Tuesday, July 24, 2012

Joy Gift

Addendum...after writing the Golden Girl post I am now wondering if I am channeling Bea Arthur - or Betty White when wearing this robe...

Thanks MP for the Fancy Robe - It reminds me of when I was little and you would take me to pick out a birthday outfit and I picked out the lavender two piece sweat-shirt material top and skirt with embroidered hearts on the base of the skirt  and the sleeves- and the fancy feathered slippers!  This was mid crash - I didn't want it to share the same page as the Live Loud Post.  But its the after shock I hadn't anticipated I would be dealing with later in the day.  I wanted this post after Live Loud - but can't figure out how to move it. 

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

I took this from another blog I recently found and her description of the beginnings of this illness brought me odd comfort today...because someone understands...here is the link - check it out..."My World" and though it is her world - it is the shared experience of dealing with and conquering this illness that makes it our world.


Fancy Robe Lifts Spirits

Hope Challenged 

Live Loud

One wrong move and it all comes tumbling down.  I don't know why with this illness it takes so long to believe you are really sick.  For me, if I am honest that is probably where I pull my hope from - if I don't really have CFS/ME, if I only kind of have it, then there is hope I don't have it at all and tonight when I close my eyes and drift towards dreams I will wake up with a new reality.  I know why part of this is true, when doctor after doctor, the "authorities" almost like a reverse Stolkhom Syndrome tell you - you can't be because, its hard not to believe them.  You can't be hyperthyroid because your TSH isn't off.  You can't have chronic fatigue because you have a few good days in between.  Maybe believing their lies was easier than owning my truth.  I am sick.  And on days like today when circumstances caused a slight alteration in the schedule, which meant you got over hungry and by the time you got home you are trying to take in calories and sugar like someone who has been on a deserted island - that after you are fed, it doesn't matter - you lost.

People always think you are anxious or over reactive or cautious, you live your day to day life on the brinks of fight or flight - because when you aren't prepared - when you didn't bring a sandwich to the chiropractor and you were already emotionally spent putting out energy so your Birthday Girl niece won't know you feel a bit shaky - that delay, that unpreparedness your body takes that moment and like a system that short-circuited you start to fall.

Half of bagel and ham sandwich, water and juice, a cookie, baked chicken, some pasta, your brain is spinning you can't keep a coherent thought...you are spinning downward and trying to claw your way out but its too late.  You pushed your system when it couldn't be pushed and now you must wait it out...wait to find its way back..You sit first on the sofa, then realize you must lie down still perfectly still.  Your entire body feels like it is mildly shaking, its been shocked - you pushed it too far on the wrong day - Your mind and your body are at war.  Two hours on the sofa - the blur of the nightly news, Wheel of Fortune, some lame sit-com, another lame sit-com - it doesn't matter you aren't watching you are watching through it - gazing not taking it in - just hoping this will pass.

Re-boot.  You have the chills now, your ever present hot body is cold, warm shower - maybe that will help mentally re-boot.  You are thankful now that a shower is possible - You are thankful now your back pain is a minor ache - You are thankful that this week three aquaintances have told you out of the blue that you look better than you have, one used the word Hollywood (oh its called the mono-chromatic look - beige jeans, crisp white tee, beige sunglasses - works wonders!) and you think - if you could see me now.

While I was in the shower, it came to me - Live Loud.  That's what I miss - I have never been a loud person - boisterous etc..but I had loud dreams and loud hopes and loud loves and loud gatherings with loud laughs and loud music and loud fun.  I ache for my careful being to not have to be careful - to push my limits again, even at best that meant traveling somewhere alone - or hiking when I don't like to hike - but it was MY decision - and I could fight through anxiety - but this - this you can't fight it - I began thinking of the Photographer Tyler Shields - and yearning for the wild abandon of those that are blessed with the ability to push themselves and get results.  The need for danger was never in my DNA but this illness has forced the everyday to often become a mine field to walk carefully through.

So I got out of the shower and did the only thing that spoke to me to grab some control - instead of the gray sweatshirt I had - I grabbed the bright robe my aunt gave me as a "joy" gift and put some bright lipstick on - its about as LOUD as I can get.  I tried to slowly eat, but the level of fatigue made it so I had to spit out my cereal twice because my natural autonomic process of swallowing didn't want to work - I sipped juice ever so slowly - I tried a ham sandwich - couldn't do that.  I was staring at food that my body wanted to devour and yet reject simultaneously.  And at that moment, as I took in this day, the simple mishap that made my body follow no rules - thinking about those 126 beats my heart needed to do such a simple task as stand at the end of my driveway and talk to a neighbor - I thought hard about the past 6 plus years and all that I have given up - and the magnitude of this illness - the magnitude that I have tried to deny began to crush my hope.

I will begin again tomorrow - and I will try every day to do my best to Live Loud the way I had dreamed, the dream may just need a bit of tweaking.  As these past few days as the nation and world have listened to the stories of the loved ones lost or nearly lost in the masacere in Aurora, Colorado you are reminded of what really makes someone's life - its the magical memories we tuck inside our hearts - its the memory that someone may not even know you are taking - but the moment that made them feel loved, the moment that made them feel joy, the moment that brought happiness and you realize, adjusting my dreams to the simple things may be the best gift I could ever have been given.

So today, I will never forget the nervous anticipation as my niece finally hit the much talked about 4th birthday.  And the hug she gave me and nervous blush as she was so excited to play doctor with her new lab coat and instruments that she needed some privacy - the purity of her being fills you up.  Her gorgeous innocence and compassionate beauty as she told my parents she always wanted a toy pony.  Her health - I am so grateful for her health - And I have the photos to remind me that in that moment I was blessed to feel really quite good - and the crash - well it happened after and that's all that matters to me - it happened after.

Make no mistake - I hate this illness but I am getting better at not hating myself for the position it has put me in - I hate the uncertainty - the broken dreams - the confusion of what next - I hate that I can't do normal things to make my body strong - And days like today when the Joy is so high and the Sorrow so deep you feel that you can't tolerate it for one more minute - you stop and you breathe and you hold the memory of the Joy and let it win.

The Birthday Girl


Joy Wins

Sunday, July 22, 2012

beating faster

so a quick update - confirmation that mornings are tough - anything besides sitting or lying down gives me a heart rate of 100 - 115.  Brushing teeth - walking to kitchen - making coffee- yeah probably should re-think the coffee...in case anyone is wondering...no i don't smoke - never have.

Saturday, July 21, 2012

beating heart

After talking about it, thinking about, procrastinating it, it finally happened - I got a heart rate monitor.  Okay, so my boyfriend did all the leg work - aka Amazon.com work and ordered it - read how to use it - details, details, let's not get lost in the details - And despite knowing how I feel - and as I have said before getting the "maybe you'd feel better if you did a bit of exercise" speech in many contorted fashions - well folks - guess what - apparently I am exercising 24/7.  Yep, that's right - being 40 years old and using the equation of 220 - 40 = 180 - 180 is my maximum heart rate for exercising.  Then you take 60% of that maximum to arrive at the anaerobic threshold, the average percentage for most that you begin to exert oxygen deprivation (normally in a good way) for exercise purposes - aka your working.  So, that number is 180 x .6 = 108.  Are you still with me??? So, this is just a rough estimate, using these calculations, the suggestion is for us CFS'ers - aka NK cell dysfunction disorder aka ME aka Neuro-Endocrine Immune Disorder - aka - I look fine but feel like crap most of the 24 hours out of the day - is to stay below the 60% thresholed.

So, let the fun begin - let "the wild rumpis start" its experiment time.  So, its about 1pm I am back in bed, (but I had a great day yesterday - will post about that later) - so we put the chest strap on, watch in place and as I got up from lying down (heart rate moving between 65 - 79) we did the clean the kitchen experiment.  A task that has brought much debate in my household, and has brought confusion when I explain I can empty the top part of the dishwasher - but don't feel well when I do the bottom rack - or I can make dinner OR clean up - but not both back to back....walking to the kitchen (HR 80-90), emptying top rack (85-95), emptying bottom rack (fluctuating between 85 -99), washing pots and pans (never below 100 - maximum 112).  Okay kitchen done - and I have had a constant 27 point fluctuation in my heart rate.)  Alright - need a rest - back on chair, feet up heart rate goes between 72 - 85.  Alright - let's try laundry...unloading dryer, folding and placing in laundry basket - range 85 -102...okay we are seeing a pattern here - daily tasks - not only cause and increase in my heart rate, but also have many fluctuations ranging 20 beats for the same task.  Okay, rest again - get up to get some juice and water - lift arm to get glass, open refrigerator door - we are climbing we are climbing - Houston we have reached 100 again.

Alright I begin to think - perhaps despite being 40 years old, with extremely LOW blood pressure, LOW cholesterol, not overweight - perhaps because I don't exercise I am hitting these numbers.  So I decide to take my dog for a short walk - to the top of the mild incline four houses down....my heart rate reaches 140.  Not only does it hit 140 it bounces like a Mexican Jelly Bean all over the board - 14 0 - rest drop 110 - stand to long in one place back up to 130...you get the picture.  And to clarify "walk" is a strong word for what I was doing...more of a leisurely stroll- with multiple stops for Sophie to sniff...and it was a bit on the warm and muggy side - another thing I learned is not good for Orthsotatic Intolerance...Once again - Houston we have a problem...

But within this problem once again the constant questioning of am I not pushing hard enough - maybe I'm just a bit down - maybe if I did more....maybe if I ignored the symptoms they would just go away - a heart rate monitor is a powerful tool - to see numbers replicating how you are feeling - and the next time someone says maybe I should try more exercise - I can confidently say - that currently - day to day life is doing wonders on my beating heart.

Saturday, July 14, 2012

what a difference...

a day makes...waiting it out is always difficult but then the clouds break open and something gives - and you feel like yourself again.  What I do...didn't get out of bed yesterday, embarrassingly watched all five DVR episodes of the new Dallas this morning - did you see it Grandma? JR Lives!  My grandparents were die hard Dallas fans, I never watched it, but when I saw on the 4th they had the new season as a marathon thought it was a good idea for the back pocket for days like yesterday and this morning.  Well enough to watch something stupid, still not feeling up to reading or writing.  But at 6pm after a good dinner I felt like a new person and being a CFS'er didn't' want to take it for granted.  So I picked up the phone, to see if my friends wanted to meet me at the pool and had an hour and half of that old sweetness.  Not too humid, sun setting, dip in the pool - ahh what a difference a day can make.

Friday, July 13, 2012

why blog...when someone blogged it already!

what a weird coincidence - my struggle today was front and center when i opened my computer at 2am this morning when i saw sue jackson's post...today was a bad day - besides eating i never left my bed.  One of those days that the tv hurts your head - a book is too daunting - talking on the phone exhausting - everything is a struggle.  I feel like a UPS box that has been shipped, dropped and misplaced traveling all over the country never finding its destination -  the large words FRAGILE and now DAMAGED stamped all over it.  Any minute, any hour, okay - maybe tomorrow it will pass - the feeling like the flu is just about to come on...I had a good day yesterday, went shopping and getting a pedicure with my cousin's wife whom i don't really ever spend much time with, they have never lived in the same state.  So, it was nice to spend quality time rather than the normal group setting situation we normally spend together.  The day before I the second time was a charm and I was able to spend a few minutes in the pool with Addison and my sister - but everything this week has been a fight to the finish - I participated a lot but now today I am physically and emotionally spent - feeling FrAGILE and DAMAGED -
thanks Sue - I am re-posting - again, like I said to Sue, days like today I don't' understand it myself and I am living it - so I understand the difficulty to make the leap to see a 'healthy" looking person in front of you and realize that while they are talking to you their head may be spinning , feel a bit tired if they are standing up, and sometimes you just don't want to believe - you want to blame "depressed" "anxious" "over reacting" etc etc etc but I ask you to look at the person you know and love and remember their life "before" and then think...is there any reason in the world that this person that loved to go out to eat, socialize like a butterfly, constantly seek out education, volunteer, had a full and happy life...would this person really spend all day in bed? No my friend they wouldn't unless they were too sick to get out.

Sue Jackson Blog..check it out

Helping Family Understand ME/CFS

A friend e-mailed me earlier this week about how she was both looking forward to and dreading a vacation with extended family. She said her family just didn’t understand how disabled she was by CFS.  This got me thinking about my own early difficulties with my family, so I thought I’d share some of those experiences as well as some insights that I’ve gained after 10 years of illness.  I know now that many of those early problems were based in good intentions and misunderstandings.

Like my friend and most people with ME/CFS, I felt as though my family didn’t understand what I was going through in those early years.  In fact, throughout those early years – the first undiagnosed one and the ones that followed it – I mostly felt utterly abandoned by my extended family.  Not only did they not understand how disabled I was, but it also seemed like they were intent on ignoring my illness all together!  I was stunned – and hurt – when we got together with my family, and everyone acted like everything was just fine.  Couldn’t they see how sick I was and how dramatically my life had changed?  Did they not believe me?  And when we weren’t together (none of my family lives nearby), it seemed that they had completely forgotten about me – no phone calls, no letter or cards, not even an e-mail to ask how I was doing.  I was deeply, deeply hurt.

I hit bottom, both emotionally and physically, during a family vacation in the Adirondacks.  My husband, Ken, and I knew it was going to be too much for me, but we let ourselves get talked into it. The trip turned out even worse than we’d anticipated.  The exertion and stress sent me into the worst crash I’d ever experienced (before or since), I had to spend most of my week closed up in my bedroom, and my family seemed (to me) to just ignore my suffering and pretend everything was OK.

That was the final straw for me.  I couldn’t believe that my family could be so cold and uncaring.  We’d always had a close, loving family, and I was stunned that they weren’t there for me when I needed them most.  How could they just abandon me like that?

Later, in hindsight and after much thought, I realized that I misinterpreted their actions.  It wasn’t that they had stopped loving me; in fact, it was just the opposite.  The all loved me so much that they just could not accept that I could possibly be that sick.  They were all in deep denial about my illness, trying to convince themselves that my illness was not serious and that nothing had changed.  In addition, they misinterpreted the way I acted when severely ill as depression and believed that what was best for me was to help me “get my mind off” my illness by not focusing on it. Once I understood this, I could begin to forgive them, though it was a slow, gradual process.

Today, things are much better between me and my family.  Most of them now do understand that I have CFS, that it is a serious illness, and that it is not going away.  Though some of them still feel a bit uncomfortable with the fact that I am chronically ill, they do their best to be kind and supportive to me.  For my part, I try to be honest about my illness and its effects without focusing too much on it. They now understand I need to nap every day, they can tell when I’m not feeling well, and they will even ask how I am doing occasionally.

So, how did we get to this new and improved state?  Well, again, it was a very slow, gradual process.  I think what helped the most was finally turning my mother around because she has a lot of influence with the rest of the family.  Because I didn’t seem to be getting through to her by talking, I wrote her a six-page letter.  In it, I explained what my life with CFS is like, how I perceived the way my family treated me, and how their actions really affected me.  I tried to emphasize that I understood they thought they were acting in my best interests.  I said that I thought they believed these things:
·      “the best thing for me is to keep my mind off my illness
·      I am consumed with thoughts of illness and focus too much on it
·      talking to me about my illness, how I’m feeling, etc. will only make me focus on it more
·      I am depressed a lot because of my illness”

And then, I explained:

“From my perspective, when I’m with you & the rest of the family, I feel as though you won’t acknowledge what I’m going through.  I feel as though everyone is pretending that everything is just fine. What you describe as “walking on eggshells,” I experience as a form of denial, that no one will just look me in the eye and acknowledge that I feel very sick.  The worse I feel, the more I feel ignored and invisible.

I want to emphasize that I’m not looking for pity or coddling.  I don’t expect my illness to ruin everyone else’s good time or force everyone to express sadness.  All I want – and need – is simple honesty and acknowledgement.”

I also explained why it was so difficult for me to spend time with other people:  “Stress and exertion come in all sorts of forms: physical, emotional, mental, social.  Even “good stress,” like excitement and joy, release certain stress hormones that my body can’t handle the way a healthy person can.  Any kind of social interaction is exhausting for me.  When I’ve tried to explain to you how much it wears me out to spend time with the family, you tend to take it personally.  But it’s not personal at all.  I respond the same way to social interaction with friends.”

I realized that my mother thought I was depressed and that she had to cheer me up.  I think this may be true for many of our family members.  They see us feeling so sick, and they misinterpret our distress for depression or even anger or a bad attitude.  

Finally, I enclosed a copy of a chapter from a book on CFS that I thought did a good job of explaining what life with CFS is really like.

To my mother’s credit, that letter sparked a major change, which then carried over to the rest of the family (I knew it was she telling the rest of the family not to focus on my illness and to “help me” get my mind off it).  My mother actually sought out a therapist who specialized in helping families of chronically ill people.  I think she finally read some of the information I’d been sending over the years about CFS.  And she changed her attitude and the way she treated me dramatically.  Eventually, that led to changes in the way the rest of the family treated me also.

I think it’s important to be honest with our families about how ME/CFS affects us, especially how we respond to social interaction.  I have also tried to share information with family (and friends) about what CFS is and what its symptoms are.  As in my case, helping our families to understand what we truly need can be a lengthy and painful process, but I do believe it is worthwhile in the end.  I feel as if I lost my family for a while there, but I have them back now.

What have your experiences been with your family?

Sunday, July 8, 2012


I know I do this often, but when I find a post I really like, linking it seems insufficient.  I have yet to use a heart rate monitor, but I have been saying no to more things hoping it leads to a world of yes's in the future...Its also the most often heard comment I get from those that think they understand this illness but have absolutely no clue..."I always feel better when I exercise or get out when I'm not feeling well..." I can't tell you how many times when I have turned down invites, said I couldn't wash the dishes, that I have heard that "advice" and how many times I politely smile and try to educate that this is the hallmark difference with Chronic Fatigue...and the most frustrating part about it...so here is the post...and the link to Jennie Spotila's blog...Occupy CFS

Can’t Drive 95

Almost as soon as I had decided to raise the limit on my heart rate monitor to 105 beats per minute, my physical therapy team smacked that idea down. They told me that one week with the monitor was not enough to really get the hang of pacing, and suggested that I was raising the limit so the monitor would not go off as frequently rather than because of any real improvement in my energy management. On their advice, I set the alarm back down to 95 beats per minute.
They were right.
One week was not enough. Neither is one month. My activity sets off the alarm multiple times a day. Climbing stairs, carrying objects, making the bed, moving anywhere too quickly – it all sets off the alarm. I tracked my activity, position and heart rate carefully for several weeks. And I tried – I really really tried – to make different choices and limit my activity.
It worked, sort of. After recovering from a family event, I went three weeks without a crash. My pain levels have decreased. I haven’t ended each day crawling into bed at 6:30 pm, shaking and exhausted. But this came with a price. I did not leave the house for those three weeks. I was much less productive than normal – just more inactive overall.
And I was miserable. I worried about the long-term effect of being even less active than before. I was bored, so terribly bored. I realized that pushing hard to exhaustion actually prevents me from feeling bored. If I’m completely wiped out, my brain can’t care about the fact that I’m spacing out to a baseball game. It doesn’t bother me when I’m too tired to care. But now I’m aware/awake enough to notice that I’m doing nothing, thinking nothing, and that I’m bored.
I feel the bars of this prison more acutely. It’s like standing outside a bakery and looking at the goodies in the window. I can see the things I want to do, but I can’t touch them without setting off the monitor. So I stand at the glass and stare. I want to fuss in the garden, tidy up, bake bread, cook dinner, write more blog posts, read read read the stack of articles in my queue, take photos, visit with friends – and I can’t. Not without hearing the boo-doop chime of the alarm. These are all things I did before, and I accepted the consequential pain and exhaustion. Now I am not doing them, and struggling to accept the consequential boredom, loneliness, and despair.
It’s a trade off, either way. But which is the right choice? When is it better to be bored? When is it better to be in pain? Living with CFS is always about moving targets, shifting limits, and hard choices. Wearing the heart rate monitor is designed to help me stop before I get to pain and post-exertional relapse. When I obey the alarm, it works; I experience much less pain and relapse.
But is it worth it?
What kind of life is it to stop halfway up 13 steps to rest? To not be able to cook and then also do the dishes? To not kick the ball around the yard with the dog for a few minutes? To say no, no, and no again to invitations and fun plans? To shrink my world so that I’m not free to move within my own home without a chime sounding? To sit and sit and sit and sit and sit and all the time knowing that I am sitting while opportunities slip by?
There are people with CFS who are bedridden. I am fortunate to have only suffered that way for short periods of time. But when I have been that ill, I have been so hazy and weak that I didn’t really notice. It’s like the first few days after acute gastroenteritis, where you’re not throwing up (which is good) but you can’t do anything else (and you don’t care).
Living with this heart rate limit is not like that. This feels like a cruel experiment. There’s a plate of cookies on the table in front of me, and I want a cookie. But every time I reach for the cookie, I get a powerful electric shock. So I sit, looking at the cookies, acutely aware that I can’t have one. I’ve made these adjustments before. When I gave up my job. When I gave up driving. When I gave up cooking dinner for friends. When I gave up walking more than 50 yards and submitted to using a wheelchair. I’ve been there, done that. And each time, it did not feel optional. I gave those things up because to continue doing them meant unbearable pain and exhaustion. But these day to day life things that set off the heart monitor are not like that. No single thing – carrying a few books up stairs, kicking the ball for the dog – puts me down. But cumulatively, or done for too long, these things do knock me out, and the heart monitor can prevent that.
What I’ve learned since strapping on the heart rate monitor is that the glass box of my limitations is too small. If I obey the monitor, if I focus on setting it off as little as possible, I will lose my mind. I will sink into deep depression, isolated and unsatisfied. I will resent the healthies in my life. I will surrender more of myself to this greedy illness, and I will live each day focused on what I cannot do rather than on what I can. The longer I wear this monitor, the more clear it becomes to me that I cannot abide the speed limit of 95 beats per minute.
Edited to add: My friend Wilhelmina Jenkins posted a comment on Facebook that I’ve posted with her permission below, but one sentence really captures how I feel: “How long can you stare at the cookies in the window without feeling that you are starving to death?”

just thinking about it

I decided today, after having that glaring headline in O Magazine that I was slowly killing myself by being sedentary trying little things - arm stretches, head rolls, reaching to the sky, moving my ankles up down up down...it honestly feels absolutely ridiculous - but no one is watching - so why do i care.  Sometimes its just so much easier to not move and wait out the day - but today I thought I would try this little experiment, just a little momentum - move slowly.  Then I saw this link on Sue Jackson's Blog - on exercise intolerance, I became intolerant just looking at all the information...I'll let you know how it goes, and if I have enough energy will read more on how to not be so tired...except right now reading all about it is making me exhausted:)

I realize this messed up all of the margins...but can't figure out how to fix it...oh well...the mixed up nature of it mirrors how i feel right now anyways...so quite fitting

Post-Exertional Malaise: Resources for You

Post-exertional malaise or relapse is a hallmark symptom of CFS. Here’s how one person with CFS described it:
“Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head . . . someone crushing your ribcage, limbs giving out, mesh bag constricting head, ‘pingers’: those first small headaches that warn of bigger headaches, ‘back of head clamp’ headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head . . . Harm and damage often come from these collapses, though on the outside they may look like ‘malaise.’”
Over the years we have developed and published many articles and resources about PEM. We collect several of them here for the benefit of those new to the subject and ready reference for others.
Overview articles About PEM:
  • The Hallmark of CFS
    By Suzanne Vernon, Ph.D.  |  Originally published Feb. 3, 2010 in CFIDSLink
    This article describes PEM and research results from the Pacific Fatigue Lab.
    Link: http://www.research1st.com/2010/02/03/the-hallmark-of-cfs/
  • Unraveling Post-Exertional Malaise
    By Jennifer M. Spotila, J.D.  |  Originally published June 2010 in CFIDSLinkPart 1 of 4: This article examines the definition of PEM and how CFS patients experience it.
    Link: http://bit.ly/PEM-Pt1
  • Post-Exertional Malaise: Perception and RealityBy Jennifer M. Spotila, J.D.  |  Originally published August 2010 in CFIDSLinkPart 2 of 4: This article examines objective evidence of PEM and how it differs from fatigue in other illnesses.
    Link: http://bit.ly/PEM-Pt2
  • Post-Exertional Malaise: Cause and Effect
    By Jennifer M. Spotila, J.D.  |  Originally published August 2010 in CFIDSLinkPart 3 of 4: This article examines the topic of kinesiophobia and what mechanisms may cause PEM.
    Link: http://bit.ly/PEM-pt3
  • Post-Exertional Malaise: Power to the PeopleBy Jennifer M. Spotila, J.D.  |  Originally published September 2010 in CFIDSLinkPart 4 of 4: This article examines what patients can do to cope with and avoid this incapacitating symptom.
    Link: http://bit.ly/PEM-Pt4
  • Click here to download Jennie Spotila’s four-part PEM series in PDF format.
Articles About Balancing Activity and Rest:
  • When Working Out Doesn’t Work Out
    By Christopher J. Snell, Ph.D., Mark Van Ness, Ph.D., and Staci Stevens
    Originally published summer 2004 in theCFIDS ChronicleThis article examines exercise and ways people with CFS can balance activity and deconditioning.
    Link: http://bit.ly/LzU6ye
  • Doc to Doc: The “Skinny” on Exercise and CFS
    Q&A with Drs. Lucinda Bateman, Nancy Klimas and Susan Levine
    Originally published summer 2006 in the CFS Research Review This interview with three expert physicians explores recommendations to avoid PEM and deconditioning.
    Link: http://www.cfids.org/cfidslink/2006/exercise-cfs.pdf
  • Alternative (t0) Exercise
    By Sabine Miller  |  Originally published winter 2008 in the CFIDS Chronicle
    This article presents one woman’s approach to nontraditional forms of exercise to combat PEM.
    Link: http://www.cfids.org/pdf/alternative-exercise.pdf
  • Managing Your Energy Envelope
    By Bruce J. Campbell, Ph.D.  |  Originally published winter 2009 in the CFIDS Chronicle
    Dr. Campbell presents nine strategies to help manage energy and use it to its maximium effect.
    Link: http://bit.ly/energy-env
  • The “E” Word
    By Jennifer M. Spotila, J.D.  |  Originally published Oct. 2010 in the CFIDSLinkAs a follow-up to her four-part series (above), Jennie looks at ways that people with CFS can be active without triggering PEM
Articles About PEM-Related Research Issues:
  • To PEM or Not to PEM: That is the question for case definition
    By Leonard Jason, Ph.D., and Meredyth Evans  |  Originally published Apr. 27, 2012 on Research1st.com
    This article looks at the way that PEM is described in various case definitions.
    Link: http://www.research1st.com/2012/04/27/pem-case-def/
  • From Discovery to Application
    By Dane Cook, Ph.D.  |  Originally published Apr. 16, 2012 on Research1st.com
    Dr. Cook refers to two recent biomarker studies and connections between them.
    Link: http://www.research1st.com/2012/04/16/from-discovery-to-application/
  • Breaking Ground
    By Kim McCleary  |  Originally published Feb. 23, 2012 on Research1st.com
    One of the research projects announced as part of the Research Institute Without Walls will examine patients’ cognitive performance and blood and brain markers after modest physicial exercise challenge.
    Link: http://bit.ly/A6isBo
  • Toward Consistency
    By Kim McCleary  |  Originally published Feb. 8, 2012 on Research1st.com
    This article summaries a publication from members of the CFS Advisory Committee about ways to better standardize research data in the study of CFS, including standard measures for PEM.
    Link: http://www.research1st.com/2012/02/08/toward-consistency/
  • PFL Testing for Post-Exertional Malaise & Disability
    By Staci Stevens and Christopher J. Snell, Ph.D.  |  Originally published Nov. 18, 2011 on Research1st.com
    The Pacific Fatigue Lab has become the premier center for test-retest exercise testing to document PEM.
    Link: http://www.research1st.com/2011/11/18/pfl-testing/
  • Exercise Challenges Reveals Potential Biomarkers
    By Kim McCleary  |  Originally published June 2, 2011 on Research1st.com
    Research results published by Kathleen Light’s University of Utah team following modest exercise promise blood markers for CFS and PEM.
    Link: http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/
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Kyle Kenney is the CFIDS Association of America’s summer science communications intern. Kyle is a sophomore industrial engineering major at the Georgia Institute of Technology and a native of Charlotte, North Carolina. He has family members with CFS.

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