Tuesday, April 30, 2013

Movie Tuesday 4/30

Ah, yes, running behind as usual! We had a lovely weekend camping - very relaxing - but re-entry has been tough. More on that later. For now, I thought I'd tell you about the movie we watched last week, before it's next week!

My husband was home from his business travel last week, but he had dinners for work 3 evenings! So, my 15-year old son, Craig, and I were still on our own a lot. Thursday, we did an easy evening - got take-out for dinner and rented a movie, Playing for Keeps. Craig wasn't sure about it at first, but we both ended up enjoying it. It's the story of a professional soccer player named George who has retired and is now an out-of-work soccer player. He's moved to Virginia to be close to his son and his ex-wife (played by Jessica Biel), whom he still hopes to patch things up with, but when he arrives, he finds that she is engaged to marry someone else. Somehow, George gets roped into coaching his son's soccer team, and the moms all go crazy for the handsome soccer player with the Scottish accent. With all that unwanted attention, George has trouble staying on track, but is determined to spend time with his son and win back his wife. It's basically a romantic comedy, but with a fairly unique (though not all that realistic!) plot. Craig and I both enjoyed it, with plenty of laughs, a great cast (including Dennis Quaid, Uma Thurman, and Catherine Zeta-Jones), and some good soccer scenes.

When my husband came home from his dinner, we told him about the movie, and I asked if that's what coaching our sons' soccer has been like for him - constantly fending off the predatory moms who just want his body! He said it's been just like that ;)

Have you seen any good movies lately?

Thursday, April 25, 2013

Must-See Webcast!

I managed to catch a couple of hours of the FDA Workshop for ME/CFS this afternoon after my nap. Wow.

This is truly an amazing thing happening - between the patient panel and interactive discussions with the entire audience of patients and public testimony, the FDA is spending two days listening to dozens and dozens and dozens of patients and doctors talk first-hand about their experiences with ME/CFS. This meeting is going to be a game-changer!

If there is any way you can tune in for at least a portion of the meeting tomorrow, you should! Here is the agenda and here is the link to the live webcast.

I am wishing now that I had gone to the meeting myself. I was asked to be on one of the patient panels, but I have been struggling a bit lately and didn't think I could manage it. But I am definitely going to submit my comments (FDA will accept them until August 2).

Wednesday, April 24, 2013

Watch FDA's ME/CFS Workshop Live Webcast

The landmark FDA Workshop on Drug Development for ME/CFS starts Thursday afternoon and runs through Friday. This is a BIG DEAL for everyone with ME/CFS, all over the world. It is the first of a series of workshops the FDA has planned for illnesses/medical conditions that have been traditionally overlooked in drug development (yes, CFS is first for once!).

Although a big deal was made of pre-registering for the live webcast, it looks like you might be able to watch it even if you did not register ahead of time. The links for the live webcast are on this page, and this is also where the video archives will be posted after the meeting.

The meeting runs from 1-5 pm on Thursday, April 25, and from 8:30-5 on Friday, April 26. There will be presentations by top ME/CFS experts, as well as several panel discussions including patients. Here is the full meeting agenda. The main patient panel discussions are scheduled for:
  • 1:30 pm Thursday
  • 2:55 pm Thursday
  • 10:25 am Friday
There are also patients involved in other aspects of the meeting.
(Note that all times are Eastern Time)

Also, it is not too late to let YOUR voice be heard! The FDA will be accepting written and/or video testimony until August 2. Just leave your comments or upload a video or Word file at this page. (See the questions below that the FDA is particularly interested in having answered by patients).

So, send in your comments and tune in as much as you can over the next two days, so we can show the FDA how much interest there is! This is a ground-breaking meeting for the ME/CFS world, and you won't want to miss it!

[FDA wants your answers to these questions:

Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients
  1. What are the most significant symptoms that you experience resulting from your condition? (Examples may include prolonged exhaustion, confusion, muscle pain, heat or cold intolerance.)
  2. What are the most negative impacts on your daily life that result from your condition and its symptoms? (Examples may include difficulty with specific activities, such as sleeping through the night.)
    1. How does the condition affect your daily life on the best days and worst days?
    2. What changes have you had to make in your life because of your condition?

Topic 2: Patients’ Perspectives on Current Approaches To Treating CFS and ME
  1. What treatments are you currently using to help treat your condition or its symptoms? (Examples may include FDA-approved medicines, over-the- counter products, and other therapies, including non-drug therapies such as activity limitations.)
    1. What specific symptoms do your treatments address?
    2. How has your treatment regimen changed over time and why?
  2. How well does your current treatment regimen treat the most significant symptoms of your disease?
    1. Have these treatments improved your daily life (for example, improving your ability to do specific activities)? Please explain.
    2. How well have these treatments worked for you as your condition has changed over time?
    3. What are the most significant downsides of these treatments (for example, specific side effects)?]

Monday, April 22, 2013

Movie Monday 4/22

Happy Earth Day!

Whew - long and tiring week last week! My husband was out of town all week, so I was on my own. Plus, my mom came to visit, and she and I went to one of my book groups Wednesday night - all fun, of course, but tiring.

So, I watched some movies myself last week, as well as some with my son, Craig:

For myself, I picked movies I thought my husband wouldn't be interested in. I watched Life in Flight during the week - couldn't stay up late enough to finish it, but I split it into two days (pretty pathetic for a 77-minute movie!). The story is set in NYC, about an architect/husband/father who is unhappy with his life. His wife is eager for him to climb the corporate ladder and merge his company with a big firm so she can continue to host fancy parties and go on 2-week island vacations with her friends. The architect husband feels like he will be selling out if he signs this big contract. His feelings are cemented when he meets a beautiful designer who shares his artistic leanings. It's a quiet movie - no big action or suspense - about being true to yourself, figuring out what's important in life, and making difficult choices. It's kind of sad but not depressing and with a glimmer of hope.

Friday night, I watched Main Street, another quiet, thoughtful film. This one is packed with an all-star cast, which is funny because I had never heard of it before, and it looks like it got very little press or circulation when it came out. It's about a small town in North Carolina that is slowly dying, in the way of many small American towns, with its Main Street full of shuttered businesses. Ellen Burstyn plays an old woman who grew up there and is trying to hang onto her old home, in the face of mounting bills and declining income. Colin Firth plays a Texas businessman (yes, Firth has a Texas accent in this movie - very strange) with a proposition to bring the town back to life and put its citizens back to work. He rents a warehouse from Burstyn's character, and Patricia Clarkson plays her daughter, who is wary of the stranger's motives. Other town residents fill out the cast, including Orlando Bloom (whom I didn't recognize until the credits!) as a police officer. This is another quiet movie without much action, about change and fear of change. It was a bit slow for me but enjoyable.

I let 15-year old Craig pick out a Redbox movie Friday night, and he chose Pitch Perfect - again! We both loved it just as much the second time. It is such a feel-good movie with great music and plenty of humor. I love Fat Amy!

Saturday night, with my husband back home, the three of us watched Little Miss Sunshine. Ken and I had seen it before, but it was Craig's first time. If you somehow missed this gem of a movie, you have to see it! It's about family - a very dysfunctional family that will make yours look perfectly normal! - and life, with all of its ups and downs. Dad is trying to make a living as a motivational speaker with his very own 9-step program. Grandpa lives with the family and does heroin and coke behind closed doors. The teen son admires Nietzsche and has taken a vow of silence until he meets his goal of going to the Air Force Academy. Mom is trying to hold the family together, sneaking cigarettes and serving lots of take-out fried chicken for dinner. Her brother is living with them because he tried to commit suicide. And the young daughter, Olive, played fabulously by Abigail Breslin, dreams of being a beauty queen. She's a bit overweight (probably all that fried chicken) but diligently practices her dance routine (that grandpa choreographed) in the basement. Then, the unthinkable happens - Olive qualifies for the Little Miss Sunshine pageant in California, so the family sets off on a road trip. At one point, Craig said, "Mom, you said this was funny but it's sad." And, yes, it does have its sad moments - this family has some serious problems - but it is also very, very funny, especially if you can appreciate a bit of dark humor. Just watching them push-start their old VW van after the clutch breaks cracks me up every time (see cover photo). And the closing scene when Olive does her dance routine at the pageant is hilarious! I love movies that are about real life - joys and sorrows, tears and laughs - and this one is great.

Have you seen any good movies lately?

(If you are interested in what we've been reading, check out the Monday post at my book blog).

Tuesday, April 16, 2013

How My Son Went From Couchbound to College

I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed him to start college with his peers last August. Desperate for some way to help him and allow him to start college on time, after 18 months of near-total incapacitation, we tried dozens of new treatments that summer, so we aren't 100% sure which of them is really responsible for his dramatic improvement ... but we have some educated guesses.

A quick bit of background for those who are new to my blog: My son's history with both ME/CFS and Lyme disease is a long and complicated one. He first got Lyme in 3rd grade but seemed to recover fully from that and was very healthy in 4th grade. In 5th grade, he suddenly became severely ill and was diagnosed with ME/CFS (which I'd had for 2 years). He missed 60 days of school in 5th grade and only attended part-time in 6th grade, with home tutoring. Treatment with Florinef for Orthostatic Intolerance dramatically improved his condition at the end of 6th grade, and he went back to school full-time, re-joined the band, and was even able to play soccer again.

At the end of 7th grade, he got Lyme again. This time, he did not return to his normal baseline after treatment. He remained more fatigued, though treating with more doxycycline didn't seem to have any effect. Over the next 4 years, his condition worsened very gradually. He was still attending school but missed 25-35 days a year, with ever-worsening fatigue and cognitive dysfunction (and all the other typical ME/CFS symptoms). Finally, some strange symptoms alerted to the fact that he had another tick-borne infection, bartonella. A Lyme specialist diagnosed him with Lyme, bartonella, and babesia (all tick infections); our best guess is that he had these other infections all along but they were never tested for or treated back in 7th grade.

Treating tick infections that have been present for that long is a tricky business, and most people get worse (due to a herx reaction) before they get better. Our son got even worse than most after so long, with an 18-month long severe herx reaction that left him mostly incapacitated. He spent most of his junior and senior years of high school on our couch, struggling to catch up on missed work, but with the help of home tutoring (and many fierce battles with the school for accommodations), he managed to graduate on time. Although he'd had some gradual improvement, he still had a difficult summer (and only finished his high school work the day before college started!), but at the end of August, he improved dramatically.

Yeah, that was the brief version! So what changed last summer that allowed him to start college on time and even live on campus? Here are the things we tried and our best guesses as to their effectiveness:

Beta Blockers - We have no doubt that starting him on low-dose, extended-release beta blockers at the end of August played the greatest role in getting him back on his feet (quite literally). He felt an immediate improvement and is now able to walk all over campus without crashing the next day and has even joined the Ultimate Frisbee team. He still takes Florinef for OI (we tried reducing the dose and found he still needed it), but adding the beta blockers resulted in a significant improvement.

Increase Imunovir/inosine - He started inosine last spring (something I have had good success with, too), but it was last summer that I began very slowly increasing his dose. He now takes 4 pills a day - which is still lower than what is recommended - and I think inosine has helped to normalize his immune system somewhat so that he can better fight those infections. I've also noticed that virally-induced crashes have become quite rare for him (and for me) since inosine. Note that we started with prescription Imunovir (not available in the U.S.) and later switched to generic inosine, which worked the same for us (but is far cheaper), and that the dosing is quite complicated and must constantly change. It's all explained in that post on Imunovir/inosine.

New Supplements - This one is more of a guess, but we changed many of his supplements last summer, and I do think that has helped. We consulted with a biochemist/registered dietician who advised us on supplements based on his history, symptoms, genetics, and circumstances. I think that the most significant effect probably came from those supplements aimed at improving his methylation process (something I had started on my own before) to allow his body to better process both the medications he was taking for tick infections, as well as the toxins (i.e. dead bugs) released by the treatments. I think this is a very individual thing--choosing appropriate supplements based on symptoms and history--and we relied on the advice of the dietician/biochemist. In some cases, he was already taking certain supplements (like a multi-vitamin, alpha lipoic acid, and others), but the biochemist recommended a specific brand that she felt would be better absorbed and/or more effective. All of this has been very expensive, and we are not entirely sure which have helped and which are a waste of money. We've been afraid to change anything since he's been doing so well!

Eliminate/Reduce Artificial Dyes -  I really have no idea if or how much this helped. The dietician/biochemist said that artificial coloring can be toxic to many people, especially those with chronic illness. He was ingesting a lot of it because he drank 2-3 liters of Gatorade a day. The salt and fluids helped tremendously with his OI, but she was concerned that the artificial dyes were detrimental. We switched from Gatorade to Vitalyte, a more natural electrolyte drink with only natural colors (and not much of that). I have no idea if it helped or not, but the Vitalyte is actually less expensive than Gatorade anyway, and both of our boys like it. I think it has a lot less sugar in it, too. Later, when we realized that sugar was a big problem for him due to yeast overgrowth, we switched again to GU Brew tablets.

Trial of Gluten-Free/Dairy-Free Diet - Again, I have no idea if this helped or not. The dietician/biochemist suggested he try a restricted diet. She did not suspect food intolerances but said that people with ME/CFS just have trouble digesting gluten and casein (a protein in dairy), and that these substances can increase fatigue and other symptoms because they block one of the methylation pathways in the body. Our son was NOT happy about such a restricted diet, but he was a good sport and went along with it. I joined in for moral support, and he and I ate strictly gluten-free and dairy-free (I was already dairy-free) for 7 weeks. His improvements began several weeks after starting the restricted diet and he didn't notice any improvements in GI issues, so after 7 weeks, he added dairy back in first and then added gluten back a couple of weeks later. Interestingly, he did notice some GI issues worsen when he added dairy back, so on his own, he decided to limit low-fat dairy (it is probably a lactose intolerance since higher-fat dairy products like ice cream and full-fat cheese don't bother him much). That was 6 months ago, and he is still doing well, so I don't think the gluten and casein were a major issue for him...BUT it is possible that eliminating them for a while helped his body to recover and improved his ability to process toxins by temporarily removing that methylation block. Who knows? Note that we later both adopted a modified Paleo diet, which does help.

I think those were the major changes we made. Once he began to improve, there was a cascade of positive effects that built on each other. As a result of his improvement, he was finally able to gradually increase his dose of antibiotics to treat Lyme to a full dose (for a long time, he couldn't tolerate more than 1 pill every 3 days!), so we are finally seeing some progress in his Lyme/bartonella/babesia treatment. I think this is a critical point to understand: when underlying infections are present (Lyme, other tick infections or reactivated viruses like CMV, enteroviruses, EBV, HHV-6), as they are in many people with ME/CFS, you can't improve until you treat those infections, and the immune dysfunction makes it worse. It is a vicious cycle, and you have to address it all  - treat immune dysfunction and underlying infections.

The beta blockers allowed him to exercise again, and he gradually built his stamina up as a result--this is something I have seen, too. Being able to exercise without crashing allows you to build muscle and improve cardiovascular functioning, which in turn helps to improve your overall physical condition and well-being, allowing you to do even more. He slimmed WAY down as a result and lost the bloated look he'd had. He now walks all over campus every day, plays Ultimate Frisbee with his friends (he's not yet in good enough condition to play in their tournaments, but he practices with the team and is gradually building stamina), and is taking 3 classes each semester. He lives on campus in a single room and stays up late with his friends like any other college kid (though he can go to bed early when he needs to). To our astonishment, he missed only 3 days of classes fall semester and has so far missed only 1 day in the spring semester (the result of 6 straight hours of snowboarding!).

It all still feels like a miracle to us, and we are grateful every single day. I wanted to share with you not only the specifics of what we think helped but also the hope. I don't know whether he (or I) will ever be 100% well, but improvement is possible. He is so happy to be living among his friends, going to school, and resuming a somewhat normal-ish life.

Monday, April 15, 2013

Movie Monday 4/15

Another busy week here but kind of a strange weekend. My husband went to visit his father in Oklahoma, so we missed having him around this weekend (and missed being able to go with him). Normally, all four of us go out there for spring break, but our sons had different spring breaks this year, so a week-long trip was impossible.

We did watch a couple of movies, but we also did something extraordinary this week. Drumroll, please....

We saw a movie in the theater! (gasp!) Unfortunately, this has become a very rare experience for us - it's just easier to watch a DVD at home, lying on the couch, with a pause button nearby for bathroom and snack breaks. The last time we went to the theater was to see the last Harry Potter movie. We had a rainy Friday here, and since my husband would be gone for the rest of the weekend, I thought it would be fun to go out to the movies for a change.

We went to see Oz the Great and Powerful with our 15-year old son (we saw the regular one, not the 3-D version). It was very good, and we all enjoyed it - an excellent choice for viewing on the big screen. We also enjoyed the previews - every single one looked like something we'd like! The movie was a bit different than I expected. I knew it was based on L. Frank Baum's original books, not on the Hollywood movie, but I was pleased to see many visual homages to the original Wizard of Oz movie. So, this is something of a prequel to The Wizard of Oz, the story of how the wizard came to Oz from Kansas. James Franco plays the phony wizard who gets caught in a power struggle between three witch sisters. It was bright and vivid and exciting and lots of fun!

Saturday night, Craig was invited out to dinner with a friend's family, so I put all the dinner ingredients back in the fridge, got take-out fajitas, and watched a girl DVD by myself! Ah....blissful solitude! I watched I Don't Know How She Does It starring Sarah Jessica Parker as Kate Reddy, a working mom trying to juggle everything in her life, and it was better than I expected. I read the book many years ago and enjoyed it, but sometimes book adaptations are just so-so. I don't remember all the details about the book, but I do recall it having a snarky kind of humor that was missing in the movie (the novel and the humor was British but the film was set in the US). The movie had some funny moments, but with more of a heartfelt, genuine vibe. Greg Kinnear plays Kate's harried husband, and Pierce Brosnan plays a work colleague of Kate's. Overall, I liked it - a nice, enjoyable bit of escapism that reminds you of what is important in life. For me, it brought back lots of memories of my Previous Life as a harried working mom who constantly traveled, and I decided I am happy living life in the slow lane now, in spite of CFS.

Have you seen any good movies lately?

Thursday, April 11, 2013

ME/CFS Charity Volleyball Fundraiser

Want an opportunity to help ME/CFS research from your couch or bed?

This lovely young woman from George Washington University whose aunt has CFS has set up a charity volleyball tournament to raise money for ME/CFS research. Check out her website to read all the details and hear from an adorable little boy who wants you to help his Grammy.

You can donate directly from the website to help fund this great charity event up until April 21, the date of the tournament. I just did!

Tuesday, April 09, 2013

Movie Monday 4/8 (on Tuesday)

I really tried to get to this post yesterday, but severe allergies have me down this week. We went from snow 2 weeks ago and temperatures in the 20's one morning last week to highs in the 80's today! The pollen is going crazy and so are my allergies. Hopefully, tomorrow will be a better day.

We did enjoy a couple of movies last week:

Friday night, I chose a movie I thought Craig would like (poor boy is stuck at home alone with his parents now that his brother is off at college!), so we watched Skyfall, the latest James Bond movie starring Daniel Craig. In the first 5 minutes of the movie, there is a car chase, a motorcycle chase, a shoot-out, and a fist fight on top of a moving train...and that is before the opening credits. This one starts with a bang! My husband and son love all the action. I could take it or leave it, but the intriguing plot pulled me in pretty quickly. This time, it seems that some unknown villain is targeting MI6 itself, and Bond must work together with M to find out who it is and stop him. We all enjoyed the movie, and I especially liked that we got a bit of backstory from Bond's childhood in this one.

Saturday night, with Craig at a bonfire party, then sleeping at a friend's house, Ken and I had a rare night to ourselves! We had a lovely dinner at our favorite Thai restaurant where we ran into two sets of old friends, then came home to watch The Sessions, in which Helen Hunt plays a sex surrogate hired to help a 38-year old polio victim (and virgin) who lives much of his life in an iron lung. At first glance, you might think this movie is just a bit of tawdry fluff, but it is warm and heartfelt, as evidenced by its many awards at film festivals. The R-rating warns of, among other things, frank talk (I just found that funny), and there is plenty of that and nudity, too. But this is no cheap sex movie. Nor is it maudlin or depressing, despite the main character's dire circumstances. It is based on a true story and is full of emotional depth; it is funny and sweet and honest. It is a bit sad at times, too, but I found its tone mostly positive and hopeful, an encouraging perspective on what you can accomplish, no matter how severe your physical limitations.

Have you seen any good movies lately?

Monday, April 08, 2013

Last Day to Register for Attending OR VIEWING FDA Meeting

Oops - I almost missed this. If you want to watch the webcast of the upcoming FDA meeting from home, you need to register online by midnight TONIGHT!

Use this link to register for the FDA ME/CFS Drug Development Workshop on April 25 - 26 - for either attending in person or watching the webcast. It only takes a moment - I just signed up for the webcast.

Tuesday, April 02, 2013

Two Ways to Help ME/CFS Treatment Move Forward

On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Enchephalomyelitis (ME) in Bethesda, Maryland. This is our big opportunity to teach the FDA all about the severity and effects of ME/CFS and our urgent need for effective treatments (this FDA link keeps going out. I can't figure out why. If the link doesn't work for you, try the one in this OccupyCFS post - that's the one I used, too, but for some reason it works there and doesn't here).

The meeting is open to the public, though of course, many ME/CFS patients are too sick to attend. However, even if you are bedridden, there are two ways that you can help in this momentous event. Two different surveys have been launched to collect patient data, and the more patients that respond, the more impact we can have in convincing the FDA that there is an urgent need for medications designed specifically to target the unique complexities of ME/CFS.

The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register notice for the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required - brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.

The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients' point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report. Follow this link to begin the Chu/Jason survey.

If you can manage both surveys, great - they are different surveys and they can use all the patient input they can get and the more responses they get, the more meaningful the data will be. If you can only manage one, just choose one  - your participation will be helpful either way.

You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven't been feeling well lately - thanks, Jennie!)

This FDA workshop is a big deal, so help out however you can!

P.S. I believe the CFIDS Association survey is open to patients all over the world, not just in the US. Questions on the survey will ask where you're from so that US data can be pulled out, but the more responses, the better! If the FDA gets on board with focusing on ME/CFS, it will help make treatments more available all over the world.