Dr. Martina Melzer, published: 02/21/2022, updated: 02/18/2023

Nutrition

Gut health

Movement

Sleep

Pacing

Stress Management

A healthy lifestyle is important for everyone who wants to stay healthy or become healthy. From my point of view, especially nutrition, exercise, sleep, a healthy gut, pacing ("know your limit") and stress management play a central role. Especially with body-mind syndromes like ME/CFS, Long Covid, chronic Lyme disease or fibromyalgia, these factors are out of balance. This means stress for the body. And that's what you want to reduce in order to get healthy again.

Our body needs macronutrients - protein, fat and carbohydrates - to produce energy. But it also needs micronutrients - vitamins, minerals and trace elements. If it lacks nutrients, for example because the intestinal mucosa is impaired or we eat an unhealthy diet, then the small energy power plants in our cells, the mitochondria, do not work properly. This leads to fatigue.

In some people with fibromyalgia, for example, a deficiency of amino acids, magnesium, selenium and B vitamins could be detected. Deficiency symptoms can also occur in people with ME/CFS. For example: too little vitamin C, B vitamins, sodium, magnesium, zinc, L-carnitine, tryptophan, fatty acids and coenzyme Q10.
 
Our food can also rob us of energy by causing blood sugar to spike and then drop rapidly. So first there is an excess of energy suppliers available and then suddenly they are missing. In this way, we go through a roller coaster ride of brief "highs" and then sustained "crashes." Particularly low blood sugar also triggers the autonomic nervous system. The excitatory part, the sympathetic nervous system, is activated. The body goes into a state of alarm - this costs a lot of energy and puts the nervous system out of balance. Stimulants such as caffeine have similar effects.

I don't know exactly how many diets there are that are supposed to help with chronic fatigue, but there are certainly a lot. Among them: Paleo, Ketogenic, Autoimmune Paleo, Anti-Inflammatory Diet, No Gluten, No Dairy, Medical Medium, GAPS Diet, Specific Carbohydrate Diet, etc.

Common to most is that we should avoid foods that are not good for us, promote inflammation and keep the immune system busy. The culprit is almost always considered to be gluten, which is found in wheat, rye, barley, spelt, emmer and kamut. So-called amylase trypsin inhibitors (ATI) could also play a role here. Second, dairy products. Then it gets colorful: grains yes or no, eggs yes or no, vegan, vegetarian or regular animal protein? What about nightshade vegetables, legumes, pseudocereals, starchy vegetables? How many carbohydrates, fat, protein?

The recommendations contradict each other and you can go sheer crazy. Alex Howard aptly summarizes this dilemma in his book, „Decode your fatigue“: We're all different. One person's medicine is another person's poison. No one can tell how you'll react to a food but you. So once again, you have to become a detective yourself and listen to your body.

Have you also taken nutritional supplements in your desperation? Maybe even a lot of them? Welcome to the club. As described at the beginning, some people with ME/CFS or the symptom fatigue have nutrient deficiencies. In that case, vitamins, minerals and trace elements in pill form can actually be useful. Ideally, however, you should discuss this with your doctor. In this way, you can also determine a deficiency and find a suitable preparation in a suitable dosage.

In all other cases, the following applies again: It can totally help, it can have no effect at all, it can even harm you. Food supplements interact with food and drugs. They can interfere with each other's absorption in the intestines, form insoluble complexes, etc. People with cancer should be especially careful with vitamin pills.

There are many studies on fatigue and supplements. However, they come to contradictory results. Scientists mostly agree that it is best to consume all important nutrients through a balanced diet and not to add individual substances.

A balanced and anti-inflammatory diet is composed of a lot of vegetables, some fruit, omega-3 fatty acids, fiber and fat, protein and carbohydrates in individual tolerance.

• As few processed foods as possible, ideally you still recognize the basic product
• no fast digesting carbohydrates to avoid the blood sugar roller coaster
• As little caffeine as possible to avoid irritating the stress nerve (sympathetic nervous system) and to spare the adrenal glands
• Eat the rainbow: Lots of vegetables in different colors every day, including leafy green vegetables and sulfur-containing vegetables like cabbage as often as possible; fruits contain lots of healthy pigments and antioxidants, but don't eat them in raucous amounts because of the fructose
• Locate potential intolerances and allergies and avoid the triggers for as long as you react to them. With allergies this can be for life, with intolerances the tolerance threshold often changes again.
• At every meal, fat, protein, carbohydrates - depending on individual tolerance. Whether the protein is best from animal or plant sources is again something very individual
• chew thoroughly (until a porridge is formed in the mouth), eat in silence and do not talk too much, don't drink too much directly with the meal, but between meals drink enough, preferably water and unsweetened tea
• whether one or six meals a day is best for you, you have to find out for yourself. Many doctors and scientists recommend that you take a break from eating for 12 to 16 hours a day (intermittent fasting), real fasting can be extremely beneficial for one person, but for another it can be harmful
• as much organic as possible

The intestine not only digests our food. It fulfills many other tasks. For example, it houses 70 to 80 percent of all immune cells. This makes sense because many pathogens and other potentially harmful substances from the environment enter the gut. Before food components are absorbed from inside the intestine into the intestinal mucosa and make it from there into the portal circulation and ultimately into the bloodstream, they must be tested. Are the food components good, bad, useful or dangerous, welcome or not welcome, do they need to be killed? These decisions are made by the gut immune system - at every meal we eat.

That's why every meal also triggers a tiny inflammatory reaction in the gut that we normally don't notice. If there is a stronger or repeated inflammation, we do notice it. For example, as diarrhea, exhaustion, a flu-like feeling. If the intestine is constantly a little inflamed, it restricts digestive activity, can contribute to nutrient deficiencies and trigger fatigue. Inflammation can propagate through the body, affecting other organs, weakening mitochondria. These are our small, vital energy power plants. The formation of hormones can also change. For example, imbalances of thyroid hormones, sex hormones and stress hormones occur. All of this contributes to chronic fatigue and many other symptoms.

Inflammatory reactions in the gut can also cause inflammation in the brain. This probably happens via the vagus nerve, the calming part of our autonomic nervous system. It registers that something is wrong in the gut. Inflammatory messengers, called cytokines, and immune cells trigger the vagus. Tell it to watch out for danger, intruders, problems. The vagus nerve transmits the information to the brain, triggering, among other things, the so-called sickness behavior: We are exhausted, tired, want to lie down, may have a fever, aching limbs, are not in a good mood. Studies indicate that an intestinal inflammation is mirrored by the brain, so to speak, and that immune cells and cytokines are also released there. In addition, activated immune cells from the intestine can migrate into the central nervous system, which could possibly play a role in the development of multiple sclerosis.

If our immune system is somewhat out of balance, it sometimes can no longer distinguish between good and evil. A food component or pathogen may look similar on its surface to the body's own tissue. The immune cells directed against these surface components not only react to the foreign substance, but also attack the body's own tissue: an autoimmune reaction develops. In diseases such as celiac disease, ulcerative colitis, Crohn's disease, but also multiple sclerosis and rheumatoid arthritis, such processes play or could play an important role. If, on the other hand, the immune system is too weak or exhausted, one becomes more susceptible to infections.

The intestinal flora, also known as the intestinal microbiome, influences a wide variety of bodily functions. It consists of a large number of bacteria, but also of fungi, viruses, parasites and other single-celled organisms. There are very useful, helpful and for us indispensable microorganisms. They help to digest food, influence our mood and sleep, seal the intestinal wall against harmful microorganisms, form short-chain fatty acids as an energy substrate for the intestinal cells, produce brain messengers and have an anti-inflammatory effect.

In addition, there are intestinal inhabitants that tend to promote inflammation and can cause trouble if they multiply unintentionally. Then a dysbalance occurs that can lead to inflammation in the intestines and ultimately in the whole body. And that, of course, is accompanied by exhaustion.

A disturbed gut flora seems to play a role in many diseases, for example in autoimmune diseases, in ME/CFS, in fibromyalgia, depression, anxiety disorders, Parkinson's, etc.... At present, however, it is not yet possible to say exactly whether the altered intestinal flora is the cause or consequence of these diseases. Scientists have only been able to establish a connection.

There is a lively exchange between the gut and the brain. The intestine has its own nervous system, the intestinal nervous system. Just like the autonomic nervous system, it also functions involuntarily. That is, without our being able to consciously influence it directly - only indirectly. Science is not yet in agreement as to whether the intestinal nervous system is an autonomous system in its own right or should be understood as part of the autonomic nervous system, which is made up of the activating part, the sympathetic nervous system, and the calming part, the parasympathetic nervous system.

The parasympathetic nervous system consists mainly of the vagus nerve. It originates in the brainstem and then travels down the throat along the esophagus through the heart, into the stomach, intestines and other abdominal organs. It and the gut nervous system are constantly communicating with each other - this is the gut-brain axis. The gut is an important feeler to the outside world. Food, toxins, pathogens, plastic particles, etc. enter it. But also our emotional world, our emotions have an effect there or maybe even originate there. The intestine produces important brain messengers, for example serotonin and dopamine, which also play an important role in the central nervous system and the limbic system (our emotional center). Ninety-five percent of the serotonin in the body is produced in the gut. The gut nervous system is a reflection of the central nervous system - or vice versa.

The vagus nerve gets everything that's going on in the gut. Whether the immune system is activated, the intestine (or we) are not in a good mood, the intestine senses danger. The vagus nerve hears this and passes the information on to the brain. 80 percent of the information that this nerve passes on comes from our gut. Only 20 percent it passes on from "upstairs downstairs." The gut and vagus affect our mood, behavior, actions, sense of illness, exhaustion, pain, and much more. You simply cannot underestimate the gut.

If the gut-brain axis is disturbed, it can lead to far-reaching problems in the body. Not only irritable bowel syndrome, but also inflammatory processes in the intestine, brain and other organs or tissues. The dysfunction also has an emotional impact: Some research groups suggest that depression and anxiety disorders may arise in the gut when the gut-brain axis is out of balance, as is the gut flora (see above).

That emotions are closely linked to the gastrointestinal tract is illustrated by phrases such as "my bile comes up," "I could puke, I'm so disgusted," "I have a lot to digest," or "love goes through the stomach." And the gut feeling, the sixth sense, is not nonsense, but is emblematic of the intestinal nervous system and the vagus. Mental or physical trauma upsets the gut nervous system and autonomic nervous system. The body is stuck in a perpetual stress response. It is on sympathetic continuous fire. The counterpart, the vagus, is blocked. However, there are other variations on this. For example, part of the vagus nerve may be too active, or the sympathetic and parasympathetic nerves may be stuck on "on" at the same time. This also explains why stress and trauma affect digestion so much.

IBS is now considered primarily a disorder of the gut-brain axis. Many people with ME/CFS, fibromyalgia, depression or irritable stomach have a parallel irritable bowel syndrome. What exactly lies behind the syndrome is not yet entirely clear. The intestinal nervous system, as well as the communication between the intestine and the brain are out of kilter, the intestinal flora is often altered, the intestinal barrier becomes more permeable and there are probably tiny inflammatory reactions in the intestine. However, as with ME/CFS, I am many. Not everyone has the same irritable bowel. According to the German physician guidelines, all the food intolerances that lead to irritable bowel symptoms are more of a differential diagnosis, i.e. they are to be distinguished from the "real" IBS.

I come across this term very often. One could speculate that with this syndrome the intestine becomes as full of holes as Swiss cheese. But of course this is not true. Rather, leaky gut is associated with increased permeability of the intestinal mucosa.

The intestinal mucosa is always permeable to some degree, otherwise we would not be able to absorb nutrients through it. But in some people and various medical conditions, the connections between intestinal cells are somewhat less dense. Therefore, larger molecules from food, pathogens or other origins also enter the mucosa and can trigger an inflammatory reaction there, depending on individual sensitivity. The intestinal immune system is activated and this can manifest itself with symptoms.

As is so often the case in science, opinions differ as to how far the consequences of a "leaky gut" can reach in the body. Some say: Does not exist. Others say: limited to the gut, with bloating, flatulence, diarrhea, constipation, bloating. Some researchers and investigators suggest that increased intestinal permeability may worsen the condition in diseases such as ME/CFS, MS or rheumatoid arthritis. And may also exacerbate symptoms such as headaches, joint pain and fatigue. It is also unclear whether the syndrome is a cause, consequence or concomitant. In contrast, a more permeable intestinal wall is clearly present in Crohn's disease and ulcerative colitis.

During my own crazy research over the past few years, I've learned: you can be sensitive to all kinds of foods. Whether that's an intolerance or an allergy. And what you can tolerate or not is a highly individual thing.

There are people who react to gluten or amylase trypsin inhibitors from wheat, for example. Others get intestinal problems or discomfort elsewhere in the body if they eat too much lactose, fructose, sorbitol, histamine, oxalate, salicylates or FODMAPs (fermentable oligo-, di-, monosaccharides and polyols). However, dairy protein, soy, nuts, eggs, fish, celery, cabbage, legumes, grains and nightshade vegetables such as peppers and eggplant can also cause problems.

More on FODMAPs from the creator of the low FODMAP Diet:
https://shepherdworks.com.au/disease-information/low-fodmap-diet/#wrapper-wmw5541ba420746f

Having had quite a bit of intestinal problems (and still having some), I went almost crazy with foods. I tried all kinds of diets, gave up a wide variety of foods, kept a diary. Spent an awful lot of money on intolerance tests that didn't help me much after all. I think some of you know this too. Ultimately, giving up dairy and wheat products helped me the most, eating FODMAPs in moderation and dosing foods too high in fiber well. And: reintroducing meat and drinking bone broth.

Unfortunately, as I said, it's very individual. That means you have to become a detective again and find out for yourself what you might not tolerate by abstaining for a limited time. Important: Don't avoid too much for too long. Our gut loves variety and the body gets all the important macro and micronutrients it needs from a wide variety of foods.

SIBO, or small bacterial overgrowth, has also become such a buzzword. It means that too many bacteria have settled in the back of the small intestine, which actually do not belong there to this extent. This can trigger a number of intestinal problems, exhaustion, as well as other ailments. As usual, it is controversial whether and how to treat the faulty colonization. With specific antibiotics or by temporarily avoiding carbohydrates? My message here is: If you have irritable bowel symptoms and nothing has helped so far, try to find a gastroenterologist who knows about SIBO and can test you. Then it can be discussed about the appropriate therapy.

The same applies to an overgrowth of Candida fungi in the colon. Yeast fungi are present in every healthy colon and are part of our normal intestinal flora. They are not bad per se. However, in some people, candida yeasts can multiply explosively, upsetting the intestinal flora, triggering inflammation and thus causing problems. This can be particularly dangerous for immunocompromised people. The best thing is to find a "smart" doctor who is familiar with this and then see what happens.

• Eat the rainbow: As many colors as possible in the vegetable pan. The intestine loves variety, and strongly colored fruits and vegetables are particularly rich in useful secondary plant compounds. But also cabbage and green leafy vegetables should not be missing.

• Eat as much unprocessed food as possible. Ideally, you can still recognize the basic food. Otherwise: preferably a maximum of five ingredients on the ingredient list.

• Eat fermented foods like (vegan) yogurt, sauerkraut and kimchi. In it many lactic acid bacteria are found, which belong to the healthy intestinal flora. Whether probiotics in pill or powder form help varies again from person to person. I've tried a lot of them without significant success, but that doesn't have to be the case for you. If, then I would advise a preparation from the pharmacy that really contains many germs and a mixture of different. Probiotics, however, are a science in themselves.

•  Just as important as probiotics are prebiotics. These are ingredients in foods that serve as food for the good intestinal bacteria. For example, they love inulin, FODMAPs (which is why a permanent low FODMAP diet is not good from my perspective), and other special carbohydrates found in legumes and whole grains, for example.

• Dietary fiber is important overall for intestinal health and digestion. Therefore, eat whole grains, legumes, lots of vegetables and some fruits, nuts, seeds regularly and according to individual tolerance. I myself have additionally experimented a lot with psyllium and flaxseed. Psyllium was nothing for me, but almost ground flaxseed was, and more recently acacia fiber powder.

• Fasting and intermittent fasting are good for the intestines, because then they have time to clean themselves, reject old cells and form new ones. However, it is not suitable for everyone.

• Sleep is important for good digestion.

• Daily relaxation, rest, a nap, yoga, meditating, stretching the stomach once in a while - it likes that.

• In some cases, glutamine can help rebuild a damaged intestinal lining. The amino acid is in bone broth, for example. It's helped me a lot, even though I'm not actually that excited about it. Organic is important here.

Yes, I think so. An ME/CFS specialist once told me that one should not completely forgo exercise, but should do as much as possible - but without overexerting oneself. Otherwise, the problem is that if you don't exercise, your muscles will break down (keyword: deconditioning). In addition, balanced physical activity has a positive effect on the heart and circulation, on the immune system, on sleep, on mood, etc.

However, I also think that you shouldn't force exercise. If the body says: No, I need rest to recover, then you should listen to it. If the body signals: I could do with a bit of exercise, then you can also be physically active.

Under no circumstances would I follow through with an exercise program prescribed by doctors, where it is best to do more every week and meet some kind of goals (keyword: Graded Exercise Therapy). I have done a lot wrong in this regard and harmed myself. It makes much more sense to listen to your body and approach exercise very carefully and cautiously. If you dare to do something more, you test the limits. If you can tolerate it, wonderful. If it was too much, you do less again. If you can even do a little more, all the better. In this way, you can extend your range of activity over weeks or months. A pedometer and heart rate monitor are very helpful.

Also, extremely important: exercise shouldn't be stressful, it should not be done in a tense, anxious state with an inner resistance. That only throws the nervous system more out of balance. In retrospect, I might have been further along in terms of exercise if I had focused on the nervous system first and then approached physical activity bit by bit.

You have to define for yourself what exercise is. What can you imagine now in your current state? What is possible? Exercise doesn't mean jogging, biking, hiking, going to the gym, lifting dumbbells. Movement is so much more. Can you maybe do some light stretching while lying down every day? Is a short walk possible every now and then? Can you do some yoga? Can you use your right and left arms to lift a glass or small water bottle a few times? Can you stretch your body, lift your legs up? Or even go biking, swimming, or a few minutes on a vibration plate?

There are so many ways to move around and stimulate your heart, circulation and lymph a bit, give your organism some oxygen. Again, I recommend a fitness tracker to keep track of your pulse. Measure your heart rate while lying down, sitting, standing, walking, getting up from the bathroom, preparing food, etc. This way you'll know what's strenuous and how. In the Pacing strategy, you'll find links to sites that explain how best to use fitness trackers.

People with ME/CFS, POTS, Ehlers-Danlos syndrome or other autonomic nervous system dysfunctions (dysautonomias) often experience discomfort when standing upright. This also affects the ability to walk without problems. Dizziness, blackness before the eyes, nausea, palpitations and tremors suddenly occur. This has also been observed in Long-Covid.

This is probably due, among other things, to the fact that the blood pressure cannot adjust properly when standing up. The blood pools in the legs and abdomen. In addition, there seems to be too little oxygen in the blood.

The organization Dysautonomia International recommends the following steps (preferably in consultation with a doctor or physiotherapist):

• While lying down, do special exercises that promote blood flow.

• Then rowing with a rowing machine, cycling on a special bike or exercise bike, swimming, strength exercises for calves and thighs, preferably with a heart rate monitor

• Then walking, biking, running - whatever is possible

More info:
https://www.dysautonomiainternational.org/page.php?ID=43

https://drive.google.com/file/d/1t7sWyUKnZHgxgENl6SB9vVPb5thZZ98r/view

Personally, it has helped me to wear compression socks. A fitness tracker has also helped me a lot for a long time. And when I was standing and suddenly had symptoms, I crossed my legs and interlocked my fingers and tensed everything. That promotes blood flow. This was recommended to me by a cardiologist who did the tilt table test. Or: Swing your arms up and to the side and then hold on to a wall or chair and swing your legs forward and back. Or stand up, stay there for a moment and then tense your whole body for a few moments.

Our sleep is divided into different stages, sometimes we sleep more lightly, sometimes really deeply, sometimes our eyes move (REM sleep), sometimes not (non-REM sleep). Approximately every 90 minutes we go through all stages once. After that, we wake up briefly, whether we notice it or not. Deep sleep seems to be particularly important for our recovery and probably takes place in the first four to five hours of sleep. After that, we start to toss and turn more.

During sleep, some of our body systems switch to the pause button to regenerate. But not all of them. Some are highly active, for example the brain. Digestion also runs at full speed, the liver detoxifies, hormones are formed, cells renew themselves, and the immune system fights pathogens.

People with chronic fatigue know this: They sleep 12 hours, get up and feel like dead. Zero recovery, as if they had partied until 4 a.m. or taken sleeping pills with alcohol (very dangerous!). At 10 o'clock they could already lie down again, at noon and in the afternoon anyway, at 8 o'clock they crawl back into bed. That's the bad thing about fatigue: sleep doesn't recover you.

Studies suggest that inflammation in the brain may play a role in this, and sleep phases may also be disturbed. For some people, too much of our body's stress hormone, cortisol, is mistakenly produced in the evening and at night. In contrast, in the morning, when it is supposed to wake us up, there is too little cortisol. A slower breakdown of the sleep hormone melatonin can also make you sleepy in the morning. In part, our internal clock goes haywire, and dysregulation of the autonomic nervous system also messes with our sleep.

Then there's the glymphatic system. Our entire body is permeated by the lymphatic system. It is part of the immune system, transports nutrients, brings tissue fluid to the bloodstream, and rids the organism of toxins. The brain also has such a system - the glymphatic system. Our brain, the nerve cells and the immune cells in the brain, the glia, consume a lot of energy. This also produces a lot of toxins and cellular waste that must be disposed of. This is done by the glymphatic system, among others. If its function is impaired, for example due to sleep disorders, you can feel as if you have Alzheimer's in the morning.

Just as there are an almost infinite number of causes for bad nights, there are also an almost infinite number of possible solutions. Again, become a detective and find out what works for you. It is extremely important for people with fatigue to find more restful sleep!

Some examples that can positively influence sleep:

• Caffeine: Either completely eliminate anything with caffeine in it, or significantly limit it (especially starting in the afternoon) and watch the potential effects for a few weeks. Caffeine, a stimulant, is not only found in coffee, but also in black and green tea and cocoa.

• Day-night rhythm: When you get up, allow yourself some daylight as early as possible or use a daylight lamp. This signals to your organism: hey, it's daytime, time to adjust the body systems. Also during the day you should always get some sunlight. In the evening, on the other hand, it makes sense to avoid bright light with a high blue content. So dim lamps or light candles, activate the blue filter on screens, and it's best to avoid "screen work" altogether. The bedroom should be as dark as possible. If necessary, sleeping glasses can also help. This way, the body notices: Ah, it's getting dark, time to get ready for bed.

• Rest: To get the body into rest and sleep mode, you have to stimulate the calming part of the nervous system, the parasympathetic nervous system. Therefore, scary movies, news, arguments, sports are counterproductive. More helpful is a relaxing book, calm music, mild heat applications, a nice conversation.

• Digestion: A huge topic! Related to sleep, for example, it's important not to eat too late and too much in the evening. Try what works best for you. Consider if a salad or other raw food is not a problem, or your digestive tract works after it - possibly all night. Are carbs good for you at dinner, or do you go to bed with a "noodle belly"?

• Worry and anxiety: big issue too! Our thoughts often prevent us from falling asleep, make us wake up at night and then not find our way back to sleep. Again, everyone has to find their own best strategies. Whether that's meditating, a breathing exercise, journaling, EFT tapping, or whatever. From my point of view, in any case, it is important not to stress yourself out with the sleep problems! It will only make things worse.

Pacing means as much as: Know your daily energy limit. Divide your activities in such a way that you don´t consume more energy than you have available in a day.

Pacing is actually useful for everyone. It helps to not overload yourself and then lie exhausted on the couch in the evening. Instead, you divide your day in such a way that there is always enough energy. Healthy people may, of course, exceed their energy limit from time to time, for example by going on a long hike, giving a strenuous lecture at work or doing extensive gardening. But they should also listen to their bodies and take a break after the effort.

Anyone who is chronically ill or has an infection often has less energy available than a healthy person. This is because the illness or infection costs energy. Those who suffer from exhaustion due to an illness have only very limited energy reserves. This is where pacing becomes really important. And for people with ME/CFS, it's even more important, because it helps prevent the dreaded Post Exertional Malaise (PEM) - the deterioration of the condition after too much activity.

Pacing is a coping mechanism. A tool to get a better grip on overwhelming exhaustion. To stabilize the state a bit, to make life a little bit more predictable, to better manage everyday life. Pacing has helped me to slow down the constant deterioration of my condition.

With this method, you learn to recognize typical triggers that cost a lot of energy and exhaust you in particular. You can then avoid them or manage them well. With the help of pacing, I have also learned to take consistent breaks and to observe myself carefully.

Pacing is not a cure, however. You can't pace yourself healthy. What was problematic for me, for example, was that I recognized more and more triggers and avoided more and more things. I kept limiting my life. I thought that if I just rested, slept and lay down enough, then these cursed symptoms would finally stop. But they didn't.

At some point the time came for me, and this is also written in the sources I have linked below, to restrict myself a little less again. Very carefully, with a lot of patience, in baby steps, I tried to expand my radius again. Testing the limits, falling on my nose again and again. I learned: I can do more again, trust myself more, if I listen very well to my body, if I do what I do as relaxed as possible, extremely slowly, with pauses. If you combine pacing with many other small strategies, it can actually contribute to recovery from my point of view.

As a healthy person, you think first and foremost that physical activity costs energy. That is  true. Doing sports, for example. In reality, however, all movement costs energy. For example, standing, sitting, lying down, turning over in bed, lifting an arm or drinking a glass of water, going to the bathroom, taking a shower.

You also burn a lot of energy mentally. Talking, reading, talking on the phone, watching TV, driving, working, taking care of family.

Emotions and feelings can take more energy than you imagine. Every argument, every upset, sadness, fear, laughter, a wedding. All of these burn up energy.

Environmental stimuli such as sounds and light, the weather also demand the organism and go on the energy account.

Some activities demand physical, mental and emotional energy at the same time (in my case, for example, doctor's appointments). And stress is one of the biggest energy robbers of all.

First, the most important thing is to determine the status quo. What do you do all in a typical day? Physically, mentally, emotionally. For how long? How strenuous is an activity for you? Are there things that particularly exhaust you? This means: You have to observe yourself very closely, be mindful.

An activity log can help tremendously. For example, I wrote down how many hours a day I spent doing something and how many hours I spent in bed or on the couch. I wrote down how long I did something at a stretch, what symptoms I had, what I ate, how strenuous something was, how I estimated my battery power.

A fitness tracker helped me a lot in recording my daily steps and checking my pulse. Because: the higher the pulse, the more strenuous the activity. Often, I didn't really realize how much something was exerting me. Looking at the tracker then startled me. I set myself an upper limit for the pulse, which I wanted to exceed as rarely as possible. I also set myself a maximum number of steps per day. So when the tracker was happy because I had reached what it considered its lowest step count, I knew: okay, slow down, stop.

How to find your individual heart rate so you don't overload yourself? Very difficult. These sites were very helpful to me:
http://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope

http://www.cfsselfhelp.org/library/topic/pacing

https://workwellfoundation.org/wp-content/uploads/2021/03/HRM-Factsheet.pdf

Whether it's ME/CFS, depression, POTS or IBS: all illnesses that are associated with fatigue significantly limit one's everyday life. To make the best of it, it helps to plan, set priorities and accept help.

Planning: What do you have to do this week? What costs a lot of energy? What will take less? At what time of day do you have more or less energy? Divide up your week accordingly - as best as you can. Routines help to save energy, because you have to do less thinking.

Set priorities: What's most important today? What can wait? Do you have to do the laundry today or can you do it tomorrow? Is showering three times a week enough? How can you divide activities into small units?

Accept help: Be honest with yourself. There are activities that you have to do, but they cost a lot of energy. Who can do them for you at least some of the time? Who can go shopping for you? Help you with the cleaning? Take your letters to the post office? Drive you to the doctor? This is where you really have to jump over your shadow and dare to ask for help. That way, you have more time to rest and for your recovery. And in the end, everyone benefits!

And then, finally, you want to get out of your comfort zone!

Why is stress management important from my point of view? Because body-mind syndromes like ME/CFS, fibromyalgia, Long Covid, Burnout,etc. are stress-related diseases. They are the result of adverse childhood experiences, trauma and chronic stress.

Top tips to better manage everyday stress:

• Find out the biggest stress factors in your life - professional, private, in your environment, in yourself and think about which ones you can switch off.

• Find inner and outer resources that help you to keep your nerves when you are stressed and to get the feeling: I can cope with this.

• Are unsolvable problems really unsolvable? Go through the problem step by step, pros and cons, why is it a problem, why does it bother you, what is behind it, what can you do about it, who can help you?

• Can you evaluate certain situations differently?

• What are the biggest time wasters in your life?

• Where can you hand over responsibility and accept help?

• Prioritize tasks according to urgency and importance

• What is really important in your life? What values are important to you?

• Make sure you have enough relaxation and time for yourself

PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their ME/CFS or other syndromes.

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Prof. Georg Hasler: Die Darm-Hirn-Connection

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Dr. Anne Fleck: Energy

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Detlef Schuppan, Kristin Gisbert-Schuppan: Tägliches Brot – Krank durch Weizen, Gluten und ATI

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