Pacing Through Baseline Changes

Guidance for People with MECFS

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Identifying Changes in Baseline

The first step in avoiding crashing when your baseline changes is identifying your baseline and when it changes.

Your baseline is the amount of activity you can safely do on an average day.

When you are at your baseline

-Your resting heart rate should vary less than 10bpm each morning

-Your heart rate variability should be roughly constant

-Your symptoms should be constant and at their lowest level (this may or may not be zero)

An app like visible ca help you track all 3 of these variables and identify if you are at your baseline. You can also use a physical journal or app like Bearable to track symptoms and wearable tracking devices to track heart rate variability (HRV).

A sharp increase in symptoms should always be taken as the strongest indication of a possible baseline fluctuation.

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Changing Routines is Hard

Much of pacing with Myalgic Encephalomyelitis (ME) relies on sticking to a routine that is within your limits. This is especially true for patients who have been sick for many years and know their baseline well.

When your baseline changes, sticking to your routine can push you into post exertional neuroimmune exhaustion (PENE) or a "crash."

This poses a large challenge to people with ME when our baseline fluctuates. Our routines, which normally protect us, can instead endanger us.

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Mentally Caping With Baseline Decline

Baseline decline can create a wave of grief similar to the result of getting sick

declines.

Focusing on acceptance of your new baseline not reminding yourself that your value is not your productivity can help.

If you are able you may be able to search for new activities / hobbies

replace the old.

Baseline decline can lead to

- innadaquate support and loss of independence. Regardless of your ability to recieve it remember that you deserve to be fully supported regardless of severity.

Try to remember that you have been through this process of grief and

redefinition of the self before. You got through it once and you can do it again.

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Avoiding Delay And Denial

It is important to act quickly when you relapse and experience baseline decline. Failure to reduce activity in the large crash following a stressor such as infection or activity increases the risk of not recovering your baseline.

Denying this loss of function helps no one. You must try to accept the loss quickly. It can help to initially with siger sive testing thy sot beckily be the case, and even if it is not it allows for drastic reduction in activity without having to immediately process the grief of loss of function.

If the setback is temporary you will eventually feel more energy in this reduced activity state and can then begin to slowly work back up to your previous baseline.

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Pacing Through Baseline Improvement

If for whatever reason your baseline is improving it is equally important to act with caution. Avoid sharp increases in activity that can lead to a crash. Instead always keep at least 20% of your energy in reserve each day.

Baseline improvement can be immensely exciting. While optomism is tine, avoid getting overexcited in case the improvement is temporary.

Be especially cautious if the improvement happens in the presence of stimulants or large amount of adrenaline.

Focus on slow and consistent increases in activity, waiting between changes to ensure you avoid post exertional symptoms. For more concrete advice on increasing movement see @movement_with_me.

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Increasing Activity Without GET

Slow consistent increases in activity as used graded excercise therapy. However there are some key differences in how this applies to people with ME that make it different:

1. Movement increases should be guided by your body. If you do not feel more spare energy you should avoid movement

increases.

2. You should wait to see how each movement increase affects you before adding additional activity.

3. When you reach a point where increasing movement further even slightly causes post exertional symptoms you should stop and settle at your new baseline rather than chasing a full recovery.

These changes do not mean that you cannot see signiticant gains in function over time when baseline improves. They simply mean that you should not force increased movement beyond what your bodies new baseline can handle.

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Professional Guidance

In the case of decreased baseline the beat perfession in help you process chronic illness griet. Look tor therapists trained in acceptance commitment therapy (ACT), and who have experience with relapsing remitting or progressive chronic illness such as MS.

In the case of increased baseline it can be helpful to seek out a movement coach or a physical therapist.

Just be cautious that many PTs are not going to advise you to listen to your body to know when to stop. Take their advice on what movement increases are most beneficial to your oody and how to increase movement. But do not take advice on increasing indefinitely or ignoring post exertional symptoms.

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Baseline Changes Takeaways

Pacing during baseline changes is difficult because it disrupts our daily routines which are a staple of pacing.

A sharp increase or decrease in symptoms or changes in HRV tracking can be used to identify changes in baseline.

Baseline decline can lead to chronic illness grief and loss of identity simular to what occurs at the start of illness.

It is essential to sharply decrease activity following a baseline decline to avoid a cycle of crashing and further decline.

When baseline improves you can slowly increase activity while continuing to listen to your body. Taking bodily feedback into account differentiates this movement increase from graded excercise therapy.

When your baseline declines you may wish to seek help from a chronic illness informed therapist.

When your baseline improves you may wish to seek help from a movement coach or physical therapist to increase movement efficiently tor your bodies needs.

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Your baseline is the normal level of functioning and symptoms present with your chronic illness such as Myalgic Encephalomyelitis MECFS at any given time.

When we crash, experience severe Post Exertional Neuroimmune Exhaustion / Malaise PENE aka PEM, or experience a relapse our baseline changes.

Pacing during baseline changes is difficult because it disrupts our daily routines which are a staple of pacing.

A sharp increase or decrease in symptoms can be used to identify changes in baseline. This can be done alongside monitoring changes in rhr (increase of 10bpm indicates crash) and HRV (sustained lowered HRV indicates lowered baseline).