Pace in ME / CFS: what role does energy play?

Pacemakers include people who take part in marathons or bike races to set a constant pace for other participants. In this way, they help them achieve a certain walking or driving time. Pace in sports, then, means taking a step in front of someone else so that they can use their strength – and achieve their goals.

The term “stimulation” also appears sometimes in the context of certain diseases such as myalgic encephalomyelitis, ME / CFS for short or long covid. For the injured, it is a way to separate forces. Although these are usually not the kind to think about in a marathon. Even daily activities like vacuuming are sometimes too much. You set the pace yourself: The “other” that doesn’t usually persist in ME / CFS is your own body. He lacks energy.


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The autonomic nervous system seems to be going crazy

ME / CFS is a systemic disease that is often severe. The autonomic nervous system seems to be confused. It regulates a lot of what we do unconsciously. It makes us breathe, the heart beats, and the blood circulates properly in the body. People with ME / CFS seem to be in stress mode all the time.

‘The autonomic nervous system likely controls stress receptors incorrectly,’ says Professor Carmen Scheibenbogen. He heads the immunodeficiency clinic at the Immunological Institute Charité Berlin. As a result, the function of the blood vessels is no longer properly regulated down to the smallest capillaries.

What happens in ME / CFS in the body? About the causes and symptoms



Typical: worsening after exercise

According to the arch of the disc, this is evidenced not only by the fact that patients often have cold, reddish or bluish fingers and hands. Poorly targeted blood distribution may also explain other symptoms typical of ME / CFS, such as pain, difficulty concentrating, or dizziness: “Because vasoconstrictor receptors mainly respond, not enough blood is pumped into the muscles when you are under stress. . That’s why muscles hurt faster, muscles hurt. When you think that not enough blood is getting into your head, your thinking ability slows down, it becomes foggy. And when you sit down or stand up, blood flows from your head towards your torso or legs. It’s spinning in my head.

Patients often suffer the most from so-called post-exercise malaise, or PEM for short: it describes the worsening of symptoms after exercise. Physical, mental, or emotional effort, which is often light when viewed from the outside, aggravates symptoms. Deterioration does not occur immediately after the activity, but is often delayed by hours to two days[1]. Experts call it a “failure”. It often takes much longer than the actual effort, sometimes several weeks or months. And according to the Society for ME / CFS, this can even lead to permanent deterioration.

From lack of energy to severe exhaustion

According to the disc arch, PEM can also be explained by hyperactivity of the autonomic nervous system and abnormal blood distribution. Because muscles make up a large part of our body weight. If it is not supplied with blood during physical exertion, on the one hand, it cannot generate enough energy to generate strength. On the other hand, it later lacks energy to break down waste products like acid in the recovery process, says the disc arch.

This damages the muscles, explains the arch of the disc and releases substances, the vessels become more permeable, and the tissue fluids cannot be pumped out properly. According to the expert, there are inflammatory factors, the so-called prostaglandins, which can cause a sore throat, swelling and flu-like symptoms. Muscles no longer regenerate properly. There is permanent, severe exhaustion known as fatigue.

Manage your little energy

When this “breakdown” occurs, it varies from person to person. This is where pace comes into play. Due to the lack of treatment to date, affected people can often only prevent EMF if they learn to use their often limited energy resources to an extreme level.[2] strictly divided[3]. This means: They must recognize their physical limits and must not exceed them if possible.

For each patient, this very individual question is therefore in focus: How tough am I? What activity can I do so that my symptoms don’t get worse later?

Exactly what caused the “crash” cannot always be said right away due to the lag. The German Society for ME / CFS then recommends those affected to keep a diary of activity and deterioration of health. Over time, you can identify patterns when your personal stress limit is reached or even exceeded. As a result, victims can prioritize: What do I absolutely need to do? What can I push, delegate, do I have to let go? The pedometer can also help you determine your upper stride limits in retrospect.

Learn to cope better with everyday life

With the help of PEM stimulation, it should occur as rarely as possible. The main thing is to observe your own body and approach it[4] To listen[5]. Stimulation is not a curative therapy – but a way to avoid being constantly overloaded under stress. And stabilize your condition at a “certain level” in the long term, as the Society for ME / CFS writes. The point is not to overdo it on better days than on worse. And yet being as active as possible highlights the disc arch. Ideally, you can increase your own stress limit over time.

If you can go for a walk without breaking your legs and don’t feel overwhelmed the next day, you probably haven’t exceeded your energy limits. However, if you are already exhausted after shampooing your hair, you are unlikely to go shopping. According to Carmen Scheibenbogen, it’s important to always keep an eye on your form during the day. It could be better or worse. You have to accept your own limitations. And accept when less can be done.


Chronic Fatigue Syndrome: an overlooked disease

For 250,000 people with ME / CFS, some of them seriously ill, there is no treatment and almost no testing. That could change – also because of Long Covid

Build an energy buffer

According to the company, the pace includes not only “activity control” but also strategic and long-term planning of recovery and rest. This creates a kind of individual energy buffer that protects against EMF. This form of resource gathering can be even more effective than “just” avoiding congestion.

Buffers can also be created, for example, by patients undergoing treatment for often severe sleep problems. The first point of contact is the family doctor. For although they are constantly exhausted, many can no longer sleep properly. “This is just a contradiction at first glance,” explains Carmen Scheibenbogen: Because her body is in a constant state of stress, many ME / CFS sufferers cannot shut down properly anymore. Stress, which improves concentration and perception of stimuli in the short term, leads to sensitivity to stimuli in the long term. “Everything becomes unbearable, the light is too bright, the noise is too loud, the touch is too intense,” says Scheibenbogen. The stress antagonist in the body, the parasympathetic nervous system, which is responsible for relaxation, is no longer activated.

Find your way back to a healthy sleep rhythm

Therefore, she explains to her patients why regular sleep is an important part of ME / CFS treatment. “If the rhythm of the day and night get confused, you become even more exhausted. At some point, you can no longer distinguish between what is fatigue and what is fatigue? ” They help to calm down by doing relaxation exercises in the evening. If this is not enough, talk to your GP. He can provide further guidance and, if necessary, prescribe medication to aid sleep.

During the day, it is important to schedule enough rest breaks during the day, according to the Society for ME / CFS. You should avoid distractions such as television or social media during these breaks. In general, stimuli can be minimized, for example with sunglasses, sleeping masks or insulating headphones. You should also regularly seek relaxation during the day through breathing exercises, meditation or relaxation exercises. Because it all calms down the autonomic nervous system.

Small Step Therapy – when stimulation doesn’t make sense

Some people with ME / CFS are so seriously ill that it is difficult or impossible for them to get out of bed. The pace is then not possible. “But a few other little bricks. All fail to make a breakthrough. But overall it can help, says Scheibenbogen:

To stabilize the seriously ill, he recommends drinking enough fluids: “Drink enough in the morning lying down. Then small amounts over and over during the day, less in the afternoon, so you don’t have to go out at night. “

For those who have low blood pressure, like most ME / CFS sufferers, refill drinks with a little salt or drink broth. Patients with high blood pressure should speak to their doctor. You may be able to supplement other salts like magnesium and potassium.

Compression stockings help reduce blood pressure fluctuations. “It is also important to avoid hypothermia, it reduces blood circulation,” emphasizes Scheibenbogen. The muscles must stay warm to avoid exacerbations. If you are suffering from severe pain, careful manual therapy, such as light stretching, can help. “Perhaps a physiotherapist can come to your home” – advises Disc Arch.

Diet can also improve the condition of some people. “Many are intolerant to some sugars and feel better if they only eat small amounts of food.” Before you completely avoid certain foods or substances, you should seek the advice of your doctor. To counteract muscle loss caused by inactivity, you need to eat enough protein. Sports drinks or liquid foods may help if necessary, but talk to your doctor first.

According to the disk sheet, many people also suffer from vitamin deficiencies: “Vitamin D supply is not guaranteed if one does not go out in the sun, and iron deficiency is also common.” your GP and, if necessary, take appropriate measures.

Now it’s time to persevere

In the medium term, patients can thus keep the often severe symptoms as low as possible, says Scheibenbogen. So avoid severe overloads and EMF. Of course, in addition to accepting your own limitations, you need to be patient. And disciplined. Like a marathon. But a marathon often consists of a short walk.

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