Friday, March 31, 2017

Increasing Glutathione in ME/CFS & Related Illnesses

Glutathione Molecule (Ben Mills - Own work, Public Domain), Link
[NOTE: I am not a doctor. This post describes our own personal experiences and what I have learned from research and our medical team.  You should work with your own doctor on your own unique case to find what works for you. Don't have a doctor who understands how to treat ME/CFS? This post explains how to find a doctor who can help you. You don't necessarily need an expert - just someone willing to learn more and work with you.]

UPDATED 6/28/23

Since the first years of my illness, 15 years ago, I have been hearing how important glutathione is to ME/CFS patients (and those with fibromyalgia and Lyme disease, too). It's taken me all these years, though, to finally learn more about glutathione, understand why it's so important, and see the full positive effects of increasing glutathione.

My son and I saw our ME/CFS specialist, Dr. Susan Levine, in September last year, and she asked what our biggest problems were. I said immune system dysfunction because both of us struggle with chronic yeast overgrowth, and we both get bacterial bronchitis multiple times (sometimes up to 4 or 6 times) a year, which requires antibiotics, which in turn makes the yeast problems even worse. Since we already take the top two immune modulators typically used for ME/CFS - low-dose naltrexone and inosine (aka Imunovir)--and both have helped us (especially in reducing virally-triggered crashes)--she suggested we add something new: intramuscular (IM) glutathione injections.

So, we started those after our visit, twice a week, and wow, what a difference it has made! I just went through an entire winter without getting bronchitis once (I usually get it 2 or 3 times a winter), and I get a big energy boost from the glutathione, too. My son has trouble remembering to do his glutathione injections regularly while at college, but when he does, he also notices increased energy and well-being. I am trying to remind him to do them regularly in the hopes that he will also get less bronchitis this year (he had a typical winter, with 3 bouts of bronchitis). It should also help with his Lyme disease and the Herx reactions (worsening) that result from treating it.

Update: As soon as glutathione was available through compounding pharmacies s a nasal spray, we switched to that form. Our doctor said it's even more effective than the intramuscular injections ... and far less painful! This helps us both to keep up with it better, using the nasal spray every morning. We made that switch over five years ago, and it's still working well for us.

What Is Glutathione and Why Is It Important?
In the simplest terms, glutathione is a naturally occurring compound in the human body, a strong antioxidant that helps our bodies to deal with toxins. It is a product of the methylation cycle, which is of primary importance to ME/CFS and long-COVID patients (and those with fibromyalgia and Lyme) and usually severely dysfunctional (see information at the link on how to improve methylation). A lack of glutathione can lead to oxidative stress, which has been shown to be a large part of the exertion intolerance (aka Post-Exertional Malaise or PEM) that is a defining characteristic of ME/CFS.

The Wikipedia entry for glutathione says that the human body makes plenty of glutathione on its own, so it does not need to be supplemented. That is true for healthy people, but glutathione levels have been shown to be low in those with ME/CFS, contributing to low energy, immune dysfunction, detoxing problems, and exercise intolerance. Since our bodies can't make enough glutathione on their own, increasing glutathione through supplementation can be a helpful treatment for ME/CFS patients. My son and I have found it to help increase energy, reduce exercise intolerance, and improve immune function.

How Do I Increase Glutathione?
Increasing glutathione in your body to normal levels is not as simple as just taking a single pill. There are multiple approaches that include helping your body to make more glutathione on its own and supplementing with certain forms of glutathione that your body can use effectively.

Glutathione Precursers:
One way to increase your body's production of glutathione is to give it more of the raw materials (precursers) that it needs to make glutathione (links are to our favorite products). These include:

[NOTE ON WHEY: For many years, I knew that whey was an important precursor to glutathione but thought that my son and I couldn't eat it because we are dairy intolerant (as are 30% of ME/CFS patients, according to a recent study). I was thrilled when our dietician/biochemist explained that when whey is separated from the rest of milk (the curds--remember Miss Muffet, eating her curds and whey?), almost all of the lactose and most of the casein (a protein in milk) is in the curds, leaving whey to be well-tolerated by many people who are dairy-intolerant. We tried it and were happy to discover she was right--we can both tolerate whey protein powder with none of the usual side effects we get from full dairy products.
UPDATE 6-28-23: I have recently discovered through food intolerance testing that I am sensitive to lactose, casein and whey! So, I tolerate it once in a while and still have my favorite Paleo smoothie once or twice a week, but I can't have it every day. But that's me. If you're just lactose-intolerant, then you shouldn't have a problem with whey.]

Supplementing with Glutathione:
Although it is tricky to supplement directly with glutathione--to get it into the cells where it can be useful--there are several approaches that can work:
  • S-Acetyl Glutathione - a form that can get into the cells - our dietician recommended we take this at bedtime.
  • Liposomal Glutathione - glutathione that is encased in little fat spheres (to put it simply!) that enable it to get to the cells where it is needed. Available in liquid or softgels. We used this before we switched to injections (it tasted pretty nasty back then, but now it says "new improved flavor!"). Note that any kind of oral glutathione, including liposomal, is less effective than injections, IV's, or nasal spray.
  • Intramuscular injections or intravenous glutathione - these deliver glutathione directly to the bloodstream. When we switched from liposomal glutathione to intramuscular injections, we definitely noticed an improvement. I went from getting bronchitis 4-5 times a year to going over 18 months without getting it once! Occasionally, we each get IV glutathione from our Lyme specialist, which is even more effective. Injections require a prescription and must be obtained through a compounding pharmacy (which is simple and inexpensive).
  • Glutathione Nasal Spray - a newer way to get glutathione directly into the bloodstream--as effective (maybe even more so) as injections but without the pain! Also requires a prescription through a compounding pharmacy--see UPDATE at the end of this post for details).
If you are squeamish about self-injections, I am living proof that it can be learned! After years of taking B12 sublingual tablets, while my son did B12 self-injections, he finally said, "Quit being such a baby, Mom! You know the injections are more effective." He was right--I switched to B12 injections at the same time that I started my glutathione injections. We do B12 subcutaneous injections (under the skin) which are tiny amounts and tiny needles, and he was right; I barely feel them. The intramuscular (IM) injections for glutathione require a longer needle and take a little more practice to master, but after 6 months of doing it twice a week, I got pretty good at it and they barely hurt at all. I recommend this how-to video from the Veteran's Administration to learn how to do your own IM injections. Note that B12 is another critical component in improving methylation.

How To Get Started
It's always best to start with a doctor or other knowledgeable medical personnel (like our dietician who also has a MS in biochemistry or our functional medicine specialist). You can see one of the ME/CFS specialists - there are about a dozen across the U.S. and others overseas - or a local doctor or other medical professional who understands ME/CFS or is at least willing to learn. If necessary, print some of the information from this post and its links to help educate your doctor. Most of the treatments listed above are supplements that don't require a doctor, but it is always good to consult with one, if you have one who understands ME/CFS. See Finding a Doctor for lists of specialists and tips on finding one who can help.

You can start with the prescursors listed above, to help your body produce more glutathione on its own. ALWAYS--as with any ME/CFS treatment--start very slowly and go gradually. Begin with just one supplement, at a low dose, and see how you tolerate it. Improving methylation and increasing glutathione can sometimes produce a temporary worsening (a Herx reaction), as your body improves its ability to deal with toxins and moves them into the bloodstream to get rid of them. The best approach to a Herx (worsening) is to reduce the dose to where the Herx is tolerable and wait to increase until you are at least back to baseline or feeling better.

Milk thistle is an ideal supplement to start with, if you aren't already taking it. It has multiple functions, most importantly helping to improve liver function, i.e. helping your body to process medications and supplements as well as harmful byproducts that your body produces. By starting with milk thistle and improving liver function, you can both increase glutathione and help your body to tolerate additional supplements. Turmeric or curcumin also has multiple purposes, helping to reduce inflammation, improve detox, and increase glutathione.

When I added NAC (many years ago), I felt an immediate improvement in energy, so that is a good one to add next. My son and I also both get a nice boost from whey protein powder, too--we use it in smoothies. This is our recipe for a Chocolate-Banana Smoothie--our favorite lunch! Tastes decadent and has several ingredients that help with energy.

The S-Acetyl Glutathione is absorbed differently by your body, so it can be used WITH either liposomal glutathione or injections/nasal spray (but the liposomal and injections/nasal spray are either/or). You can buy liposomal glutathione as a supplement in various forms, but the injections or nasal spray require a prescription (you get it from a compounding pharmacy, which is simple and inexpensive).
(Note that if money is an issue, milk thistle, NAC, and curcumin are all fairly cheap and quite important. Injectable glutathione is MUCH cheaper (and far more effective) than liposomal glutathione in either liquid or pill form. Whey powder seems expensive but one of those big canisters can last quite a while (and you can get a smaller canister). Beware of buying whey powder at the drugstore or grocery store--read the labels carefully as many of the more common commercial brands sold for athletes have LOTS of additives.)

As with any treatments for ME/CFS, START LOW AND GO SLOW! Add one supplement at a time, starting with a low dose, and increase as tolerated.

I highly recommend you also take a look at this article on Phoenix Rising on Augmenting Glutathione in ME/CFS. It was written by Rich Van Konyenburg, who also developed one of the first methylation protocols and was one of the first to recognize the importance of glutathione in ME/CFS.

I have included some links in this article and below to the products we have tried and found to be effective for increasing glutathione. A few notes:

The Natural Force whey powder is a 'cleaner" product with no added ingredients, but we like the taste of the Bluebonnet brand better (it has natural vanilla flavor and MCT oil added in, which is also good for us and that's two fewer ingredients to remember when we make our smoothie!  

Curcumin is a potent anti-inflammatory, as well as encouraging production of glutathione. Meriva is a brand of phytosome curcumin that our dietician likes as it is well-absorbed. My husband and I now take curcumin with black pepper, as that also helps with absorption. Either of those is a great choice.- It has been very helpful for all of us for joint pain and managing Herx reactions, in addition to its role in promoting glutathione production.

Please let me know if you have any questions. If you have any experience in increasing glutathione, please share it in the comments below, so we can all learn from each other!

UPDATE 4/12/18:
There is a new form of glutathione delivery now available - a nose spray that is even more effective than injections! No more big needles! It can be obtained from a compounding pharmacy (the concentration is either 100 or 200 mg/ml in plain saline), and the dose is 1-2 sprays in ONE nostril each day (alternate nostrils each day). Our ME/CFS expert doctor explained that the nasal spray is safe and effective, and this study bears that out (great for sharing with your doctor).

The best approach is to get a prescription from your doctor and order it from a compounding pharmacy (this post explains details and links--Skip's is a great source but most compounders can make it). 

If you can not get a prescription, there appear to be two commercial brands available: Ageless Rx and Glutastat (though this has other added ingredients in it)

NOTE: DO NOT buy glutathione mouth sprays. The pH in our mouths immediately renders 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 online or on Amazon, a bunch of mouth sprays will come up, so read carefully).
Our experience? My son switched to the nose spray back in February 2018, 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 used up the last of the injectible solution we had and then switched, too). His energy 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!

UPDATE 5/7/20:

With a steep downturn in his health this year (due to his tick infections), my son also started a weekly glutathione IV (and also a weekly Myer's Cocktail IV, a mix of vitamins and nutrients). This helped him immensely, with both energy and his severe Herx reactions, finally allowing him to slowly increase the dose of his treatments. He had to quit the IV's temporarily during the coronavirus pandemic and is definitely missing them. He and I both still take the nasal spray daily.

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

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Wednesday, March 29, 2017

The Importance of Play

Camping and reading are two ways that I play
Last month, I posted a link to an article I wrote for ProHealth website (an excellent resource for information on treatments, doctors, and the latest research in ME/CFS, fibromyalgia, and Lyme disease). My article was called The Importance of Play, and you can see it at the link - I will also include the full text below.

I have written abut play here on my blog before over the past 10 years - it is still something I struggle with. I find it more difficult to make time in my life for play with chronic illness, in part because I feel like I need to be productive during those limited times when I am able to be. This article has lots of great ideas from other ME/CFS patients on ways to add play to your life. I am working on this! In fact, re-posting this article here is a good reminder for me.

How about you? How do you play?

The Importance of Play

In books, magazine articles, podcasts, and TED talks, we hear how important it is to make time for play in our lives. Play has been examined in psychology textbooks, academic theses, and on the cover of the New York Times Magazine. Research shows that taking time out for play increases creativity, lifts mood, promotes happiness, and even improves memory. Studies prove that play is just as important a biological function for us as sleep, and that adults often lose the ability to play that they had as children.

I have a lot of trouble making time in my life for this kind of rejuvenating play and relaxation. I know that sounds odd coming from someone with a chronic illness who needs to rest so much, but my illness has actually made it even harder for me to set aside precious energy for just having fun. Because I need to spend so much time sleeping and resting (which is not the same as relaxing), I feel guilty if I use my limited energy for something that feels as frivolous as play. My play time has also shrunk as my sons have grown up. But play is so important in every life, to recharge and relax and focus on you. Which of us struggling with chronic illness couldn’t use a little mood lift and boost to our cognitive function?

Perhaps you share my struggles of filling my few available hours only with productive activities. Or perhaps you have trouble with play for other reasons. After all, when you live with chronic illness, many of the ways that you used to play are no longer an option. I can’t dance or go backpacking or play soccer with my kids or even go out drinking with my friends. I can’t even stay up past 10 pm!

So, if you, like me, need more play in your life, here are some tips and ideas, both from the play experts and from others like us, living with chronic illness:

Consider your play history. One of the play experts suggests this, and it seems like a brilliant idea. Think back to your childhood, to times when you experienced effortless joy. How did you play back then? What kinds of things did you do that were just plain fun? My best friend and I were board game fanatics! We never cared who won or lost – we just loved playing. I also have many happy childhood memories of time spent outdoors – playing with friends, making forts in the backyard, and exploring nearby “wilderness” (in the suburbs!). On my own, I loved to read and could easily lose myself in books for hours or days at a time, in my living room or my backyard. All of these things (except perhaps physical outdoor games) are great ways for me to play as an adult, too, and adaptable to my current limits. I may not be able to hike for hours anymore, but just spending time lying on my back deck and looking up at the sky and trees rejuvenates me and brings a sense of peace.

Incorporate different kinds of play. The experts point out that there are different ways to play – physical play, creative play, imaginative play, social play, and more. Some types of play may no longer be an option – like playing sports – but there are plenty of other avenues still open to us. Others with chronic illness tell me they play by: reading, playing video games (alone or online with others), watching TV or movies (no multi-tasking allowed!), or even just sitting outdoors and paying attention to the birds, wildlife, and clouds.

Set aside electronic devices sometimes. Although the internet is extremely important to those of us who are unable to leave the house much – and there are some kinds of play you can enjoy electronically – it is also important to set the devices aside and unplug. I spend way too much time online. Besides your brain needing a break to enjoy unplugged play, too much time online can also add to our exhaustion and wear us out more. So, read a book or listen to music or go outdoors.

Give yourself credit. I’ve written a couple of blog posts on this topic, with dozens of wonderful comments from others who can relate. Sharing with me how they play made me realize that I have built periods of downtime and play into my life, but I don’t always “count” those because they are a part of my routine. I set my laptop aside at 7:30 every evening and watch two TV shows with my husband. No work, no to-do’s, no worries about being productive – that is our time together, when we catch up on the shows that we love to watch together. At 9:30, we head up to bed and then read for an hour, side by side. I also read for 20 minutes or so before my nap every afternoon. All of that is relaxing play time for me – I just need to recognize it as such and stop putting extra pressure on myself.

Try something new. Incorporating a new type of play into your life can lift your spirits, invigorate you, and form new neural pathways…not to mention possibly finding a new source of joy in your life. Here are some ideas from others living with chronic illnesses like ours:

·      Knitting or crocheting
·      Stargazing, watching birds through a window, or watching the ocean
·      Going for a ride in the country (perhaps with the help of a loved one)
·      Light gardening or caring for chickens
·      Painting – watercolors or even finger-painting!
·      Listening to music, perhaps a favorite album from your youth
·      Crafting – collages, pressing flowers, creating small items
·      Camping (a favorite of mine, too)
·      Cooking or baking, when able
·      Listening to audiobooks – try middle-grade or young adult, if you have trouble focusing
·      Board games or card games with friends or family members at home
·      Riding horses
·      Jigsaw puzzles – old style or online
·      Making cards, jewelry or other handcrafted items (bonus: you can sell them online)
·      Watching old movies or indie films

Wow, what a list! I am inspired by all of these creative people in the same situation as me with so many great play ideas. I definitely want to play games more because that childhood passion is still with me (I need to find some game buddies now that my sons are grown). I would love to add something creative to my life, like drawing or painting. And I had forgotten about jigsaw puzzles – my husband and I enjoy those. I just need to set my laptop down once in a while!

How do you play? What new forms of play do you want to try? Set down whatever device you are reading this on, and go play!

Tuesday, March 28, 2017

TV Tuesday: Time After Time

I am a sucker for anything with a time travel plot. I think what intrigues me so much is how thought-provoking it is - the idea that you could travel through time, to any point in the past or future. My husband and I both enjoyed the new NBC TV series last fall called Timeless, about a ragtag group traveling through time to try to stop a villain from changing the past, visiting all kinds of incredible historical events. So, I was very excited to learn that ABC was getting into the time travel game with its own series this spring, Time After Time, which is based on a novel and 1979 movie by the same name (which I've heard is pretty good).

The main characters in Time After Time are quite famous - or infamous, as the case may be. The story begins in the late 1800's in London, where a young H.G. Wells, played by Freddie Stroma, is entertaining friends one evening and telling them about his time machine prototype in the basement. A late arrival to the party, Dr. John Stevenson (played by the hunky Josh Bowman), arrives, followed quickly by the police who are tracking Jack the Ripper. A bloody knife in John's doctor bag, left at the front door, confirms their suspicions, much to H.G.'s shock. To escape from the police, John heads to the basement to try out his friend's time machine. It works and transports him to present-day New York, where the time machine is on display in a museum. Horrified by what his friend has done (and is), H.G. quickly follows him to 2017 New York to stop him.

When H.G. arrives at the museum, he meets a lovely assistant curator named Jane Walker, played by Genesis Rodriguez. He tries to hide his identity at first, but before long, he has to take her into his confidence. H.G. is desperate to find John before he can kill again. That is the main thread of the show - H.G. and Jane trying to find Jack the Ripper in modern NY, to stop him from killing women - but the plot gets more complicated. Additional characters are added to the mix, included a descendant of H.G. and various people who want the time machine for their own purposes (including John so he can escape).

We have watched four episodes so far and are enjoying this fast-paced thriller with a sense of humor. There are the expected (and fun) fish-out-of-water situations, as both H.G. and John adjust to life in 2017. Can you imagine how fascinated H.G. Wells would be, with all his prognostications, by what the future really did bring? The chase gets more action-packed and complex as more people get involved. And, of course, there is the time travel, which is just starting to ramp up a bit several episodes in.

I've heard some criticisms of Time After Time (and also Timeless) by science fiction buffs, and yes, their arguments are valid - neither of these shows really sticks to the accepted rules of time travel in science fiction (and obviously the science of the machine is complete fantasy!). My husband and I, though, have been able to suspend disbelief and just go with it, enjoying the show for what it is. And what is it? Time After Time is a fun show, above all, with action, suspense, and humor, that puts two well-known historical figures into an intriguing situation. We'll see where it goes from here, but for now, we are enjoying it.

Time After Time is currently airing on ABC Sundays at 9 pm, so you can catch up On Demand or at the ABC website (episodes 2 - 4 are available there now for free) or for $1.99 an episode on Amazon, link below (so you could watch the first episode there & the rest on the ABC website).

For more time travel fun, some of my favorites (besides Timeless) include:
  • Frequency - TV show (not technical traveling through time but communicating across time so similar themes
  • 12 Monkeys – movie - post-apocalyptic time-travel thriller - SO GOOD!
  • Predestination – twisty time-travel movie - a major mind-bender!
  • Project Almanac - fun, fast-paced movie of teens who time travel
  • Dark Matter by Blake Crouch - amazing sci fi thriller my husband and I both LOVED. 
  • To Say Nothing of the Dog by Connie Willis - a modern classic with plenty of humor set in Victorian England (and the present)
  • The Shining Girls by Lauren Beukes - a chilling thriller about a time-traveling serial killer
  • The Time Machine by H.G. Wells! - a classic and the inspiration for this show
  • Time and Again by Jack Finney - a classic time travel novel, set in 1970 and 1882 New York
  • Outlander by Diana Gabaldon - romantic time travel novel from 1945 to 1700's in Scotland
I told you I like time travel stories!

Sunday, March 26, 2017

Weekly Inspiration: Laura Hillenbrand - My Hero & Role Model

I am a long-time admirer of Laura Hillenbrand, author of the best-selling, critically-acclaimed books, Seabiscuit and Unbroken, and ME/CFS patient. Just her accomplishments alone - writing these amazing books while too sick to get out of bed - makes her an inspiration to me, but I also admire her strength and perseverance in the face of such challenges, much like the unsung heroes she writes about in her books.

When Hillenbrand first became famous for Seasbiscuit, I was hopeful that ME/CFS had finally found its celebrity - our very own Michael J. Fox who would bring our devastating disease into the public eye. But she was far too ill to be a spokesperson. She didn't leave her Georgetown townhouse for two full years, and she wrote much of her books while lying flat in bed with a pad and pencil - with her eyes closed! - due to debilitating vertigo.

Fast-forward to today. Laura Hillenbrand is doing much better. She has finally found some doctors who could help her and some treatments that have helped (as I always say, nothing helps ME/CFS a lot, but there are a lot of things that can help a little, and those add up). Her quality of life is much-improved, and she even moved across the country. And...she is giving an occasional interview, much to my delight.

This latest interview was with Stanford Medicine (they have conducted a lot of recent, ground-breaking research into ME/CFS). I couldn't find a way to download the podcast or to embed it here, but you can listen to this 44-minute fascinating interview with Laura Hillenbrand at this link.

She talks about her books, her writing, her life, and yes, her ME/CFS. She describes what living with ME/CFS is like and exactly how debilitating it was at her worst. She talks about how she's improved (though not details about precisely which treatments have helped) and what her life is like now. And, she talks about dealing with the people - both family and "friends" as well as doctors - who have treated her badly, mocking her, not believing her, etc. I found that part of the interview the most inspiring - she has some great insights into coping with the kinds of resentments that we all harbor from mistreatment.

I hope you find her interview as inspiring as I did. She doesn't say what her next book will be about, but I can't wait to find out!

[P.S. Although she doesn't specify which treatments have helped her improve, I have heard elsewhere that she was finally able to see one of the top doctors in ME/CFS who has worked with her on a variety of aspects of the illness. These top docs are not exclusive - anyone can see them, and there is no magic to what they offer - just a wide variety of treatments that focus on different aspects of the disease, chipping away at it, bit by bit. For examples, this post describes the treatments that have helped my son and I the most (some from our primary care doctor and some from the experts). It takes a lot of trial and error - and a considerable amount of patience and persistence! - but it is possible to improve your quality of life, a little at a time. My son and I are both quite functional now.]

Have you read Seabiscuit and Unbroken? Did you like them? I hope you are as inspired by Laura Hillenbrand as I have been!

Seabiscuit An American Legend
by Laura HillenbrandTrade Paperback 

Wednesday, March 22, 2017

Webinar by Dr. Rowe: ME/CFS in Adolescents & Young Adults

Dr. Peter Rowe of Johns Hopkins, renowned pediatric ME/CFS and OI specialist, recently gave a webinar: A Clinical Approach to ME/CFS in Adolescents and Young Adults: A Practical Primer. This was part of the Solve ME/CFS Initiative's wonderful webinar series. You can watch his full webinar at the link above, on the Solve ME/CFS website, watch it on YouTube, or watch it right here:

Although the talk is aimed at doctors like pediatricians and family doctors (and is much-needed for that audience!), it is also very interesting and informative for patients and parents, even someone like me who spends a lot of time reading and researching our illness. His talk is aimed at treating children and teens, but everything he says is also applicable to adult ME/CFS patients. He covers:
  • Diagnosis of ME/CFS and how to exclude other conditions
  • The critical role of Orthostatic Intolerance (OI) in ME/CFS
  • Ehlers-Danlos Syndrome and Joint Hypermobility and the significant overlap with ME/CFS
  • Step-by-step approaches for doctors to investigate their patient's condition and try treatments
  • Patient case studies - both successes and  tougher cases
He briefly touches in the role of infections, immune dysfunction, and mitochondrial dysfunction (in the Q&A at the end), though those topics are not covered in great detail.

If you want even more from Dr. Rowe, here is an earlier webinar he did for Solve ME/CFS, focused on Post-Exertional Malaise (which is also closely related to Orthostatic Intolerance).

I highly recommend you watch this 1-hour presentation - it's chock-full of useful information.

Even better: Send the link to your doctor or your child's doctor and ask him or her to watch it!

Tuesday, March 21, 2017

TV Tuesday: Lilyhammer

When my mother was visiting a couple of weeks ago, my husband and I exchanged TV recommendations with her. We told her about Sneaky Pete (which she and her husband are loving) and Good Girls Revolt, and she told us about a unique comedy called Lilyhammer. It was a good recommendation - we are now hooked on it, too!

Lilyhammer features a set-up pretty much guaranteed to bring plenty of laughs. An infamous New York City mobster named Frank "The Fixer" Tagliano, played by Steven Van Zandt of The Sopranos, agrees to testify against his former boss and colleagues, if the FBI will protect him and relocate him. He says he won't be safe anywhere in the U.S., but he remembers enjoying watching the Winter Olympics in Lillehammer, Norway, so that's where he goes, with a new name, Giovanni Henrikson.

Giovanni, or Johnny as he asks his new acquaintances to call him, is a little disappointed when he first sees his modest home and tiny car in snow-bound Lillehammer, but he immediately begins to make the town his own. He joins classes for new Norwegian citizens, where he meets an attractive and out-of-work teacher named Sigrid, played by the lovely Marian Saastad Otteson. Right from the start, Johnny does things his own way, which is quite different from the way Norwegians typically do things. He is very polite but doesn't take no for an answer and believes there is no problem that can't be solved with money or the proper "motivation." From setting up a business to making friends to getting his driver's license, Johnny makes his way through Lillehammer in a most un-Norwegian way. A local Barney Fife-type police officer, bored with the tiny town's lack of crime, suspects something is up with Johnny...but he is way off-base in what he suspects, adding another dimension of humor.

My husband was skeptical at first. He is from Oklahoma and is really not into most mob-related TV shows or movies - just not his thing. However, Johnny has quickly won us both over. The entire cast (mostly Norwegian with no big Hollywood names beyond the lead) is excellent and fun to watch, the laid-back atmosphere of Lillehammer is welcoming, and Johnny's fish-out-of-water escapades are a lot of fun. Besides having plenty of humor, the show is also surprisingly warm, and you soon find yourself rooting for Johnny, despite his unorthodox methods.

We've only watched three episodes so far, and there are three seasons of the show on Netflix, so we look forward to a lot more fun with Johnny. You can also watch Lilyhammer on DVD or streaming on Amazon for $1.99 an episode or $12.99 for the entire first season (links below).


Sunday, March 19, 2017

Weekly Inspiration: Author Led Life of Kindness & Creativity

I was stunned this morning to hear the horrible news that Amy Krouse Rosenthal died of cancer a few days ago. Born in the same year as me, a writer with kids who grew up in the suburbs of the 70's, I felt a connection to her. As she put it, "we shared a moment (in the form of an e-mail exchange)" back in 2010, after I reviewed her book, Encyclopedia of an Ordinary Life (which I loved). In fact, she just e-mailed me again in October to tell me about her new book, Textbook Amy Krouse Rosenthal. I had no idea she was battling cancer then and was crushed to hear today that she lost that battle. She was a smart, funny, clever, playful, and kind person - and all of that came across in her writing.

You can read my review of Encyclopedia of an Ordinary Life (and then go read the book!). Sadly, I never received the review copy of Textbook Amy Krouse so I haven't read it yet, but I would like to.

I also posted this trio of fun and amusing videos that Amy made, in part to promote Encyclopedia of an Ordinary Life - they are short and well worth watching - clever and funny, just like Amy.

Amy's website tells you a lot about her life and her books - and again showcases that wonderful sense of humor. The website includes dozens of short videos that Amy made. One of them, Thought Bubble: Kindness, was the Winner of Best Animation at the Peace On Earth Film Festival 2011. You can watch that one right here:

Amy has also given three TED talks (three! I had no idea). In this one, she explains how she launched her project Beckoning Lovely -  a warm and inspiring concept and project:

Hopefully, that last video will inspire YOU to live your life as Amy did - with warmth, kindness, and creativity. Reach out to other people. Look for the lovely in your own life and share it with others.

The best way to honor Amy's memory is to enjoy the wonderful books she's written (many books for children, in addition to these 2 for adults). She was a talented, kind, smart, funny woman who will be sorely missed.

Encyclopedia of an Ordinary Life
by Amy Krouse RosenthalTrade Paperback
Textbook Amy Krouse Rosenthal
by Amy Krouse RosenthalHardcover

Friday, March 17, 2017

Blog Improvements and Updated Posts

I thought I should tell you about some blog improvements and updates I am working on, since many of the updates are buried in older posts. I've been posting them on Twitter and Facebook, but for regular readers or new blog readers just visiting the home page, you may not have heard about these yet.

I wrote my very first post for this blog on February 16, 2006, so I have been blogging for more than 11 years now...and other than writing new posts each week, I have done almost nothing to improve or update my blog. The result is that it is looking quite dated, and some of the older posts need updating. Believe it or not, after 11 years of blogging, I am still a novice! I know a lot about writing (I work as a freelance writer), but blog design and all the rest of it is still mostly a mystery to me. I have been trying to rectify this by learning more about blog design and other blog-ish topics I don't understand, and I have started to make some changes here.

Most importantly, I am working my way - slowly - through updating my most popular and informative posts. I am revising where new information or research is available, writing more on our own experiences since whenever the post was first written, and adding in recommendations for specific supplements or other products, where applicable, since I get asked about that a lot.

So, far, I have revised and updated these blog posts:
Unfortunately, each update takes me a long time, so the process is slow, but I hope to get to many more important posts in this updating process. I spent hours yesterday on the methylation post, just trying to get the text to stop switching to "xx-small" every time I published it! I finally figured that out but couldn't stop the font from changing type several times. I'm learning, but it's a slow process!

On the design front, I plan to:
  • Change the design itself (I know some people have trouble reading with the polka-dot background).
  • Update the sidebar, including other blogs to visit and other resources linked to.
  • Add an About Me/Us page (only about 11 years late on that one!)
  • Add a Where Do I Start? page to help new patients and/or those who are new to the blog to find the most important posts that can help them the most.
Whew, so that's a LOT of work coming up for me, but I will also be sure to keep adding new posts & information to the blog.

Please let me know YOUR needs and ideas - is there anything that you would like to see here?  Anything that would help you as a patient or you as a blog reader to get the most of this blog? Please leave comments to let me know how I can better help you.

And thanks for your patience as I struggle with finally learning about blogging 11 years after the fact!

Thursday, March 16, 2017

Donate to Research While You Shop!

iGive is a great way to earn money for ME/CFS research - or whatever your favorite charity is! - without costing you a cent.

I start at the iGive site for any online shopping and earn money for ME/CFS research - like the sweater I bought on sale at Lands' End yesterday to replace the one my son has outgrown! Birthdays, holidays, stocking up - we also donate for all the supplements we buy online - and those really add up!

Even better: From now until March 31, if you sign up for iGive (it just takes a moment to enter your name & e-mail and choose your charity), they will donate an EXTRA $5 to the Solve ME/CFS Initiative for ME/CFS research (my chosen charity)! Just use this iGive link to sign up today and choose your favorite charity!

Monday, March 13, 2017

Movie Monday: Mockingjay Part 2

My husband and I (and our sons, too) loved The Hunger Games YA trilogy by Suzanne Collins, her now-famous chilling dystopian series. We watched each movie adaptation: The Hunger Games, Catching Fire, and Mockingjay Part 1, so we figured we needed to finish it off and watch the final movie, Mockingjay Part 2 (even though it annoys me to no end when Hollywood takes a short novel and turns it into 2 separate movies!). It was a good end to the series...though, of course, the book was better!

If you haven't yet seen or read the beginning of the series, you should go back to those first. Read the books, which are outstanding for teens and adults and very well-written, and then see the movies, which are good adaptations with excellent casting.

So, Mockingjay Part 2 picks up where Mockingjay Part 1 left off: Panem is now at war and Katniss has agreed - reluctantly - to be the face of the revolution, though she still has some misgivings. She and her family and some other familiar characters from earlier movies are safe in District 13 at the start of the movie, but they soon join the fighting in the Capitol. Katniss wants President Snow to pay for all that he has done.

This last part of the story focuses on the war, with a lot of action-packed scenes of battle. It's very well-done, and the special effects are excellent, especially of some of the high-tech forms of warfare that the Capitol unleashes on the rebels. It's been quite a while since I read the books, so there was still some suspense in it for me, as I didn't remember all the details of how it ended.

Of course, as is almost always true, the movie wasn't as good as the book. One thing that was lost in the movie adaptation was Suzanne Collins' very thoughtful and thought-provoking musings (through Katniss) on the nature of war, the price of war, and issues of power and wealth - all topics very relevant to our own world. I described this in detail (no spoilers, though) in my review of the book. The first Mockingjay movie - and to a lesser extent, this one - did show Katniss' moral and ethical struggles to some extent, but it is harder to delve deeply into those kinds of thoughtful issues on the screen than on the page. For me, that was the best part of the book - and the entire trilogy: Collins' thought-provoking commentary on our own world, through the lens of this dystopian world.

But, overall, we enjoyed the movie, and it was a good conclusion to the series. It is action-packed and full of suspense, and Collins is never afraid to kill off significant characters if it makes sense to the plot, so you really don't know what will happen. The cast, including Jennifer Lawrence as Katniss, is excellent. We were both glad to have seen the final movie to finish off the series.

All four movies are now available on DVD. You can stream The Hunger Games or Catching Fire for a fee on Amazon (though, oddly, the DVDs are cheaper) and the last two Mockingjay movies are both currently free on Amazon Prime (see links below). All four movies are also available through Netflix (DVDs only).


Sunday, March 12, 2017

Weekly Inspiration: Finding Your Way Out of the Storm

This week's Weekly Inspiration comes from a middle-grade novel I recently read called The Honest Truth by Dan Gemeinhart (my review at the link - don't worry - no spoilers!). The story is about a young boy named Mark with a serious illness (probably cancer though it's not stated); he's twelve years old in the book, and he's been sick since he was five. Fed up with so many years of illness and treatments and discouraged by some recent bad news, he runs away from home, with the goal of climbing Mount Ranier. He decides to tackle this big dream of his now because he's afraid this will be his last chance. Of course, he has all kinds of adventures (and challenges, including a big storm) along the way and meets some very interesting people.

Here's what Mark says toward the end of the novel:
"I thought of all my sickness, all my anger, all my fear. All that was just the darkness, just the storm. I got lost in it. But there's always the other side of the storm. And the people who get you there.

All the world's a storm, I guess, and we all get lost sometimes. We look for mountains in the clouds to make it all seem like it's worth it, like it means something. And sometimes we see them. And we keep going."

          - The Honest Truth by Dan Gemeinhart

I thought that was such an apt metaphor for living with chronic illness. We can so easily get wrapped up in those dark emotions, the storm, but we need to remind ourselves that the storm will end - there is always another side to it, after you've come through it. Like Mark, our illness may not go away, but we can still come out of that darkness of anger, fear, and bitterness to the other side, where the sun is shining, people care about us, and there is hope.

Besides sharing this thoughtful and relevant quote with you, I also chose a quote from this particular book because it is an excellent middle-grade novel. I know that many people with ME/CFS and related illnesses have trouble reading - concentrating, following complicated plots, etc. One possible solution is to read middle-grade books or books for teens and young adults. The Honest Truth is a great example of a book written for kids - shorter, with simpler language and a simpler plot than most adult novels - that is still thoughtful, moving, and full of suspense. It's an excellent novel for anyone, at any age. And, in case you are worried that it's depressing since it's about a sick kid, it's really not - it has plenty of emotional depth, but the focus - as you can see from the above quote - is on hope.

For more examples of middle-grade books, this link will take you to all of the middle-grade book reviews I've written (a lot!). Use this link to check out the teen/YA books I've reviewed (note that some, like second one listed, were actually written for adults but are appropriate for teens). For more, older reviews of middle-grade and teen/YA books, check out my blog Great Books for Kids and Teens - I combined that one with my Book By Book blog a few years ago, but it still includes hundreds of archived reviews. There are a lot of reviews between the two blogs, so if there is a specific kind of genre you like - realistic fiction, mystery, dystopian, etc. - just let me know in the comments, and I can recommend some of my favorites in that category for you.

You may find - as many with ME/CFS do - that you can manage reading or listening to on audio books written for kids and teens, even though most adult books are too difficult for you to follow.

How about you? Have you, like Mark in the book, ever felt like you made it through a storm of dark emotions and came out the other side? Have you ever tried reading or listening to books for kids or teens?