Friday, April 24, 2015

Ground-Breaking Research Into ME/CFS Immune Dysfunction

I am about two months late with this exciting update in the world of ME/CFS research. I've had more than my share of bad days this winter and spring, and I also wanted to gather more information so that I could better explain the impact of this ME/CFS research breakthrough.

On February 25, Columbia University's Mailman School of Public Health (note: major university) announced the results of its Center for Infection and Immunity's exciting new research to identify the exact characteristics of the immune dysfunction in ME/CFS. Columbia sent out a press release summarizing the research, with the full study report available here.

A word of warning before you read the press release or any news stories based on it: whoever wrote it was very poorly informed about past ME/CFS research and proclaimed this new study, "the first robust physical evidence that ME/CFS is a biological illness as opposed to a psychological disorder." Eeek - yeah, completely cringe-worthy.  Someone in PR got a bit carried away with that one. Of course, we all know there have been plenty of studies showing the physiological abnormalities present in ME/CFS over the past two decades. Back in 2007, Dr. Nancy Klimas summarized many of these findings in her report, Chronic Fatigue Syndrome: Inflammation, Immune Function, and Neuroendocrine Interactions, which cites over 30 different scientific studies (and by the way, is an excellent scientific article to share with doctors). Since then, there have been more studies on immune dysfunction in ME/CFS.

So, try to ignore the flagrant errors in the headlines surrounding this new study, and let's instead focus on what IS ground-breaking about it:
  • It was the largest ever (by far) study of ME/CFS immune dysfunction, involving almost 300 patients and over 350 healthy controls from multiple locations. Since many previous ME/CFS studies have been very small (often due to a lack of funding), the mere size of this study is big news. The smaller studies are often ignored in literature reviews, like those recently done/in progress with P2P and IOM - this one will not be ignored.
  • It was also the broadest ever immune study of ME/CFS in terms of scope, looking at 51 different immune biomarkers in blood plasma samples.
  • It was headed up by a world-renowned virologist, Dr. Ian Lipkin, which brings immediate credibility and visibility to the study (something ME/CFS studies rarely get) and included eleven other co-authors who include the world's top ME/CFS clinicians and researchers, including Dr. Nancy Klimas, Dr. Daniel Peterson Dr. Jose Montoya, Dr. Susan Levine, Dr. Lucinda Bateman, and more. This combination of credible outside researcher plus top ME/CFS specialists is unique to date.
  • For the first time ever, this study identified significant differences in immune function between early ME/CFS patients (less than three years) and those who've been ill for more than three years.
In short, the study showed that early-stage patients who'd been sick for less than three years showed elevated levels of many different cytokines (immune markers), indicating an immune system over-reaction that is familiar to all of us who've suffered from recurring sore throats, swollen glands, flu-like aches, and other immune-related symptoms. These results support the long-held theory that ME/CFS is a "hit-and-run" event, where some sort of infectious trigger (mono and Lyme are common ones) sets off an immune system over-reaction that continues even after the infectious agent itself quiets down, similar to a car stuck in high gear. This theory has been generally accepted among experts and patients for many years, but this study provides even more evidence.

A completely new development from this study was the finding that there is a difference between early-stage patients and later-stage patients. Three years seems to be the turning point, and after that, certain immune markers (various cytokines) show a marked decrease. The report itself includes details of all 51 biomarkers measured - which ones were high in the early stages, which ones were low, and which ones shifted after the 3-year mark (there are lots of graphs in the report to help explain the results).

One thing that confused me - and that I'm still not certain I completely understand - is how this new research fits into the already-understood aspects of immune dysfunction in ME/CFS. Two points have been reiterated over the many years of studies:
  • ME/CFS is neither a condition of autoimmunity nor of immune deficiency; instead, our unique type of immune dysfunction is a mixed bag - certain immune elements are over-active and others are under-active.
  • ME/CFS is a condition of Th1-Th2 imbalance, usually identified as Th2 dominant. I explained this in an earlier post about immune dysfunction in ME/CFS, but briefly, it means that our immune systems tend to over-react to viruses and allergens and under-react to bacterial infections, among other things. Certainly, our own experiences here, with my sons and I, have always born this out - allergies got worse with ME/CFS, we developed new food intolerances, we rarely "catch" viruses like colds or flu (though the resulting immune stimulation from exposure can feel like a virus), and any tiny bit of congestion always turns into a secondary bacterial infection, like bronchitis or a sinus infection.
From what I read about this new study, it doesn't negate those previously held theories about ME/CFS but adds more detail to our understanding of the immune dysfunction and shows new evidence of a difference between early and later-stage disease that hadn't been observed in a research setting before.  Personally, my son and I still seem to have the same type of immune dysfunction (though definitely fewer sore throats), though that may be in part due to our treatments aimed at normalizing the immune system which might reduce these differences. If anyone knows differently or understands it better than I do, please share your knowledge!

Finally, I asked a few questions of Dr. Susan Levine who is a co-author of this study, Chairperson of the CFS Advisory Committee, and our own ME/CFS doctor. Her comments on the meaning and effects of this new study include:
  • The differences in early- and late-stage patients found in the study mirror what she often (though not always) sees in her own patients - newer ME/CFS patients tend to have more prominent immune-related symptoms like sore throat, swollen glands, flu-like aches, etc. while patients in the later stages of the disease tend to have pain and cognitive dysfunction as more prominent symptoms (of course, all have the tell-tale exhaustion and post-exertional crashes).
  • As for immediate applications for patients, that is probably still a bit farther off. She said that the kind of cytokine testing done in the Columbia study is not yet available in commercial labs. This may not change anytime soon until there are ways to treat the abnormal cytokine levels - currently, there is no impetus for labs to add these tests.
  • In comparing the short-term and longer-term patients, she said they "are also looking at site variability, differences in gender and ethnicity and other environmental influences (urban vs suburban vs country dwellers) to see if there is an impact."
  • "While these are interesting findings, it would be good to look at T, B, and NK cells in addition, as well as autonomic dysfunction, metabolic changes, and pain levels in these `short duration' versus `long duration' patients to see if there is some additional correlation with other parameters."
So, essentially, this is exciting new research that does represent some breakthroughs and new ideas, though there may not be much immediate effect that patients will see. The finding of a difference in short-and long-term patients will certainly be of interest to clinicians who may slightly vary their treatment protocols for newer versus longer duration patients; however, the overall immune dysfunction is still a mixed bag, meaning that medications to suppress or stimulate the immune system will still have limited efficacy for ME/CFS patients. We are still best off trying to treat with immune modulators to normalize the immune system.

And, of course, this new study brought much-needed visibility to our disease and should provide plenty of fodder for further study and new interest from other outside researchers. And, hopefully, those silly headlines along with the hard data will finally put to rest the outdated idea that ME/CFS isn't a "real" disease.

Does this study fit with your own ME/CFS illness history? Did you notice a change or difference after the 3-year mark?

(For more information, see articles published by The Atlantic and by Science Advances.)

Tuesday, April 21, 2015

Recipe: Mostly Sugar-Free Dark Chocolate Bark

A little over a year ago, my son and I switched to a Paleo diet and got super strict on limiting sugar in an effort to get our yeast overgrowth/chronic thrush under control and to improve out mitochondrial function and energy. It has definitely helped (though we both still have yeast flare-ups and have to stick to the diet). Note that if you read that older post linked above, my son is doing much better now and no longer needs to be as strict as when he started - we both eat a fairly standard Paleo diet now with plenty of variety, including fruits.

Finding a source of dark chocolate treats with little to no sugar was a priority for both of us! We tried commercial sugar-free chocolates and found a couple that we liked OK (Weight Watchers' brand peanut butter cups and WW or Whitman's brand toffee squares are both pretty good), but they do contain some dairy, we shouldn't eat too much of the sugar substitutes they contain, and the chocolate they use isn't really top quality (we are connoisseurs, after all). We also both enjoy super-dark chocolate - if you look for 80% cocoa or higher, it contains less than 5g of sugar per serving. But, again, that's not a perfect solution.

So, I experimenting with making our own dark chocolate bark, starting with unsweetened chocolate (baking chocolate) and adding small amounts of Stevia and coconut sugar (which is OK for Paleo and for yeast). Here is the resulting recipe (and here is an earlier recipe I posted for Chocolate Sunflower Butter Cups):

Finished Chocolate Bark - Ready to Eat!

Mostly Sugar-Free Dark Chocolate Bark

4 oz (1 package) unsweetened baking chocolate
1 tsp Stevia
1 Tbl coconut sugar

Optional Additions:
Unsweetened coconut
Sunflower seeds
Pumpkin seeds
Chopped nuts
  1. Chop up chocolate into small pieces and put in a glass bowl or 4-cup glass measuring cup. Microwave in short intervals, stirring in between, until chocolate is mostly melted (the exact time will depend on your microwave; I usually start with 1 minute, stir, then another 45 seconds).
  2. Stir chocolate (some of the chunks will still appear solid but will incorporate into the melted portion as you stir). Add Stevia and coconut sugar, to taste, and stir well. The amounts listed above will give you the equivalent of very dark chocolate. Add more if you like yours sweeter. Microwave for another 30-40 seconds and stir again.
  3. Add whatever additions you like and stir. I love coconut, so I add lots of unsweetened flaked coconut to mine, plus some sunflower seeds for a bit of salty crunchiness. My son hates coconut, so he liked a mix of pumpkin and sunflower seeds in his. You could also use some chopped nuts, though seeds are less inflammatory than nuts for those with immune disorders.
  4. Spread the mixture out on a piece of waxed paper on the kitchen counter (I put a layer of foil under the wax paper so the hot mixture doesn't melt the wax onto the counter) and let cool at room temperature.
  5. When solid, break the bark into pieces. Store in an airtight container or plastic bag at room temperature (refrigerating chocolate can change its taste and texture).
NOTE: Stevia and coconut sugar are acceptable for both Paleo and anti-candida diets and won't feed yeast. The coconut sugar doesn't dissolve completely - it leaves a slightly crystalline texture in the chocolate. If you don't like that, you can experiment with using just Stevia, but if you add too much, it may have an off-taste.


© Suzan L. Jackson 2015
(Do not reprint or publish without written permission from the author)

Warm Chocolate Bark after being spread on wax paper


Monday, April 20, 2015

Movie Monday 4/20

I have been neglecting this blog! I didn't have any time last week for any writing at all, so it's not just the blog - things have just been busy, plus I wasn't feeling well last week (my one week out of 15 when I get my period). I am doing better now and hoping to finally catch up on some posts this week that I have been meaning to write for ages!

First, my weekly Movie Monday post...We saw two movies last week, one a recent Oscar contender and the other an extremely obscure movie from the 1950's!

Friday night, we rented The Imitation Game, starring Benedict Cumberbatch as Alan Turing, the brilliant but socially awkward man who helped win WWII by decrypting the famed German Enigma code. Keira Knightley co-stars as the only woman working on Alan's team. We both enjoyed this historical drama very much. Neither of us knew much of the story before we watched the movie. The film moves back and forth in time between Alan's childhood being bullied at boarding school and his reliance on his one beloved friend there, his work on Enigma during the war, and a point after the war, in the 1950's when a local police officer decides to investigate Turing, thinking he might be a spy. In this way, you get insight into Turing's personality and his life, as well as the behind-the-scenes story of his top-secret work that changed the fate of the world. Cumberbatch did a marvelous job as Turing, and Knightley's character gave me insight into what it might have been like to be a very intelligent woman at a time when women had few choices in life. Overall, an engrossing and entertaining movie.

Saturday night, we watched a really bizarre movie from 1952 called The 5000 Fingers of Dr. T with some good friends. Our friend remembered watching this movie on TV when he was a kid, so when it aired last week on TCM, he recorded it. As you can probably tell just from the title, this is one weird movie! It was written and developed by Dr. Seuss, which tells you most of what you need to know. It's the story of a boy named Bart who takes piano lessons from Dr. Terwilliker. Bart dreams that he is trapped in a crazy castle, held captive by the evil Dr. Terwilliker, who wants to capture 500 boys to all play on his giant piano. Yeah, as evil plots go, this is a strange one! The whole movie is surreal but lots of fun. Oh, and did I mention it's a musical? So, picture a bunch of Dr. Seuss books all combined together, with lots of singing and dancing, along with doses of Alice in Wonderland, Willie Wonka, and Wizard of Oz. The whole thing is very Seussian - the sets, the colorful costumes, the song lyrics - so this is perfect for Seuss fans. It's strange, but I enjoyed it - lots of fun! I think our sons would have liked it when they were little.

Have you seen any good movies lately?

Monday, April 13, 2015

Movie Monday 4/13

Last week was an extraordinary week for us, movie-wise. My husband and I were camping at the beach and the weather was pretty much the worst imaginable - low 40's and raining for days! So, instead of lying by the campfire in the evenings, we went to the movie theater not once but twice!! It was a real thrill for us. We shared popcorn (not Paleo, but a nice treat) and enjoyed the warm, dry theater and two good movies (plus another on DVD when we got home):

First, we saw The Second Best Exotic Marigold Hotel at the theater. We both loved the first movie, The Best Exotic Marigold Hotel, for its humor and sense of joy, and though reviews of the sequel said it wasn't as good, we enjoyed it just as much. The same fabulous all-star cast is back, including Judi Dench, Maggie Smith, Bill Nighy, and more, as residents of the now-fixed-up-but-still-shabby-chic hotel. Dev Patel (of Slumdog Millionaire fame) is also back as the indomitable Sonny whose disposition matches his name. Now, Sonny is preparing for his wedding and is also in negotiations with a large corporation for a franchise for a second hotel he wants to open nearby, based on the success of the first. He's told that an anonymous guest will come to check out the hotel. When the handsome Richard Gere arrives, Sonny assumes he is the reviewer. The expected farcical comedy follows but with the same warmth and sense of heart of the first movie and the same humorous yet honest exploration of aging. This movie even comes complete with a Bollywood-type musical production. We left the theater with big smiles on our faces - a guaranteed feel-good, uplifting movie and a lot of fun.

The next night, we went back to the theater to see Insurgent, the sequel to Divergent, based on the series of books by Veronica Roth. As you might guess, this one was pure action and suspense. Tris, played by Hollywood's latest hot new star, Shailene Woodley) and Four are back as their dystopian community organized by factions begins to break down. War seems inevitable, and much of the movie is about deciding who to believe and who to follow, as the displaced Dauntless faction searches for a place to belong and Tris tries to make peace with her Divergency. This movie is pretty much nonstop action, with lots of running, fighting, jumping, and chasing, but it is all set within an interesting and unique dystopian plot. There is plenty of suspense here, and we enjoyed rooting for the good guys.

After getting home from our cold, wet camping trip, we were happy to be back on our couch and recliner, respectively, to enjoy another good movie. We had a free rental from Redbox, so we watched Interstellar, a movie we've both been dying to see since its theater release and that our college son loved. Interstellar is set in a dismal future, where nonstop dust storms are ruining the world, the only crop that will still grow reliably is corn, and there is a worldwide hunger crisis. Most people have to become farmers and are just barely hanging on. Matthew McConaughey plays a father who trained as an astronaut before the space program was dismantled and is now a reluctant farmer. He has a son and a daughter whom he loves and is particularly close to 10-year old Murph, his daughter. That makes it especially hard when an opportunity comes up for him to journey deep into space on a long-term mission to basically save the human race. He goes, along with a group of scientists, including one played by Anne Hathaway, to find another planet that humans can survive on. This is an epic movie covering generations about topics as far-reaching as family, the future, the human race, and the nature of time. My son and I both loved it and were especially moved by one surprise element. My husband enjoyed it for the most part but thought it was a bit too long (it is long, at just under 3 hours) and complicated. I loved every moment of it and found it suspenseful, moving, and thought-provoking, blending science fiction with a family drama.

So, we had a great movie week! Have you seen any good movies lately?

New ME/CFS Guide for Clinicians

Back in February, I wrote about the big news that ME/CFS had a proposed new name, SEID, and its first-ever diagnostic criteria in the U.S.

The IOM group that developed the criteria took that a step further and came up with a relatively brief and easy-to-use ME/CFS Guide for Clinicians. You can print the guide at that link (just 20 pages, total) and share it with your doctor (some of those pages are title, table of contents, members of the committee, etc. - the heart of the document is nicely summarized and includes easy-to-use charts and graphs). In fact, share it with every doctor you see! This straightforward, clear explanation of ME/CFS had the potential to make a huge difference where it counts: with the family doctors, nurses, and primary care physicians who are so often the first medical professionals that someone with ME/CFS encounters.

I've printed a copy to take to my own doctor when I see her on Friday. She already knows how to diagnose ME/CFS - she diagnosed me after a year of mystery illness that no other doctor could figure out. However, I am hoping she will share it with the other doctors and nurse practitioner in her practice.

So, print a copy now and help to spread the word!

Sunday, April 12, 2015

Weekly Inspiration: Emotional First Aid

Earlier this week, I wrote here about happiness and optimism. Lots of people told me they could relate to that post, that they too found joy in small things. One online friend said she herself was in a similar state of mind right now, having also come through a recent bad period and finally feeling a bit better - she described it as " a ridiculous enthusiasm for everything" (a perfect description) and told me how excited she was over the amazing omelet she made herself for lunch!

But, I know that there are at least as many of you out there who could not relate to that post, who are not happy, who feel overwhelmingly beaten by this terrible disease, and who feel that you have nothing to look forward to. As another friend put it, sometimes "one is simply dealing with this minute and the next, and hoping for some point of light and solace in that dark place, as the most we can manage." And I get that that, too, because I have gone through periods like that, early in my illness even experiencing true depression for the first time in my life.

Today I found this TED Talk that I hope will be helpful to you. It's by a psychologist named Guy Winch who talks about "Why We All Need to Practice Emotional First Aid." He speaks to the need for emotional hygiene, just like physical hygiene, though something that most of us overlook.

In his talk, he discusses loneliness, helplessness, failure, rejection, and focusing/obsessing over negative things - all crippling emotions that can actually affect our physical health if they go untreated or are not addressed. He explains how our emotions can fool us and the importance of  prioritizing our psychological health, that we should treat emotional pain just like we do physical pain. You can listen for yourself, in this short talk:



I really enjoyed this talk and found it fascinating. Even with my current positive state of mind, I learned some tips here that will be useful to me - his section on ruminating over negative things really hit home for me!

I hope you find this talk as inspirational as I did. Enjoy this weekend...and remember to take care of your mind as well as your body!

Friday, April 10, 2015

Living for Today and Looking Forward to Tomorrow

Once again, I haven't been online much this week. We had one son returning from spring break in Florida, another leaving for spring break in the Bahamas with his girlfriend's family, a 2-day Easter celebration to accommodate both boys' comings and goings, and a mini-getaway this week for my husband and I. Our sons enjoyed tropical spring breaks and we drove 2 hours to camp at the local beach, where the weather was low 40's F and raining! ha ha What's wrong with this picture?

Obviously, from all this activity, I am feeling much, much better, thanks to getting this latest yeast/candida flare-up under control. After a couple of months of infirmity, I am now back to my recent baseline, which is pretty good (see my 2014 summary and How I Improved in 2011 for information on which treatments have helped me).

I very much enjoyed our few days away together, though this is a big change for my husband and I - our first time ever camping in our pop-up trailer on our own and our first spring break without the boys in 20 years. We had a very nice time, in spite of the weather. However, I realized last night that I was also happy and excited to be back home and getting back into my normal routine. My head was spinning this morning with all the things I want to do - blog posts, articles to write, ideas to pitch for writing, etc.

I have been trying to compose this post in my mind all day, but I'm having trouble describing exactly how I am feeling.

Basically, I am very happy with my life and looking forward to every day. I am still quite limited by my illness - in fact, laundry did me in this morning! - but I feel content with what I have and excited for everything that comes next.

Perhaps this feeling is so exciting to me now because I know what it is like when it is missing. During the first years of my illness, I felt a mental fog and lack of motivation that were directly tied to the severity of my illness. Like many people with ME/CFS, when I treated underlying infections with antivirals, the first improvement I noticed was a mental clarity and a return of enthusiasm and motivation, like someone had lifted a dark curtain from in front of me. That's why I no longer take these feelings for granted.

I still feel like I'm not explaining this well.

Life with ME/CFS has given me a gift - a sense of gratitude for what I have and an ability to find joy in small things. Even when I am sicker and more limited - like I was for the past two months - I am still excited about the possibilities in my life. There are so many good books to read, audio books to listen to, great movies and TV shows to watch. Even when I am stuck on the couch, I can still write a bit (not as much as when I feel better), and I am bursting with ideas.

At the same time, my husband and I are starting a transition that will last for several more years. We have one son in college, living on his own, and one who is a junior in high school and beginning to look at colleges (and rarely at home anymore!). Soon, they will both be out of the house. In the meantime, they have already gone off on their own spring break trips, instead of our old family trips, and have told us they no longer want to take a long family vacation in the summer. And while this makes me sad and very nostalgic for their younger years, I also feel a sense of excitement about the future. My husband and I are starting to talk about what kind of a camper we might get when we trade in the pop-up in a few years and the traveling we want to do on our own. There is a lot to look forward to and so much that I am excited about.

I wrote previously (back in 2007!) that my chronic illness psychologist, whose grown son had ME/CFS, used to like to ask me "What Are You Looking Forward To?" It was her way of testing my mental state, to see if I was depressed or merely feeling frustrated with my limitations. Right now, there are so many things I am looking forward to, so many things I want to do. Yes, I am still limited by my illness, and I still tend to plan far more things to do each week than I can possibly accomplish, but I am happy. I am living for today and enjoying each moment while also looking forward to tomorrow.

What are you looking forward to? What makes you happy?

Friday, April 03, 2015

Essay Published on Mamalode

My essay, While They Are Sleeping, is featured today on the home page of the Mamalode website (and will be available all month).

This is an older one that I wrote many years ago, back when our sons were just 6 and 3 years old, about checking on them while they slept each night before going to bed myself. It's something that I think any parent can relate to and makes me feel quite nostalgic, since my "boys" are now 20 and 17 and tower over me!

I hope you enjoy the essay - please share it with your friends!

Monday, March 30, 2015

Movie Monday 3/30 - the TV Edition

We didn't watch any movies this past week (nor the week before, since we were away for the weekend for my grandmother's funeral), so I thought I'd do a TV edition of Movie Monday.

Some people think we watch a lot of TV at our house, but as most of you probably understand all too well, it's a nice activity to enjoy with family members when you are too wiped out to do anything else! I pretty much hit the wall by 7 pm each evening, so my husband and I enjoy watching a couple of our favorite TV shows together, before we go up to bed at 9:30 to read. In addition, I usually watch something by myself at lunchtime - it's a nice way to wind down before my nap and give me a chance to watch something that the rest of my male-centric household won't watch with me! Finally, when my college son comes home on Sunday afternoons, he is usually completely worn out from the weekend, so he likes to catch up on some favorite shows with us. Here are some of our current favorites airing at this time of year:

My husband and I have a long list of shows that we enjoy watching together each evening. Some are old favorites, like Grey's Anatomy (my husband has pretty much had enough of it but I still love it and he still watches it with me) and The Good Wife (still as fabulous as ever!). We also enjoy The Blacklist, which just gets better and better, and Perception, a lesser-known series currently in its 3rd season about a schizophrenic neurology professor, played wonderfully by Eric McCormack, who helps the FBI solve cases.

Two of our current favorites are The Americans, about Russian spies living as a regular American family in the 1980's - an amazing show that is better every season! - and Madam Secretary, a new show starring Tea Leoni as the Secretary of State and Tim Daly as her husband, a renowned Religious Studies professor. It has its flaws - sometimes the problems are wrapped up a bit too easily - but Leoni and Daly are both excellent, as is the rest of the cast, and we are enjoying it. And, of course, Mad Men comes back for a final season this week!

On DVD, we have just finished watching the final episode of the final season of Treme, one of the best TV shows ever! It's set in New Orleans (where we used to live) after Hurricane Katrina. The music is just incredible, and the characters now feel like old friends - we were sad to say goodbye to them this weekend. If you've never seen this show, check it out.

It is rare that we can talk our 17-year old son into sitting and watching a TV show with us - he is usually running off to be with his friends or his girlfriend! Mostly, he likes sitcoms, and some of our favorites include Brooklyn 99, The Goldbergs (set in the 80's), Modern Family (best comedy EVER), and our latest discovery, Fresh Off the Boat. He will occasionally watch Bones with us, one of his old favorites. There is just one new drama that he will enthusiastically watch with us: How To Get Away With Murder. Wow, this is a unique, fast-paced legal thriller that will keep you glued to the screen. We all love it.

When our older son comes home on Sundays, he loves to catch up on The Following, The 100, Elementary, or NCIS - New Orleans with my husband and I. He and his Dad watch Vikings while I take my nap - they love it!

Finally, I look forward each day to relaxing over lunch with something the rest of the family won't watch with me! Two of my favorites were Parenthood and Glee, which both recently ended - forever! Like Glee, we all used to watch The Amazing Race together as a family, but everyone else lost interest, so I am watching that on my own now, too - I still enjoy it! Sometimes, I watch The Mysteries of Laura, which is fun, and I've been working my way through season 1 of The Gilmore Girls lately. If I am rushed for time, I like About a Boy or Moms and am enjoying the brand-new sitcom Younger.

How about you? What are your favorite TV shows? I am especially interested in any recommendations for me to watch on my own, now that Parenthood and Glee are both gone. Any girly-type stuff you especially like? I did enjoy the first episode of Outlander, but that was the only free one. We watch TV On Demand or on Amazon Prime or get DVDs from the library. Any recommendations? What are your favorites?

Sunday, March 29, 2015

Weekly Inspiration: Celebrate!

I thought I'd pull from my own writings for this week's inspiration post, about our attitude of celebration.

At our house, we have always celebrated both minor and major holidays and events in a big way, but this approach became even more important after the three of us got sick. There is nothing like a little celebration to lift the spirits, whether it's for a major holiday, a minor holiday, or even something totally made up! My essay, Celebrate Everything Big and Small, recently published on the Mamalode website, describes how we add celebrations to our lives as a way to add joy to every day. The essay focuses in on the holidays of this time of year - from New Year's through Easter - but if there are no holidays coming up and we need a pick-me-up, we sometimes have Mexican Fiesta Night or some other made-up event.

This older blog post, The Joy of Celebrations, focuses in even more on adding celebrations to a life of chronic illness. Even if you are severely limited and can't cook, you can still celebrate all occasions in your own way - order take-out, ask a family member or friend to put up some decorations, wear a special color for a holiday, listen to appropriate music (I got a CD of Mexican guitar music from the library for Mexican Fiesta Night!), or maybe watch a holiday-themed movie.

Adding celebration and joy to your life is more a matter of attitude than of doing certain activities, and it is even more important if you have kids who are sick.

Now that our sons are 17 and 20, I can see that growing up with this celebration attitude has paid off. Our 20-year old son lives in an apartment with friends on a local college campus, and he and his friends are always hosting parties with really creative themes: they had a James Bond party last year and a Dark Party this year where the only light came from flashlights. I recently asked our son why there was an old pair of red suspenders in the car (which came from the costume box they used when they were little), and he said nonchalantly, "Oh, I used those for our Old Man Party." That's my boy!

So, the next time you are feeling a bit down or have had a bad day or week or month, plan a mini celebration! It'll lift your spirits and take your mind off your illness for a bit. We could all use a little extra joy in our lives.

My son and his two best friends at their James Bond party

Wednesday, March 25, 2015

Yeastie Beasties Got Me Again

Just thought I owed you all a quick post to explain why I've been so absent the past few weeks. I haven't even had the time/energy for my usual Weekly Inspiration posts every week.

Yeast overgrowth/thrush/candida got me again. This has become a chronic problem for me (and for my son, also) that keeps flaring up periodically. It seemed to come from nowhere this time, knocking me flat with extreme flu-like aches and exhaustion for over a month. I figured it out sooner this time than with past flare-ups, but it still took me a full month on antifungal prescription medications before I started to feel well, at the end of last week.

Since there was no obvious trigger this time (for instance, I hadn't been on antibiotics recently) and I have been sticking to all my natural yeast overgrowth prevention approaches (strict diet, strong probiotics, and lots of antifungal supplements), I was puzzled as to why this happened now and hit me so hard. Looking back at my records (it's so helpful to keep track!), I saw the following sequence of events:
  • July - September - took doxycycline (an antibiotic) for Lyme disease (a new infection that I caught early and was able to get rid of fairly easily this time)
  • Early October - got bronchitis and then pneumonia which required two rounds of antibiotics - Zithromax and Cipro
  • Severe yeast overgrowth flare-up (is it any wonder why?) starting in mid-September and continuing through to mid-November - it took about a month of antifungal medications to get that under control.
  • Early February - yeast overgrowth flares up again, just after Mardi Gras 
So, based on that, I am thinking that I didn't completely get the yeast under control back in the late fall - I stayed on the antifungals just long enough to start feeling better and get rid of the thrush in my mouth, but it is likely that there was still too much yeast down in my GI tract. With that being the case, all it took was a couple of days off my usual strict diet (I did have some King Cake and bread pudding for Mardi Gras!) to trigger another bad flare-up.

So, this time, even though I am feeling better this week, after 4 weeks on alternating Diflucan and Ketoconazole, I am going to stay on the antifungals longer (switching to just Diflucan today) in order to make sure the yeast is really under control and I won't be back in the same crisis in another month. A friend who's a veterinarian also suggested taking a preventive dose of antifungals just one or twice a week long-term - she said it works for the animals she treats with chronic yeast problems. So I will probably try that, too, if my doctor agrees.

If you have never considered yeast overgrowth as a factor in your illness, you should. It is very common in people with ME/CFS, especially those who've been sick longer than 3 years, due to the particular type of immune dysfunction we have. It can make all symptoms worse but especially brain fog, flu-like aches, sore throat, and exhaustion. Here's more information on diagnosing and treating yeast overgrowth.

As for me, I am happy to be feeling like myself again (my ME/CFS self but still)! My baseline these days is actually pretty good, and I am thrilled to be back to taking walks and doing small bits of weight work...and just being able to go to the grocery store or drugstore and get off the couch!

Tuesday, March 24, 2015

Live Webcast Tomorrow on IOM Report

Announcement from Solve ME/CFS Initiative:

On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:

- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO

You can watch the briefing live by registering at this link - you must register ahead of time to get the link to the live webcast. I just signed up - it only took a minute.

I was surprised to see that Morgan Fairchild is an ME/CFS patient - I had no idea!

Here's my summary of the IOM report and announcement from last month.

Wednesday, March 18, 2015

Celebrate Everything, Big and Small

My essay, Celebrate Everything, Big and Small, is featured today on the website Mamalode for their March Celebration theme.

Although I wrote the essay for a general audience, it does reference our life with chronic illness. The theme of this essay - that you can add joy to every day of life with celebrations of all kinds - is especially relevant to anyone living with chronic illness.

St. Patrick's Day was yesterday, but we still have the First Day of Spring coming up on Friday and Easter just around the corner. We can always find excuses to celebrate!

I hope you enjoy the essay and that is inspires you to celebrate everything, big and small, in your own way and embrace those moments of joy!

Monday, March 16, 2015

Movie Monday 3/16

I continued to battle the yeast demons last week but finally started to feel a bit better on Thursday, after 3 full weeks on antifungals. Not quite out of the woods yet but getting better and slowly returning to my own normal.

We had a mostly quiet weekend here, though we did manage to get out for dinner Saturday night and then got a DVD to watch:

I was very excited to see Before I Go To Sleep at Redbox! We both read the book and loved it (here's my book review), so we've been wanting to see the movie since its (too brief) theater release. Its release was mostly overlooked last year with all the buzz about Gone Girl at the same time, though I much preferred Before I Go To Sleep when I read both books. The movie adaptation was well done.

Nicole Kidman stars as Chris, a 40-year old woman with a type of amnesia where she can only retain 24 hours of memories. Whenever she goes to sleep, her recent memories, before the age of her mid-20's, are wiped clean (this type of amnesia really does exist, as described by Oliver Sacks in his book Musicophilia). So, she wakes up every morning thinking she is in her mid-20's and having no recollection of her husband who is asleep in the bed next to her. Her husband, Ben (played by Colin Firth), has covered the wall of their bathroom with photos of the two of them and their life together and Post-its reminding her of the important details of their lives. Every morning, she wakes up terrified, and he calms her down and patiently explains that he is her husband and that she had an accident and lost her memory. It's a frightening, yet repetitive routine. Every day is pretty much the same until Chris starts seeing a therapist who gives her a camera to make a video journal each night before bed to help her remember things. With the help of the camera and the therapist, Chris begins to remember things, but nothing makes sense to her.

This is an exciting thriller based on a unique premise. The movie does a great job of putting the viewer inside Chris' perspective so that you don't know who to trust or what to believe, and the tension mounts as Chris slowly begins to put some of the pieces together. A few details were different than the book, but the movie sticks pretty closely to it in most respects. We both enjoyed it.

Have you seen any good movies lately?

Monday, March 09, 2015

Movie Monday 3/9

My husband was out of town all last week and then got stranded in Texas for the weekend, too, due to the snowstorm here, so I watched two movies on my own (and also got hooked on The Gilmore Girls!):

I watched Young Adult, starring Charlize Theron as Mavis, a 30-something divorced author of YA novels. Mavis is clearly unhappy with her life, barely going through the motions and spending a lot of time either drunk or hungover and/or sleeping with strangers. When a baby announcement arrives from her high school sweetheart, Buddy, she gets it in her mind that the answer to all her problems lies in simply winning Buddy back. She heads back to her small hometown, intent on reviving their old romance. Since Buddy is now married and has a newborn daughter, things don't quite go as Mavis planned. While basically stalking Buddy, she runs into another former classmate, Matt, who was permanently disabled by some bullies in high school. This movie was billed as a comedy, but I found it pretty depressing. True, Mavis does make a fool of herself going after Buddy and being stuck in her popular girl high school persona when everyone else seems to have moved on, but it all felt more uncomfortable and cringe-worthy to me rather than funny. Supposedly, it's a dark comedy, but it seemed kind of tragic to me. The movie is very well-done, however, with a good script and acting. It just wasn't my cup of tea.

Chef, in contrast, is an uplifting and thoroughly enjoyable movie about food, family, fatherhood, and friendship. Jon Favreau stars as Carl, the accomplished and talented chef of the title, who is stuck under the thumb of an overbearing restaurant owner, played by Dustin Hoffman. John Leguizamo plays Carl's loyal line cook and enthusiastic best friend. Carl's life seems to be falling apart, as his ex-wife, Inez (played by Sofia Vergara), urges him to spend more time with his son, Percy, and leave the restaurant. She wants him to open a food truck, supplied by her first ex-husband, a quirky guy played by Robert Downey, Jr. Fed up and with few options, he finally gives into the food truck idea, and the whole family heads to Miami to pick it up.

The food porn in this movie is amazing! My mouth was watering, and the grilled cheese scene alone just about killed me (I'm dairy intolerant and miss cheese so much!). But this is far more than a movie about food - it is also filled with great music, family drama, humor, and one of the best road trip scenes ever. They drive the food truck cross-country, from Miami to L.A., in scenes filled with mouth-watering food, foot-tapping music, and a lot of fun. The scenes in New Orleans made me home sick. This film is well-written, beautifully produced, and filled to the brim with excellent performances by great actors. All in all, this is a gem of a movie, filled with joy, and I loved every minute of it. It is guaranteed to put a smile on your face, and those amazing cooking scenes inspired me to get back in the kitchen and get more creative this week!

I almost forgot...I actually went to the movie THEATER to see a movie on the big screen last week! My annual movie venture. A friend and I enjoyed a rare evening out, with dinner and a movie. We saw Still Alice, which is based on a wonderful novel by Lisa Genova. Julianne Moore stars as Alice, a 50-year old world-renowned linguistics professor at Columbia University (though in the book she worked at Harvard) who develops early-onset Alzheimer's disease. She is married - Alec Baldwin plays her husband - with two grown daughters and a grown son. To make matters worse, the kind of Alzheimer's she has is genetic, so her children are also at risk. The movie follows Alice from her first inklings that something might be wrong through her diagnosis and her very quick decline. The movie was just as good as the book, and Julianne Moore really earned her Best Actress Oscar. I cried so hard at one point - while Alice is giving a heartfelt speech during her decline at an Alzheimer's convention - that I actually floated my contact lens right out of my eye and had to run to the restroom to get it back in! Although it is heart-breaking, this movie is also about life and love and the strength of the human spirit. Any movie that can make you feel that much is a winner in my book.

Have you seen any good movies lately?

Thursday, March 05, 2015

Weekly Inspiration: How To Talk To Yourself

For this week's inspiration, I have turned to someone I often turn to when I need help coping or need inspiration: Toni Bernhard.

Toni is a long-time online friend who also has ME/CFS, but more importantly, she is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, as well as the author of a monthly column on living with chronic illness in Psychology Today. I highly recommend How To Be Sick - it's an inspirational and thought-provoking book that has helped me a lot. I still need to read and review How To Wake Up. I think I could use it about now.

In this month's column in Psychology Today, Toni writes about How to Talk to Yourself. As with all of her writing, it is an insightful essay that I found very helpful. In it, she discusses how positive self-talk can help you to feel better and have compassion for yourself. This is something I really needed to hear today, both because of on-going struggles with a bad crash and also ongoing struggles in an important relationship in my life. I want to write out some of the quotes that she includes in this essay in large letters and post them all over my house!

Two of my favorites:
"The greatest griefs are those we cause ourselves" - Sophocles

"Holding on is believing that there's only a past; letting go is knowing that there is a future." - author Daphne Rose Kingma

I hope you find Toni's words as inspirational as I did today. You can link to some of her other insightful posts at the bottom of the page. And I highly recommend her book, How To Be Sick.

Tuesday, March 03, 2015

2015 Health-Related Goals

Oh, it's March already? Well, I was a little late this year in setting my annual goals since my son was home crashed all January and now I am even later in posting about it, but you know my motto - better late than never!

Instead of resolutions at the start of a new year, I set goals with measurable objectives. The big goals stay pretty much the same from year to year, but the objectives shift and change depending on how things went the previous year, what I want to accomplish in the new year, and my priorities. I used to set annual goals and then forget about them until December (when I'd be disappointed!), but I find that focusing on measurable objectives and tracking them every week helps to keep me on track - I get more done, I feel better about myself, and by the end of the year, I feel I have made progress. In case you missed it, check out my post on my progress & improvements in 2014 (relevant to my health).

I have 6 big-picture goals that never change:
  1. To have strong, fulfilling relationships with family & friends
  2. To be a writer, writing what I enjoy, and contributing to my family's income
  3. To spend time outdoors with friends & family, doing activities that I enjoy
  4. To create and maintain a comfortable, happy, nurturing home environment
  5. To be healthy
  6. To be financially stable enough to take care of our family and reach our long-term goals
So, in this post, I will focus mainly on my objectives for 2015 for Goal #5, though other objectives also contribute to my health, like spending time outdoors, having healthy relationships, etc.

Some of my 2015 Objectives, specifically related to my health:
  • Do 4 fun things for myself each week (I tend to focus on others so this helps me remember to do something for myself, too)
  • Get together with friends once a week
  • Go outdoors at least 10 minutes a day (helps my state of mind SO much!)
  • Go camping at least 2 times in addition to vacations
  • Try new treatments (we tried 9 new things last year)
  • Walk at least 3 times a week
  • Do gentle yoga stretches at least 5 times a week, for at least 5 minutes
  • Do muscle strengthening at least 3 times a week (this is usually about 10 min, lying on the floor to keep my heart rate down)
  • Meditate at least 10 minutes a day
  • No computer after 7 pm
  • Rest when symptoms flare (a tough one for me!)
  • Take one day "off" per month, with no obligations or to-do's 
I did very well on my health-related goals last year, so I have high hopes to continue improving this year. I'm off to a rough start, dealing with a bad thrush/yeast overgrowth flare-up again right now, but even when I am crashed I can do things to help myself, like meditation and forcing myself to rest!

I know I tend to be very analytical and most people probably don't get this detailed in their goals, but do you have any health-related goals for yourself for this year?

Monday, March 02, 2015

Movie Monday 3/2

I felt pretty awful for much of last week with yet another flare-up of yeast overgrowth, so Friday night was take-out and DVD night!

We got Chinese food and watched Philip Seymour Hoffman's last movie, A Most Wanted Man. I'd heard good things about the movie before (especially in light of it being Hoffman's last work), but I didn't realize it was based on a thriller by John Le Carre. Most of his novels are set in the Cold War, but this story is a more modern one, set in the post-9/11 world. First a little history that I hadn't heard before: apparently, the 9/11 attacks were planned and plotted in the port city of Hamburg, Germany. Ever since then, both German and international intelligence agencies have been keeping a close eye on Muslim communities there, searching for any signs of terrorist activity.

In the film, Hoffman works for a small, secret organization in German intelligence, tasked specifically with ferreting out terrorist activity. His group notices a suspicious looking man at the airport, a half-Chechen, half-Russian Muslim man who is acting nervous and evasive. They watch him and everyone associated with him very closely as he moves around the city. Rachel McAdams plays an idealistic young lawyer who specializes in helping those seeking asylum, and William Dafoe plays a banker she contacts about some money that the mysterious man's father left him. Soon, other agencies are interested in the man, too, including the US State Department (with an embassy employee played by Robin Wright). The big question: is this man just an abused and persecuted person seeking refuge? Or is he a terrorist plotting another bombing? Most parties want to apprehend & imprison him first and ask questions later, but Hoffman and his group would rather watch and wait, hoping he will either lead them to more important people in a terrorist network or that he is perhaps an innocent man.

It's a tense thriller, with plenty of suspense. Like all Le Carre adaptations, it's got plenty of plot twists that keep you guessing and is a little bit complicated to figure out at first, but it soon becomes engrossing. This one keeps you wondering right until the last moments. We both enjoyed it very much.

Coincidentally, I just finished a wonderful, moving novel set in Chechnya that gave me the perfect background for watching this movie: A Constellation of Vital Phenomena by Anthony Marra

Have you seen any good movies lately?

(And if you are also interested in what we are reading this week, check out my Monday update at my book blog.)

Happy Illiversary to Me!

13 years ago today, my life changed forever, though I had no idea at the time. I thought I'd share a bit of how it all started (this is excerpted from an essay of mine):

"How it Began: The Beginning of My Journey with ME/CFS

March 2, 2002, was a typically hectic Saturday. I went to a step class at the YMCA. My husband and I ran errands and worked around the house while our two boys played, and we hosted a dinner party for friends. By evening, I was feeling a bit run-down and had a sore throat. I woke up on Sunday feeling rotten and thought, “I must have the flu.”
It certainly never crossed my mind that I might be sick for the rest of my life. I was a healthy, highly energetic 36-year old and was very content with my life. I’d had a successful and exciting career that I’d left two years previously in order to spend more time with my family. I was married to a wonderful man, had two sweet sons, and was launching a new part-time career in freelance writing.  I felt as though my life just kept getting better and better.
Despite feeling awful that Sunday morning, I insisted we go ahead with our plans for a day trip to Baltimore. We stopped for breakfast on our way out of town and drove the hour south to the city to visit the National Aquarium, Harborplace, and the Science Center. I remember that day in Baltimore clearly, even though I felt like I was isolated in a strange kind of fog all day. I sucked on hard candies nonstop to try to soothe my sore throat which was worse than any I'd had in years. I can remember clinging to the railings at the aquarium, barely able to stay on my feet. I had never felt so sick before in my life.
Everyone gets sick once in a while, especially with small children in the house, so I figured it was a virus. Once back home, I settled onto the couch, let my husband take over much of the household work, and waited to start feeling better. After a week, I did feel mostly better and resumed my normal, active life. We even took a planned trip to my sister’s house in Connecticut to see my newborn niece.
A few days later, I felt horrible again – exhausted, achy all over, sore throat. Could I have caught another virus so soon? What was going on? This didn’t seem like any flu I’d ever had before.
After several weeks with no improvement, I went to see my doctor. He ordered blood tests for the most common culprits: mono, Lyme disease, parvovirus, and a basic blood analysis. The good news came back:  everything looked normal. So why was I still sick?
During that first month, I spoke with my grandparents in Rochester, NY. They were both sick also and had been for a full month. Their doctor told them there was a particularly nasty flu virus going around. I hadn’t had any of the gastro-intestinal symptoms they’d had or a significant fever, but I still figured I must have the same thing. They were beginning to recover, so I stayed on the couch and waited for my recovery to begin.

Journal Entry, 3/21/02:
Beautiful first day of spring, but I didn’t get to enjoy it much.  I had a very rough day and felt pretty depressed.  I burst into tears 3 times today – once over a TV show!  I feel very fragile.

I’ve been sick for 3 weeks now, and I’m getting a little scared.  I’m so sick of feeling tired and achy, so sick of the couch, so sick of not getting anything done!  I want my life back!  I want my normal energy back!  I want to exercise and play with the kids and go to the grocery store and feel productive!

I never imagined as I wrote those words that my “flu” would turn out to be a chronic disease that would change my life. "

© 2015 Suzan Jackson
 I'm sure the rest of that story is familiar to you - a year of blood tests and doctors' visits, eventually a diagnosis, etc. And, here I am, 13 years later.

I am feeling pretty good today (after 10 days on antifungals, finally getting the yeast overgrowth under control again) and in a good frame of mind. At this point, ME/CFS is an integral part of my life. It's hard to even remember life before piles of medication and supplements, afternoon naps, and carefully monitoring my activity level.

I feel like I am in a good place now. Emotionally, I am happy and rarely get depressed any more (though these past few weeks have been a challenge!) Physically, I am doing much better now than I was 5 or 10 years ago and have found quite a few treatments that each help a little bit - those little bits add up to feeling better, being able to be more active, and having an improved quality of life. (Here's a blog post in my most recent improvements).

I still hope for more effective treatments or even a cure, and the research news lately makes me optimistic that there is real hope for all of us (more on that tomorrow!)

So, Happy Illiversary to me! It's not really a reason to celebrate, but it does provide a chance to reflect on how far I've come. 

Thursday, February 26, 2015

What Would YOU Like to Name Our Illness?

What's in a name? A lot, as those of us saddled with the moniker Chronic Fatigue Syndrome have learned the hard way.

As you've probably heard, a new name has been proposed in the U.S. by an expert committee at IOM, established by HHS: Systemic Exertion Intolerance Disease (SEID). Not everyone is thrilled with the proposed new name, though.

Now, you have a chance for your voice to be heard. Two different organizations are conducting simple surveys on the name so you can vote on which name you prefer and why.

The ProHealth website has a very brief survey - just 3 questions - on the proposed name change.

Paradigm Change has a similar survey with a few more questions on the proposed name change.

Each survey only takes about 5 minutes (or less), so take both!

Both surveys have questions about what name you would choose. Not happy with the current options but not sure what to suggest? My top choice is Neuro Endocrine Immune Disease - it gets at the heart of our illness and lets doctors know exactly what is wrong with our systems (basically, just about everything). NEID was talked about over the past couple of years (I didn't come up with it!), so I was surprised when it wasn't mentioned during all these naming discussions.

Click the links and take a moment to let your voice be heard! You CAN make a difference!

Tuesday, February 24, 2015

Shopping Strategies for ME/CFS

I undertook a big shopping expedition today to Target and Trader Joe's. The two stores are about a 25 minute drive away from us, so I only get up there once every 6-8 weeks or so. This time, I hadn't been since before Christmas, so we were out of everything! This was a BIG stock-up day. I also usually manage the local grocery store once a week.

I know that not everyone with ME/CFS can manage any kind of shopping - ever - but for those who have good days and bad days, like me, here are some of my strategies for shopping, to minimize the payback the next day:

Treat Orthostatic Intolerance. Long before you leave for the store, focus on treating OI. If you can stabilize your blood pressure and heart rate, then you can minimize post-exertional crashes and dramatically improve your quality of life. Some approaches to try:
  • Learn how heart rate affects post-exertional crashes and use a heart rate monitor to monitor your own heart rate.
  • Ingest HUGE amounts of salt and fluids - way more than you think you need - in order to increase blood volume and help to stabilize BP and HR. Just adding extra salt to your food isn't enough. Take salt tablets, use sea salt on everything, drink sodium-enhanced drinks like Gatorade or V-8 juice (before buying any kind of "electroyte drink" or drink mix, check the label to make sure it contains a lot of sodium - many don't).
  • Try medications to help stabilize BP and HR, like Florinef, midodrine, and beta blockers. I couldn't go grocery shopping without crashing until I started beta blockers - now I go almost every week with no problem. They reduce my heart rate to more normal levels, so I can be active without crashing.
When you go shopping:
We're Going To Pump You Up!
  • Pump up your blood volume before you go. I usually drink a 12-ounce can of V-8 juice before I go to the store and also carry my ever-present water bottle (which can also be filled with high-sodium electrolyte drink mix). Remember Hans and Franz from Saturday Night Live? "We're Going to Pump You Up." That's your new motto. And yes, this means I have to stop and use the restroom in every store I go to!
  • Wear your heart rate monitor. I don't always do this now because I know that with beta blockers, I can manage grocery shopping without crashing, but I wore it today because I haven't been doing well lately. Set the alarm for your AT (see this post to estimate it), and listen to it - when it beeps, stop and rest, crouching or sitting if you can or at least putting one foot up on the bottom of the cart and breathing slowly and deeply until your HR comes back down.
  • Commit to Slow Shopping. This was my motto today! I'm hoping to start a new trend. This is probably the hardest thing of all for me because I am naturally a fast person. Today, I consciously moved slowly and deliberately - be the ultimate Zen shopper.
  • Avoid lifting your arms too much. I know from using my heart rate monitor that raising my arms over my head raises my heart rate. I was fine most of the time in Target until I went into the dressing room to try on a pajama top - I pulled my shirt over my head and beep, beep, beep!
  • Let someone else bag. Again, moving your arms, lifting things - it all raises your heart rate. Choose a checkout lane with a bagger or let a store employee know that you need one.
  • Ask for help taking your purchases to the car. I was amazed to find that the grocery stores in Oklahoma (where we used to visit my in-laws) do this automatically! It's more self-serve here on the East Coast, but you can always ask for someone to help you - let them help put the bags in the car.
  • Ask someone at home to help bring your purchases into the house. When I first started wearing a heart rate monitor, I was amazed to find that pushing a heavy grocery cart didn't raise my heart rate too much, but carrying even light bags into the house did. Carrying stuff really raises your heart rate dramatically, so get some help. I bring in the frozen/refrigerated stuff myself and leave the rest in the car for when my husband and son get home. If you live alone, ask a neighbor or friend. Sometimes, I shop with a friend - we get to spend time together and she can help me.
So, those are my shopping tips. Do you have any others? What works for you?

Remember - Slow Shopping!

Monday, February 23, 2015

Movie Monday 2/23

We had a busy weekend, with snow days (actually, school was closed for COLD, not snow) tacked on and a houseful of teen boys most of the time, but my husband and I did find time for one movie. I was pretty badly crashed on Friday (yet another yeast overgrowth flare-up), so my husband brought home 5 Guys take-out and a DVD from Redbox - perfect!

We watched Lucy starring Scarlett Johansson. She plays a partying college student away in Taiwan who unwittingly gets mixed up with some nasty characters. They try to use her and several other poor victims in a criminal scheme, but along the way, something unexpected happens - she gets exposed to a drug that allows her to use 100% of her brain, and she develops all kinds of superhuman powers. Morgan Freeman stars as a renowned neuroscientist who explains that humans normally use only about 15% of their brain's capacity. What follows is an international kick-ass revenge fantasy, as Lucy goes after the villains who did this to her while getting in touch with Freeman's character to tell him about what's happened to her. It's a lightweight confection of a movie, basically an action movie with a sci fi theme and lots of very bizarre special effects. We enjoyed it as a fun bit of escapism, but there wasn't much depth to it.

Have you seen any movies lately? What do you recommend?

Sunday, February 22, 2015

Weekly Inspiration: Never, Ever Give Up

Sorry that it's been a few weeks since I've posted a Weekly Inspiration post - crashes, family stuff, big news in the ME/CFS world - you know how it goes. Best laid plans and all....

So, I took some time this morning to watch some TED talks, which never fail to inspire me, and this one in particular caught my eye and then captured my spirit.

It's called Never, Ever Give Up and the speaker is Diana Nyad, the famous swimmer who broke all kinds of records and swam from Cuba to Florida at age 60. Now, you may be thinking, "What could a world-class, record-breaking athlete have to do with me who can barely walk around my own house?" I thought that, too, but she gives a talk that is engaging, funny, and yes, inspiring that applies just as well to us battling chronic illness as it does to athletes trying to achieve their dreams.

It's a short talk but very powerful (and entertaining as well):



I found her talk applicable to us in two ways. First, I thought of my own never-ending quest to find treatments that will help me to improve. I'm not delusional - I know there is no cure right now, and I am way past the point of most spontaneous recoveries (less than 5 years is the usual rule of thumb). But I have spent the past 12 years trying one treatment after another, reading studies, talking to my doctors, and trying anything that seems promising. I haven't found any one treatment that helps a lot, but I have found many treatments that help a little, and those small improvements add up over time, as evidenced by my improvement over the past few years so that I can now do more and have a better quality of life. So, Diana's motto of Never, Ever Give Up resonated with me in that way. I will keep trying new treatments and keep following and supporting the research and keep helping other people to do the same. I never stop trying, and I never stop hoping for a better tomorrow.

The other way that her talk resonated with me is from an emotional perspective rather than a physical one. To Never, Ever Give Up also means to never give up on being happy and finding joy in your life, in spite of your physical limitations. Sure, we all have times when we are down or depressed, but Never, Ever Give Up means to me that while we are trying new treatments and waiting for new research, we can be fully present in our lives and find small moments of joy in every day.

I hope you found Diana's talk as inspiring and entertaining as I did.

What does Never, Ever Give Up mean to you?

Saturday, February 21, 2015

Survey on Access & Quality of Healthcare for ME/CFS

Leonard Jason, renowned ME/CFS researcher at DePaul University is conducting an online survey of ME/CFS patients on their access to healthcare and the quality of that care, specific to knowledge of how to treat ME/CFS.

This is a very important survey, so I urge you to participate at this link. It only took me less than 10 minutes to complete the survey.

Our family has been fortunate in this area for 3 reasons:
  • I happened to stumble upon a local family doctor one year into my "mystery illness" who immediately recognized that I had ME/CFS, after a full year of seeing all kinds of doctors and searching for a diagnosis. She not only diagnosed my illness but knew the basics of how to treat it and was open to trying new things whenever I brought the latest study results to her. I know now, from other ME/CFS patients, just how unusual this is.
  • We have the means to seek out top ME/CFS doctors and travel to see them. My husband has a stable job, and we have been fortunate to see Dr. David Bell before he retired and now see Dr. Susan Levine in NYC. I spent a lot of time and energy finding these doctors and making arrangements for me and the kids to see them. Granted, most of our money goes toward medical expenses and there is not much left over, but I am grateful we have it to begin with.
  • We have excellent health insurance through my husband's job, including out-of-network coverage.
I am well aware that we are lucky in these respects and that the situation is not nearly so positive for most patients with ME/CFS.

That is why it's so important for you to take a few minutes to fill out this survey and make it known just how scarce good quality healthcare for ME/CFS really is.

Friday, February 20, 2015

Opinions & Editorials on the New Name & Criteria

Unless you've been offline for the past week or perhaps living in a cave in the Himalayas, you have probably seen at least some of the flurry of editorials and opinions about the new name - Systemic Exertion Intolerance Disease - and diagnostic criteria for our illness. I wrote about it last week, when it was announced, and included in that post my own opinions, but I've been curious to see what the mainstream media and some of the more prominent figures in our little world think about it all. So, here is a compilation:

The Media
I was thrilled to see that the release of this report was well-distributed to mainstream media news outlets - in all, over 300 articles and stories appeared! Woohoo!! Not all got it right in their reporting (some appeared not to have actually read the report). NBC Nightly News was especially bad in their coverage, which was a huge disappointment. The patient they filmed appeared to be a busy and active mom, despite the voice-over and interview saying she was sick (I'm not doubting she had ME/CFS - but they chose someone whose invisible illness really was invisible).  They capped off the segment with an interview with a "doctor" (she was a rheumatologist who makes frequent TV appearances) who said the best treatments are CBT and exercise! Seriously. With "Exertion Intolerance" front and center in the name. My husband was yelling at the TV screen! I tried to mount a defense and let NBC know they got it wrong, but my efforts were drowned in the bigger news of Brian Williams' suspension.  The Solve ME/CFS Initiative had better luck than I did (their CEO Carol Head was also featured in the segment and was the only bit of accuracy in it!) - they urged NBC to issue a retraction about exercise being a good "treatment" - which they did on their website, though I doubt that many of the millions of viewers who watched the NBC Nightly News will ever see it!

However, some did a good job accurately covering the story and spreading the word:

NPR's article was excellent and accurate and even included a quote from my good friend and outstanding advocate, Jennie Spotila.

The New York Times also ran a good piece (though it was a blog post and not a print article) that was accurate and included some history and quotes from Dr. Rowe, Dr. Bateman, and Leonard Jason.


Science Magazine covered the announcement in their ScienceInsider column and again, did a good job getting the facts right and interviewing real experts.

As always, Cort Johnson of Health Rising did a fantastic job of summarizing the media coverage - this blog post of his includes more excerpts from media outlets like WebMD, MedScape, and Nature magazine.

Our Experts/Our People
It has been very interesting to see the wide variation in responses from our own community of both ME/CFS patients and clinicians, researchers, and other experts. Here's a small sampling:

Jennie Spotilla, advocate extraordinaire, whose blog, Occupy CFS is my favorite source for up-to-date information on advocacy, politics, and inner workings of our illness, wrote a post called Your Move, HHS on the topic that has been on MY mind - what comes next?

Leonard Jason, a well-known and highly respected ME/CFS researcher, wrote a critical editorial on the name change, based on input from patients and his experiences.

Tina Tidmore, an ME/CFS patient and advocate, wrote a very thoughtful blog post on both the criteria and the name that is well worth reading and quite thought-provoking.

And perhaps most importantly, comments on the name change from Dr. Lucinda Bateman, who is not only a well-respected ME/CFS clinician but also served on the IOM committee that recommended the new name.

My opinion? You can read my detailed assessment in my previous blog post, but after having a week to think about it and read all these other opinions and editorials, my opinion is pretty much the same:
  • The criteria is good - a huge step forward since we have NEVER had diagnostic criteria in the US before (a point that many seem to be overlooking).
  • But not great - I would prefer to see symptoms of immune dysfunction (recurring sore throat, swollen glands, feeling feverish, etc.) somewhere in there because those signs were key to finding my own diagnosis (which took a year).
  • SEID is better than CFS (anything is!) but not ideal. I agree that ME isn't scientifically accurate for all patients, and Dr. Bateman makes some excellent points about it already being defined in the UK. I would have preferred something along the lines of Neuro-Endocrine Immune Disease and am confused as to why this hasn't been discussed anywhere. There is plenty of science behind the presence of dysfunction in these 3 systems. I do think there is still the potential for "exertion" in the name to be misunderstood and minimized, but I can live with SEID - for now.
Whew. There's been a lot going on in our world this past week, and hopefully, all of this talk will lead to some action - more research funding and more research!

What are your thoughts?