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Rest, Pacing and Stress: What Every ME/CFS Patient Should Know

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Dr. Sarah Myhill is a leading fatigue specialist based in the UK. Her groundbreaking research suggests that failure of the cells' energy-producing mitochondria, likely stressor-induced, is a central cause of ME/CFS symptoms.

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 de novo 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!

Resting In the Day

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.

As You Recover

The first step is to reduce the amount of physical and mental work each day until all days are about the same.

At the same time you will be putting in place all the necessary interventions to allow recovery see sections [in Diagnosing and Treating Chronic Fatigue Syndrome] on:

• Nutritional supplements

• Stoneage diet

• Sleep, etc.

Get the regime tight until you get to a stage when you feel absolutely fine doing absolutely nothing!

The level of activity is then very slowly increased each day on the proviso that you continue to feel well.

The key here is to vary activity. Different parts of the brain and body have to be exercised. One of the most active areas of the cortex is that which is concerned with vision. Processing information from a television, for example, requires much more activity than listening to music. Television needs to be rationed.

Similarly, physical exercise should be done using many different muscle groups and initially should be limited to simple stretching exercises without weights.

The level of physical and mental exercise is very gradually increased. It may well take several months before significant changes are seen. To adjust the level of activity to what is appropriate you have to judge things by the next day. If there is delayed fatigue then you have overdone it. There is a very fine “window” between too much and too little. Straying either way makes CFS worse!

One of my patients… has developed a useful technique for rest. Every activity is scored as to whether it is:

Energy giving (e.g., sleep, lying in bed in a darkened room, meditation),

Energy taking (e.g., dressing, walking, talking, cooking, cleaning, etc.)

Or energy neutral (easy reading, easy TV, having a massage, etc.).

Each day is scored in terms of time spent doing each activity and balanced out so energy input equals energy output. Everybody has their own balance. But one can quickly see if too much has been done on any one day, in which case a balancing is necessary. Doing it like this, on a chart, takes the guilt out of resting. It simply becomes a necessity like eating or drinking.

I can recommend Calibre – The Audio Library – a registered charity providing recordings of books to the blind and print disabled (CFS patients qualify on many scores!). The service is free, the voice on the end of the phone extremely friendly. Contact Calibre Library on: 01296 432 339. [In the U.S. a similar free service is The National Library Service for the Blind and Physically Handicapped, which offers talking books/magazines and talking book players through a cooperative network of local libraries.]

Once you get to the stage when you have good levels of activity and feel fine, then, and only then, dare you relax the regime.

This of course is a council of perfection – actually nobody does it this way because life has a nasty habit of getting in the way. There is usually a trade off between how you feel and how much you can do. But the business of feeling ill is a disease amplifying process – it can actually make you worse as cells are damaged – so do work hard at pacing.

Work and Pacing

There is a whole spectrum of CFSs – from those professional athletes who cannot do their marathons in less than 2 hours 12 minutes – to those who are bed ridden. Some CFSs can manage full time work, but very often are operating "on adrenaline" and crash when they give it up.

This crash can last several weeks or months. Many can do some part time work, in which case late afternoon work is the best. Don't try to change the job you are in; never resign or you will lose valuable rights. I am happy to give sick notes, write to companies/bosses, do letters for early retirement, and fill in disability living allowance forms, etc. for my patients. I never used to charge for these letters, but because there is so much paper work now, I make a charge reflecting admin/time costs.

The mitochondrial function test results are very useful to include in these letters, because these give us an objective measure of fatigue. [See Dr. Myhill’s recent article with Drs. John McLaren-Howard and Norman Booth – “Chronic Fatigue Syndrome and Mitochrondrial Dysfunction” – introducing “a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME).”]

If you work to your limit, then you should do very little outside work. Spend the evenings and weekends resting.

Get Organized

The people who get CFS are often those who "burn the candle at both ends." They hold down a demanding job, care for a family and are often active sportsmen/women. I see many top athletes with CFS – professional footballers, cyclists and swimmers, decathletes, many county badminton, hockey, cricket and squash players, and several quality marathon runners. (See "The Ectomorph.") These people are the very ones who find it difficult to ask favors of others.

• Ask other people to do things.

• Stop being house-proud.

• Get a cleaner and dish washer.

• Simplify your life.

• Accept offers of "meals on wheels" from others.

• Standardize shopping lists so you don't need to think each time.

• Arrange for as much food to be delivered as possible; e.g., have a standing order at the green grocer for fruit and vegetables, with the fishmonger, with the butcher, etc. Many city areas have organic food delivery.

• Have standard menus every week so you don't need to think about what to eat.

• Choose foods requiring minimal preparation.

• Use the internet to order from supermarkets [e.g., www.tesco.com] so that foods are delivered to the house directly – a weekly standard “shopping basket” takes energy to set up but takes the mental and physical effort out of shopping thereafter.

• Take advantage of a washing machine and drier.

• Give up ironing – a nonsensical, energy sapping waste of time and energy. Ironing came into fashion to kill nits and fleas in the seams of clothes and had a purpose once! I don't iron, but then I always was a scruff!

• Do things by the clock. We are creatures of habit and the physical body likes things to happen on a regular basis – you ask any farmer who keeps animals – they thrive on routine. Sleep and eat at regular times and pace activities so you do about the same every day and during the same time slots. I know that life has a habit of getting in the way of this ideal, but as a general principle, stick to it.

I always think life is all about going from one crisis to the next. If every bit of your energy is taken up every day, then you don’t have any left in reserve for the crises. This is another good reason not to constantly push yourself to your limit.

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.
* Dr. Sarah Myhill, MD, is a UK-based fatigue specialist focused on nutrition and preventive medicine. This information is reproduced with kind permission from her educational website (DrMyhill.co.uk)® Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198. It is excerpted from her free online book – Diagnosing and Treating Chronic Fatigue Syndrome – updated in August 2010.

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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10 thoughts on “Rest, Pacing and Stress: What Every ME/CFS Patient Should Know”

  1. vickiw says:

    I would like to add that in the U.S., many public libraries now participate in “NetLibrary.” Once you sign up at your local library, you can go online and select from hundreds of eBooks in many categories.

    The books can be downloaded to your PC or MP3 player. This is a fantastic service! It’s so relaxing to lie down and listen to a book. Normally, my eyes get tired when reading and I get tired just holding a book but this is effortless once set up.

  2. vickiw says:

    that they have a good selection of AUDIO books.

  3. pammuz says:

    I guess she doesn’t live in the real world. My real world includes being the only caregiver for my 91-year-old father who is in failing health (rest of my family is deceased). My only income is from a small business I run from home. My stress level is off the charts but my father is not “bad” enough yet for us to get help in.
    All of my father’s friends and relatives are deceased, so it’s impossible to find people to come to visit from time to time.

  4. SisterLDM says:

    This article was value-packed from my perspective. The exercise portion was especially relevant to me, and offered information I can apply right now, as a recent change I made to my exercise program triggered a flare. I over-stepped my gradient approach in my enthusiasm to continue getting more re-conditioned. Luckily, I have acquired effective flare recovery skills/tools over the years and will get back to my step-by-step program of recovery. First thing I will do is go back to when I was doing better and move forward from there adding some of Dr. Myhill’s suggestions.

    I loved the idea of grading/scoring an activity as energy giving, energy taking or energy neutral.

  5. kaykay4 says:

    Excellent article. It took me years of over-doing it on my good days and spending days recovering from the crashes that followed before I learned I must pace myself. I’m still learning that!

    One of the most difficult things to do is to try to explain to someone without CFS what the fatigue in Chronic Fatigue Syndrome is like and why it’s different from his/her fatigue. I found an article online that is very helpful:


    Although the article is about a person with Lupus, The Spoon Theory does explain the fatigue people with CFS and other chronic illnesses experience.

  6. greenjeans says:

    I was so thrilled to read this article because it described my life with the ups and downs. She explained it in a way that makes sense. No one has explained this as well.

  7. JeNeSuisPersonne says:

    Pacing suggestions – fabulous!
    Thanks for posting!

    But, this quote –

    ” . . . all CFSs tend to push themselves to their particular limit every day and therefore do not give themselves a chance to get better. . . 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.” (capitol letters supplied by me)

    Even a great ME/CFS champion like Dr. Myhill keeps (accidentally, I hope) reinforcing the outdated and inaccurate premise that ME/CFS is not caused by infectious agents, but by an errant personality.

    No wonder we’re in such a state trying to get REAL RESEARCH (not psychiatric GET and CBT dead-ends) for our disease! We have to get past this idea because ME/CFS affects ALL personality types!

    1. bbrown1 says:

      What a wonderful and informative article. I have suffered with CFS for nearly five years, being in the severe to very severe level much of the time. It amazed me how Dr. Myhill hit it right on the nose regarding the body’s ability/inability to function.

      I agree that rest and common sense regarding just how much our bodies and minds can take is crucial. All suggestions given in this article aid in easing the life of a CFSer…

      I have Bible Study at night and I am currently involved on another committee with my church that is holding meetings one night a week. By the time evening comes, it is nearly impossible to function and I drop into bed afterward with that feeling that I am coming down with a nasty case of the flu. Everything hurts.

      I agree 100% with the recommendations here and couldn’t have stated it better. Thank you to all medical researchers and staffing who are working diligently to find causes and cures to this debilitating disease. Nine months after having accidental CO2 poisoning I was working full time as an Admin. Asst. and remodeling my home. At middle age this was fulfilling but also very demanding on my mind and body. While in the midst of remodeling (by myself) I fell into a deep sleep, my heart was attacked, causing Congestive heart failure followed by all other typical CFS symptoms. That ended my career, my social life, my fun in life.

      I paid the ultimate price of pushing beyond my capabilities at my age. Using the three point solution to best maintain ourselves is also crucial. That is, Psychologically, physically and most importantly for me, Spiritually. I have allowed God to hold me up through many of these struggles and it’s helped immensely.


      Brenda Brown
      Virgina, MN

    2. jobeth915 says:

      I didn’t like that part either–that somehow my personality caused my illness. I had a whiplash and head trauma in an auto accident in 1995. Began to experience some problems w/ neck and extremities but seemed to recover. Then, had a severe winter illness/bronchitis one year that I had difficulties recovering from then the next year was pregnant and began having preterm problems due to uterus structure issues. Went into early labor after a very stressful pregnancy w/ little sleep and lots of anxiety. Birth was over 36 hours and after labor lost lots of blood and hemorrhaged and went into surgery. Drs. sent me home on 3rd day though I was so exhausted and weak and green in color to take care of a preemie baby–I couldn’t even walk. Further weeks of no sleep or adecquate nutrition or help from family sent my health into a tailspin that I have not recovered from 12 yrs. later. I had 2 subsequent miscarriages that resulted in more blood loss and physical trauma and my neck has never recovered from accident resullting in pain and inability to sleep well w/out medication. Prior to all of these assaults on my body and health, I was had a masters degree in physical education and loved to exercise and work in garden and landscaping and was a pretty active person who still knew how to take care of myself and not overdo it and appreciate quiet times and meditation. I was not a type A or overachiever or overworker–I took good care of myself. I didn’t bring this on myself through a personality quirk of some kind but when articles make mention of this tendency, it is no wonder that even my own in-laws and many drs. I have seen, don’t think there is any thing wrong w/ me medically that I cannot overcome through shear desire or not being lazy and just pushing through everything.

  8. tamsyn says:

    Dear Pammuz,

    You stated that you felt the guidelines were unrealistic due to the stress you face in the real world. I sympathize with this BUT I’d like to point out that having stress in your life doesn’t mean that you cannot pace. In fact, that stress means you have to take extra good care of yourself. In the last few years (AFTER getting CFS), I’ve moved house twice, lost my job, got another job, lost a 9 year relationship, met someone new and got married,helped my son go through a crisis and a diagnosis of Bipolar, helped take care of him on disablitiy, and continued with my career. I have two aging parents,and a sister on disability, and am living on a poverty level income. Through all this, I have paced…and I am getting gradually better. Last year I was the healthiest I’ve been in a decade. So you can do it too! We all have stress in our lives; learning how to pace throguh the stress is what recovery depends on. Hope this alternate point of view helps! Take care of yourself — you’re worth it! tamsyn

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