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Chronic Fatigue Syndrome/ME resource providing news, me-cfs treatment information, medical abstracts and a support community for those coping with Chronic Fatigue Syndrome/ME.
 
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Rest, Pacing and Stress: What Every Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Patient Should Know


Chronic Fatigue Syndrome and Myalgic Encephalomyelitis Rest, Pacing and Stress Rest and Pacing - Drive your car kindly! It lasts much longer!

"Thou shalt not be thine own worst enemy, but thine own best friend."

Rest is the single most important factor in allowing chronic fatigue syndrome sufferers (CFSs) to get better. An invariable feature of the history is that exercise (mental, physical or emotional) makes the symptoms worse.

Indeed this distinguishes CFS from depression -
  • Exercise tends to improve people who are simply depressed.

  • In CFS the desire is there but the performance lacking.
However, all CFSs tend to push themselves to their particular limit every day and therefore do not give themselves a chance to get better. This means they have one day doing as much as possible, then three days to recover.

Whilst you are on this roller coaster ride of activity and dives, you cannot hope to improve overall. Energy has to be carefully rationed so that every day is about the same. This is the most difficult aspect of treating CFS, because this is often the very personality that makes people get CFS in the first place.

We now know why CFSs get delayed fatigue - it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all. [Note: Dr. Myhill's 2009 research paper - "Chronic fatigue syndrome and mitochondrial dysfunction" - suggests that in CFS the mitochondria's normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]

Cells have to make brand new ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms.

Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It is vital to work out exactly how much you can or can't do in a day - and then do less.

Imagine that a normal healthy person has £1,000 worth of energy to spend in a day.
  • The CFSs only have £100.

  • What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.

  • Furthermore, you are only allowed to spend a few pounds in one session - then rest.
If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less - but with careful pacing you will end up doing more!

I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!
 
By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All the above count as activities which have to be carefully rationed through the day.

• When you rest, lie horizontal because this reduces the work of the heart (it is much harder work pushing blood round a vertical body, up hill and down dale, than when horizontal and everything is on the flat). Interestingly caffeine helps the body scavenge AMP, so small amounts in green tea, coffee or dark chocolate can be very helpful.

• The second point is to have a proper rest, when you actually go to bed, regularly in the day, EVEN ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push yourself one day, expect to "pay" for it 12 to 36 hours later. So just because you feel well one day, don't overdo things or you will be worse off the next.

• Thirdly, do things in short bursts. You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time. I had one patient who could only walk 30 meters, but by walking 15 meters and resting, then going on again, she got up to walking a mile a day!

• Fourthly, vary your activity. This applies to the brain as well as the body - listening to the radio or music uses a different part of the brain than watching TV. Washing up dishes (sitting on a high stool, please) uses different muscles than walking.

^ Top


The Ten Commandments for Reducing Stress


1. Thou shalt not be perfect or try to be.

2. Thou shalt not try to be all things to all people.

3. Thou shalt leave things undone that ought to be done.

4. Thou shalt not spread thyself too thin.

5. Thou shalt learn to say "NO."

6. Thou shalt schedule time for thyself, and for thy supporting network.

7. Thou shalt switch off and do nothing regularly.

8. Thou shalt be boring, untidy, inelegant and unattractive at times.

9. Thou shalt not even feel guilty.

10. Thou shalt not be thine own worst enemy, but thine own best friend.



Further Reading


Promoting Recovery: The Fifty Percent Solution
According to ME/CFS experts such as Paul Cheney, MD, lifestyle change is "easily the most important and often the least emphasized" part of treatment.
Nurture Yourself with Pre-Emptive Rest
Scheduling regular times to rest, even on days when you're feeling good, can be a surprisingly effective tool in helping to increase energy and productivity.
A Radical Care Pathway for ME/CFS
Much maligned and misunderstood, ME gets a radical makeover by a psychologist. But is this pathway really so radical? Perhaps only if you are a healthcare professional!
 
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