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What Are the Most Important Things to Remember about ME/CFS/FM?

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By Charles Lapp, MD
 
My dear friend, Roger Gilmore, once suggested to me that the keys to improvement in ME/CFS/FM are ACCEPTANCE, then ATTITUDE, then ADAPTION. The more experience I accrue, the more I think he is right. Let’s examine each of these themes.
 

Acceptance 


I used to show a cartoon in my presentations that addressed acceptance. It wasn’t a funny cartoon, but one that makes a point. It showed two boxers in their respective corners of a boxing ring. One trainer was advising his haggard fighter, “He’s bigger than you, stronger than you, and faster than you … It’s time we talk strategy.”

ME/CFS/FM is like that. It’s bigger than you and stronger than you. You cannot wish it away, pray it away, exercise it away, or even lay around until it goes away – you have got to develop a strategy. And planning a strategy requires that you first accept that you have a problem, and second that you be willing to deal with it.
 
I have had many patients who could not accept ME/CFS, so they would push until they crashed, exercise beyond limits, try to keep up their activities, and pretend that they weren’t limited. As a result, they all got sicker and sicker. Many have never recovered. They crossed that invisible line beyond which modern medicine can no longer help, and they have remained broken and miserable as a result.
 
Accept that you have been dealt a poor hand, then resolve to play the cards as best you can. You may not be able to return to your previous hectic activities, or work full time, or raise children and run a household without assistance, but you can have an active, meaningful, and enjoyable life! Healing never occurs without acceptance. 
 

Attitude


There are a number of factors that negatively impact recovery, but a poor attitude heads the list. Those who insist “I can’t, I won’t, … ” fulfill their own prophesies. The first step is to convince yourself that “I can, I will …” Next address any emotional obstacles, especially depression, anxiety, and stress. Nothing will defeat the “I Can Attitude” like depression and anxiety, and I don’t believe that I have ever seen recovery from ME/CFS or FM until these two emotional hurdles are removed. See a psychiatrist, see a counselor, talk to your pastor, priest, or rabbi – but do whatever you can to control these emotional drains.
 
Persons with ME/CFS/FM respond to emotional stresses as if they were physical exertion. In other words, emotional stresses like deadlines, emergencies, and confrontation sap away physical energy. Anger and bitterness are emotional drains that sap away physical energy also. Identify such stresses in your life, and do whatever possible to eliminate them. As one sage put it, ‘there are two kinds of stresses: those that you can control, and those that you cannot. Learn to deal with the ones that you can control, and accept those that you cannot.’
 
This leads to the last key, adaption. 
 

Adaptation


The hardest part of dealing with ME/CFS and FM, I believe, is making the necessary lifestyle changes. Personally I was lucky in this regard. I survived a heart attack at age 45. I can remember lying in the Intensive Care Unit and looking at the men and women lying next to me — most of whom were almost twice my age – and asking myself “how did I get here and what can I do to prevent this from happening again?”
 
Call it luck or call it fate, but that day the ICU was visited by too well-known cardiologists, Dr. Dean Ornish and Dr. Herbert Benson, who were promoting a program of relaxation, meditation, diet, and exercise to reverse heart disease. In other words, the way to deal with this was to make lifestyle changes, and the solution literally stepped up to me and shook my hand!
 
The lifestyle changes necessary in ME/CFS and FM are straightforward and reasonable, but for most of us they do require major shifts in the way we see and do things: 
  • Stick to a simple daily routine, including a fixed wake time every day
  • Endeavor the best sleep possible for at least 8-10 hours each night.
  • Pace yourself by alternating short periods of activity with rest
  • Set reasonable limits on your activity and strive to stay within your “energy envelope”
  • Make a daily low level exercise program a priority
  • Eat a nutritious well-balanced diet every day
No pain, no gain. But the pain of revamping an ambitious, active (probably unhealthy, self-destructive) lifestyle is worthwhile in order to regain one’s energy, ability, and self-respect.