ME/CFS AUSTRALIA (SA) INC
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Universal evaluation tool in CFS
Sunday 25 October 2009
Adrienne Dellwo reports on the development of a fatigue measurement tool called the Energy Index Point Score:
Universal Evaluation Tool in Chronic Fatigue Syndrome: Call to Action
How do you rate fatigue, or the myriad other symptoms that come with chronic fatigue syndrome (CFS or ME/CFS)? How do you rate your overall functionality (or lack thereof) in a way that doctors can understand with just a glance at your chart?
When it comes to other major health issues, we have scales. Any oncologist can look at any cancer patient's chart and see exactly what disease stage they're in. As flawed as the standard pain scale may be, at least it's something. Yet with millions of people's lives derailed by chronic, debilitating symptoms we have no universally recognized way to describe where an ME/CFS patient "is" in terms of disease severity or recovery.
One noted doctor and researcher says he has the tool we need to gauge these things. Dr. A. Martin Lerner, of the Treatment Center for Chronic Fatigue Syndrome in Michigan, has been using the tool he developed for years and has scientific studies to validate its effectiveness. Dr. Lerner was a practicing infectious disease specialist when he developed ME/CFS, and in the 20 years since his recovery, he's dedicated himself to researching the condition and treating other people who are living with it.
The tool is called EIPS, which stands for Energy Index Point Score. It's a 0-10 scale that measures not just fatigue, but functionality. At 0, you're bedridden and can only get up to use the bathroom. Each step up the scale represents a significant improvement, with gradually increasing lengths of time out of bed. At a 6, you're considered in the recovery stage, and at 10 you're fully functional once again. See the full EIPS chart here: Energy Index Point Score. The abstract of the clinical study validating it as an effective tool is here: Validation of the EIPS in ME/CFS.
Dr. Lerner is working to get the word out to doctors and patients that they can use this tool to effectively chart improvements or declines in your condition. He urges doctors to hang a copy of the scale in their exam room and re-evaluate your standing at each appointment.
You might be asking, "If this scale is so great, why aren't other doctors using it?" The answer is simple -- while some research makes for big news, some research goes on quietly and never makes a splash. That's not due to the importance or quality of the research; it's usually due to the ability of the researchers or the organizations behind them to reach the masses. The EIPS is one of those quiet discoveries that kind of fell through the cracks.
OK, now you may be wondering why it helps to know where you stand when you haven't found effective treatments and don't know how you could ever progress to the recovery stage. To fully understand that, you need to know more about Dr. Lerner's work and his theories about ME/CFS. I'll be bringing you more on those topics over the next week.
Learn more or join the conversation!
The above, with comments from readers, originally appeared here.
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