The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Tips on resting for M.E. patients

This paper is in two parts:

See the Downloads section below to download this paper in Word or PDF format.

 

Tips on resting for M.E. patients: Part 1

As explained previously in HFME papers such as The importance of avoiding overexertion in M.E. plus Assisting the M.E. patient in managing relapses and adrenaline surges, Myalgic Encephalomyelitis (M.E.) patients have strict limits on how active they can be and must strictly avoid overexertion.

If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 - 48 hours later, as well as the very real potential for repeated or severe overexertion to prevent significant recovery, cause disease progression or even death.

It is very important that M.E. patients stay within their limits. Unfortunately, M.E. patients may find staying within these limits all of the time very difficult for a number of reasons. This paper gives M.E. patients some practical tips and guidelines on resting and on avoiding overexertion.

 

The importance of the 80% rule

The idea of the 80% rule is to work out how much you can do every day without becoming in any way sicker, and then do only 80% of that. To have each day the same activity-wise is the goal. Avoid adrenaline surges and crashes where you can operate outside your normal ability levels for a hour or a day or even weeks or months but then spend a long time after much sicker; weeks, months or years or longer.

Avoiding overexertion but living right up to your limits is essential, but it is not enough. Getting some real rest is important too. Your body needs energy to heal and without any metabolic energy to spare, healing will be very slow.

 

Forced overexertion and the M.E. patient

Patients with M.E. are also often forced to overexert themselves just to get through each day and in order to get the welfare payments they are entitled to (and need to have to survive) and to try and get some basic medical care.

If you are absolutely forced to operate outside your limits sometimes, or quite often, due to not having the basic care and support you need, my sincere commiserations. Just do the very best you possibly can and all the best with your support level improving in the future.

 

Tips on avoiding overexertion and resting as much as necessary

Instead of doing a task until you become too ill to do it anymore, try doing the same task for smaller periods of time, interspersed with rest periods. You might find that you can read for an hour all at once, or if you read for 15 minutes and then rest for 15 minutes you might find that you can read for an hour and a half, and you may feel less ill afterwards and even remember more of what you read. Stopping a task regularly for significant rest breaks also makes it less likely you'll build up a big adrenaline surge to accomplish a task.

Switch tasks often. Instead of reading all day, and then spending the next day on physical tasks, try to alternate different types of tasks. Of course in M.E. avoiding overexertion is not just about physical overexertion. Cognitive, sensory and orthostatic overexertion (being upright) can cause the exact same, or worse, problems. Too much bright light and noise, sitting, thinking or reading can make you just as ill as too much physical activity and so these types of activities must be kept within your own strict limits also.

Modify tasks, and get help with tasks if you can. Lie down to use the computer, lie down to watch TV or read, chop your vegetables lying down, and so on. Even if you can do something standing up, do it lying down and use the extra cardiac function you save on something more fun or necessary.

Choose comedies, dramas and documentaries when you watch TV, rather than shows designed to excite and get adrenaline pumping. If you can, listen to TV shows but don't watch them, or close your eyes now and then while you have the TV on and always mute the ads.

Think about all your priorities, and realise that if you have been overexerting something WILL have to give and you will have to save your abilities for just those few things highest on the list, at least for now. But it is worth it, as doing otherwise means you will have to give up even more in the long term.

 

What is an adrenaline surge and how does this affect M.E. patients?

People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline released when the body is put in physiological difficulty - albeit at the cost of severe and prolonged worsening of the illness afterward. These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or 'afford.' But the interest rate is extortionate.

Signs that you are overexerting or running on adrenaline may include the following:

  • Very fast, loud and continuous talking is a sure sign of an adrenaline burst. You may also sit up or stand for longer than usual (without realising you are doing so) or get 'hyper' and fired up to undertake tasks that you would usually be too ill to do. Sleeping and resting is very difficult as one feels 'wired' and very 'unfatigued.'
  • A lack of facial expression and 'slack' facial muscles and/or extreme facial pallor.
  • A burning sensation in the eyes and/or an inability to tolerate visual stimulus and to keep the eyes open.
  • Excessive water drinking (to try and boost blood volume) and excessive hunger and a desire for sugar- or carbohydrate -rich foods.
  • Sweating or shortness of breath after minor exertion or a sudden loss of the ability to walk.
  • Visible shaking of the arms or legs or twitching facial muscles.
  • Paralysis and weakness in the muscles or an inability to move, speak or understand speech.
  • Very distinctly pink, purple or blue feet or legs, with white blotches, after standing or sitting for too long.
  • Severe headache or feeling of pain or pressure at the base of the skull. This may also be accompanied by pain behind one or both eyes or ears, or blackouts.
  • Sudden onset ringing in the ears or loss of hearing or sore throat and painful glands in the neck.
  • During and after overexertion your pulse will very often become much faster (150 bpm or more), your blood pressure will become lower and your temperature may rise and you may feel very hot.

When you are sure you are improving and are suddenly able to do tasks again which you have not been able to do for many months or years - and this occurs right after a very big task has been completed such as a house move or a very taxing trip to the doctor, it is almost certainly an adrenaline surge and not a real improvement. Improvements just do not occur after overexertion in M.E. this way. The big task was well beyond your limits and so the body has released a surge of adrenaline just to cope. Unfortunately, this type of lower-level but prolonged adrenaline surge can often be less easily recognized for what it is.

Tasks done using adrenaline surges come at a very high cost long-term and so must be strongly discouraged and absolutely never encouraged. Friends, family members and carers should be advised not to instigate conversations with a patient when they are trying hard to come down off an adrenaline surge as this can undo hours of resting. If possible, they make a set time to talk to the patient so that they do not have to be in 'on' and potentially ready to talk for hours at a time as this is almost as taxing as actually talking for many patients.

The only way to stop an adrenaline surge is to make sure that the body is no longer placed in physiological difficulty. This often means 3 days or more of absolute rest. While some of the effects of overexertion are immediate there are also secondary relapses that are delayed by 24 - 72 hours.

Ideally we need to try to live long-term only completing tasks which can be done daily or every second or third day without causing relapse.

 

How do I know if I am resting enough?

Try resting significantly more for a week and see which symptoms improve, if any. If you feel a lot better, you may still be doing too much in your usual routine and may need to cut back.

You may also choose to have an extra intensive rest period lasting a day, or three days or a week to try and give your health a boost if you've been having a very bad time of it recently. Intensive rest therapy in M.E. is not fun, or easy. It's anything but, as anyone with M.E. will tell you. But it is unfortunately absolutely necessary.

 

Can and should I do stretching exercises? What about deconditioning?

Stretching exercises may be beneficial for the M.E. patient as they help improve circulation and can help to reduce pain and stiffness and increase flexibility, but only:

  • If you aren't wasting ability you could use on something far more useful or fun, and:
  • If you are not severely affected and are well enough to do it without any payback. If you can't then it is counter-productive.

For patients that have experienced significant recovery light weightlifting may also be useful, but again, only if the two conditions listed above are met.

Stretching exercises even if they seem mild and fairly effortless can still cause severe relapse and disease progression in the M.E. patient that is not well enough to cope with them.

Remember that it is absolutely true (as Dowsett and others have said) that just doing the basic tasks of living IS ENOUGH by itself to stop significant deconditioning. This includes walking to the bathroom a few times a day, getting dressed and eating your food and so on - all those little tasks use all sorts of different muscles.

Do not worry about deconditioning as when you can do more you will do more but trying to do things that you aren't well enough to do to avoid deconditioning is a sure way to make your condition worse. The extreme scaremongering about deconditioning in M.E. is about politics subverting science. It is an unscientific sham involving 'medically unexplained fatigue patients' and not actual M.E. patients at all!

M.E. patients can't do things because they are ILL, and they have serious metabolic, homeostatic and cardiac insufficiency issues. It is not because they are merely 'deconditioned.' M.E. is also an acute onset disease and the idea that deconditioning could happen from one day to the next is unscientific to say the least.

 

What happens when my condition improves and I can start doing a bit more?

Over time, when/if you are able to do a little more in a day with no payback, you will just know, and can then adjust your activity levels accordingly. You will know because you will feel much healthier and find tasks which used to cause a small amount of strain, now cause no problems at all and you'll start doing tasks for longer and longer periods before you're even aware that you are able to do so.

Speaking as someone that is slowly improving month by month, it really is such a natural process to slowly start doing more and more small tasks that you can now 'get away with.' It isn't something you have to plan, you just know when you are finally well enough to do something at a time when you would normally be resting. You can feel the difference in your body and the difference in how you feel after doing certain tasks. Listen to your body and remember to only do these new activities a few times a week to start with rather than every day, so as not to jeopardise your hard won improvements by accidentally overdoing it.

Nobody with M.E. will ever do far less than they are physically capable of doing. It would just go against basic human nature to do so, having lost so much dealing with such a life-destroying and life-limiting disease. Thus it is just NOT a problem. The problem is always patients doing too much, if anything, that is just human nature too sadly. Resting so much is incredibly difficult.

 

More information

Tips on resting for M.E. patients: Part 2

Avoiding overexertion is so important when you have M.E. Patients must limit physical overexertion but also cognitive and orthostatic overexertion and excessive sensory input. In addition to these, there are also others ways in which we can help to reduce the workload of the body and so increase the amount of extra cardiac function available to help our bodies work properly.

Paying attention to these other factors may result in a slight reduction in disability levels, reduced symptom severity, reduced pain and suffering as well as a greater chance that the body will be able to heal some of the damage inflicted by the disease.

The information in this paper is to some extent 'controversial' but is included for those patients with an interest in this type of medicine. The details of it are based on some conclusions I came to recently in quite an organic way due to my own knowledge of M.E. and all the many books and articles I have read on it as well as a lot of what I have read about the way the body burns calories as well as approaches to healing which focus on the 'total load' principle and holistic and environmental medicine generally.

 

The theory

It is well-known that being more active only increases our daily calorie expenditure a tiny amount. A man that weighs 250 pounds and has a base-level calorie expenditure of 2500 calories daily will only burn 3 extra calories if he one day climbs a flight of stairs in addition to his usual more-sedentary activities. If he climbs 20 flights of stairs he will only expend an extra 60 calories.

M.E. patients, many of them, would be made very ill by climbing one set of stairs, let alone 20 of them - if they were able to climb any stairs at all.

But if doing this small extra task can make us ill, and if it uses so little of our daily percentage of calories and energy, doesn't it logically follow that in addition to trying to minimise voluntary physical, cognitive and orthostatic overexertion and sensory input we should also be trying to minimise the far larger load of all the involuntary tasks our body does each day just to keep us going?

In other words, if we don't have the metabolic energy or cardiac output to cope with something that has a very small energy cost, then of course we don't have enough for all those other very energy intensive tasks the body does all by itself either. This is part of why we have poor liver function, reduced cardiac output and poor immune function and so on, with M.E. All of our bodily systems are not able to function properly in part due to a lack of metabolic energy (and also because of various other at least equally important homeostatic, CNS, ANS, endocrinological, neurological and other dysfunctions).

So the question becomes - can we reduce the load on the body further in addition to 'just' trying to minimise voluntary physical, cognitive and orthostatic overexertion and sensory input. I think we can and many experts in holistic and environmental medicine would agree.

 

What are some basic principles of this type of medicine?

There are 3 basic principles:

1. Get the good stuff in. Give your body the fuel and tools it needs to work at an optimum level. Good food, nutrients and all the proper vitamins, minerals and antioxidants. Make sure you aren't deficient in anything important as the different nutrients all work together.

2. Get the bad stuff out. Make sure your body can detoxify out all the toxic substances and toxic by-products of bodily processes properly. Stop as many toxins from getting in in the first place, and do a detoxification program to get rid of the ones you have. Stop doing or eating the things which cause inflammation and have a pro-oxidant effect, and so on.

3. Reduce your body's total load. The total load concept is that lessening the body's overall burden/work and stress level in one area, will improve health generally and improve the body's ability to heal because the body's total load (or burden) is lessened. Fixing one problem frees up bodily resources that can be then be used to help other parts of the body function getter or to heal.

As Andrew Saul PhD explains,

Good nutrition and vitamins do not directly cure disease, the body does. You provide the raw materials and the inborn wisdom of your body makes the repairs. Someday healthcare without megavitamin therapy will be seen as we today see childbirth without sanitation or surgery without anaesthetic.

 

Reducing the 'total load' of the body

Ways we might start to reduce the burden on our bodies include the following:

1. An enormous amount of the energy our bodies use is focused on digesting our food. Taking digestive enzymes with meals reduces the workload of the pancreas and can also increase the amount of energy we get from the food we eat.

2. Taking Betaine HCl with meals, if your stomach acid levels are low, increases the amount of energy you get from your food and makes fats and proteins less work for the body to digest.

For some people these supplements may be enough to improve digestion significantly, but if problems remain then they should be investigated further. Good gut health and the proper assimilation of food nutrients is essential to healing.

3. Eating foods that you can digest easily, as opposed to foods that your stomach has problems with, means that your body has to expend less energy digesting your meals. Cooked foods may be digested more easily than raw foods, soaked and dried nuts and seeds are digested more easily than raw nuts, meats that are not overcooked are easier to digest than overcooked meats that have become tough, and so on. If chewing is difficult one can also reduce the body's digestive workload by whizzing foods up in a blender and/or taking in some of your daily vegetable intake in juice form.

Reducing chemical additives in foods is also important as these foods create extra detoxification work for the liver. If a person with M.E. spends the day resting as they know they need to but during the day also eats a packet of potato chips and a can of diet soda or soft drink then they are in effect giving with one hand and taking with the other. While doing this is better than overexerting and eating poor quality food, it amounts to only giving the body a partial rest at best.

4. Eat some of your daily fat intake as coconut oil as this oil is easily digested compared to other oils and does not have to be broken down by the liver.

5. Take probiotic supplements daily to improve your digestion and make sure you have as many good bugs as possible helping your body digest your food. It can also be very helpful to add fermented vegetable dishes such as sauerkraut to your meals as these foods are rich in enzymes and probiotics and are very easy to digest themselves as the fermenting process 'pre-digests' them in a way. A serve of probiotic rich kefir (a yogurt-like drink made from milk or coconut water) or homemade 24 hour yogurt can also serve the same purpose when added to a meal.

6. If your blood sugar levels can cope with it, don't force yourself to eat if you don't feel like eating until much later in the day than you would normally break your nightly fast. Missing a meal saves your body a lot of metabolic energy and lets your body use this energy for healing instead of digestion. Your body must have access to spare metabolic energy if it is to heal - healing is hard work!

7. Take the form of each supplement that your body has to work the least to absorb and assimilate. Your body has to work hard to convert many nutrients to their active forms. This process uses up bodily energy but also uses up bodily resources such as other vitamins and minerals. So wher possible take the activated form of a nutrient or a real food sourced nutrient. For example, take activated folate instead of standard folate supplements, take a sublingual and coenzymated B complex product or a liposomal B complex product rather than a B complex tablet, take liposomal vitamin C instead of vitamin C tablets, take nascent iodine instead of iodine tablets, take fermented cod liver oil instead of isolated vitamin A and D supplements. Where appropriate you may also take some supplements in powder form rather than in capsules, and squeeze out and ingest the contents of gel capsules rather than consuming the whole capsule.

8. Try to avoid nutrient deficiencies. Your body works best and most effortlessly when it has enough of all the basic components it needs to run properly. A deficiency in even one vital nutrient can place extra stress on all sorts of different bodily systems and set up a type of domino effect.

9. Cut right down on the amount of chemicals you are exposed to. The liver has to work harder every time you are exposed to or ingest a harmful chemical compound, and this process of detoxification also uses up valuable nutrients that the body has spent energy producing, such as glutathione.

This means changing the types of cleaning and personal care products you use and looking for less or non-toxic alternatives to many different products.

Remember that where you spend your time matters here as well. Chemicals can be taken in orally and through the skin but also through the nose. If you walk through a shopping centre of supermarket for a 5 minutes you'll have used up far more energy and nutrient reserves than if you'd walked for the exact same time period somewhere that isn't overflowing with breathable toxic chemicals. If you can smell it, it is in your bloodstream Dr Sherry Rogers explains and your body has to then work hard to detoxify it.

10. Cut right down on the amount of allergens you are exposed to. Your body has to work harder every time you are exposed to or ingest something you are allergic to. This process of detoxification or inflammation also uses up valuable nutrients. Find out which foods you are allergic to and avoid them.

11. Buy a decent water filter. If you don't your BODY will have to act as your water filter which again uses up a lot of metabolic energy and nutrients unnecessarily. Make sure to drink adequate water as well.

12. Start a detoxification regime to rid your body as much as possible of those substances that interfere with normal enzyme reactions in the body and other bodily processes. This might involve the use of various nutrients or the use of an FIR sauna.

13. Make sure to always avoid constipation. A long 'transit time' for faeces puts extra stress on the body and the body's detoxification systems.

14. You might consider having a daily or weekly enema to reduce the load on your digestive system and reduce the amount of detoxification work the body has to do.

15. Don't suppress symptoms unnecessarily if you are trying to heal. This is so important. Symptoms are your body's attempts to heal and when you stop the symptoms you also stop the healing.

For example, one might take a steroidal nasal spray to stop allergy symptoms such as runny nose, sneezing and watery eyes. But the sneezing and watery eyes and streaming nose are the body's ways to try and get harmful substances out of the body as soon as possible and to water then down so they do less harm to sensitive tissues. The nasal spray may stop the symptoms but it does nothing at all to treat the actual cause of your symptoms. So using this drug creates a lot more work for the body as (a) Your body now has to cope with an allergen onslaught without using all the coping mechanisms it has developed to try and minimise the impact of the problem, (b) Your body now has extra work to do in detoxifying the drug you have taken and (c) Without the cues your body gives you of sneezing and watery eyes, you're a lot more likely to have an even higher exposure to allergens than you would otherwise.

A better solution would be to first of all do all you can to minimise your exposure to the things you are allergic to. You might invest in an air filter or dust mite mattress protectors and dry your clothes indoors rather than outside where they would collect pollen. You might keep pets out of the room you sleep in at night and brush them often (or trim their hair to be shorter) so that they don't shed so much hair all over the house, and wash your hands after touching them. You might make your bedroom an allergen free zone containing only the essential things you need to get through each night. You could also help by boosting your body's supply of nutrients such as vitamin C, using a saline nasal spray throughout the day and using a netti pot to more quickly flush out your sinuses when allergy symptoms strike. Insufficient vitamin C makes suffering with allergy symptoms far more likely, as do other low nutrient levels.

Don't automatically lower a fever with drugs, as fevers are one of the most common healing reactions that are seen and also play an important role in healing when we have the flu. Fevers should only be treated when medically necessary.

The body doesn't just stupidly produce all sorts of symptoms for no reason. These symptoms have a cause and a purpose and may be playing an important role in stopping you from becoming more ill. The body can heal from all sorts of things if given the right tools and the right environment and this incredibly complex system - when properly resourced - is far more powerful than any drug.

If possible make yourself aware of the difference between the symptoms of a disease and healing reactions by reading the Health, Healing & Hummingbirds website

16. Take good care of yourself generally. Have good dental hygiene, eat good quality food (buy organic and free range chicken and eggs and organic grass-fed beef etc. if you can), minimise germ exposure as much as possible (by not seeing friends when they are ill, not by using toxic antibacterial sprays and wahses), don't let your feet become cracked and prone to infections, practice good sleep hygiene, avoid hypoglycaemia, don't use harsh and drying soaps, don't smoke, don't drink alcohol, treat and clean any wounds you have properly, use good food hygiene, go outside and get some fresh air and sunshine for half an hour a day or more when you can, avoid sunburn, and so on. Don't let your body waste any of its resources on anything that you could have avoided making it have to do, so it can put as much as possible into your healing from M.E.

17. Consider taking proteolytic enzymes systemically. Taken on an empty stomach these enzymes free up bodily energy and enzyme making ability for other healing related tasks.

18. Don't go overboard on non-essential supplements. More is not better. Your body has to work to digest all those capsules and also to detoxify the substances in them. Take those supplements that your body needs to function before spending lots of time and money on herbs and other substances that are non-essential. It is no good taking extras like ginkgo or ecchinacea if part of why your body is having problems working well and healing is that you are severely deficient in vitamin B6 and magnesium and these deficiencies are stopping all sorts of important enzyme reactions from happening that are essential to good health, for example. The key to supporting the body's task of healing is not new and ever more exotic or specialised drugs or herbs, but a focus on all the nutrients we need to live and for our bodies to function optimally and to heal as much as is possible.

 

All these little things add up. It makes sense to do as many of them as you can in addition to working hard to minimise voluntary physical, cognitive and orthostatic overexertion and sensory input. It makes sense to at least do some of the easier ones, even if the idea of acting on all of the suggestions given feels very overwhelming.

Again, paying attention to these other factors may result in a slight reduction in disability levels, reduced symptom severity, reduced pain and suffering as well as a greater chance that the body will be able to heal some of the damage inflicted by the disease. Your body must have access to spare metabolic energy (and all the necessary nutrients) if it is to heal. Healing is hard work!

 

More information

For more information on many of the topics discussed in this paper please see the new Health, Healing & Hummingbirds website by Jodi Bassett.

 

References

This paper is based on the information in books on orthomolecular, holistic or environmental medicine from experts such as Dr Sherry Rogers, Dr Lawrence Wilson, Dr Abram Hoffer and many others. See the Health, Healing & Hummingbirds website for book recommendations and reviews.

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

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