Friday, 22 March 2024

'First Aid' for M.E. Energy Systems - Heart Rate Monitoring

Heart Rate Monitoring to Manage Limited Energy

&

to Avoid the Post Exertional Response (PENE)

In this post Heart rate monitoring is presented as a tool to help people with ME manage activity levels, prevent overexertion, and reduce symptom flare-ups by pacing their energy more effectively.

Heart rate monitors are devices that measure and continuously track heart or pulse rate. Most monitors are designed to be worn on the body, and many provide fairly accurate readings.

Purpose of Heart Rate Monitoring in Myalgic Encephalomyelitis (ME)

Heart rate monitors provide real-time feedback about how much physical stress the body is under. This helps people recognise when they are overexerting themselves.

Heart rate monitoring during any type of activity provides feedback that promotes symptom awareness and control. When heart rate is associated with symptoms and perceived exertion, it becomes a powerful tool to manage the post exertion response in ME, i.e., P.E.N.E. - Post Exertional Neuro-Immune Exhaustion (also referred to as PEM); worsening of illness and symptoms after activity.

Heart Rate Monitoring can help individuals with ME manage activity levels and prevent symptom exacerbation. By tracking heart rate, individuals can remain below their anaerobic threshold, which is the level of exertion where the body shifts to less efficient energy production, reducing the risk of post-exertional malaise. Using a heart rate monitor to learn how to stay within their safe limits. This pacing method is often used in conjunction with other treatments e.g., extreme resting.

Before we continue let's look at the reason why Heart Rate Monitoring is suggested in ME in more detail

Two Problematic Features in ME: PENE and the Energy Issue

(1) PENE

The abnormal post exertion response in Myalgic Encephalomyelitis (ME) known as Post Exertional Neuro Immune Exhaustion (PENE), also referred to as PEM, includes a marked physical and or mental deterioration in response to increased activity, muscle and joint pain, cognitive dysfunction and extreme fatigue.

Even light or easy everyday tasks can exacerbate PENE, cause dizziness and other horrendous symptoms and prolong recovery time. PENE can also be triggered by mental exertion, stress, sleep deprivation and infection.

It is very important to try and avoid PENE. The exhaustion felt may be immediate after the activity or may be delayed by hours or days. Recovery normally takes 24 hours or longer and often people find that their heart rate is higher than normal during ‘everyday tasks’.

(2) Energy Issue

Energy production is not normal in ME; the ability of energy reaching cells is damaged in ME.

Keeping within ones’ energy envelope is a management strategy in ME. The energy envelope technique for managing and preventing symptoms is a way of describing the amount of energy a person with ME has available each day and how they best use that energy supply.

Energy Envelope energy is energy that you can safely use without triggering relapse. How much energy you have will depend on how badly ME affects you. It can also change from day to day, which means that an activity that you managed yesterday may exhaust you today.

Many people with ME use a Heart Rate monitor as an energy management strategy to pace their daily activity and monitor their body’s responses to physical exertion more accurately. Although there are limitations, Heart Rate Monitoring has many benefits including helping people with ME to understand and manage their PENE (also referred to as PEM) and to stay within an energy envelope.

Avoiding the Post Exertion Response (PENE) is Key to appropriate Care in ME

Post Exertional Neuroimmune Exhaustion - PENE is the cardinal feature of ME according to the International Consensus Criteria and Primer on ME. There is a long list of atypical symptoms that occur when a person with ME suffers from Post Exertional Neuro-Immune Exhaustion - PENE. Marked debilitating illness and weakness, cognitive dysfunction, symptom flare-up and possible paralysis as seen in severe ME, can follow ANY physical or cognitive exertion requiring energy, no matter how small or insignificant the exertion.

Essentially what it means is that any exertion, physical, cognitive or even emotional stress creates a prolonged reaction in the body where a relapse or worsening of these ME symptoms occur and can last for days, weeks, months or longer.

Indeed, many people who have pushed far too hard beyond their limits have become bedbound and carer dependent for years.

Worsening symptoms in ME as a result of Post Exertional Neuroimmune Exhaustion (PENE) may include exhaustion, extreme chronic pain, paralysis, brain fog, cognitive dysfunction, unrefreshing sleep, headaches, migraines, muscle pain and muscle fatigability, orthostatic intolerance, neurally mediated hypotension, or POTS, inability to eat, swallow or digest food, and much more.

Another distinctive element of Post Exertional Neuroimmune Exhaustion - PENE is often described as a loss of stamina and/or functional capacity.

There are some strategies people with ME can use to avoid PENE and to manage other symptoms; they include:

Exercise intolerance avoidance strategies such as pacing and resting

Symptom management to reduce symptom burden & increase QOL

Receiving validation and reassurance that your symptoms are due to biological issues across various systems

Accessing supports such as Community Services (Home Care Support, Mobility Aids)

Staying within your energy envelope

Learning your illness patterns

Building your support community e.g., family, carers, doctors, specialists

Ensuring good nutrition

Ensuring appropriate sleep

Maintaining emotional health

Avoiding stress

Treating other medical conditions

Important Note about Very Severe ME

People with Severe ME spend days struggling to cope from moment to moment in the most awful suffering. For those, and others with ME, pacing may not be an option to manage ME because the body can be in such turmoil that patients can't pace enough to impact disease processes, for example, someone who has severe/very severe or profound ME who lies completely still because any movement at all can cause awful debilitating symptoms.

For those patients no amount of pacing can help if digesting food requires more energy than the body can produce; no amount of pacing can help when trying to keep warm; no amount of pacing can help when the person has multiple sensitivities and is already responding negatively to light or sound or movement.

What a Heart Rate Monitor looks like

Heart rate monitors are wearable devices like smartwatches and fitness trackers. Many of these devices connect wirelessly to smartphones and computers which allows users easy access to review their heart rate data. Many heart rate monitors can alert the user (with a vibration or alarm) when their heart rate exceeds their safe threshold, prompting them to stop and rest.

What device should I get?

ME community feedback tells us that there is a wide variety of wearable devices available online and in tech retail. It may be the case that if you can get to a shop that you try a few devices to see what feels more comfortable on your wrist. In a shop you could ask for advice from the supplier about the best device for your needs. Online reviews are helpful too as well as feedback from the ME community.

Using a Heart Rate Monitor

There are as yet no defined protocols for heart rate monitoring and people with ME are using different methods. Using a heart rate monitor, to measure heart rate, heart rate variability, and other factors, allows people with ME to observe their energy usage, and learn how to stay within their safe limits. This pacing method is often used in conjunction with other treatments e.g., extreme resting.

Anecdotally, some people experience gradual improvements in their health when using a heart rate monitor.

Workwell Foundation Logo

Using a Heart Rate Monitor - the Workwell Foundation

An energy management strategy incorporating heart rate monitoring first developed by the Workwell Foundation in 2010 has been incorporated into a number of consensus and guidance documents, and is considered a reliably effective intervention among people with ME. This energy management strategy suggests identifying the average resting heart rate over seven days and then setting a limit of 15 beats above that resting heart rate (HR) using HRM to reduce activity above that limit.

Workwell Foundation's Heart Rate Monitoring factsheet is linked below.

Workwell Foundation's Heart Rate Monitoring Factsheet

Heart rate monitoring during activity provides biofeedback that promotes symptom awareness and control.
When heart rate is associated with symptoms and perceived exertion, it becomes a powerful tool to manage the abnormal post- exertional response in ME i.e., post exertional neuro immune exhaustion (PENE), a worsening of symptoms after activity.

Activity in ME could refer to the most basic demands on the body like thinking or seeing or could refer to more strenuous activity such as eating or walking to a different room. Activity could simply be moving in bed after waking up or standing up or sitting up.

Workwell Foundation’s Heart Monitoring Factsheet:

https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

Workwell Foundation’s 2023 Webinar about Managing Limited Energy and Avoiding PENE by Heart Rate Monitoring

Another excellent resource about activity management and heart rate monitoring is the Workwell Foundation's 2023 webinar (1 hr long incl 45 min presentation & Q&A) entitled 'Heart Rate Biofeedback for Myalgic Encephalomyelitis: From Physiology to Practice'.

During the webinar Mark Van Ness and Todd Davenport discuss PENE, the idea of identifying PENE symptoms, using heart rate monitoring to delimit activity and to avoid PENE.
They also mention different types of heart rate monitors and describe particular case studies.

The video of the webinar includes information on monitoring heart rate and using a heart rate monitor to limit the post exertional response in ME, i.e., PENE (also referred to as PEM). Please see the video via the link below:

https://www.youtube.com/watch?v=-EFa0I584Sg

Information from People with Lived Experience - Heart Rate Monitoring

Heart Rate (HR) & Post-Exertional Crashes in ME, see Suzan Jackson’s most popular blog posts which explains how HR relates to exertion intolerance, how to use a HR monitor to prevent crashes, how to improve stamina, and choosing a HR monitor here

Heart Rate monitoring from Sally Burch in her blog "Just ME" here

Tips on using a HR Monitor from Caroline Christian (US) here

Heart Rate Monitoring by Physios for ME (UK) here

HR Monitor Facebook Group here

Other Devices Used for Heart Rate Monitoring

Other devices can be used to monitor heart rate such as an Oximeter.

Please see more options suggested by Cleveland Clinic in the information via the link:

https://my.clevelandclinic.org/health/diagnostics/23429-heart-rate-monitor

Feedback from one person in the ME Community: “I have used a finger oximeter to estimate what sort of activity gets me ‘in the zone’ and is too much, based on Workwell [Foundation]. The pulse I should not exceed is 95bpm.”

Heart Rate Monitoring as a strategy to manage ME may not be suitable

for everyone who lives with ME

Evidence of lived experience tells us that heart rate monitoring has helped many with ME to control PENE (also referred to as PEM) and energy usage. In fact it is an important management strategy in ME as evidenced by the information in the resources. However, as a management strategy it may not be useful to everyone. For individuals who are very severely affected by ME, there may be virtually no safe level of physical or mental activity, orthostatic stress, or sensory input that does not result in some worsening of symptoms.

Very Severe ME

It is important to realise that at the severe end of the spectrum people with Severe ME don’t need to exert themselves for the phenomenon PENE to operate. There can be a critical response to the slightest movement by the patient or by the movement of a visitor to the patient's bedroom. Even simple brain activity can lead to worsening of illness in ME, e.g., hearing noise from outside the bedroom.
For very severely affected ME sufferers there is virtually no ‘safe’ level of physical or mental activity, orthostatic stress or sensory input; no level which does not produce a worsening of symptoms, and perhaps also contribute to disease progression.

Feedback from someone with POTS

"Doesn’t really help if you have POTS, heart rate goes up when I stand never mind any other movement."

However, HRM can also help with POTS

POTS causes an excessive heart-rate increase when standing or upright. Monitoring helps people:

Detect when heart rate spikes after standing
Track triggers (heat, dehydration, long standing)
Evaluate whether treatments (fluids, salt, medications) are helping
Know when to sit or lie down before symptoms worsen

About Myalgic Encephalomyelitis (ME)