Feedback Requested on ME/CFS Public Service Announcements

As you may know, the ME/CFS Worldwide Patient Alliance has been sponsoring a contest for patients to create videos that can be used as a Public Service Announcement (PSA) for ME/CFS.  The winning video will be sent to TV stations all across the nation.

Six excellent videos have been created and entered in the contest, but now MCWPA needs your help!

Use this link to the MCWPA Discussion Forum, where you will find a Discussion Topic created for each of the PSA contest entries.  Click on the link to watch the YouTube videos, then leave your thoughts and opinions on each one in the discussion forum.  Entrants will then have a chance to revise their videos, based on your feedback, before final voting on the winner.  Sounds like fun, right?  Go on over there now and let your voice be heard!  This is your chance to add your own thoughts to a national ME/CFS awareness campaign.

Great Articles on ME/CFS

Last week, there were several really excellent articles on ME/CFS in the mainstream media.  I've had these 3 articles sitting open in browser windows on my laptop for almost a week now!  I figured it's time to finally pass these along:

• Unlocking Chronic Fatigue Syndrome by Amy Docker Marcus (our best friend in the media), published in the Wall Street Journal on May 22.  This article gives an overview of ME/CFS research like you've never read in the newspaper before: heavily focused on real science, possible infectious agents, and new studies.
• Wall Street Journal's Health Blog, also on May 22: The Hunt for the Biological Causes of Chronic Fatigue Syndrome by Katherine Hobson.  This brief blog post is mostly focused on the National Institutes of Health (NIH) upcoming conference on ME/CFS April 7 - 8, including 100 scientists, but it also references Amy Docker Marcus' article, above.
• Scientists Seeking Biological Causes of Chronic Fatigue Syndrome, published on May 22 on the Fox News website.  Although this is essentially a reprint of Marcus' WSJ article (above), I thought it was significant that Fox News covered it as well.

So, that was last week's news!  Now I can focus on THIS week...

Movie Monday 3/28

Monday already!  We spent the weekend working on our tax return (still haven't finished yet!), so it didn't feel like much of a weekend, but I am starting the week feeling quite good and refreshed by my blog break.  My crash of last week seems to be cleared up - I was able to get back to walking again today!

Thank you so much to all of you who commented here last week and expressed your caring and support while I was going through a rough time.  I can't tell you how much that meant to me, and how much it boosted me up.  There is nothing in the world that beats the feeling of knowing that there are other people out there who totally understand.  Thank you.

Our weekend had some real highs and lows.  On Saturday, Jamie felt well enough to work on a Habitat for Humanity house with a group from his school, something he has wanted to do for ages.  He came home on top of the world!  Sunday, however, was awful for him.  I'm sure he was a bit crashed from Saturday, but he also had severe stomach pains and chills and was once again stressed over not being able to finish his schoolwork.  Fortunately, today was better for him as well, and by tomorrow, he should finally be done with all that make-up work and able to start a new marking period with a fresh start.

Craig went to a marathon sleep-over party, from 5 pm Friday, culminating in a dance Saturday evening.  Some kids were staying over another night, but we told him one was his limit and picked him up after the dance.  He slept for 13 hours straight!!  He did bounce back on Sunday, though, so we were grateful for that.

The bright spot in the weekend for us was watching a couple of great movie DVDs in the evenings!  With Craig away most of the weekend, Ken, Jamie, and I watched:

• Inception, starring Leonardo DiCaprio and Ellen Page, was just as complex as everyone has told us!  DiCaprio stars as a man who can enter people's dreams and works in corporate espionage, stealing secrets.  He and his colleagues get the ultimate challenge, though, when they are hired to plant an idea instead of stealing one.  At one point, they are all embroiled in a dream within a dream within a dream within a dream.  Follow that?  We all enjoyed it very much, but this is definitely not a movie to watch when brain fog is bad!
• Saturday evening, Jamie chose 2012 which was surprisingly good and better than I expected.  It's something of a classic disaster film, with the Mayan predictions about the end of the world in 2012 proving to be true, but with good acting, good writing, and even some emotional depth.  Starring John Cusack (one of my favorites), Amanda Peet, Danny Glover, and Thandie Newton (among others), this was the first action film that actually made me cry.  I don't think it's giving anything away to tell you that it does end on a note of hope, which was a relief after watching The Road a few weeks ago!

Have you seen any good movies lately?

Time to go make dinner - we have stuff going on almost every evening this week - but I do hope to find a few minutes here and there to get back to visiting blogs this week.

Blogging Break

Just a quick note to let you know I've decided to take a brief break from blogging for the rest of this week.

I had a really rough day yesterday, with several incidents that pushed me over the edge, emotionally, and I'm feeling very overwhelmed.

One of those incidents was my oldest son, who himself is overwhelmed and exhausted from trying to make up 4 weeks' missed work at school, saying, "This illness has ruined my life.  I am nowhere near a normal teenager."  It broke my heart and still brings me to tears as I type this.  All of us in our family try very hard to stay positive most of the time, to look for joy in our lives and remember to be grateful for all that we have....but sometimes, the reality of what we're up against is just too much to bear.  This illness is particularly unfair to kids and teens.

That came on top of feeling very overwhelmed lately.  I just feel like I am trying to do too many things...and am failing at all of them.  One of those things is keeping up with blogs - both mine and others.  I know it's been ages since I've visited some of your blogs, despite my best efforts to keep up, and I apologize for that.  When I found myself snapping at my family last night because I was so stressed over online happenings, I realized I need to take a break.  It may sound counter-intuitive to take a break when I'm already feeling behind, but I need to focus just on taking care of myself and my family for a few days.

Thanks, in advance, for your understanding and patience.  One comfort right now is knowing that this online support network is always there for me, even when I can't keep up.  I know you all understand.

See you again soon -

Young People with CFS: Speak Up About ME!

If you or your children became ill with ME/CFS before the age of 21, this is for you!
(If not, you can still help...)


Denise, a good friend of mine who has two teen sons with severe ME/CFS, has come up with an amazing idea to build awareness of the impact of ME/CFS on kids, teens, and young adults.  Her awareness project now has several sponsors and is being talked about all over the internet!


The CFS Advisory Committee (CFSAC) of the U.S. Department of Health and Human Services finally announced its next meeting will be on May 10-11.  Speak Up About ME - Invisible No More! will take place during the second day of the meeting, on Wednesday, May 11.  Here's how you can help:

• If you or your kids became ill before age 21, e-mail Denise with the following information: Name of patient    Age at onset of ME/CFS     Age at diagnosis    Current age (as of 5/11).  With your permission, she will include your information in her own testimony at the meeting.
• If you are able to, plan to come to the meeting in Washington, DC, on May 11 to give testimony in person about the impact of ME/CFS on your life or your child's life.  The young people present will attend the meeting, get together for lunch, and, if able, visit their congressional representatives.  If you want to attend the meeting in person, send an e-mail to the CFSAC as soon as possible to tell them you want to give testimony so they can reserve a spot for you.  In-person spots fill up early.
• If you can't attend the meeting in person, please submit written testimony.  Your 5-minute testimony can be phoned in, read by someone at the meeting, or you can attend via video conferencing.  Again, you must e-mail the CFSAC to notify them that you intend to give testimony, in whatever form, so they can reserve time for you.
• Whether you can attend in person or not, you can order a t-shirt!  MCWPA Young People T-Shirt for CFSACMCWPA Young People T-Shirt for CFSACThe young participants will wear identical shirts, emblazoned with the project title, Speak Up About ME, to be purchased through Zazzle (MCWPA Young People t-shirt for CFSAC).  Each shirt will be customized with a slogan that shows how much of the patient's life has already been spent ill (For example, my son Jamie's shirt will announce "sick 6 of 16 years").
• Help publicize this awareness project through your own blog or Facebook page (e-mail Denise for a ready-made PR announcement or feel free to link to this post). 
• Donate to this project to help defray the costs. 
• Ask your doctor(s) to help spread the word to their other young CFS patients (you can print information from the website to take to your doctors). 
• Visit the Speak Up About ME, Invisible No More! website for more information.

This event is being supported by a coalition of ME/CFS organizations including P.A.N.D.O.R.A., the Rocky Mountain CFS and FM Association, the Vermont CFIDS Association, the ME-CFS Worldwide Patient Alliance, Phoenix Rising, CFS Solutions of West MI, CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia) of Georgia and Facebook's cause-project page.  

Some of the sponsors are even going to cover the costs of the young people's lunch, taxi rides to visit Congressional representatives, and individualized cards for young people to hand out. These will resemble trading cards, with the young person’s name and photo on the front, along with the phrase "Thank You for Remembering ME." ME, of course, will refer not only to the patient but to Myalgic Encephalomyelitis. The back of the card will have bullet points about ME/CFS, including its negative economic impact.  We are hoping that this event will also attract media attention.

Isn't this exciting?  Please help spread the word and participate however you are able to!  My entire family (my husband and I and our two sons) will be attending the May 11 CFSAC meeting in Washington, DC.  I already e-mailed to ask for testimony time for all of us. I would love to finally meet some of you in person!

Spread the word about Speak Up for ME - Invisible No More!

Post-Socializing Crash

I've been moderately crashed since last Wednesday, though I'm not sure exactly why - it might be from over-doing (always a possibility) or from increasing my dose of Immunovir (still trying that out) or from running out of one of my Lyme supplements and going without for a few days.  As always, who knows?

But one thing is for sure - I enjoyed two different social interactions on Saturday and paid with severe crash symptoms on Sunday.  Even more than the exercise intolerance, it seems completely unfair that simply talking to friends can make me sicker.

Saturday morning was our local ME/CFS and FM support group meeting.  A friend started the group a few months ago, and this weekend was the second time I went.  There were seven of us, some with CFS, some with FM, some still undiagnosed, and our discussions were so interesting that before we knew it, two hours had gone by!  That was a lot for me, given that I was already not in top shape (though I had been OK that morning).  One friend from the meeting and I went out to lunch, which I thoroughly enjoyed.  Hey, I had to eat anyway, right?

I went home and napped, had a brief time on the couch, and then it was time to go to a friend's house for dinner.  By then, I was pretty wiped out, but we'd made plans weeks earlier with two families who are among our closest, oldest friends.  It was a quiet evening, just sitting and talking and enjoying a delicious dinner, but by 8 pm, I was really exhausted.

Getting ready for bed that night, I felt like I'd run a marathon!  My body ached all over, and I knew I'd need an Ambien to sleep soundly (I rarely take them when I'm at home).  I woke up Sunday still wiped out, achy, and with a sore throat and was totally useless all day. 

How can social interaction cause such physical repercussions?  It's crazy, isn't it?  I mean, I understand some of the mechanisms behind it, but it still just seems surreal.  The same thing happens when I go to my book group - a couple hours of sitting comfortably and talking with friends results in physical exhaustion.  This is just torture for someone like me, who is naturally a very social person.

Well, fair or not, that's what happens.  I'm doing a bit better this afternoon and have been trying to rest today.

(P.S. No Movie Monday this week - Ken and I were too tired to stay up late enough for movies this weekend!)

Article on ME/CFS and XMRV in Nature

Nature magazine ran a 4-page feature-length article on XMRV and the search for a cause for ME/CFS, including an in-depth interview with Dr. Judy Mikovitz.  It's a pretty good article - a clear and well-written explanation of the controversies surrounding XMRV, mostly accurate and even-handed, indicating that CFS is now beginning to garner serious attention in the scientific community. 

Just one glaring problem - the article starts by referring to Chronic Fatigue Syndrome (CFS) but then quickly lapses into lazily calling it chronic fatigue (no caps even).  Lots of readers have already complained, and the editor responded with an apology and an assurance that he didn't intend to downplay the seriousness of CFS but just thought it would read better that way without a lot of acronyms (you can read all the letters at the end of the article). 

Sloppy editing, but otherwise an excellent article and some very good coverage for us.  Besides, the sad truth is that most people will not even notice the disparity between calling it CFS and calling it chronic fatigue.  At least people are finally talking about it.  If you're confused yourself over XMRV, this article provides a pretty good overview.

Taking the First Step to Social Security Disability

After nine years of being mostly incapacitated and unable to work more than an hour or two a day, I finally took the first step toward obtaining Social Security disability benefits today by submitting my application, through my lawyer's office.  I don't have very high hopes - in part because Delaware has one of the lowest rates of disability approval in the nation - but I thought I should give it a try to counter our mounting medical bills.

Why did I wait nine years to apply?  That's a good question with convoluted answers wrapped up in both practical and emotional reasons.  From a practical point of view, I always assumed mine would be a tough case to prove since I left my high-paid consulting job voluntarily two years before getting sick in order to take a few years off to spend more time with my family.  As it turns out, that's not actually a big issue, given the rules of the Social Security system.  I had also hoped that I would be able to make enough money writing to make up for at least some of my lost income.  Turns out that's harder than I thought, especially with so little time and energy to devote to a writing career and made even harder with the recent economic downturn.

Emotionally, I was used to being a very strong, independent, self-reliant person, so it's hard for me to admit that I need this kind of help.  I have to admit to also feeling some illogical guilt.  I am fortunate enough to have a spouse with a good job, a very nice home, and few needs unmet.  I hear stories of people with ME/CFS who are completely bedridden, without any family to help support them, who have been turned down for disability.  It makes me feel like what right do I have to ask for help?

But, I know that's an emotional response, not a rational one.  After all, I put money into the Social Security system for all these years.  It's supposed to be available to me if I am unable to earn enough on my own.  There's certainly no question that ME/CFS has disabled me.  Despite my euphoria yesterday over my 36-minute walk, I am still severely limited in what I can do.  In fact, I have been badly crashed since yesterday afternoon (maybe from the walk, maybe from other stuff, maybe from a change in meds on Monday), reminding me that my couch days are far from over.

So, I filled out the many, many forms, listing past jobs, current symptoms, doctors, medications, and blood tests.  At my lawyer's suggestion, I attached a narrative that explains how CFS affects me and what my daily life is like, along with my years' worth of daily symptom tracking and graphs (the lawyer was amazed by my meticulous record-keeping!)  And I'll see what happens.  The extra money would certainly help with our medical expenses, which just keep going up and up each year, maybe even allowing us to finally replace this 30-year old broken couch I'm lying on!  I've heard lots of horror stories about this process.  I don't suppose anyone out there has any success stories to share??

Exercise Envy

I took a walk in the park today.  Wait, that didn't have the dramatic effect I'd intended....

Drumroll, please....

I took a walk in the park today!!  Ta da!

Thank you, thank you all.

As you know, I've been trying to gradually increase my walking each week, a little at a time, with the help of my heart rate monitor and the beta blockers that are helping to decrease my heart rate so I won't crash so easily.  But today felt like a milestone. 

I drive by this park all the time - it's located right next to my son's school - and it has this wonderful paved walking trail all along the edge.  Every single time I drive by, I feel a surge of envy, watching all the people on the walking trail - walking, running, skating.  There are people with strollers, kids, women chatting together in small groups, even elderly people, and I want so much to be among them.  It's not the most beautiful park in our area, but I crave its normalcy, its freedom.

I wrote a couple of years ago about how much I miss exercise, and I still feel that way to some extent.  I still can't let go and experience the pure joy of unfettered movement - running, dancing, etc.  My walks are defined in part by their limits - I very carefully watch my heart rate and the time and constantly monitor my body for any signs that I need to stop.  I walked today for 36 minutes, with an average heart rate of 85 and a maximum heart rate of 98.

But I am hugely grateful that my world has expanded by this little bit. Taking that walk in the park today, alongside the other walkers - like a real person! - felt like a huge victory.  I'll take my victories where I can, since they've been few and far between these last nine years!

Movie Monday 3/14

Hallelujah!  Both boys went to school this morning, for the first time in weeks.  What a glorious feeling to see them go off like normal kids...not to mention having the house to myself for a few hours!  Our "normal" isn't much, but I missed it!

Ken and I even went out for dinner on our own Saturday night, a rare treat!  We also enjoyed some wonderful movies this weekend:

• Friday night, we watched an extraordinary movie, Conviction, based on a true story about a man sentenced to life in prison for murder.  Actually, the movie is more about his sister, Betty Anne (played by Hillary Swank), who - without even a high school degree to start with - put herself through law school so that she could take her brother's case and prove him innocent.  I first heard about this movie when I heard an interview on NPR's Tell Me More with Betty Anne Waters and Hillary Swank.  Ken and I both loved it.  The movie brought me to tears over and over again, and I kept thinking about it all weekend.  Highly recommended.
• For a change of pace Saturday night, we watched a lighter movie, Valentine's Day, directed by Garry Marshall, which features an all-star ensemble cast (including Julia Roberts, Ashton Kutcher, Jennifer Garner, George Lopez, and many more).  It's one of those movies that starts out with a half dozen different plot lines but then the character's lives intersect in unexpected ways.  It's a fun romantic comedy, warm and funny and enjoyable.
• Craig was home sick from school all five days last week - and too sick to do anything most of that time - so I got him a big stack of DVDs from the library.  He watched A Wrinkle in Time (one of our favorite books); The Water Horse which he didn't want to see but admitted was pretty good; The Thief Lord, another favorite book of ours and one of Craig's favorite movies; Open Season 2; and the entire Lord of the Rings series (Craig's version of cinematic comfort food).
• Last night, I bribed the boys with Rita's water ice to watch the pilot episode of an old favorite TV show with me, the original The Incredible Hulk series from the late 70's.  They loved it, as I knew they would, and begged me not to turn it off at bedtime.  We have the entire first season on DVD from the library but probably won't have time to watch it all.

Have you seen any good movies lately?

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

Quote It Saturday 3/12

Happy Weekend!

I successfully made it to the grocery store this morning, with Ken along for help and company, after yesterday's lost day.  Plan B ended up being him bringing home a few things we needed for dinner during his lunch hour yesterday and doing the big shopping trip today.  This time, I remembered to take my beta blockers the minute I woke up, and my day went as planned - I was able to stick to Plan A today!

Today's quote is another from Toni Bernhard's wonderful book, How To Be Sick, which I reviewed at my book blog last year.  I wanted to bring your attention to Toni's book today, in conjunction with her ME/CFS story being posted at the wonderful new website, Invisible Awareness, yesterday.  I have dozens of pages dog-eared in my copy of How To Be Sick, so it was hard to choose a single quote, but I could really relate to this one:

...But even in the confines of the house, it takes tremendous discipline to avoid overexertion.  I'm still working to overcome a lifetime of conditioning that led me to believe that making sure my house looked its best was essential to the quality of life of the family.  Suddenly and unexpectedly, tasks such as keeping windows washed, surfaces dusted, walkways cleared of leaves, became actions that in increased suffering.  Everyday, I have to muster the willpower to stop myself from doing something that now comes under the category of unwise action, and I don't always succeed.  To help me, I keep a haiku of Issa's posted nearby.  It's about nonharming, but I think it also serves as a reminder to let go.


Don't worry, spiders,
I keep house
casually.


          - Toni Bernhard, How To Be Sick

Isn't it ironic that we have to work so hard to rest?  I feel just like Toni does.  In fact, this is exactly what I was fighting with myself over yesterday: I knew grocery shopping was too much given the way I was feeling, but I have to fight a lifetime of conditioning over things that have to be done.  It has taken me 8 years (I didn't understand PEM the first year) to get to a point where I can recognize the necessity of always having a Plan B.  It's hardest when we feel just fine but know that a certain activity will cause a crash later.  Who knew that being sick was such hard work?

Life Without Beta Blockers

Well, if I had any doubts about the positive effects of beta blockers for me, this morning I had a stark reminder.  As I posted earlier this week (Treating ME/CFS with Beta Blockers), I've been able to be more active since I started taking beta blockers - they help to decrease my heart rate and hold my blood pressure steady, diminishing the negative effects of Orthostatic Intolerance.

Well, this morning, I got up with a plan to get groceries.  As is my routine now, I usually sit on the couch with my feet up for an hour or so while I wait for the beta blockers to kick in, before I do anything active.  So, here it is 10 am already, and my heart was still pounding like crazy!  My heart rate monitor shows my heart rate is over 100 just sitting here, and when I got up to grab something from the other room, it jumped up to 115!  I'm thinking, "What the heck is going on today??" 

Then I realize...I forgot to take my beta blockers this morning!  I normally keep them on my bathroom sink and take two as soon as I wake up, but I moved them to the kitchen yesterday to add them to my lunchtime medicine box and forgot to put them back upstairs.

I had hoped to be at the grocery store by now, but instead I am lying on the couch with my heart pounding, feeling crashed.  I hope it's not too late and I didn't already crash myself just from making breakfast and doing the dishes.  So, I am waiting...and hoping.

Meanwhile, Craig is still home sick - his 6th day.  Yesterday morning, after 3 days on antibiotics, he still had a fever of 102 degrees, but we are seeing a small improvement this morning.  This has been a really bad one for him.

Still waiting....

Treating ME/CFS with Beta Blockers

 (NOTE:  I am not a doctor and do not intend to offer medical advice to anyone.  In this post, I am just hoping to share my own experiences with a medication that has helped me.  You should talk to your doctor before trying any treatment yourself to make sure it is appropriate for your own particular circumstances.)

I'm embarrassed by how long I've been promising to write this blog post!  I've only had one day in the  past month when I didn't have at least one kid home sick.  Craig is still in terrible shape, fighting bronchitis and sinus infection; Jamie is back in school but too wiped out afterward to attempt any homework.

Anyway, back to the subject at hand...this post is about treating Orthostatic Intolerance (OI) with beta blockers.  If you aren't sure what OI is or you think you don't have it, you should first go back and read my post on OI and CFS.  Studies show that over 95% of people with ME/CFS have OI, and it causes many of the symptoms we commonly think of as CFS.  Very briefly, OI causes our blood pressure to drop and our pulse rate to go way up when we are upright.  These effects cause us to feel sicker (and some people actually get dizzy or even faint).

So, my story....in early January, I was in bad shape.  The holiday season had really done me in.  Ken had gotten me a heart rate monitor for Christmas (at my request), and I intended to use it to try some short walks, monitoring my heart rate to keep it below my anaerobic threshold to avoid crashes (for more information on how to monitor your heart rate to avoid crashes, check out my past post).  As I explained in that earlier post, I quickly learned that I was constantly over my anaerobic limit (which is 105)!  No wonder I was constantly crashed - just walking up the stairs or showering sent my heart rate soaring.

In the midst of this bad period and new information about how my OI was affecting my life, I was talking to a friend on the phone (she's one of our local CFS moms - her 15-year old daughter has CFS with severe OI - she used to faint multiple times each day!).  So, she told me that their doctor (who is also my doctor) prescribed beta blockers for her daughter and they had helped to bring her heart rate down.  Then, I remembered reading about beta blockers in Dr. Rowe's article on OI (highly recommended reading!), so I made an appointment with my doctor.

Here's what Dr. Rowe says about treating OI with beta blockers:

Type of drug: a beta-blocker
Indications: NMH and POTS
Action: Atenolol blocks the effects of adrenaline (epinephrine), and acts both to decrease the heart rate and to prevent the forceful heart contractions that may help trigger NMH.
Common side effects: Some individuals complain of headaches or fatigue after atenolol, and others have worse lightheadedness or worse symptoms in general. If these problems arise, we usually stop the medication. Like other beta-blocker drugs, atenolol can lead to constriction of the airways in individuals with a history of asthma. If cough or wheezing develops soon after starting the drug, it may need to be stopped. For those with mild asthma, our impression has been that an inhaled steroid (eg, Pulmicort, Flovent) may allow patients to tolerate the beta-blocker without increased airway reactivity. Atenolol can also cause emotional depression. Atenolol is less likely than other beta-blocker drugs (such as propranolol [Inderal]) to lead to nightmares, confusion, and hallucinations. Atenolol and other beta-blocker drugs can interfere with the body’s ability to correct low blood sugar, so the drug must be used with extreme caution (if at all) in diabetics. The activity of the drug can be decreased when it is used in conjunction with non-steroidal anti-inflammatory drugs such as ibuprofen (Motrin). We recommend that beta- blockers be discontinued 2-3 days before surgery because it can interfere with the action of epinephrine if that drug is needed to treat an allergic reaction during surgery.

I asked my doctor about trying beta blockers, and she said, "That's an easy one to say yes to!" (as opposed to some of the more experimental treatments I have asked her about over the years).  She thought very carefully about which beta blocker to prescribe and chose propranolol because it is short-acting and comes in a low dose.  She said that would give me some flexibility; she told me I could take 1 or 2 tablets up to 3 times a day (they are 20 mg each).

After the doctor appointment, Ken and I went to the grocery store - he came with me because my stamina had been so poor.  I wore my heart rate monitor.  My average heart rate was 109 and at one point, it shot up to 133.  I was badly crashed the next day.

On the way home from the grocery store, we stopped at the drugstore to pick up my new prescription.  I took 2 pills in the car.  Within an hour, my heart rate had dropped 30 points!

Before beta blockers, my heart rate was often in the 90's just sitting on the couch with my feet up, and it would spike up to the 100's just standing or walking into my kitchen.  Taking a shower would send my heart rate up to 130 or higher!  Now, on beta blockers, my heart rate is usually in the low 70's when sitting (sometimes even 60's!), and it stays below my anaerobic threshold when I walk up the stairs or shower.

Now I can grocery shop on my own: I've gone every week since then!  On a recent grocery trip almost two hours long, my average heart rate was only 80, and the maximum heart rate was 97 - no crash afterward!

I can take walks now!  Since starting the beta blockers, I have been walking, trying to gradually increase how long I walk.  I can now go all the way around my neighborhood without my heart rate going over my threshold.  We went on a hike at the local nature center last weekend - 45 minutes and no crash the next day!

I went back to tell my doctor the good news, and she was overjoyed!  Really, she's usually pretty low-key, but she was grinning from ear to ear as I told her that I'm able to be more active now.  Most days, I take 2 pills in the morning, another 1 after lunch, and sometimes another at dinner, depending on how I'm feeling and whether I have anything to do later in the day.  On Saturday, for our Mardi Gras party, I took the full 2 pills 3 times a day.

As excited as I am by my progress, I want to emphasize that beta blockers are far from a cure for CFS.  I still need my nap every afternoon, still get wiped out if I overdo (like the party Saturday night), and am still prone to crashes for other reasons (like being exposed to a virus).   And they haven't increased my energy levels.  BUT, I can now do things I couldn't do before without crashing the next day.  Being able to walk again feels like a miracle to me!  And I hope that being able to exercise a little bit will help over the long term by improving my overall physical condition and stamina.

Common side effects of beta blockers are fatigue and dizziness (my doctor and I laughed over that - exactly the symptoms we are trying to treat!), but I think my doctor's strategy of using the low-dose, short-acting variety has worked for me - I haven't experienced any side effects.

I just heard from another local friend who uses the same doctor that she is going to try beta blockers also.  It's another avenue of treatment - something to ask your doctor about.  I hope my experience helps you.

Movie Tuesday 3/8 and Happy Mardi Gras!!

Surprise, surprise...I am starting the week behind again.  Monday morning, I heard Jamie and Ken leave the house on time, heard Craig get in the shower at 7 am, so I thought, "Great!  Back to normal today - everyone at school and work, and I can finally get some work done!"  Then I got dressed and came downstairs to find Craig wrapped in a quilt on the recliner, shivering with fever, coughing, and telling me his chest hurt.  We spent hours yesterday at the pediatrician's office (a 2 hour wait!), getting a chest x-ray, and going to the drugstore.  We finally got back home at 3 pm - waaay past my nap time!  Turns out he has a sinus infection and bronchitis...but no pneumonia, thank goodness.  I was useless the rest of the night.  Craig was in terrible shape today but is starting to perk up a tiny bit, thanks to strong antibiotics.

But today is Mardi Gras Day!  We had a very nice party Saturday night - about 18 adults and 6 kids.  Good food, good conversation, and great company.  Before CFS, our Mardi Gras parties were huge affairs, with 50-60 people!  Ken and I agree it's actually more fun this way, with just some close friends (who all help).  Instead of drinking until 2 am, everyone was gone by 10:30 pm!  If you want to see what a real Mardi Gras parade is, you can check out this live webcam (though I think by this time of day, the major parades might be finished already - there were still some truck parades going by last time I checked!)

And, finally, though it's Tuesday already, here's a quick recap of the movies we saw last week:

• Ken and I watched The Road Friday night, based on the Cormac McCarthy book.  One word: grim.  It's a post-apocalyptic story of a father and son journeying cross country.  This is a bleak world, with no plantlife, no animals, no sunlight, and no hope.  It's well-done and the relationship between the boy and his dad was touching, but if you prefer uplifting movies, this is not for you.
• We watched Hulk with the kids and discovered there were two different movies about the Hulk released recently (the other is The Incredible Hulk).  It was pretty good, though we've seen a glut of superhero movies lately.  This one starred Eric Bana, Jennifer Connelly, and Nick Nolte.  The acting and story were good, though I am partial to the TV show version starring Bill Bixby from the 70's.  In fact, I just got the first season out of the library to show the kids!
• While sick last week, the boys watched a whole slew of movies on DVD and TV: Yes Man (they said it was funny), Ghostbusters 2, and Napoleon Dynamite (they laughed hysterically and repeated quotes from it all week!).  Then Craig went back to school, and Jamie watched Hitman, Shaft (the new version with Samuel L. Jackson), and The Village (he pronounced it creepy but not scary and a little weird).

Have you seen any good movies this week?  Hope you have a good Mardi Gras Day!

P.S. If you're interested in what we're reading this week, check out my Monday post on my book blog.)

Quote It Saturday 3/5

Rough week here - we're just beginning to recuperate today.  Craig had a bad crash (a rare event) but went back to school on Thursday and is now symptom-free again.  Jamie missed all five days of school this week.  This morning, he said he felt about 50% of the way back to his normal state, so for the first time all week, he is able to sit up and attempt a little homework.  I guess I either did too much or am reacting to whatever virus triggered the kids' crashes.  I'm not feeling terrible today, but for the second day in a row, I have some crash symptoms that have been mostly absent for quite a few weeks.  Tonight is a big event for us - our annual Mardi Gras party, pretty much the only social event we host all year - so I'm hoping Jamie and I perk up a bit more.

Instead of posting a quote from a book today, I decided to post quotes from two news articles that appeared in print yesterday.  I think this is a big deal because BOTH the Wall Street Journal AND the New York Times published articles on ME/CFS yesterday when there was really no big news item to react to.  Both articles focus on the complexities and diffculties in diagnosing and treating ME/CFS and both are well-written, balanced, and factually accurate.

Here's a quote from the NYT article, which focused on the differing case definitions:

"In studying the condition, he* and other researchers exclude patients whose only symptom is fatigue, however disabling, and instead rely on a case definition that includes other cognitive, neurological and physiological symptoms. Those symptoms, they believe, indicate a complex immune system disorder possibly caused by a virus or another agent." 

(* Dr. Andreas Kogelnik, an infectious disease specialist in Mountain View, Calif.)

          - "Troubles of Chronic Fatigue Syndrome Start with Defining It" by David Tuller, New York Times

And, here is a quote from the Wall Street Journal article, which focuses on defining ME/CFS with respect to the known cluster outbreaks and also its name:

We gave case studies of patients to the [medical] trainees, described the disease as chronic fatigue syndrome, Florence Nightingale disease or myalgic encephalopathy to different groups, and then asked the trainees about prognosis, illness cause and treatment. Those who were told the condition was called myalgic encephalopathy were much more likely to give the patient a poor prognosis and to attribute the illness to a medical cause.

          - An Illness That's Hard to Live With - Or Define by Dr. Leonard Jason, Wall Street Journal 

This article also includes an absolutely wonderful video about the Lyndonville, NY, outbreak, featuring our own personal hero, Dr. David Bell.  The video brought tears to my eyes - it is very well done.  Jamie was listening while I watched and loved it, too.  You really should click the link above to at least watch the video.

So, this is a big deal, don't you think?  Two of the world's biggest and most well-respected newspapers both tackle ME/CFS on the same day and in an accurate and balanced way.  Change is in the air.

Hope you are enjoying a good weekend.

Nine Years and Counting

Happy Illiversary to me! 

March 2 always brings mixed emotions for me.  It was the day, in 2002, when my life changed dramatically, though of course I didn't realize it at the time.  Here's what I wrote in my journal that day:

The plan was to stay home today, get some stuff done, and have a vacation day in Baltimore tomorrow.  Today went OK, but now I'm feeling rotten with a bad sore throat...?

The next's day's visit to Baltimore was horrible for me, as I pushed myself through the Aquarium, science museum, shopping, and walking.  Seven years later, in March 2009, we went back to Baltimore and I was able to enjoy the trip (with meds, naps, and pacing).

For many years, March 2 was a depressing anniversary for me.  Here's what I wrote in my journal on March 2, 2003:

A whole year of my life.  Maybe it’s appropriate that I’m feeling so horrible – a reminder that it’s not over.  I just want to give in to whatever this is.  I’m so tired of trying to keep going when I don’t feel well.  I feel like just giving up and being sick, staying in bed.  It takes too much energy to live my life and I have no energy left.

I wasn't even diagnosed yet at that point and was living an exhausting, painful life in limbo.

On my 5th illiversary, I blogged about a mixture of depression and hope.  Even last year, at 8 years, I was feeling somewhat low.

So, I am extremely pleased that today, I am feeling very optimistic, at this 9-year anniversary.  Personally, 2011 has been very good so far.  I started a new treatment in January, beta blockers, that has helped me to be more active.  I just came back from a 30-minute walk with my friend!  Yesterday, I started another new treatment, Immunovir, that I hope will help with my immune system dysfunction.  I'm doing better than I have in years.  Yes, I still have CFS and still live a fairly restricted life, but even the smallest improvements make a huge difference in quality of life with ME/CFS.  And in the wider world, research is ongoing into XMRV, anti-viral therapy, and lots of other aspects of CFS.  Even the news media has started to talk about ME/CFS in a serious way.  Things are good, and the future is looking brighter.

Now, if only I could magically cure my kids, than all would be right with the world.

So, Happy Illiversary to Me!

CFS Column in Huffington Post

A friend (Thanks, Martine!) sent me a link to a new column in the Huffington Post written by a columnist "coming out of the closet"with his ME/CFS.  It's an excellent column and it has inspired lots of comments, too.  You can read the column here.

I really intended to finally write a post about my beta blockers today, but I just can't manage it.  Both boys were still home sick today.  Looks like maybe a virus, since Craig has a fever (he actually lost his appetite for a while, which is amazing), though this is 3 weeks in a row for Jamie.  Later this week, I promise!

CFS Blog with Book Discussion?

OK, I can't seem to figure this out on my own, so I guess it's time to make my brain fog public....

I remember reading (I swear, I do!) a few weeks ago on someone's ME/CFS blog (I think) that someone was going to start an online book discussion, and the first book was The Year of Magical Thinking by Joan Didion.

So....I've read the book and would love to discuss it but can't remember whose blog it was!  Anyone??

Movie Monday 2/28

Ah, the last day of February.  I can't believe we made it.  Rainy and 60's here today...spring can't be far behind!

I haven't done a Movie Monday in a couple of weeks because I haven't had time for either movies or blog posts!  Getting back into the routine this week.  We had a nice, quiet weekend at home and enjoyed several good movies:

• Friday night we watched The Dark Knight with the kids.  You might recall we watched the first movie, Batman Begins, a few weeks ago.  The sequel was very good - Craig actually preferred it to the first because there was more action (and less brooding).  Of course, we'd all heard how awesome Heath Ledger was as The Joker, and he didn't disappoint (though I am still partial to Jack Nicholson in that role).  I never thought I'd enjoy so many superhero movies, but there have been some very good ones lately, including this series and Ironman.
• Craig slept over at a friend's house Saturday night, so Jamie, Ken, and I watched The Social Network.  I was so excited to see it available at Redbox!  Jamie was reluctant to watch it at first - not his usual type of thriller or scifi - but we all agreed it was excellent.  Very well-done and a fascinating story, though very sad, as Jamie said.  It's ironic that the guy who turned "friend" into a verb ended up without any real friends.
• Both boys were badly crashed last night - Craig from his sleepover and Jamie from a hike we took - so we relaxed with Despicable Me.  I wasn't all that interested in seeing it at first, but I kept hearing how good it was (including from some of you!), so I gave it a shot.  It was actually very good - funny and unique but also warm, which I didn't expect.  The three little girls stole the show, in my opinion, but I would love to have a team of minions for myself!!  They could do all the work around the house while I rested...how cool would that be!

Have you seen any good movies lately?

Us three are still all in rough shape - me just so-so but Jamie and Craig both badly crashed.  I hope they both perk up for school tomorrow.

If you're interested in what we've been reading this week, check out the Monday post on my book blog.

Quote It Saturday 2/26

Happy Weekend!  It is such a big thrill to have a weekend at home, with no travel and nothing going on.  Ken and I are trying to get caught up on all the things that haven't gotten done lately!

I've been trying to revive my Quote It Saturday routine, featuring quotes from books that somehow spoke to me about my own life, even if they have nothing to do with chronic illness.

Today's quote is from Still Alice, a novel by Lisa Genova about a very accomplished professional woman who works as a professor at Harvard and is suddenly struck by early-onset Alzheimer's.  You can read my review of the novel at my book blog. 

I really enjoyed this novel, though it is heart-breaking at times.  It is ultimately about finding joy even in the most limited life and about the strength of the human spirit.  Interestingly, although Alzheimer's is quite different than CFS in many ways (including the fact that it is always fatal), I related to many, many of Alice's thoughts as she adjusted to her new life of chronic illness.  This passage is one of my favorites and is dedicated to YOU, all of my wonderful online friends.  These were Alice's thoughts after starting an online group for early-onset Alzheimer's patients:

There they were, her new colleagues.  She read their names over and over.  Mary, Cathy, and Dan.  Mary, Cathy, and Dan.  She began to feel the kind of wondrous excitement mixed with barely suppressed dread she'd experienced in the weeks before kindergarten, college, and graduate school.  What did they look like?  Were they still working?  How long had they been living with their diagnoses?  Were their symptoms the same, milder, or worse?  Were they anything like her?"
                   - Still Alice by Lisa Genova

This quote reminds me of the way I felt when I first began discovering other people with CFS online, my new colleagues!  And you've all enriched my life in so many ways.

This is just one of many quotes I liked from Still Alice, so I may quote from the novel again in a future Quote It Saturday.

Hope all of my colleagues are enjoying a restful and joy-filled weekend!

CBS Covers Latest ME/CFS Research on The Early Show

Wow, CBS is just rockin' the ME/CFS media world this week!

First the CBS Evening News with Katie Couric did a spot on the new research showing unique proteins in the spinal fluid of both CFS and chronic Lyme patients.  Some have complained that the piece was too brief, but I was thrilled.  This was network evening news!  One minute, 40 seconds out of their precious one hour show was a huge victory for ME/CFS patients, especially considering the fact that they chose to report on the spinal fluid study and completely ignored last week's misleading CBT/GET study out of the UK.

Now CBS did a spot on this new research on The Early Show...and this time we got 2 minutes, 24 seconds!  You can watch the video here.   This report emphasizes the serious debilitating effects of CFS and how the new research may help provide diagnostic tests and perhaps treatments in the future.  Interestingly, the health reporter doesn't mention Lyme disease at all in this report.

Also the CBS news coverage of this research has helped to fuel coverage on many other major news outlets, including MSNBC (c'mon Today Show, get with it!), Washington Post, Wall Street Journal, Yahoo! News, and Fox News.  It seems to be completely eclipsing any more reporting on the UK PACE trials.

This just in!  Here's a video link to the piece that Fox News did on this study.  This was sort of a strange piece.  Their medical expert did explain that the study differentiated between CFS and chronic Lyme, and he explained why that was important.  He emphasized that CFS was a serious, biological disorder and that he himself has diagnosed patients with it.  But he also said a bunch of stuff about how important it was to be able to tell the difference between depression and CFS, he implied that some people report symptoms they don't actually have, he briefly mentioned exercise as a potential therapy for CFS, and he kept emphasizing that muscle pain and weakness are the critical symptoms in diagnosing CFS.  Huh?  I have very little pain - just all-over flu-like achiness during a crash, but even that isn't really muscles.  He said nothing about post-exertional malaise or signs of immune system dysfunction, like sore throat and swollen glands - two things that I believe are unique to CFS and helpful in telling it apart from other medical problems.  So, it was sort of an odd piece...but they did cover the facts of the new study and emphasized the seriousness of ME/CFS.  The more coverage of this and all other scientific studies, the better!

New Study Identifies Unique Biomarkers in CFS and Lyme

Sick of all the undeserved hoopla from last week's publication of the PACE trials?  A new study was released last night based on hard science with some fascinating results...and wide coverage in the major news outlets.

Researchers tested CFS patients,  chronic Lyme patients, and healthy controls.  They looked at spinal fluid from all three populations and found over 700 unique proteins in the spinal fluid of CFS patients that were not evident in either of the other two groups.  They also found close to 700 different proteins in the spinal fluid of the Lyme patients, again unique only to that group.

This study suggests several significant conclusions:

• Chronic Lyme is a unique condition, different than CFS (the symptoms are similar, so the two have been mistaken for each other in the past).
• CFS does have unique biomarkers that could help to diagnosis it more easily and accurately in the future.
• The identification of these proteins could eventually lead to blood-test biomarkers that could serve as diagnostic tools (it isn't practical or safe to use spinal fluid testing - you can't just go around spinal tapping everyone with chronic fatigue).

The best part?  This study was covered last night on the CBS Evening News with Katie Couric!  Yes, that's right - real science and CFS, covered on a high-profile national news show.  You can watch the video of the segment here - it was brief but accurate.

Rejoice!

Lost and Found

I'd forget my head if it wasn't attached.  That's what my parents used to tell me when I lost mittens on a daily basis when I was a kid.  Turns out I haven't come very far since then.

First, I lost the strap to my heart rate monitor on our trip to Rochester last weekend.  I figured it must have fallen out of the car at one of our stops.  I've been wearing it a lot, so I was lost without it all week, and Ken ordered me a new one ($30).  Then, this past weekend, we were visiting my mom and her husband, Ed.  I got into Ed's car at one point and saw my heart rate monitor strap just sitting on the passenger seat!  I pretty much freaked out and yelled, "Oh, my gosh!!  Where did you find this??"  Ed looked at me kind of weird and said, "Why, what IS it?"  Turns out he found it lying in their driveway...where it must have fallen out of our car last weekend when we stopped at their house for dinner on our way to Rochester.  Now that I have two, it's pretty much guaranteed that I'll never lose it again!

Then, we got home from my mom's on Sunday, and I realized I forgot the power cord for my laptop at their house.  I actually looked at it Sunday morning when I unplugged my laptop and thought, "Wow, I better not forget this - that would be awful!"  And I did.  DUH!  It just arrived in the mail today, so I'm back online and - once again - trying to catch up after a forced period of no internet.

Do you think I will ever learn?  Probably not.

We did have a nice weekend, though Jamie was severely crashed through all of it.  He had two days' off school, thank goodness, and tried going back for a few hours today, but he's still really wiped out.  I think this is at least partly a herx reaction.  We stopped his bartonella medication, Zithromax, a couple of weeks ago in order to switch to a new med, and his symptoms began coming back - the only ones we'd seen any improvement on!  So, I consulted with the Lyme doctor, and we decided to put him back on Zithromax for now...so that means, going through the herx reaction all over again.  The same thing happens to me when I stop taking doxycycline and restart it.  This has been a long, hard week for him, and it seems it's not over yet.

Craig seems to have a little cold.  He managed a huge amount of exertion this weekend - snowboarding and snow tubing - with only a brief crash Sunday evening, so that's good.  I better make dinner now.

Quote It Saturday 2/19

Brrrr...what happened to the balmy 70 degree temperatures yesterday?  We're visiting my mom and her husband in their new home in the Poconos - it's actually located in a ski resort.  Craig is out snowboarding, Gramie and Pop Pop are watching, and my husband Ken is skiing for the first time in 22 years (!!).  I watched for awhile, but it is unbelievably bitter cold out there!  High winds fling bits of ice across your face and cut right through coats and hats and gloves.  I came back to the condo to keep Jamie company.  The poor kid would love to be out in the cold snowboarding with his brother, but he is still badly crashed (since Tuesday evening), so he and I are snuggled under blankets with good books and the gas-flame fireplace.  Ahhh!  Much better.

So, I just thought I'd share a couple of quotes, since it's been so long since I've had any spare time on a Saturday!  I recently wrote a review of a wonderful little memoir, The Sound of a Wild Snail Eating, written by fellow ME/CFS sufferer Elisabeth Tova Bailey, and I wanted to share a couple of passages that highlight her beautiful prose and insightful observations:

When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how.  The search is exhaustive; the answers, elusive.  Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss.


Give the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties.  It was all I could do to get through each moment, and each moment felt like an endless hour, yet days still slipped silently past.  Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.

Isn't this passage amazing, both in its depth of insight and in the loveliness of its prose, its metaphors perfectly capturing meaning ("the mind still runs like a bloodhound")?  I love the part about how time seems to stand still while also flying by when you are too ill to do anything.  She writes of both her illness and her observations of a small snail left at her bedside by a friend.  Here is another passage that spoke to me:

There is a certain depth of illness that is piercing in its isolation; the only rule of existence is uncertainty, and the only movement is that passage of time.  One cannot bear to live through another loss of function, and sometimes friends and family cannot bear to watch.  An unspoken, unbridgeable divide may widen.  Even if you are still who you were, you cannot actually fully be who you are.  Sometimes, the people you know well withdraw, and then even the person you know as yourself begins to change.


There were times when I wished that my viral invader had claimed me completely.  How much better to live an exuberant life and then leave as one exits a party, simply opening a door and stepping out.  Instead, the virus took me to the edge of life and then left me trapped in its pernicious shadow, with symptoms that, barely tolerable one day, became too severe the next, and with the unjustness of unexpected relapses that, overnight, erased years of gradual improvement.
          - Excerpted from The Sound of a Wild Snail Eating by Elisabeth Tova Bailey

I found this slim little volume both entertaining and meaningful and highly recommend it.

Hope you're enjoying the weekend and staying warm!  Time for a game of backgammon with Jamie.

Bristish Study Floods Media with Harmful Advice for ME/CFS

I subscribe to Yahoo! Alerts and my Inbox this morning was flooded with new articles on treating ME/CFS.  Every single one of them refers to the recent British PACE trials which focus on treating ME/CFS with ONLY Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET).  Not a single word about underlying infections, immune system dysfunction, orthostatic intolerance, or post-exertional malaise.




Sorry I don't have time today for a more in-depth discussion of this sad news, but Jamie is still home sick, I'm still worn out and overwhelmed, and I need to spend yet another Friday packing up for a weekend trip (this time to my mom's house).  I hope to get back to a more "normal" routine next week.  Meanwhile, here's a quick paste of some of the article summaries - prepare yourself - it's depressing!  Some of these headlines alone will be quite damaging:


Pushing limits can help chronic fatigue patients
ABS-CBNNEWS.com Thu, 17 Feb 2011 17:26 PM PST
LONDON - Helping chronic fatigue syndrome patients to push their limits and try to overcome the condition produces a better rate of recovery than getting them to accept the illness and adapt to a limited life, new research has found.

Study questions chronic fatigue treatment methods
The Washington Times Thu, 17 Feb 2011 17:21 PM PST
LONDON (AP) - The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups _ taking it easy is not the best treatment, exercise and behavior therapy are. For years, patient groups warned such treatments could be dangerous, instead promoting a strategy known as adaptive ...

Got ME? Just get out and exercise, say scientists
Independent Thu, 17 Feb 2011 17:12 PM PST
The UK's largest study of treatments for chronic fatigue syndrome has provided the first definitive evidence of what helps those who suffer from the disabling condition that affects 250,000 people in the UK.

Exercise best cure for fatigue
Stuff Thu, 17 Feb 2011 17:09 PM PST
The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups - taking it easy is not the best treatment, exercise and behavior therapy are.

Behaviour and exercise therapy best for treating chronic fatigue syndrome: study
Brandon Sun Thu, 17 Feb 2011 17:05 PM PST
LONDON - The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups — taking it easy is not the best treatment, exercise and behaviour therapy are.

CBT and GET can safely be added to SMC to moderately improve outcomes for chronic fatigue syndrome, but APT is not an ...
Lancet Thu, 17 Feb 2011 16:16 PM PST
Trial findings show cognitive behaviour therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome, but patients' organisations have reported that these treatments can be harmful and favour pacing and specialist health care.

Therapy, Exercise Help Chronic Fatigue Syndrome
WebMD Thu, 17 Feb 2011 16:11 PM PST
Cognitive behavioral therapy and exercise, in conjunction with medical care, are safe and effective ways to treat some of the symptoms of chronic fatigue syndrome (CFS), finds a new study published online in the Lancet.

Study supports use of 2 controversial treatments for chronic fatigue
CNN Thu, 17 Feb 2011 16:09 PM PST
British researchers reported Friday that two controversial treatments for chronic fatigue syndrome appear to be more effective than a third, more commonly accepted treatment, and none of them appears to be linked to major safety problems.

Toni Bernhard on NPR

I just realized today that, during that week my computer was broken a couple of weeks ago, I missed the airing of fellow CFS patient Toni Bernhard's commentary on NPR's Morning Edition.

Toni is the author of the fabulous book, "How To Be Sick," which I highly recommend for anyone dealing with chronic illness (it is actually appropriate for anyone dealing with any sort of challenges in life).  You can read my review at my book blog.

Toni did a wonderful job with the NPR commentary - you can listen to it online if you missed it, like I did.  For more information, visit Toni's How To Be Sick website.

Too Pooped to Post

Just wanted to write a quick note to explain my absence lately.  We spent the weekend driving back and forth to my hometown of Rochester, NY, for a family funeral.  Traffic and a closed road Friday afternoon led to a 10-hour drive to get there, arriving at my dad's house at 11 pm, then a very long day Saturday with the funeral home, church service, cemetery service, and family meal, followed by an 8-hour trip home on Sunday.

As you can imagine, I was pretty wiped out Monday morning...but I still had to go out to get some groceries and a new phone (ours broke Friday).  Today was a two-hour initial meeting with a disability lawyer, which was the last straw.  I'm pooped - achy and sore throaty and out of energy.

I really intended to write about my newest treatment (using beta-blockers to help control OI), but I just can't put cohesive thoughts together to explain anything medical right now.  Maybe tomorrow.  Looks like take-out for dinner tonight.

Movie Tuesday 2/8

Oh, shoot...I missed Movie Monday again!  Busy, busy, busy lately.  Ken and I had a meeting with our financial advisor yesterday (college is coming up fast!), right about the time of day I usually reserve for blogging.

Crazy busy weekend, too.  Jamie had a bit of a medical scare last week (he's fine now) that threatened to derail his planned class trip.  Thankfully, he got the OK to travel Thursday and spent Friday and Saturday touring Washington, DC, with his American History class. He had a great time and didn't even crash afterward!  Meanwhile, Craig had an all-day Academic Bowl Saturday - the three of us were at the high school from 9 am until 5 pm!  Craig and his team did a great job, but that was a very long day for me.  I actually skipped my nap - which I never do - so by 3 pm, I was wiped out.  I ended up lying on the floor in the hallway for a while!  Whatever it takes, right?  Interestingly, during that marathon day, I discovered that the mother of one of Craig's best friends has fibromyalgia.  Small world, right?

Then, of course, Sunday night was the Superbowl - we had a little family party here, just us, plus the last-minute addition of two of the boys' friends.  So, amid all that activity, we did find a few quiet hours to relax with some good movies:

• Last week, in need of a quiet evening, we watched Eagle Eye with the kids.  Shia LeBeouf stars in this exciting, fast-paced thriller.  He and a woman who is a stranger to him get pulled into a strange, dangerous series of events.  Through some odd forms of coercion, they are both manipulated into some illegal actions.  They receive their instructions in strange ways and have no idea who is controlling things or what the purpose is.  It's a unique thriller with lots of unexpected twists and turns.  We all enjoyed it.
• With Jamie away, Craig chose Shrek Forever After, supposedly the final Shrek movie!  It was just as fun and clever as all the earlier Shrek movies.  The clever puns and references and twisted fairy tales are the best part of this series.  For instance, I loved when a baker frosted Gingerbread Man's legs, and he shouted gleefully, "I've always wanted to wear chaps!"
• After Craig's all-day quiz show and Jamie's 2-day trip, we were all exhausted Saturday night, so we hunkered down into the family room and watched Batman Begins.  Although there've been a glut of superhero movies lately, this was very good - an excellent interpretation of the Batman story, with some REALLY cool high-tech gadgets (the Batmobile was especially awesome).

Ken and I were too tired to stay up late for movies this weekend, but we did watch some episodes of Mad Men on DVD, and last night shared the Superbowl episode of Glee with the kids - the first time they've seen this incredible show!

Have you seen any good movies lately?

Heart Rate and Post-Exertional Crashes in ME/CFS

My treasured heart rate monitor tells me when I've gone past my limits

 

(Updated in 2023)

I want to explain what I've learned in the last couple of months about how monitoring heart rate can help someone with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to avoid post-exertional malaise (PEM), more commonly known as crashes.  At the end of last year, I posted a link to an excellent article called "Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope," which explains how monitoring your pulse rate can help you to stay within your limits and avoid the crashes we are all so familiar with.  It's an excellent article - I highly recommend you read it - but I wanted to also tell you some of what I've learned from my own experiences recently. You can also read my own recently (August 2019) published article, Using a Heart Rate Monitor to Prevent Post-Exertional malaise in ME/CFS, on the ProHealth website.

I have no medical background (even though my family calls me Dr. Sue, Medicine Woman now!), so I will try to keep this simple, as I understand it, without too much medical jargon.

Why Do We Crash After Exertion?
We all know that one of the biggest and worst parts of ME/CFS is the exercise intolerance, also known as post-exertional malaise.  When we do too much, we feel terrible the next day (and often the day after that, and so on).  And "doing too much" for someone with ME/CFS could mean taking a shower or fixing lunch or taking a 10-minute walk.  If you want to know more about post-exertional malaise, I recommend Jennie Spotila's excellent series of articles on PEM.

One of the major reasons WHY (there are several) we feel so bad after exertion is because our cells don't handle oxygen the way they're supposed to, a condition known as oxidative stress.  When normal, healthy people exercise, their heart rates gradually increase (which is good for them!), in a process called aerobic exercise.  During this process, the cells are using oxygen in the energy-creating metabolic process within the mitochondria (kind of like tiny energy engines in our cells).  If a healthy person exercises for a long time and/or at high intensity, their cells switch to anaerobic metabolism.

People with ME/CFS have an extremely low anaerobic threshold because our cells don't handle oxygen appropriately, so that our bodies switch to anaerobic metabolism with very little exertion.  So, the effect of a short walk in someone with ME/CFS can be similar to the effects of a healthy person running a marathon.

You can estimate your anaerobic threshold (AT) using this formula:

(220 - your age) * 0.6 = anaerobic threshold or AT, in beats per minute

(that is, 60% of your maximum heart rate)

See my recent article for more detailed formulas, with more options for women and for those more severely ill.

I'm 45, so my anaerobic threshold is 105 beats per minute (note, that was in 2011 when I first wrote this post. As I am updating it here in 2019 at age 54, my AT is now estimated at 100 bpm, though in reality, it is higher than that - see below).

Note that this formula only provides an estimate of AT. The most accurate way to find out what yours is is to take part in a 2-day exercise test specifically designed for ME/CFS (a 2-day CPET test), but most of us don't have that opportunity. You can use the formula as an estimate and then test it out for yourself.

How Does OI Affect Post-Exertional Crashes?
Another significant factor in post-exertional crashes is Orthostatic Intolerance (OI), a condition that affects more than 97% of patients with ME/CFS (and many of those with fibromyalgia and Lyme, too).  OI is basically an inability to maintain a steady heart rate (HR) and/or blood pressure (BP) while upright, and it is behind many of the symptoms we experience as ME/CFS, even if you don't realize it (check out this past post on OI for more information).

Typically in ME/CFS (though not always), OI causes our heart rate to increase and our blood pressure to decrease, often substantially, when we are upright, either sitting or standing (though there are some rare cases in ME/CFS where the BP increases when upright or in some cases BP and HR jump around - those are still OI).  So, while a healthy 45-year old would probably not hit 105 beats per minute until she'd been exercising for a while, I can hit 105 just standing up.  The result is that even minor exertion can put someone with ME/CFS over their anaerobic threshold.

Tracking Heart Rate
So, monitoring or keeping track of your heart rate can give you a solid, quantifiable way to know when you've passed your limits and are in danger of experiencing post-exertional malaise (i.e. a crash).  You can check your pulse rate simply by touching your wrist or neck and counting the beats, but I highly recommend using a heart rate monitor.

I asked for and got a heart rate monitor for Christmas (thanks, honey!), and wearing it during my normal daily life has been enlightening.  I planned to wear it when I took a walk or went shopping or something else exerting, so I could tell when I had done too much.  On my first day, I decided to take a walk in our neighborhood, so I strapped it on, after calculating my anaerobic threshold (105).  I was shocked to see that my heart rate just standing in the kitchen was already over 100!  I bent down to tie my shoes, and my heart rate jumped up to 115!!  And I hadn't even left the house yet.

I did take a 15-minute walk that day, as slowly and carefully as I could, but my average heart rate was 103 and the maximum (after I had my shoes on) was 110.

Over the course of the next week, I wore the heart rate monitor almost all the time during the day and watched it constantly (some might say obsessively).  I found that it provided hard data to back up what I already knew about OI (I love data!). 

Even lying down (what's known as resting heart rate), my heart rate rarely went below 90.  Sitting on the couch with my feet up, it was often in the 90's or near 100.  Standing up to make a cup of tea could drive it over 100.  Taking a shower or putting in a load of laundry could spike it up to 130 or higher!  One day in the library, I noticed it was close to 100 just walking around slowly, but when I crouched down to see something on a low shelf, it dropped to 75-80.  I knew from Dr. Rowe's article on OI that crouching helped, but it was illuminating to see that for myself.  I also noticed that it varied from day to day, depending on how I felt. Research bears this out - your AT is even lower and your HR even higher when you feel worse.

On a grocery shopping trip, I discovered - much to my surprise - that the part of shopping that drove my heart rate highest was carrying the groceries into the house.  This was much more exerting to me than pushing the cart or walking around the store.

It was fascinating for me to see that my quietest day could easily put me over my anaerobic threshold fairly often.  No wonder I rarely felt good - I was in a constant cycle of post-exertional crashes without even "doing" anything!  I really had no idea that was happening.

Try it for yourself - monitor your heart rate for a few days.  Find out where your own anaerobic threshold is and how much exertion it takes to put you over it.  Experiment!  Try various normal daily activities and see which ones are within your limits and which push you beyond them.  Figure out how some simple changes can keep you from going past your threshold - maybe dividing tasks up into parts or resting in the middle or delegating certain things.

Choosing a Heart Rate Monitor (updated)
Although there are now many different kinds of wearable devices that can measure your heart rate, there are a couple of things to look for that you'll need specifically for ME/CFS: 

• You want a heart rate monitor that continuously monitors your heart rate, giving a constant read-out. The kinds of devices that require you to push a button to check your heart rate aren't adequate for us. 
• A large read-out that you can easily see is best. 
• You also want to make sure that you can set audible alarms for heart rate that are custom to you. Some devices may just calculate your limits based on your age, but with ME/CFS, we are using it differently than that. You will set your upper limit to whatever your anaerobic threshold (AT) is, according to the formula above, and you want an audible alarm to inform you immediately if you hit that limit. 
• All models now can link to a smart phone or computer, so you can see your data.

I have been very happy with my Mio Alpha heart rate monitor; however, they are no longer available (sometimes you can find one at that link by clicking on "available from other sellers"). There are, of course, now plenty of fitness trackers available, like Fitbit, that measure heart rate, though I find their HR read-outs quite small and hard to see while you are moving around, and they are designed for athletes and active people, with different settings for different sports and activities. They do, however, have additional features like sleep tracking.

Another option are the type with a chest strap, mostly made by Polar. Some people swear by these. I wore one for several years (and went through several chest straps) and found it was uncomfortable, inconvenient, and not all that accurate. Mine would cut out at random times and the newer ones required contact gel to perform even adequately. Some of my issues may have been simply because I'm a woman--I'm sure it's much easier to put a chest strap on in public when you're a man!

When I polled people with ME/CFS in several online support groups about what kind of heart rate monitor they used, many said that they loved their smart watches and they could do all that we need them to. Of course, Apple Watch started the smart watch thing, but now there are plenty of other options, too, like the Samsung Galaxy. I started using an Apple Watch in summer of 2023, and I have found it has some specific pros and cons for our use. The biggest downside is that you cannot set an upper limit alarm, so I added an app called Beat Watcher ($10), which does allow me to set an upper limit alarm but doesn't work with Apple's other built-in fitness apps (which tell me how long I was active, my highest HR during that period, heart rate variability, etc.). In this short video, I discuss the pros and cons of Apple Watch versus my old-school heart rate monitor.

I recently bought a fitness tracker to use as a heart rate monitor for my son (and his medical team wanted him to track his sleep, too). I looked at all of these options. At the time, smart watch prices looked very high, though they seem to be coming down. I also saw a bunch of very cheap trackers being sold as "smart watches," but I was unsure if they had all the features I list above. I finally settled on a Garmin Vivosmart 4. I read through its features carefully and also called Garmin tech support to make sure that you could set it to show HR continuously and could set your own upper limit for HR (yes to both). And it's only $99. That was three years ago, and I don't think he ever even took it out of the box, so I can't report on how it works, but I have heard others with ME/CFS like this brand/model.

Treating OI to Improve Stamina
For me, the monitoring only did so much - I was still over my limit during most daily tasks and could not manage even a short walk without crashing afterward. Then, I tried a new treatment that turned out to be life-changing for me! I now take beta blockers for my OI. Beta blockers block certain hormones in the body to bring heart rate down to more normal levels. As with everything else in ME/CFS, a lower dose is best for us, and it only takes a little bit to be effective (and too much beta blocker actually increases fatigue). Once I found the right beta blocker (there are several dozen to try) and the right dose for me (see tips in that link), my life was transformed. I could go grocery shopping, take walks, and get through normal daily activities, all without going over my limits and crashing. I still use my heart rate monitor, but now I only need it when I am doing something especially exerting, like walking or hiking. I am able to stay below my AT in my normal daily life and even cook again!

I have also found, as noted above, that my AT has actually increased, even though I am getting older, because I am now able to be more active and improve my fitness (all while staying below my limits). This has been born out in research, as explained in my recent ProHealth article: staying below your limits and preventing PEM (crashes) allows you to begin to improve your fitness level, which will gradually increase your AT...allowing you to do even more! It's a positive domino effect that I have seen work in real life.

Once you've determined where your limits are, you can try to stay within them as much as possible.  This should result in feeling better, and then you can try to very slowly and gradually do a bit more. This is NOT the dreaded Graded Exercise Therapy (GET), which can worsen your condition, but using science and quantifiable measurements to stay below your limits and prevent crashing. Treating Orthostatic Intolerance can help you to become even more active and further reduce post-exertional crashes. Good luck!  Let me know about your own experiences in monitoring heart rate. And if you want to dig more in-depth into this topic or chat with others with ME/CFS using heart rate monitors, join the Facebook Group ME/CFS - Pacing with a Heart Monitor.

UPDATE AS OF 8/21/19: Seven years after starting beta blockers - and with the help of my heart rate monitor - I have been able to greatly increase my physical stamina. I can now manage up to two hours of walking/hiking at a time (wearing my heart rate monitor and staying below my AT, of course!), without crashing afterward. I love the outdoors, and I have been gradually increasing the lengths of hikes I can manage - I did 1.5 miles on hilly terrain last summer! I have also started slowly doing some weight training - mostly on my back to keep my heart rate low and in the morning when my beta blockers are working best. I can now work out with weights for about 20-30 minutes most mornings and have increased my muscle tone substantially (which further improves OI). I rarely crash from over-exertion anymore, which has been life-changing for me. None of this would have been possible without first treating OI and using my heart rate monitor to stay within my limits.

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Movie Monday 1/31

Well, I think my nightmare computer week is over, thank goodness.  That fourth trip to The Apple Store seems to have done the trick.  I didn't have time to catch up today, though, because Jamie and I had to make our trip to NJ to see our Lyme doctor.  Thank goodness he drives the whole way now - I was really worn out today.  The kids had an easy time convincing me to dump my dinner plans and get take-out burgers and fries tonight!

After days filled with stressful computer problems and snow days, we spent our evenings escaping reality with some movies this weekend:

• We watched Red this weekend with the kids.  Craig saw it in the theater with a friend a few months ago and was really excited to share it with the rest of us!  It's a funny and fast-paced thriller about a group of retired CIA agents, played an all-star cast of Bruce Willis, Morgan Freeman, John Malkovich, and Helen Mirren (a very different role for her!).  They discover someone is trying to kill them and leave retirement behind to investigate.  Lots of fun.
• Craig went bowling with friends Saturday night, so Ken, Jamie and I watched Cloverfield, a unique and scary thriller.  It starts with a group of friends in NYC at a going-away party for one guy, when some freaky things start happening.  Soon, they are on the run from some horrifying creatures while the city is falling apart around them.  The hitch is that the whole movie is filmed from the perspective of a handheld video camera by one of the party-goers.  It made for a very frantic, you-are-there feel (though Ken said it made him sick!)
• Last night, Ken and I watched Crazy Heart, with Jeff Bridges and Maggie Gyllenhaal (one of my favorite actresses).  Bridges plays Bad Blake, a once-famous country singer who is now playing bowling alleys in small towns while his former back-up singer has made it big.  He's in bad shape - constantly drunk, chain-smoking, and sleeping with random fans in every town - when he meets Jean, played by Gyllenhaal, who interviews him and shows him there may be something better out there.  It was very good - I can see why it made lots of top 10 lists for 2009.
• In between, Ken and I finally finished the last season of Saving Grace on DVD.  What a spectacular show!  The finale was a real tear-jerker, though.  We also watched a few more episodes from season 2 of Mad Men - do any of those characters have an ounce of self-control??

Have you seen any good movies lately?

(If you are also interested in what books we've been reading this week, check out my Monday post on my book blog.)