Sunday, July 8, 2012

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 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 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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
    This article looks at the way that PEM is described in various case definitions.
  • From Discovery to Application
    By Dane Cook, Ph.D.  |  Originally published Apr. 16, 2012 on
    Dr. Cook refers to two recent biomarker studies and connections between them.
  • Breaking Ground
    By Kim McCleary  |  Originally published Feb. 23, 2012 on
    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.
  • Toward Consistency
    By Kim McCleary  |  Originally published Feb. 8, 2012 on
    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.
  • PFL Testing for Post-Exertional Malaise & Disability
    By Staci Stevens and Christopher J. Snell, Ph.D.  |  Originally published Nov. 18, 2011 on
    The Pacific Fatigue Lab has become the premier center for test-retest exercise testing to document PEM.
  • Exercise Challenges Reveals Potential Biomarkers
    By Kim McCleary  |  Originally published June 2, 2011 on
    Research results published by Kathleen Light’s University of Utah team following modest exercise promise blood markers for CFS and PEM.
Webinar Videos:
Other Topics That Intersect with PEM:
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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