Tuesday, October 31, 2017

TV Tuesday: Wisdom of the Crowd

For my Halloween TV Tuesday post (and my last R.I.P. Challenge TV post), I want to tell you about a new detective show with a twist, Wisdom of the Crowd, that my husband and I have been loving. We binged the first four episodes last week and can't wait for more!

If you saw the movie (or read the book) The Circle, the concept here is similar in some ways. Jeremy Pivens stars as Jeffrey Tanner, a high-tech millionaire who made his money (and his fame) with a hugely popular social media platform. Now, he has left his old company to start a new one with a new kind of social media software that crowd-sources crime solving. With him in this new start-up, no-frills company is Sara (played by Natalia Tena), his partner both in business and romance (though they keep their relationship a secret), and Josh (played by Blake Lee), a brilliant programmer, along with some support staff.

Tanner's motivation in this new venture is the death of his daughter, Mia. The police arrested a man named Carlos (played by Ramses Jimenez) who is awaiting trial in prison, but Tanner is certain he didn't do it (and Carlos continues to profess his innocence). The police and even Tanner's ex-wife, Alex (played by Monica Potter from Parenthood) are convinced the killer has been caught, but Tanner wants to put the power of crowd-sourcing behind the case. Information from the case and new clues are posted online (his new program is called Sophe), users comment or use their phone's cameras to add additional data, and Sophe sifts through it all. For instance, when a user posts a not-seen-before video clip of the front of Mia's apartment, showing a mysterious man leaving the night of her murder, users add their own videos and photos from that night and help look for and identify the "person of interest."

Detective Cavanaugh, played by Richard T. Jones, headed up the murder case. Although he's not convinced, he shares some of Tanner's misgivings that they might have arrested the wrong man, and he wants to be absolutely certain, so he accepts Tanner's invitation to help on the sidelines...though officially in the department, the case is closed. Once Sophe catches on and helps to solve a fresh case, the police department starts to pay some attention to it, and Cavanaugh is officially assigned as liaison so the police can use Sophe as a crime-solving tool.

We are four episodes in so far (episode 5 aired on Sunday, but my husband is out of town!) and totally hooked on this suspenseful and unique show. Pivens has a lot of charisma and intensity as Tanner, and I'm also enjoying Jones in his role as the detective. It is suspenseful, as you'd expect, with a new case each episode while they continue to make progress in Mia's older case. I am expecting - as happened in The Circle - for the crowd to go too far at some point in their zeal to help catch a criminal, and there were hints of that in the first episode. We are both immersed in Mia's murder and enjoying the new cases that come along each episode. There is even a sense of humor and a touch of romance in the show. We can't wait to see what happens next!

Wisdom of the Crowd is currently airing on CBS on Sunday evenings. We've been watching it On Demand to catch up. As of today, all five of the first episodes are still posted On Demand (it says that the first one will come off on 11/4) and for free on the CBS website. Once the free episodes are pulled off, they will be available on CBS All Access (CBS's streaming service). It is also available on Amazon for $1.99 an episode or $17.99 for the first season.

Have you seen Wisdom of the Crowd yet? What new shows are you enjoying this fall?

Monday, October 30, 2017

Movie Monday: If I Were You

I have a backlog of movie reviews to write because I have been too busy on Mondays lately to write an extra post. It turns out that "Movie Monday" isn't very convenient for me...but I do like the alliteration!

To catch up, I thought I'd go in reverse order and start with the movie I watched most recently, Saturday night after my husband left for Europe. As usual when he is out of town, I was looking for something female-centric to indulge in. I stumbled onto a movie on Amazon Prime called If I Were You that turned out to be very, very funny, with moments of warmth and emotion, too.

Marcia Gay Harden (don't you love her?) stars as Madelyn, an older woman married for decades with a career in marketing. In the opening scene, Madelyn talks on the phone with her husband, Paul (played by Joseph Kell), and he tells her he will be working late tonight and won't be home for dinner. It's clear that this has become a frequent routine for him. Madelyn stops into a bistro to indulge in a fancy take-out dessert for herself (two servings!) and sees her husband at a corner table having a clearly intimate conversation with a beautiful, young woman. Shocked and flustered, Madelyn hides in a nearby convenient store as the two lovers leave the restaurant.

To her dismay, her husband's lover comes into the store after her, crying and clearly upset. She buys a rope and leaves, sobbing. Madelyn follows her to her apartment, pretending to live in the building. Standing outside the woman's apartment door, she can hear her ever-more distraught tears. Worried she is going to kill herself, Madelyn knocks on the door. Her fears were correct, and the young woman, named Lucy (played by Leonor Watling), invites her in and begins to confide in her. Madelyn doesn't admit that SHE is the wife of Lucy's married man, though she does tell her she just found out that her own husband is cheating on  her. She learns that Lucy and Paul have been having an affair for a while, that Lucy is in love with Paul, and that he just left their romantic dinner to go home to his wife.

Surprisingly, the two women - both upset and in need of someone to lean on - get to know each other and become friends. Since each seems to have good advice for the other, Lucy comes up with a pact that Madelyn reluctantly agrees to: they will each make decisions for the other woman and tell her what to do. Lucy is still completely unaware that they are both upset over the same man.

What follows is a hilarious farce of miscommunications, mistaken assumptions, and a situation that quickly spins out of control. When Madelyn's husband thinks she is the one having an affair, he suddenly turns jealous and possessive and tries to woo Madelyn back. Madelyn encourages Lucy to concentrate on her career and stop obsessing over Paul, so aspiring actress Lucy goads Madelyn into joining her on stage for a very amateur production of King Lear, with Madelyn playing King (Queen) Lear, and Lucy playing the Fool.

This movie is full of surprises around every corner. Marcia Gay Harden is excellent as Madelyn. She normally plays serious drama roles, but she has a great sense of comedic timing. The other actresses and actors are all very good, too. If I Were You is wholly unpredictable, very funny, and lots of fun, from beginning to end. I laughed out loud while watching this movie but also found it heartwarming and honest.

If I Were You is available for free to Amazon Prime members or you can rent it for just $1.99 (link below - it says $7.99 but that's to purchase). It is also available on DVD (second link). On Netflix, it is not available on streaming but is available as a DVD.


Sunday, October 29, 2017

Weekly Inspiration: Staying Connected with Friends While Ill

My latest article on the ProHealth website was published last month: Staying Connected with Friends While Ill. It's all about navigating friendships when you have a chronic illness, from keeping up with old friends, knowing when it's time to let go of a friendship that no longer works, and even making new friends (it's not impossible, even if you are housebound!). I wrote that article in large part based on my own experiences with all of those aspects of friendship - yes, including losing friends directly because of my illness.

That was very painful when it happened (twice), but fortunately, the good examples of friendship have far outweighed the bad in my case, and I am blessed with lots of caring, supportive friends, both from the earlier years of my life and those I met more recently. You, too, can nurture friendships, even if you rarely leave the house.
Eating crabs with my friends
Here's the full text of my article, reprinted here with permission from ProHealth (or you can read it on ProHealth, at the link):

Staying Connected with Friends While Ill

One of the biggest challenges when living with chronic illness is loneliness and isolation. It can feel impossible to stay connected with old friends when you feel as though you have nothing in common with them anymore. After 15 years of living with ME/CFS and Lyme disease (and having two sons with these illnesses), I have experienced the gamut of friendship failures and successes.

Here are some suggestions for ways to nurture the friendships you have, let go when necessary, and make new friends, when your life is ruled by restrictions:

Be open and honest about your illness but don’t dwell on it. The hard truth is that most people feel uncomfortable in the face of chronic illness, whether due to not knowing what to say or an unconscious fear that the same thing could happen to them. I find that the best approach with most family and friends is to adopt a matter-of-fact attitude. Show them through your example that it is OK to talk about your illness.

It helps to provide specific information on how your illness affects your interactions with them, such as “Going out in the evening wipes me out but I’d love to see you, if you want to stop by my house during the day” or “Exercise makes me sicker, so I can’t handle shopping. Want to meet for a coffee or tea instead?” Be open about your limits and answer any questions your friends have. However, you should also try not to focus too much on your illness. Most people will respond best when you are direct and honest without letting your illness take center stage in your relationship.

Find common ground.  So what DO you talk about with your old friends? You may feel like you no longer have anything in common, but you can probably still relate to them in some ways. Talk about what you both enjoy and find new areas of connection. For instance, you can ask what book they’ve enjoyed recently, talk about your latest TV show obsession, or discuss favorite movies. You can also focus on things you still have in common: your childhood spent together, your kids’ friendship, or your neighborhood.

Arrange interactions according to what you can handle. Once your friends are aware of your limits, you can suggest ways to get together that work for you. My friends know that I need to nap every afternoon, so we get together in the morning or for lunch. We used to take long hikes together, and they know I can’t do that anymore, but I am able to take a short walk with them while wearing my heart rate monitor. Because I’ve explained, they are very patient when I have to stop for my heart rate to come down – we just keep chatting while we wait!

Maybe you can’t leave your house, so ask a friend to come for a short visit. If you have trouble getting up in the morning, arrange to meet a friend for dinner. If you are easily over-stimulated by noise and lots of people, choose a quiet, uncrowded place or meet at home. If you used to love going to the movies together, invite your friend over for a movie night in. Once you have simply and honestly explained your limits, your friends are likely to understand and be happy to work around them.

Stay in touch online & by phone. When you can’t manage to get out or even handle a visitor, try not to disappear from friends’ lives. You can stay in touch via phone or text and on Facebook, Twitter, Instagram, and Snapchat. Your friends may be afraid to disturb you, so don’t wait for them to reach out to you. Try sending a quick message to ask how they are, let them know why you aren’t out and about, and mention your new favorite TV show to start a conversation!

Do your part to maintain old friendships. When you are chronically ill and isolated, it can be easy to fall into the trap of self-pity. Believe me, I’ve been there. It feels like everyone has forgotten you and gotten on with their lives. The truth is most likely that your friends want to reach out, but they’re worried they’ll say the wrong thing. So, rather than waiting for an old friend to contact you, try initiating a conversation with a text or phone call or e-mail. Let them know it’s OK to contact you and that you miss them, and use the tips above to stay in touch.

But it’s OK to let a friendship go when it’s no longer working. On the other hand, sometimes you have to let go of a friendship, as hard as that is. I had two close friends who stopped calling and e-mailing when I got sick. It was incredibly painful at the time, but I had to finally admit they were no longer a part of my life. One I literally never heard from again. I tried to reconnect with the other friend a few years later, and she admitted that she felt horribly uncomfortable in the face of my illness and didn’t know what to say. We traded a few awkward e-mails and then lost touch again, and I had to accept the friendship was over. It can be upsetting, but if you have sincerely tried to stay connected and the friendship is still not working, it might be time to let it go.

Make new friends. Thankfully, the reverse is also true – you can make new friends! It’s more difficult when you are ill, especially if you rarely go out, but it is still possible. Homebound or not, you can find plenty of new friends online. You can visit blogs or Facebook pages and groups that focus on something you enjoy, like reading, knitting, art, or TV and movies. Join discussion forums or Facebook groups for your illness and start a discussion (if off-topic threads are allowed) on your hobby or interest.

If you are able to go out, check your local library, bookstore, and other public venues for activities where you can meet people with similar interests: a book group at the bookstore, a history lecture at a local museum, or a knitting group at the library. Think about your interests and where you might find like-minded people. You can also use virtual communities to find new in-real-life friends – in a discussion forum or Facebook group, ask if anyone else lives in your region and try an in-person meet-up. I started a local support group this way, and they have all become close friends. We gather for potluck dinners or meet for lunch; these new friends have enriched my life.

Chronic illness adds unique challenges to the already tricky business of finding and keeping friends, but the effort is well worth it. Friendship is an important part of life, bringing kindness, comfort, and plain old fun. Given our isolation, we need friends more than anyone, and solid friendships can provide much-needed support. Do your part to make your friends feel comfortable and take initiative, rather than waiting for them to reach out. Go send a message to an old friend now…and join an online group to meet new friends!

What have been YOUR experiences with friendship since getting sick? What tips can you share to help others stay connected?

Thursday, October 26, 2017

Throwback Thursday: Improving Methylation

Today's Throwback Thursday is another topic that has been critical in the improvements we've been able to make in our conditions. I covered Treating Orthostatic Intolerance and Treating Immune Dysfunction in earlier Throwback Thursday posts, and this one is right up there in importance when it comes to treating ME/CFS and seeing improvement in your level of functioning and quality of life.

The Methylation Cycle (click to enlarge), from ProHealth website

The methylation cycle is a group of processes that happen in our cells to help with hormone production, detox, neurological processes, and more. Methylation is part of normal healthy functioning in any person and is extremely important for ME/CFS patients because it is usually dysfunctional (like everything else!).  The best way to explain it is simply to point you to my blog post, The Methylation Cycle: Essential to ME/CFS because it's complicated, and I worked hard to explain it simply in that post, including how to treat with supplements to improve methylation, which should result in overall improvement in your condition.

One critical component of treating methylation is supplementing with vitamin B12, an essential nutrient that is difficult to get from food sources and plays a significant role in methylation. I explain it all in this post, Vitamin B12 and ME/CFS, which includes our own experiences with different types of supplements.

Glutathione is another essential component in the methylation process that people with ME/CFS don't make enough of on our own. This post on Increasing Glutathione in ME/CFS and Related Illnesses explains the role of glutathione and how to get more of it, from diet, supplements, and injections.

Dietary changes are often crucial  to improving methylation and can sometimes bring immediate improvement due to food intolerances you didn't even know you had. One study showed that a full 30% of the young patients with ME/CFS studied had a dairy intolerance! This post, Eating Paleo for Immune Disorders: Our Approach explains the dietary approach we use, based on research and advice from our doctors and dietician and how it has helped us, with lots of tips on what to eat so that it doesn't feel too restrictive, including tasty treats!

Treating and improving methylation was one of several critical factors that quickly improved our son's condition and allowed him to start college on time, as I explain in the post on How My Son Went From Couchbound to College.

All of this is absolutely crucial for any ME/CFS patient, but some of it is complicated. If cognitive problems keep you from understanding any of these posts, please pass them along to a friend or family member who can help you - or a doctor or dietician.

One great thing about improving your condition by improving methylation is that you don't necessarily need a doctor (though, of course, it's always best to consult with one, if available). For many people in areas where there are no doctors even willing to listen and learn about ME/CFS, that makes this one area of treatment that you can try on your own.

I'd love to hear about your own experiences! Have you tried any treatments to help improve methylation? What was the outcome?

Tuesday, October 24, 2017

TV Tuesday: One Mississippi

Last week, my husband was out of town, and I was couch-bound for a few days, hitting both physical and emotional lows for various reasons. I was missing our TV time together in the evenings and looking for something to watch on my own. I settled on One Mississippi, a warm, funny, wholly unique show on Amazon, and I ended up finishing its two seasons in under a week. I love this show!

One Mississippi is a half-hour drama/comedy based in part of the real-life story of its star, Tig Notaro, who plays herself on the show. Tig is a gay radio host who lives in L.A. and returns to her hometown in Mississippi for her mother's funeral. She is just recovering from breast cancer and dealing with other health issues as well. Her step-father, Bill, and her brother, Remy, still live in her childhood home. Tig stays on for a while after her mother's funeral to help sort through her things and to give herself time to grieve and recover from her own recent challenges.

Bill is a hilariously rigid man, who likes things done in a certain way (the right way) and has never been warm or affectionate toward Tig and Remy...but you can tell that he cares underneath that gruff exterior. Tig's mom, seen in flashbacks, was just the opposite - the bubbly free spirit to Bill's stability. Tig misses her mother terribly; they were close, and her mom always seemed to understand her. Remy is kind of like a full-grown little boy, still living in the attic of his parents' house, working as a high school history teacher and enjoying Civil War reenactments in his spare time. Rounding out the initial cast are Tig's girlfriend back in L.A. and a young woman named Kate who works at the local radio station and helps Tig produce her show when she decides to keep recording in Mississippi.

This is one of those shows that just grabs you right from the first episode. It's a wonderful cast, and Tig is especially warm and welcoming, with a sense of (often dark) humor that makes her radio show such a hit. You just wish you could sit down with her in the local coffee shop and get to know her in real life! Tig's character is very open and honest, though there is an old family secret that all of them are struggling with and don't talk about much. The show deals with some very difficult topics - death, cancer, and chronic illness pop up in the very first episode - but always with a sense of humor and heart. It is both moving and at times, laugh-out-loud funny, mainly due to Tig's deadpan delivery of hilarious one-liners that tell it like it is. Tig being openly gay in the ultra-conservative, religious deep south is an obvious source of conflict and humor, but this ensemble cast makes you care about each and every one of them.

And the music! I almost forgot to tell you about the wonderful soundtrack to this show. Tig's radio show generally follows the formula of her telling a story about herself or her childhood (often humorous) and then playing music that fits the theme. The music she chooses is almost always great indie stuff that I have never heard before but instantly like. In fact, after watching a few episodes one night and loving the song that played with the credits at the end, I clicked over to Amazon Music and listened to the playlist, Music from One Mississippi. Wonderful songs to accompany the wonderful stories.

I loved this show and watched it in 2-3 episode binges. I actually missed the characters and thought about them when it wasn't on! I only just realized when I started this review that the last episode I watched at lunchtime today was actually the last episode of season two. I'm so sorry it's over already! Word is that season three is still up in the air, so please watch this funny, heartwarming, extraordinary show right away and let Amazon know you want more! You can follow One Mississippi on Twitter and Facebook, to help show Amazon how many fans it has.

One Mississippi is an Amazon original program, so it is available exclusively on Amazon Prime. I also just discovered (just this moment!) that there is a documentary about Tig on Netflix called Tig - I am definitely going to be watching that, too.

Have you watched One Mississippi yet or seen the documentary Tig? Tell me your thoughts in the comments below.


Thursday, October 19, 2017

Throwback Thursday: Immune Dysfunction in ME/CFS

This is my third Throwback Thursday post where I pull together some of my older blog posts on a single topic related to ME/CFS and its treatment - the first was on Physical Therapy for ME/CFS and the second on Orthostatic Intolerance (OI), a condition that is an integral part of ME/CFS. Both posts have had a lot of visitors and discussion, so I am glad that some of these older blog posts are getting some attention and helping a whole new community of people!

Today, I slept poorly (unusual for me) and woke with a sore throat, flu-like aches, and feeling awful. All of these are signs that my dysfunctional immune system has been sent into overdrive. It can happen from overexertion, though treating OI mostly eliminated that. This time of year, these kind of immune symptoms are usually due to being exposed to some sort of virus or other infection - there are many of them going around!

So, I thought I'd devote today's Throwback Thursday post to the Immune Dysfunction in ME/CFS - what it is, how it affects us, and how to treat it and try to normalize the immune system, including what to do when you crash due to exposure to an infection, what we like to call a virally-triggered crash.

Immune Dysfunction in ME/CFS
Immune dysfunction is at the heart of ME/CFS. Based on decades of research, it is most likely the "engine" that keeps our illness going - an immune system that isn't working properly and doesn't recover normally after the initial triggering event (often some sort of triggering infection but sometimes extreme stress like an accident or other trauma). This blog post explains all about the typical Immune System Abnormalities in ME/CFS and how they affect us and our symptoms. It's critical to understand that in ME/CFS, the immune system is not entirely activated or entirely deficient - which is why typical treatments for autoimmune disease or immune deficiencies don't work for us - our immune systems are partly over-active and partly under-active. I've tried to explain this in simple terms because it is essential to understand the basics of how our immune systems are dysfunctional in order to try to improve or normalize them.

Treating Immune System Dysfunction in ME/CFS
Through the years, with the help of some wonderful doctors and my own research, we have tried several different approaches to treating immune system dysfunction - all have been successful and have helped to improve our overall condition and well-being. Each of those small improvements when put together adds up to significant improvement in our ability to function, be more active, and has improved our quality of life.

The first thing we tried for the immune system was low-dose naltrexone (LDN), which is a tiny dose of a medication that has been around for decades and is normally used in larger doses. LDN has been proven to work effectively against dozens of different kinds of immune disorders (no studies on ME/CFS yet, of course!) and is also helpful for ME/CFS patients. I felt better the very first day I took it. That blog post includes details on what it is, how it works, dosing recommendations (less is more), and our experiences. It is not expensive, but you do need a prescription for it.

One of our most successful immune system treatments has been inosine, sold as a supplement in the U.S. or under the brand name Imunovir as a prescription in Europe and Canada. This blog post explains all about inosine/Imunovir, our experiences with it, and the complicated dosing schedule that is necessary to keep it effective. For us, it has done a lot to normalize our immune systems and significantly reduce these virally-triggered crashes we used to succumb to most of the fall and winter. It's also something that is cheap and doesn't require a prescription, so it is in reach for just about all patients - just be sure to read that post carefully about how to use it and the dosing.

Our most recent immune system treatment has also been another very effective one: glutathione injections. It has been well-documented in many research studies that people with ME/CFS have low glutathione levels (a compound in the body vital to energy production and detox) and our bodies don't make more efficiently. Any kind of glutathione supplementation will help to improve ME/CFS, but we have found injections to provide the most significant improvement. Before starting them, my son and I both got bacterial bronchitis about 3-5 times a year (why is explained in my post on immune dysfunction), and each time it would knock us out for weeks or months. I have done my injections twice-weekly as indicated and haven't had bronchitis since I started them - over a year now! My son has not been as diligent about the injections and continues to get bronchitis (he's seen the light now and is trying to remember them each week!). That glutathione blog post includes information on both supplements and injections to boost glutathione.

Treating Underlying Infections
Another common outcome of our immune dysfunction is Yeast Overgrowth. This is both due to the specific type of immune dysfunction common in ME/CFS and the fact that many of us need frequent antibiotics (due to recurrent bacterial infections). Yeast overgrowth is often a silent and stealthy factor in our illness - many people (myself included) don't realize it is an issue until they start to treat it and see how much better they feel. Keeping yeast overgrowth under control (that blog post lists many different approaches) helps my son and I both to feel less fatigued, less achy, and have significantly improved mental clarity (i.e. less brain fog).

Two very important aspects of immune dysfunction in ME/CFS are that old viral infections can become reactivated, and we are especially prone to bacterial infections. So, one of the treatment approaches that often yields the most dramatic improvements is to treat underlying infections. For many with ME/CFS, that means reactivated viruses that remain dormant in healthy people - things like Epstein-Barr virus that causes mono or another herpes-family virus called HHV-6 or various types of enteroviruses (that cause stomach symptoms in healthy people but can linger and remain activated in ME/CFS). This is a treatment pathway that often requires going to see one of the few ME/CFS experts, but is well worth the trouble because it can lead to significant improvement and sometimes even recovery. This blog post summarizes my own improvement after taking antivirals (in combination with LDN) - my virus levels were fairly low (but positive) so my gains were correspondingly small-ish but still important, most critically, an increase in activity level and in mental clarity.

The other kind of infections that ME/CFS patients should look for and treat are the various types of tick infections (Lyme disease is one of those). Even the CDC has now acknowledged these are far more widespread than previously thought (their early numbers were off by a factor of 10 and their revised numbers are probably still too low, due to difficulties in diagnosing), and countries and U.S. states that previously proclaimed they had no Lyme disease are now scrambling to address the "new" epidemic. Our immune dysfunction puts us at even greater risk than everyone else. Blood tests are not very helpful in diagnosing Lyme and other tick infections - the very best tests for Lyme only detect it about 60% of the time and doctors rarely test for any other tick infections. So, if you have had a negative test for Lyme before, that tells you nothing, since it is so prone to false negatives (you can believe a positive result). We learned all of this the hard way. Our son got sicker and sicker over the course of 3+ years while we chalked it up to "just" ME/CFS. We finally took him to a Lyme specialist (the only way to find out for sure) and found that he had 3 different tick infections! With treatment, he has gone from mostly bedridden to attending college, working part-time, and living on his own. So, this blog post explains all the details of Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections and how to go about that.

Last but not least, the position I find myself in today, a common one in fall and winter for those with ME/CFS: a sudden crash for no apparent reason. That often means we have been exposed to a virus or other infection that has caused our immune systems to go even crazier than usual, causing increased symptoms. This blog post explains how we prevent and treat virally-triggered crashes.

I think that covers my most important blog posts on the immune system. Since immune dysfunction is at the heart of ME/CFS, treating immune dysfunction (and the underlying infections that result) can often result in the most dramatic and significant improvements. That's been the case for my son and I. We used to spend most of the fall and winter crashed on the couch, and now we are mostly functional, except for a mild, occasional crash (like today, which should only last a day or two from recent experience).

Have you tried any of these immune system treatments?
What have your experiences been?
One that I haven't tried yet is IVIG, so please leave a comment below if you have tried that. I'm curious to hear from those who have used it.

Tuesday, October 17, 2017

TRIPLE Your ME/CFS Research Donation!

Starting today and running through Tuesday, November 28, the Open Medicine Foundation - one of the premier organizations conducting ground-breaking ME/CFS research - is taking the annual #GivingTuesday tradition (the day after Cyber Monday) and opening it up to a month and a half of chances to TRIPLE your donation.

The Cosgrove family, who have a family member with ME/CFS, have generously offered to match and triple every dollar donated to OMF during this month and a half, up to $100,000! Just think of what ME/CFS researchers can do with those extra resources!

For background, OMF is one of the organizations that sponsored the recent Community Symposium on the Molecular Basis of ME/CFS  and has a large team of experts in a variety of fields conducting research into all aspects of ME/CFS.

Here are more details on this wonderful Triple Giving Tuesday opportunity, including ways to help spread the word, and you can donate on this page. They've already raised $4500, and the campaign just started today! With this triple matching gift, even just a few dollars can help to make a real difference.

You'll find more information on OMF on this page, and here are more details on their research under the umbrella of the End ME/CFS Project.

So, stop by the donation page today to triple your gift! I just did.

Thursday, October 12, 2017

Throwback Thursday: Orthostatic Intolerance (OI)

Copyright: fberti / 123RF Stock Photo
The past few days (like most days!), I have been fielding a lot of questions on Twitter and Facebook about Orthostatic Intolerance (OI) - about how it is an integral part of ME/CFS (and often fibro & Lyme, too), how it is easily diagnosed, and how treatment can often dramatically improve all symptoms, activity level, and quality of life! I've also been working on a 2-part series of articles for ProHealth about OI. So, it seemed like a good topic for my second Throwback Thursday post (my first was on physical therapy for those with ME/CFS).

What Is Orthostatic Intolerance (OI)?
First, a quick explanation, in case you don't know about OI. The endocrine and autonomic nervous system dysfunction in ME/CFS make OI a natural outcome of our disease. Just about everyone with ME/CFS has at least one type of OI (and many of us have more) - some studies show more than 97%! OI also seems to be very prevalent in patients with fibromyalgia and Lyme and other tick infections.

OI basically means an inability to hold our blood pressure (BP) and heart rate (HR) steady when we are upright (sitting up but especially standing). The most common forms of OI seen in ME/CFS are POTS (Postural Orthostatic Tachycardia Syndrome) - where the HR goes up when you are upright - and NMH (Neurally Mediated Hypotension) - where the BP drops when you are upright. There are also rarer forms of OI, like where the BP rises when upright or where BP and HR jump all over the place. If you can't hold your BP and/or HR steady while standing still for 10 minutes or more, that is OI.

This blog post explains all about OI - what it is, why we have it, how to diagnose it, how to treat it, and our own experiences in treating OI.

This excellent article on OI by Dr. Peter Rowe is more comprehensive, covering all types of treatments for OI. It is written in plain language and can be understood by patients but is also perfect for printing and sharing with your doctor.

If you prefer to watch a video rather than read, here is an excellent webinar by Dr. Rowe on OI.

Diagnosing OI
The gold standard for diagnosing ME/CFS is the Tilt Table Test (TTT), which some doctors will insist on; however, you can more easily (and far more cheaply!) diagnose OI with a simple 10-minute standing test done in any doctor's office.

This blog post explains how to do this kind of in-office standing test and our own experiences doing them. There is a link at the end to instructions and forms to print for your doctor, or you can print more detailed instructions & forms at this link (yes, the test was originally designed by NASA!).

Whether you get a TTT or do the in-office standing test, you and your doctor should be aware that OI testing may not pick up your OI in a single test (as I explained about my own test) - this study documented that OI testing unreliability and also has some tips about what time of day might produce more accurate results.

Treating OI
So, now you know you have OI (told you so!). The good news is that there are many different treatments available, and treating OI often brings dramatic improvement in all symptoms and allows you to be more active without crashing afterward. The most complete and comprehensive review of treatments (both medications and lifestyle changes) is in Dr. Rowe's OI article. Again, share this with your doctor - since Dr. Rowe is at Johns Hopkins, he has instant credibility and most doctors are glad to learn about OI (if yours isn't interested in learning, then you need a new doctor).

One thing you can do to help manage your life is to measure your HR and stay within your limits to prevent post-exertional crashes. This is mind-blowing stuff - once you see for yourself how your HR skyrockets when you stand up, you will wonder how you managed to do anything since getting ME/CFS. Without any treatment for OI, the heart rate monitor (HRM) can only help you determine what is within your limits and what is beyond them, but with treatment, you will see from your HRM that you can do more without going past your limits...which is life-changing! Then, you can use your HRM when you are active to stay within your limits.

One way to bring HR down to normal levels and also stabilize BP is with low-dose beta blockers. This blog post provides detailed information on how to use beta blockers to treat OI (hint: lower doses than normal and LOTS of trial and error) and our own experiences. They have been life-changing for both my son and I, allowing us to be MUCH more active without crashing. Crashes from over-exertion have now become rare for me.

My sons both had excellent results with Florinef, which often works well for kids and teens (and is worth a try for adults). That is covered in more detail in my OI overview post.

For those who are severely ill and/or have significant pain issues, a specialized form of Manual Physical Therapy for ME/CFS and EDS is one option that has helped a lot of patients. Don't panic - this isn't normal PT where you use weights and other equipment to exercise. It starts out with the patient completely passive and incorporates an approach called nerve gliding, which can help immensely with pain and decreased mobility issues.

Other treatment approaches are covered in detail in Dr. Rowe's article.

So, YES! You almost certainly do have some form of OI, and treating it can bring vast improvements to your symptoms and your life.

Have you been diagnosed with OI yet? What treatments have helped you?

Tuesday, October 10, 2017

TV Tuesday: Ten Days in the Valley

One of the new fall TV shows I was most excited about is Ten Days in the Valley, a "limited series" with 10 episodes on ABC about a young girl who is abducted from her home and her overworked, stressed-out mother. We have watched the first two episodes so far, and it is dark and suspenseful with plenty of twists.

Kyra Sedgewick (known for her starring role on The Closer and many other movie roles) stars as Jane Sadler, a TV producer. At the start of the first episode, we see that she has a difficult relationship with her ex-husband, Pete, played by Kick Gurry, who begs for more time with their daughter. Jane seems to have a very close relationship with her adorable daughter, Lake, played by Abigail Pniowski, and the two of them cuddle together as Lake falls asleep. Jane, though, soon breaks her promise to stay in bed when she gets an urgent call that the next episode of her new cop show needs a complete rewrite by morning. In what looks like a familiar routine for Jane, she gets out of bed and tiptoes out to the shed behind the house that serves as her office. She brings a baby monitor and keeps the back door cracked open.

Things go from bad to worse that night, though, and after an intense night of writing, Jane heads back to the house to find that all of the doors - including the one she left open - are closed and locked. She breaks a window, frantic now, and gets into the house, only to find that Lake is gone without a trace. She immediately suspects that Pete came back during the night to take Lake because she'd said no to his request to keep her for a few more days. The police get involved, with the investigation led by Detective John Bird, played by Adewale Akinnuoye-Agbaje (aka Mr. Echo from Lost, a favorite of ours). At first, the police follow Jane's instincts, but soon other clues emerge that muddy the waters and point to a more complicated case. To make matters worse, it is clear to the police that Jane is lying or withholding information (she's doing both).

Only two episodes have aired so far, but we are loving this show. It's fast-paced suspense with layers of complexity that are just beginning to get peeled away, bit by bit. Sedgewick is her usual amazing self, here playing a woman who was clearly on the edge of falling apart even before her daughter went missing; her performance is intense and compelling. The other actors are excellent as well, including Malcolm-Jamal Warner as Jane's boss, Emily Kinney (we liked her most recently in the short-lived Conviction) as Jane's assistant, and Erika Christensen of Parenthood fame as Jane's sister. It's a taut thriller that keeps you guessing, with surprises in every episode. We can't wait to see more!

Ten Days in the Valley is currently airing on ABC and is available On Demand, on the ABC website, or for $1.99 an episode (or $16.99 for the season) on Amazon. There will be 10 episodes (each represents a different day).

Monday, October 09, 2017

Movie Monday: Everything, Everything

Since I review YA books, I'd heard about the novel Everything, Everything by Nicola Yoon. I haven't had a chance to read the book yet, so I was glad when the movie came out. Reading the summary of the story, I was wondering whether it might be a 2017 version of The Boy in the Plastic Bubble (anyone else remember that 1976 TV movie starring John Travolta?) Well, it kind of is...but with more depth and some plot twists I wasn't expecting. I enjoyed this teen romantic drama.

Eighteen-year old Maddy, played by Amandia Stenberg, has a rare immune disease such that her body can't protect her against germs; even a common cold could be deadly. So, Maddy has lived her entire live in her specially designed house, with only her mother and her nurse, Carla, for company. If you have to be stuck in a house your whole life, it's a pretty cool place, with natural elements, modern furniture, and a huge glass wall with a view of the outside world. Maddy is used to this secluded life, so she keeps busy taking architectural classes online, making models (her favorite is a diner where she imagines one day sitting in a booth), studying, playing games with her mom and Carla, and enjoying time online.

One day, a new family moves in next door, and Maddy has an excellent view from her window of the moving truck, the family, and especially, the gorgeous long-haired teen boy named Olly, played by Nick Robinson. He sees her, too, and is fascinated and attracted to the beautiful girl behind the glass. They begin communicating via handwritten notes held up to windows and progress to texts, IM, e-mails, and eventually talking on the phone. As expected, they fall in love. Olly yearns to show Maddy the world, and Maddy is suddenly no longer content to never leave home, but they both want to protect Maddy's health. I expected a rather predictable story at that point ala The Boy in the Plastic Bubble, but what happens next surprised me.

I watched this movie on my own, while my husband was traveling. He's not a huge fan of teen romances (though he did enjoy Before I Fall with me). It's a mostly light drama, with a bit of suspense toward the end and a hefty dose of romance. Visually, it's wonderful to watch. I found myself wanting to visit Maddy's home (minus the not being able to leave part), and the movie does some fun things with their through-the-glass romance, for instance Maddy imagining herself and Olly in person in the diner she designed while they're texting or talking on the phone. The teen actors did a good job and were fun to watch, and both Anika Noni Rose and Ana de la Reguera were good as Maddy's mom and nurse, respectively.

Everything, Everything is currently out on DVD and available for streaming on Amazon, starting at $3.99. Or you can read the book!

Disclosure: I received this DVD free in return for an honest review. My review is my own opinion and is not influenced by my relationship with the film's PR team.

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


Friday, October 06, 2017

UNREST Documentary Coming to Theaters & iTunes

Jen Brea in the documentary UNREST
The highly anticipated ME/CFS documentary UNREST, created by Jen Brea, is now out in theaters and coming soon to more theaters as well as iTunes. Pre-ordering it on iTunes will help it to get even more attention and get featured in the iTunes Store.

Jen Brea is an ME/CFS patient who has worked tirelessly for years on this high-quality documentary about our plight. Her efforts have been supported by many ME/CFS patients (including me!), and her film has been highly anticipated.

This powerful film has already won a bunch of awards, including one at the Sundance Film Festival for documentaries. As it is being shown in cities around the world, it is getting even more attention and acclaim. It even has a grade of 100 on Rotten Tomatoes, based on 12 different reviews, which is very impressive!

There are at least three ways to see it:
  • Attend a screening
  • Host a screening in your town or city
  • Pre-order it on iTunes (available October 10)
You can get information on all of those at the link above. I just clicked the button to pre-order on iTunes! The price is $14.99.

Here's the trailer:

The other thing you can do to help build awareness of ME/CFS is to tell people about the documentary! When you click this link on the UNREST website, there is a pop-up page to help you spread the news. Jen's film is extraordinary and is already helping to bring much-needed attention to our long-ignored disease. Help to spread the word!

Thursday, October 05, 2017

Throwback Thursday: Physical Therapy and ME/CFS

Copyright: 123RF Stock Photo
This is the start of a new weekly feature on my blog: Throwback Thursday. I realized I have 11 YEARS of old blog posts here, and most new readers are completely unaware of the resources available. So, I thought I'd do a weekly Throwback Thursday post that focuses on some of my older posts, with a different topic spotlighted each week.

And today's topic is...Physical Therapy. And that is because I was just discharged from PT today for an arm/shoulder injury - hurray! Woohoo! I'm not back to 100% yet, but I am about 70% of the way there and can hopefully continue to improve on my own, with what I have learned. So, PT has been helpful to me (and again last year when I injured my shoulder in a different way), BUT successful PT is a tricky business for anyone with ME/CFS.

I want to be clear that I am NOT recommending regular PT as a treatment for ME/CFS. That is a common practice that is often harmful to ME/CFS patients rather than helpful. The Graded Exercise Therapy (GET) approach to "treating" ME/CFS has been recently debunked (I will write a post on that soon), though thousands of doctors and clinics around the world continue to recommend it. Instead, here are 3 tips for patients with ME/CFS for PT that will help and not harm them.

PT for ME/CFS Patients for an Injury
Though PT is not recommended for ME/CFS patients, sometimes - as in my case this summer - it is necessary in order to help heal an injury or after surgery for an injury. When that happens, it is absolutely critical on Day 1 to educate your physical therapist(s) about the impact of PT for an ME/CFS patient - particularly the exercise intolerance and Orthostatic Intolerance (OI).

In this post, Physical Therapy for ME/CFS Patients, I outline how to do that and provide a short and simple 2-page document for you to print and give to your physical therapist(s). I created the document when I started my own PT last year, and it has been well-received by every PT I have worked with since. They have all appreciated the information and taken it to heart, using extreme caution and modifying my PT so that it doesn't make me worse. For instance, many exercises that are normally done standing up, I do lying on my back. Bonus: I have helped to educate medical professionals about ME/CFS and its severity.

Specialized Manual PT for Treating ME/CFS
There is one kind of PT that can be used to help improve ME/CFS, but it's not the kind that involves making you jump on the stationary bike and exercise. It's a specialized form of manual PT that Dr. Peter Rowe of Johns Hopkins - a renowned pediatric ME/CFS expert - developed along with a team of physical therapists. Manual PT means the physical therapist does the work instead of the patient, so it starts out with the patient entirely passive and lying down. This particular type of manual PT utilizes a technique called nerve gliding, which helps ease the movement of tendons and ligaments that are not moving smoothly, thus easing pain and improving mobility. The blog post at the link provides more information plus links to how to set it up for yourself or your child. I know several teens with ME/CFS and/or EDS who have benefited greatly from this in both reducing pain and improving their overall condition, in combination with treating OI (see below).

First, Treat Orthostatic Intolerance
Whether going to PT for an injury or for that specialized type of manual PT for ME/CFS, you won't get very far or be able to do much without first treating Orthostatic Intolerance (OI).  OI  is an integral part of ME/CFS - over 97% of ME/CFS patients have some form of OI (and most of those with fibro & many with Lyme, too). So, if you or your child has ME/CFS, then he or she does have OI, too. OI is an umbrella term encompassing several conditions where the body can not maintain a steady blood pressure and/or heart rate when upright (standing or even sitting up). The two most common types of OI in ME/CFS are NMH, where the BP drops when you are upright, and POTS, where the HR goes up when you are upright. Rarer forms of OI - like where the BP rises when upright - also exist. The good news is that OI is fairly easy to treat & often brings dramatic improvement to all symptoms. That link to my OI post explains all about OI, how to diagnose and treat it, and includes our own very positive experiences in improving all symptoms by treating OI.

If your HR is constantly going over your limit (indicating a "crash" is imminent) as soon as you stand or sit up, then you can't make much progress with PT. Treat OI first and then you can tolerate some exercise without crashing afterward, so you can tolerate modified PT...plus all of your symptoms will improve, you can be more active in your everyday life, and your quality of life will improve, too!

Hope that is helpful to you. What have your experiences with PT been? Do you think you or your child could benefit from the specialized for of Manual PT for ME/CFS? Let me know in the comments.

Tuesday, October 03, 2017

TV Tuesday: The Killing

For the past few weeks, during the end-of-summer TV lull, my husband and I have gotten hooked on a dark, suspenseful mystery series called The Killing on Netflix. All the new fall shows are starting now, but we are still loving this great suspense show!

Mareille Enos (more recently of The Catch) plays homicide detective Sarah Linden. As the first episode opens, Sarah is on her last day on the job in Seattle, ready to retire and start a new life with her boyfriend in sunny Sonoma, CA. She and her son, Jack (played by Liam James), have tickets for a late-night flight and have already packed up their home.

Then, a new case hits: a 16-year old girl, Rosie Lawsen, is missing and soon found dead. The case really gets under Sarah's skin as she and her replacement, Stephen Holden (played by Joel Kinnaman), criss-cross the city trying to find clues to Rosie's murder. Sarah misses her late-night deadline - a few times - and finally pledges to stay an extra week to try to wrap up the case. But this case is not easily solved.

Meanwhile, Rosie's family is devastated. Her father, Stan (played by Brent Sexton), owns his own moving company, but years ago he worked for the Russian mob as a "fixer." Her mother, Mitch (played by Michelle Forbes), is wrecked by depression at the loss of her daughter and can't even take care of their remaining two younger sons. Her sister, fun aunt Terry, steps in to help.

Meanwhile, there is a close mayoral race going on in Seattle, pitting the sitting mayor, Lesley Adams (played by Tom Butler) against the handsome, charismatic man-of-the-people councilman Darren Richmond, played by Billy Campbell. Politics gets pulled into the mix when a car registered to the councilman's campaign is found to be connected to the case.

The action goes back and forth between the detectives trying to solve the case, the grieving family who wants justice, and the ever-more nasty political campaign, as the Richmond side tries to distance itself from the horrific crime, and the Mayor tries to imply Richmond was involved. The tone of the show is dark and brooding, much like Sarah herself, set against the backdrop of a mostly dark and always raining Seattle (you won't want to visit the city after seeing all this dark rain!). There is plenty of suspense as the experienced detective and the newbie work (sometimes at odds with each other) to try to find a lead, with all kinds of unexpected twists and turns in the plot.

The entire cast is excellent in this show, but Mareille Enos is really outstanding. If you've only seen her before as the glamorous, wealthy Alice on The Catch, you will barely recognize her here. This is a grittier, more real feeling Enos who fully inhabits the character of Sarah, with her almost-obsession with being a good detective and solving this case in constant battle with her desire to be a good mom (and some secrets in her background). Her relationship with Holden is also an interesting one to watch develop, as she completely distrusts him at first, and he has his own secrets. His performance is also very good - both characters feel real and relatable.

We are in the middle of season 2 (of 4 seasons total), and Linden and Holden are still working on the same case, with all elements of the show digging deeper and deeper. There are surprises and red herrings in every show, plus plenty of character development on all sides. Like I said, we are completely hooked. If you liked The Fall, this show has a similar dark, gritty feel to it (it seems to be as dark and rainy in Ireland as it is in Seattle). It's perfect for this spooky season! (though we enjoyed it during the hot summer, too).

The Killing is a Netflix Original program, so it is available for streaming only on Netflix, with all four seasons there. Or you can watch it on DVD (link below).

Sunday, October 01, 2017

Weekly Inspiration: The Importance of Family

This weekend, my son and I drove 14 hours round-trip to my hometown of Rochester, NY, to attend my uncle's funeral. He died Monday night, and I spent all week making a memorial DVD with photos, music, and videos for my aunt and cousins (and to show at the funeral). As I'm sure you can imagine, that all adds up to being pretty exhausted today...and behind in everything else here at home.

My dad and I at my wedding in 1989 - I miss him every day!
But those aren't my primary feelings today. I am mostly feeling grateful for being surrounded by my extended family yesterday, for the comfort of grieving together and remembering happy times. Some of my cousins are still in Rochester, but many of us are scattered now - in PA, DE, CT, and NC. It's rare for us all to be together (8 of the 9 of my first cousins were there yesterday). Sadly, we all have something else in common now - none of us have fathers anymore (my dad died two years ago). This was incredibly sad (and difficult for me, with my father's death so recent and this uncle being his closest brother) but also comforting, as we could all understand what my cousins were going through yesterday.
My cousins and I 1978 (I'm 2nd from the left)
Besides the close family (who we do see once or twice a year for holidays), I also enjoyed seeing more distant family members that I hadn't seen in many years - my own father had requested a small, private funeral for immediate family only. And I also saw some old family friends (since my dad and my uncle were close in age, they shared some friends) whom I hadn't seen since I was a little girl. It was so wonderful to talk to them about my dad and reconnect.

My cousins and I yesterday (7 of the 9 of us)

Bottom line is that family is SO important. It's easy to become isolated when we live with chronic illness, not by choice but by necessity. You may not be able to attend family functions any more or go to large gatherings like weddings and funerals. Or, you may have purposely distanced yourself from family members who don't understand your illness.

So, I thought I would once again share some of my own experiences. This blog post, Helping Family to Understand ME/CFS, describes my own very painful experiences with my family in the early years of my illness and how I finally improved things. It's still not perfect - there are people in my family who will NEVER understand - but I am glad to have repaired things enough that I am able to enjoy my family.

This article I wrote for ProHealth, Managing Family Relationships - Holidays and Beyond, is particularly important at this time of year, with holiday gatherings approaching. It provides some tips on how to enjoy the time you spend with your extended family, whether they understand your illness or not.

And if you are homebound and not able to attend family gatherings, then this article might help. It's another one I wrote just recently for ProHealth: Staying Connected with Friends While Ill. While the article focuses on friendships, the tips apply just as well to family relationships, too, with ideas for staying in touch even if you can't leave home.

I hope those blog posts and articles help you to get closer to your family and/or enjoy your time with them more. Today, I am very grateful for my family.