Friday, October 9, 2015

What It's Like to Have Chronic Fatigue Syndrome - The Atlantic

"If you have this illness, there's nothing that can be done about it, so we're not going to bother with you,"

Thursday, October 8, 2015

Stupid Phrases for People in Crisis | Communicating.Across.Boundaries

This article needs to be handed out at every church (and, Jean suggests, also at every seminary).  Things people say that are actually hurtful to the suffering.
The hymn is "here I am, send me, send me", not "I'm going to pray for you so that God will send someone else."  Get off the couch, stop praying, and do something useful.  I've had people praying for my chores for 15 years and God still hasn't dropped by to do the chores for me.  Please don't try to convince me of the "power of prayer" because I have the evidence in my own home that hands-on action works better than praying.
God will never give you more than you can handle. While some may believe it is theologically correct, depending on your definitions, it is singularly unhelpful to the person who is neck-deep in a crisis, trying to swim against a Tsunami. A wonderful phrase recently came from Support for Special Needs. They suggest changing this from "God will never give you more than you can handle" to "Let me come over and help you do some laundry." This strikes me as even more theologically correct.
When God shuts a door, he opens a window. Maybe, but maybe not. Maybe he just shuts a door. Maybe there is no window. There was no window for Job. There was a cosmic battle that raged as he sat in distress. There might not be a window.
Did you pray about it? Again – theologically correct. "Don't worry about anything, instead, pray about everything…" but in a crisis, you don't heap guilt onto pain and suffering.
Maybe it happened for a reason. Remember what I said about punching someone in the face with a knife? Yeah – that.

Tuesday, October 6, 2015

Sad News

Dr. Martin Lerner, 86, passed away yesterday. He was a pioneer in biomedical research into ME/CFS, particularly viruses and cardiac issues.

5 Things I Wish My Doctor Knew About Having An Invisible Illness

It can be hard for doctors to look at me, smiling and even laughing in front of them, and understand that I am experiencing severe fatigue and relentless pain. But the simple reality of chronic disease is that you adjust to fatigue and pain that is unimaginable to those who have never lived it because you have no other choice. Do not make the mistake of assuming that you know my experience — ask me and listen to my answer.
See more at:

Monday, October 5, 2015

Slightly Alive: Welcome to ICD-10-CM

All you really need to know is that ME remains in the chapter on neurology at the classification G93.3, along with postviral fatigue syndrome (which is a British name that has not been used much, if at all, in the United States).  CFS "remains" (from CDC's perspective) in a different chapter for vaguely defined symptoms at R53.82.  However, the rest of the world (which has been using ICD-10 for 1-2 decades now) has CFS coded to G93.3 with M.E.  So what appears not to be a change actually IS a change, and a significant one.  How did we end up to be the only nation in the world who codes "CFS" under "General symptoms and signs: Malaise and fatigue"?
 ...Since CFS was not in ICD-9, as long as the US continued to use it, they were free to place CFS wherever they wanted.