our disease and begin to give them some ideas of what tests to run and the kinds of treatments that might be helpful to patients.

Here are some other recent documents that I've shared here on the blog previously that would also be great for printing and sharing with your doctor:
And if your doctor isn't interested in learning more about ME/CFS and won't read an article about it? Then, you need a new doctor. You don't necessarily need an expert - just someone who is open-minded and willing to listen and learn.

Monday, March 12, 2018

Movie Monday: The Big Sick

I'm a bit behind in my movie reviews, but it's turned out to be timely, with the Oscars just last week. Back on New Year's Eve, my husband and I watched The Big Sick, an original, warm, and funny romcom that is based on a true story.

As the movie opens, Kumail, played by Kumail Nanjiani, is doing his stand-up comedy routine and hanging out with his other comic friends. After the show, a pretty blond grad student named Emily, played by Zoe Kazan, talks to Kumail at the bar and tells him how much she enjoyed his set. The two start dating, and for a while, it's a typical romcom story, with two attractive main characters who are gradually falling in love. But Kumail is originally from Pakistan, and his parents - though very nice - are very traditional and expect him to marry a Pakistani girl. In fact, he has to sit through yet another set-up every Sunday, as his mother invites one eligible Pakistani girl after another to meet him at their weekly family dinner.

Eventually, Emily gets angry that Kumail won't introduce her to his family, and the two break up. Soon after, though, with both still upset over the break-up, Emily gets very sick and is admitted to the hospital, while doctors try to figure out what is wrong with her as she rapidly deteriorates. Suddenly, Kumail finds himself at Emily's bedside, facing down her parents, played by Holly Hunter and Ray Ramano, for the first time, who know that he's the guy who broke their daughter's heart - awkward!

The Big Sick won 16 different awards - many for "Best Movie" or similar - but was passed over for an Oscar last week, much to fans' disappointment. It was nominated for Best Original Screenplay, a recognition of which it was worthy. The backstory adds to its attraction, as Kumail and the real Emily (V. Gordon) wrote the screenplay based on their own real-life love story. As you can imagine, with a stand-up comic writing the script, it's a very funny movie, but it is also very warm and moving, too. Kumail and Zoe are both very good in their roles, as are the supporting cast and especially Kumail's family. As always, Hunter and Romano are fabulous. We both enjoyed it very much.

An Amazon original movie, The Big Sick is available free streaming on Amazon Prime or on DVD.




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

    

Sunday, March 11, 2018

URGENT: Tell Congress To Increase Funding for ME/CFS!

There is a big decision being made in Congress in the US this week over additional discretionary medical funding, outside of the NIH budget. Now is our chance to be heard and let our representatives know that ME/CFS is worthy of more research funding!

Solve ME/CFS Initiative has made it easy - the simple form at this link only takes a few minutes to complete and sends these important messages to your representatives in Congress. It really is very quick and easy - a great opportunity for you to make a difference, even if you are bedridden!

But hurry! The deadline is this week (I think Tuesday 3/13), so follow the link to fill out the form right now.

Let your voices be heard!

Tuesday, March 06, 2018

TV Tuesday: 11/22/63

I couldn't wait to tell you about 11/22/63 - we LOVED this show!! Both my husband and I loved reading the novel by Stephen King, about a man who time travels back to 1960 in an effort to stop JFK's assassination (yes, King write more than just horror). We couldn't wait to watch the TV miniseries...but it was on Hulu, which we don't have. So, I gave my husband the DVDs for Christmas, and we took advantage of the hiatus of our favorite shows during the Olympics to watch it. Wow. This immersive, suspenseful historical drama was well worth waiting for. It's definitely one of my favorite TV shows.

James Franco plays Jake Epping, a high school English teacher going through a heart-rending divorce in a small town in Maine (naturally - it's a Stephen King story). He eats every day at his favorite local diner, marvels at the cheap burgers, and becomes friendly with the owner, Al, played by Chris Cooper. One day, visibly unwell, Al asks him to stay after he closes up for the night and shares a terrible secret with him: Al is dying of cancer and needs Jake to finish an uncompleted mission for him. He shows Jake a weird time fissure in the back of his closet, where Jake sees for himself that walking through it brings him to that same spot in 1960. Al has devoted the past years, since he discovered this time rift, to figuring out how to stop JFK's assassination. He's done a lot of research and figures out that things in the modern world started going downhill after that event. He wants Jake to complete his mission for him - go back to 1960, travel to Texas, find out if Lee Harvey Oswald was acting alone in killing JFK, and if so, stop him. After some convincing and Al's death, Jake takes on the mission, with a stop-off in 1960 Kentucky to fix another more personal horrific event from the past first.

We were completely engrossed in this mini-series and binged it over a week's time. It's a movie-quality show that perfectly recreates the 1960's, down to every last detail (in fact, a "making of" extra on the DVD explains how they did some of that). The plot - tracking down Oswald, watching him, and trying to figure out if he was acting alone - is riveting and suspenseful, but the scenes of ordinary life are just as engaging. Since he has to stay in the 1960's for three years, Jake has to establish an identity and a cover, so he finds a job teaching English in a small-town Texas high school, where he meets a lovely school librarian named Sadie, played by Sarah Gadon, who significantly complicates his mission. The entire show is so immersive and the writing and acting so good that you forget you are watching James Franco and come to see him as Jake. I also found myself constantly thinking about the show in between episodes and for days after we finished it. I always find time travel plots fascinating for that reason - the convoluted cause-and-effect - plus King's assertion (as with many time travel stories before it) that time resists being changed. It all makes for a gripping, engrossing TV mini series that is well worth your time.

King's novel was outstanding, and this TV series brings it to life perfectly. If you are a King fan, watch for small winks to his other stories interspersed throughout the show!
11/22/63 is a Hulu original, so it is available for streaming free on Hulu, but it is also available on DVD, for purchase or through your local library system. You can also stream it on Amazon for $1.99 an episode or $14.99 for the entire season.



    

Monday, March 05, 2018

Movie Monday: Red Sparrow

My husband and I had a nice treat this weekend - dinner out and a movie at our local recliner theater. Our son had given us a Fandango gift card for Christmas, so we saw bought 2 tickets for the recliner theater on a Saturday night...all for $1! We'd been waiting for Red Sparrow to come out (it was just released on Friday), and though we were disappointed to hear some critical reviews, we still wanted to see it. We're glad we did! We both enjoyed this exciting Russian spy thriller starring Jennifer Lawrence.

Lawrence plays Dominika, the star of the Russian ballet whose career is cut short by a horrible accident. As a prima ballerina, Dominika and her mother were supported by the state, which paid for their apartment and all of her mother's extensive medical bills. When Dominika's career ends, her (evil) uncle Ivan tells her that the state will continue to support her and her mother if she does something for them. She is supposed to just change out a man's cell phone for another one, but things go horribly wrong and soon Dominika finds herself facing a far worse choice: die for what she knows or join the ranks of Russian spies. With no other options, she joins the Sparrow program, a humiliating and intense program the Russians use to train young spies to use their bodies to manipulate people. After her training, she is assigned to get close to an American CIA agent named Nate Nash, played by Joel Edgerton, in order to find out who is the CIA's mole in the Russian government.

That's just the set-up of this complicated, twisty plot. Filled with fake-outs, double-crosses, and other staples of the spy genre, this gripping thriller kept us glued to the screen, wondering if there was any possible way for Dominika to come out of this alive and intact. On the downside, there is a LOT of violence in this movie, including sexual violence and two horrific scenes of torture. I had my eyes covered several times! The plot was gripping, though, and the acting was good. True, Jennifer Lawrence is clearly not Russian, but let's face it - in real life, Russians don't talk to each other in Russian-accented English, either - you just have to suspend disbelief a bit and go along for the ride. And what a ride it is! The plot twists keep you guessing until the last moments of the film, with plenty of action, intrigue, and suspense along the way.

Red Sparrow was just released March 2, 2018, and is out in theaters now. Check Fandango for showtimes and theaters near you (see if YOU have recliner theaters nearby!) or to buy tickets. It is planned for release on both DVD (pre-order now) and streaming through Amazon in June 2018.





Friday, March 02, 2018

Flashback Friday: 16 Years Ago Today...

Happy Illiversary to me!
16 years ago today, my life forever split into Before and After.

16 years ago today, my life changed dramatically, though I had no idea at the time.

16 years ago today, I woke up feeling awful, with a severe sore throat, exhausted, and achy all over. I thought I had a bad virus, but it never went away.

16 years ago today, I forced myself out of bed because we'd planned a day trip to Baltimore with our young sons, and I didn't want to ruin the special treat. I still vividly remember barely being able to hold myself up at the National Aquarium, clinging to the handrails, and thinking that it was the worst sore throat I'd ever had and so different from other sore throats.

(For more details on the start of my illness and those early years, read Our Story)

Another year has gone by of my post-ME/CFS life. Today makes 16 years, but the anniversaries don't really bother me much anymore. Someone asked me yesterday when I got sick, and I said, "About 16 years ago....oh! exactly 16 years ago tomorrow!" That date which once loomed so horribly over me each year now feels like any other day, but the anniversaries used to be tougher.

I was feeling bittersweet on my 5th Illiversary, doing a bit better overall with treatment, but recalling that researchers and doctors often cite 5 years as a turning point (that few people completely recover after being ill longer than 5 years).

By year 8, I was feeling less contemplative. By then, having ME/CFS was just a part of my new normal.

When I hit 10 years of illness, I barely noticed the anniversary date, even though it was a milestone year. I was focused on my sick kids by that point, and my own illness had become the norm for me by then.

Baltimore 2016 - in a museum!
My 14th Illiversary was a triumph of sorts, as I returned to Baltimore with my husband, this time able to enjoy the city, including plenty of walking (though I still needed my afternoon nap!). It was my first time ever visiting an art museum, and the first time since getting sick that I could manage any kind of museum.

I'm sure I would feel differently about my ME/CFS anniversary if I was still as sick as I was in those first few years, but over the past 16 years, I have found many effective treatments that have greatly improved my symptoms (and my life), allowing me to be much more active and making crashes rare. I still need my daily nap and have some limitations, but I am quite happy with my life these days. I met a friend for lunch today, picked up my car from the shop, and spent most of the day writing, so that's a good day for me. Ten years ago, I wasn't even been able to sit up to write - I had to lie down on the couch with my laptop propped up (beta blockers are to thank for that improvement).

So, Happy Illiversary to me!

Tuesday, February 27, 2018

TV Tuesday: The Marvelous Mrs. Maisel

Suddenly, I am overflowing with new-to-me TV shows to tell you about! The Olympics gave us a chance to try some new shows on streaming and DVD, and wow, we found some great ones! First, my new favorite lunchtime girl-show, The Marvelous Mrs. Maisel, an Amazon original that I am loving.

Rachel Brosnahan stars as the title character, Miriam "Midge" Maisel, in 1950's NYC. In the first episode, we see her fairytale romance and perfect Upper West Side life shattered when her husband Joel, played by Michael Zegen, suddenly leaves her for his secretary. Joel has been trying - unsuccessfully - to do stand-up comedy at night. He works in business, but comedy is his dream, which is destroyed when Midge finds out he's been stealing his material. Midge has been the perfect 50's housewife, fully supporting him by coming to all his shows and taking copious notes on what works and what doesn't (in addition to caring for their two young children and the house). Stunned by Joel's departure, Midge stumbles drunk into the dive bar where he often does stand-up and ends up on stage in her nightgown. She is actually very funny and the crowd loves her - but she also gets hauled off by the police and arrested. It's a rough start, but Midge is hooked. She realizes that comedy is actually her dream...and that she might even be good at it. The manager of the bar, Susie Myerson (played by Alex Borstein), is won over by Midge's raw talent, and the two pair up, with rough-talking, masculine-dressing Susie acting as Midge's new manager.

That's the basic plotline of the show, as Midge tries to both put her life back together and launch a stand-up career, but this show is so much more than its original plot! The cast are all outstanding and hilarious, with Tony Shalhoub as Midge's straight-laced father, and Marin Hinkle as her controlling  mother, to name just a few. The scenery, costumes, and atmosphere are also amazing - a brightly-colored, vibrant recreation of 1950's NY. It makes for a visually stunning show that is a lot of fun to watch. Some scenes are almost musical-like, without the singing, with a classic 50's song playing in the background as Midge struts down the street or takes on her new job in a colorful department store (you can check out the music from the show here). Midge is likable, and I find myself rooting for her to bust those 1950's social norms and make it as a comedian, so the show has warmth, but it is also very, very funny. All in all, The Marvelous Mrs. Maisel is an entertaining visual spectacle that will make you laugh out loud.

The Marvelous Mrs. Maisel is an Amazon original show, so it is available streaming exclusively on Amazon. And it has been approved for a second season, so there is more Midge to come!

Here is a trailer of the show:




Sunday, February 25, 2018

Weekly Inspiration: Emotional Agility

This morning, Susan David's TED Talk on The Gift and Power of Emotional Courage caught my eye. A psychologist from South Africa, she shares the story of her father's death and how she wasn't able to grieve openly until a teacher encouraged her to write about her feelings. Grief is something we all deal with in living with chronic illness, and David makes some excellent and thought-provoking points in this brief talk:



She talks about the need to recognize and feel your emotions - that's the only way to move forward. When she mentioned the pressures of our society to "stay positive," it reminded me of the early years of my illness, when my family was focused on "cheering me up" and "getting my mind off my illness" when what I really needed was simple recognition and acceptance of what I was going through.

We all need to grieve our losses. I write often about finding joy, being grateful, and taking positive steps, but this doesn't mean ignoring the darker feelings - you have to allow yourself to feel anger, sadness, resentment, and other difficult emotions in order to move past them.

Incidentally, today is my own father's birthday. He died 2 years ago of melanoma. I miss him every single day, but he's really been on my mind even more this week, when I would normally be picking out books I think he'd like or choosing a new golf course for him to try.

There are all kinds of grief - plus other difficult emotions, too. David talks here about emotional agility - being able to really feel all of our emotions, positive ones and darker ones - and it's a good lesson to remember.

Have you allowed yourself to grieve what you have lost? Have you been able to truly feel those emotions and move forward?



Thursday, February 22, 2018

In the News: Article on ME/CFS for Family Doctors Published

The winter 2018 issue of Family Doctor: A Journal of the New York State Academy of Family Physicians (volume 6, number 3) includes an article on ME/CFS called, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: What Every Family Physician Needs to Know." The article is co-authored by Dr. Susan Levine (a top ME/CFS expert), Mary Dimmock (a well-known ME/CFS activist whose son has the disease), and Terri L. Wilder (a patient and volunteer with #MEAction). You can read the full article at the link - it's a few pages long and begins on page 23.

The article provides a thorough overview of ME/CFS, including its history, the IOM effort to establish diagnostic criteria, demographics, diagnosis, and treatment. It is, of course, written specifically for practicing family doctors, so it provides facts to dispel the most common myths that doctors might have heard about ME/CFS in the past. The section on treatment is brief, but the article lays the groundwork for doctors who see patients to at least begin to recognize ME/CFS, understand how severe it can be, and begin to treat. As we all know, just getting doctors to recognize that ME/CFS is real, is debilitating, and that real medical treatments are available would be a huge step forward.

I was happy to see my home state (I grew up in Rochester) once again taking the lead in educating its doctors about ME/CFS. The NYS Department of Health also issued a letter to doctors last year about ME/CFS. Now, we need to get the other 49 states to follow its lead!

This is a great article to share with your doctor, as it provides a good overview and a long list of scientific studies to back it up. Just click the link to the article above and print pages 23 - 25.

As a reminder, an ME/CFS Pediatric Primer was also published last year, which is an excellent document to print and share with your pediatrician or family doctor, if your child has ME/CFS (or is suspected to).

Things are looking up! It's going to get harder and harder for ignorant doctors to remain in the dark, as great information like this continues to be published.

Wednesday, February 21, 2018

Great News! Glutathione Now Available as a Nasal Spray!

Copyright: sudok1 / 123RF Stock Photo
I wrote a post here about a year ago about Increasing Glutatathione in ME/CFS and Related Illnesses and about the improvements my son and I have seen from adding glutathione injections to our treatment regimen. You can read that post for more details on exactly what glutathione does, why it's important, and what roles it plays in our illnesses.

The bottom line is this: glutathione is a naturally occurring compound that people with ME/CFS, fibro, Lyme, and similar illnesses don't make enough of. Glutathione is crucial for methylation, energy production, detox, improving exercise intolerance, and immune function, so increasing glutathione (helping to give our bodies more since they're not efficient at making enough) can have ample positive effects on almost all of our symptoms. Oral glutathione supplements are poorly absorbed and don't get into the cells well, where they need to be to help. Until now, the best approaches were IVs or intramuscular injections. That post also explains the improvements we've personally seen from glutathione.

So, fast-forward to today. I have kept up the twice-weekly glutathione injections and have seen great benefits from them. Among other things, I went from getting bacterial bronchitis 4-6 times a year to not getting it at all for over 18 months! The downside is that intramuscular injections use a large needle and are painful...though I've gotten better at it with practice. My son hasn't kept up with his glutathione injections regularly, in large part because of the difficult and painful injections.

So, I was thrilled to hear recently that glutathione is now available as a nasal spray! I checked with our ME/CFS specialist, Dr. Susan Levine, who confirmed that it was true and assured me that the nose spray is even more effective than IV's or injections - and no needles!

Glutathione nasal spray is available through Skip's Pharmacy in Florida, a well-respected compounding pharmacy that provides many ME/CFS patients with low-dose naltrexone. The price is similar to what we were paying for injectable glutathione. We immediately filled a prescription for the new nose spray for my son.

He has been using the glutathione nose spray for a few weeks now. He just uses one squirt in one nostril each day. Because it's daily, it's much easier for him to remember it consistently than the twice-weekly injections...and he's not avoiding it because of pain. He says he is already noticing improvements in energy and how he feels overall. I am hoping this will also help with his recurring bronchitis, as it did for me. I am finishing up the injectable solution we have, and then I will switch to the nasal spray, too.

Glutathione can help improve SO many different aspects of our illnesses. Now it will be more accessible to more people - that's reason to celebrate!

NOTE: That earlier post on glutathione also lists additional ways to boost glutathione.

UPDATE 4/12/18:
If you can not get a prescription for glutathione nasal spray, there appears to be one commercial brand on the market called GlutaQuick, which you can search for online, but it is a bit more expensive.

NOTE: Do NOT buy glutathione mouth sprays - the pH in our mouths immediately render the glutathione unusable, and it never gets into the bloodstream where it is needed - these are just a waste of money (and if you search for glutathione nasal sprays on Amazon, a bunch of mouth sprays will come up, so read carefully).

Our experience after 2 months? My son switched to the nose spray back in February, as soon as we found out about it. He admitted to me that he hadn't been doing the IM injections because they hurt too much (they definitely take some practice to master), so we switched him immediately (I am using up the last of the injectible solution we have and then I will switch, too). So, it's been about two months for him. His energy is improved, he remembers it most days, and he is still using that first bottle we bought, so it lasted awhile. Best of all? He came home from spring break two weeks ago with some chest congestion, which for him always means bacterial bronchitis. This time, though, he felt fine after a few days of coughing, and he did not need to go on antibiotics - hurray! So, the glutathione seems to be having the same positive immune system effects for him that is has for me...and the nasal spray is much easier, more convenient, and far less painful for him to use. I'm switching, too!
 

Tuesday, February 20, 2018

TV Tuesday: The X-Files

I was looking at the list of TV shows my husband and I are currently watching to see if there were any I hadn't reviewed yet. There is! We were avid viewers of The X-Files back in the 90's, rewatched many of the old seasons with our sons in the 2000's, and were excited last year to see our old favorite show come back with a new season 10. We are now enjoying season 11, and this unique mix of detective show, paranormal, sci fi, and humor is still going strong.

In case you somehow missed The X-Files phenomenon the first time around, the shows (and spin-off movies) center on two FBI investigators, Fox Mulder, played by David Duchovny, and Dana Scully, played by Gillian Anderson. Waaaay back in the very beginning, Mulder was stuck in a basement office investigating so-called X-files, strange or unexplained cases that often veer into the supernatural. Scully is a medical doctor and was initially assigned to keep an eye on Mulder and bring her skeptical, hardcore scientific point of view to bear on his supposedly woo-woo cases. Long story short, 11 seasons and more than 20 years later, Mulder and Scully still work together in that basement office, and Scully's medical and scientific expertise still can't explain away the X-files. Along the way, they uncovered a massive conspiracy involving aliens and alien DNA.

So, when the show came back last year for season 10, more than a decade after it ended, it picked up where it left off: at the end of season 9, the X-files had been closed and the two partners had been living their own lives. At the start of season 10, we see that Mulder never stopped investigating the alien conspiracy, and now the X-files are being re-opened, with Mulder and Scully back together, along with their longtime boss, Walter Skinner, played by Mitch Pileggi. Like the first 9 seasons, the show still alternates between stand-alone episodes with investigations of weird X-files type stuff and episodes that move the bigger storyline about the alien conspiracy forward.

As ever, The X-Files is creepy, suspenseful, intriguing, and has a great sense of humor, especially in some of those strange stand-alone episodes. The chemistry between Duchovny and Anderson is still great, even more so after so many years together (both the actors and the characters). Many of the same elements are still here from the original nine seasons, sometimes with a modern twist. We are thoroughly enjoying this old favorite.

If you have never watched The X-Files before, then you might want to start back at the very beginning with season 1 (especially if you are looking for a binge-worthy show) because of that ongoing conspiracy storyline that was slowly built up over time. The beginning of season 10 does provide some information on what came before, but it is a lot to pack into a single episode recap/continuation. Season 10 is just 6 episodes (I guess they were testing the waters), but we are now 6 episodes into season 11, which looks like it will be 10 episodes long. If you were an old X-Files fan back in the 90's, then definitely dive into seasons 10 and 11 - it's like seeing old friends!

You can still find all of season 10 and what has aired so far of season 11 On Demand for free. It looks like ALL 11 seasons are available online for free at the Fox website. You can also stream The X-Files on Amazon for $1.99 an episode or $14.99 a season. Here are links to season 1, season 10, and the current season 11.