"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Tuesday, January 19, 2010

A Picture is Worth a Million PWC Words.

Imagine being attacked during a morning swim in the ocean surf. You recognize instantly something must be eating you alive. You don't know what it is, but in a moment during the struggle, you reach underneath the surf when the monster is revving up for another attack, and you can feel that your flesh is ripped apart on your legs. You now understand the damage being inflicted upon you even if you don't know what the monster is. You can make educated guesses based on the violence of the attack, and given the evidence underneath the surf; and based on those inferences alone, you can better plan your attack and/or hopefully your escape.

Dr. Lucinda Bateman showed us a slide yesterday in her Webinar presentation on XMRV, hosted by the CFIDS Association, and this is how I felt when viewing it. I could SEE the damage being inflicted on my body during post-exertional malaise. It was another one of those CFS watershed moments for me. We still don't know what is causing the damage or why, but the slide I will show you below clearly details the violent damage being inflicted. It is evidence I can use to recognize what I might be able to do to attack the monster, and increase my quality of life. It also is evidence I can show to the people in my world, that may not understand the violent attack of CFS.

According to Blood Biomarkers for CFS: A Light at the End of the Tunnel, "Alan R. Light, PhD, and his team at the University of Utah Health Sciences Center have identified genes that increase in activity following moderate exercise."  The discovery was published in Journal of Pain.  Quoting from the Blood Biomarkers article:

"First, the investigators’ logic is based on mouse experiments they conducted to understand sensory muscle fatigue and pain. These animal studies showed that there are molecular receptors that act together to detect the metabolites produced by muscle contraction. Second, the investigators used the findings from mouse experiments to develop a hypothesis for examining the blood in CFS patients and controls to look for activity of genes shown to detect metabolites that result from using muscles. Third, they used the kind of moderate, full-body exercise that is known to cause post-exertion fatigue in CFS but is well-tolerated by healthy control subjects."

For years, PWC's (Patients with Chronic Fatigue Syndrome) have been trying to tell their doctors and caregivers how they are physically feeling.  For years we have tried to tell our family and friends the same.  We physically cannot tolerate exercise, unless we wanted to experience a near death experience for days after.  They couldn't get that. And I can see that. We don't Look sick.  Most of the time, every word we have tried to use to explain the debilitating fatigue was in vain. I explain it as partying hard all night with alcohol and recreational drugs; smoking a pack of cigarettes when you don't smoke, and staying up all night. Then with no sleep, you start climbing Longs Peak with a 40 pound pack, and the worst hangover you have ever had. Then, as you reach the top at appx. 14k feet, you get the worst flu of your life. Add it all up together and that's how a PWC feels every day.  I know this is what it feels like, because I actually did this in my thirties, before I got ill. Yes, it was a bad day. :+)

Regardless of how we try to explain it, it just seems impossible to understand.  Or, if your reference does get through to whomever you are explaining it too, inevitably they think "There's no way. There's no way someone can feel that way day in, and day out, for weeks or months, or even years? They have Got to be exaggerating"   Well, we don't have to try and explain it anymore; at least try to explain why we 'crash' after exceeding our limitations.  This picture speaks a million PWC words, and then some, about what happens. 

(Click on the image to enlarge)
The top slide in the image represents healthy controls after 25 minutes of exercise on an Airdyne bicycle (uses both arms and legs to turn the wheel). The middle slide represents results of CFS patients given the same test. The bottom slide represents MS patients, as well given the same test.  I can try to interpret for you?, but I am sure I wouldn't do it justice. So, I do recommend a short trip to the article for a detailed explanation. One thing I can tell you is that by looking at the above slide, it's just astonishing what happens to us during post-exertional malaise.  I can point to the tallest marker in the middle slide which represents the results from the PWC testing, the pink one?, and tell you it is associated with cardiac outputAnd I cannot help but wonder how this relates to Dr. Paul Cheney's theories, and evidence, that a PWC's heart has a Left Ventricular Diastolic Dysfunction (Page 5 in the PDF) but not in the normal sense of the definition. Cheney comments that:

"...patients with M.E. (and CFS) suffer from cardiac problems since they cannot pump sufficient blood to the heart. He explains that the inability of very ill patients to stand up is the body protecting itself from cardiac stress and possible death. Cheney explains that if patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea (Shortness of breath) will develop, with ankle edema and other signs of congestive cardiac failure. In order to stay relatively stable, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match. Attempts to push beyond limits will cause injury or death."
Any PWC that has doubtful family and friends, doctors and caregivers?; all they need to do is show them this slide and the corresponding literature that backs it up.  It says it all.  Thank you to all the doctors, scientists, and PWC's that participated in this ground breaking discovery of what literally happens to us during post-exertional malaise.  You just helped us save energy in trying to explain what happens, and how we physically feel.  You validated our own sense of just how physically sick we truly are.  I cannot express to you my thanks for this evidence.

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