Tag Archives: pacing

A Request That Should Not Be Ignored

Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading

Posted in Commentary, Research | Tagged , , , , , , , , | 13 Comments

Draft Systematic Review is UP

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

Limited Capacity

Life with ME/CFS is all about limits. Physical. Mental. Emotional. It’s like living in a glass box that remains far too small, no matter how much you practice acceptance or positive thinking. And the torture of it is that since … Continue reading

Posted in Occupying | Tagged , , , , | 25 Comments

Guest Post: Longtime Patient, New Advocate

I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , | 12 Comments

Data Queen

One of the biggest weapons I have in the fight against ME/CFS is data. I keep track of my activities, medications, sleep, and symptoms daily, and over time that data can be very powerful. I’ve blogged extensively about wearing a … Continue reading

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Two Is Better Than One

My confidence in two-day cardiopulmonary exercise testing (CPET) is pretty obvious on this blog. A new study from ME/CFS experts Dr. Chris Snell, Staci Stevens, Dr. Todd Davenport, and Dr. Mark VanNess supplies hard data that shows how important a … Continue reading

Posted in Research | Tagged , , , , , , , | 10 Comments

Heart Rate and Beta Blockers

Beta blockers are routinely prescribed to ME/CFS patients who have orthostatic intolerance. But because of the medication’s effects on heart rate, it can be challenging to incorporate heart rate monitoring into the picture. After some uncertainty, I have managed to … Continue reading

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Meeting METS

It has been more than a year since I had a two-day exercise test. My exercise test report was full of all kinds of jargon, and over the last year I have been trying to decode and apply it to … Continue reading

Posted in Occupying | Tagged , , , , , , , | 6 Comments

Sometimes It’s One of Those Times

Sometimes, life just vomits in your lap. One thing after another goes wrong, and you feel like you’re juggling roaring chainsaws while pedaling a unicycle. Or maybe that’s just me. 2013 has been challenging, to say the least. I’m fully … Continue reading

Posted in Occupying | Tagged , , , , , | 13 Comments

Moving On Up

For years, the Pacific Fatigue Lab at the University of the Pacific has done the best research on exercise and ME/CFS. Staci Stevens, Dr. Chris Snell, and their collaborators perfected the use of two-day cardio-pulmonary exercise testing (CPET) in people … Continue reading

Posted in Occupying, Research | Tagged , , , , , , , , | 1 Comment