An International Survey Of Experiences And Attitudes Towards Pacing Using A Heart Rate Monitor For People With Myalgic Encephalomyelitis/chronic Fatigue Syndrome Part 2

3.5. Benefits of pacing with a heart rate monitor

Cistanche can act as an anti-fatigue and stamina enhancer, and experimental studies have shown that the decoction of Cistanche tubulosa could effectively protect the liver hepatocytes and endothelial cells damaged in weight-bearing swimming mice, upregulate the expression of NOS3, and promote hepatic glycogen synthesis, thus exerting anti-fatigue efficacy. Phenylethanoid glycoside-rich Cistanche tubulosa extract could significantly reduce the serum creatine kinase, lactate dehydrogenase, and lactate levels, and increase the hemoglobin (HB) and glucose levels in ICR mice, and this could play an anti-fatigue role by decreasing the muscle damage and delaying the lactic acid enrichment for energy storage in mice. Compound Cistanche Tubulosa Tablets significantly prolonged the weight-bearing swimming time, increased the hepatic glycogen reserve, and decreased the serum urea level after exercise in mice, showing its anti-fatigue effect. The decoction of Cistanchis can improve endurance and accelerate the elimination of fatigue in exercising mice, and can also reduce the elevation of serum creatine kinase after load exercise and keep the ultrastructure of skeletal muscle of mice normal after exercise, which indicates that it has the effects of enhancing physical strength and anti-fatigue. Cistanchis also significantly prolonged the survival time of nitrite-poisoned mice and enhanced the tolerance against hypoxia and fatigue.

Click on fatigue

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Although there were benefits outlined in Table 6, fewer PwMEs found that this translated into functional improvements (see Table 7). 31% had improved their ability to be able to do any activities of daily living or self-care, 24% were able to enjoy a hobby or interest, and 23% improved physical capability, e.g., sitting up in bed, standing, walking, or working. These functional changes are outlined in Table 7. Although 5%  returned to exercise one PwME stated “By exercise, I mean recumbent exercise on a pilates reformer using a physiotherapist versed in HR pacing to guide me”. It is important to note, as one PwME explained that “pacing (even with an HRM) is only one factor linked to improvements. It helps but has to sit within a wider set of interventions and support”.

3.6. Negatives of pacing with a heart rate monitor

57% felt the main negative was the lack of support from carers or medical professionals with one PwME saying “I wouldn’t dream of mentioning it to my GP – I just do the best I can by myself. I long for the day when I can do this in conjunction with a knowledgeable medic”. 43% felt that one of the negatives of HRM was financial, i.e., budget limitations and the cost of the device and 43% identified a negative as the initial restrictions imposed by staying below the threshold or limit. Table 8 outlines the negatives expressed towards HRM.

In addition, several PwME identified that “HRM does not give info on time spent doing cognitive stuff”. Another comment related to the fact that these devices are designed for healthy people “HR watch not made for sick people, it assumes I’m working out and stuff”. In addition, several people expressed frustration with the lack of research stating that there is a “lack of research and integration into ‘mainstream’ medicine”.

2.2% stated they felt they had been harmed by HRM and 4.1% stated that they felt they may have been harmed. However, when asked to expand on their replies only 12 people expanded on their answers. Four felt that the reduced activity had led to deconditioning, two people felt it affected their mental health, one felt it may have made their orthostatic intolerance worse, one felt it made them “stiff and sore in their muscles” but continued to say “but I’m convinced I would be in much more pain if I pushed as I did before”, one felt “a little perhaps through a false sense of confidence and trusting imprecise data”, one felt it led to “having 6 months of unnecessary cardiology investigations all for nothing because the commercially available HRMs cannot detect PVCs (ectopic heartbeats)”, another said “staying under heart rate determined by 2-day CPET still causes PEM” and finally one was using the HRM  incorrectly leading to harm “when I used the 60% of max HR threshold to do recumbent cycling I messed myself up – I was very unwell”.

3.7. Support from family and healthcare  professionals

48% of participants said that family members were supportive of them using HRM, 24% were mixed and 27% were indifferent with 5% being not supportive. One participant said:

“The objective information from the Heart Rate Monitor meant my husband was immediately more able to understand my limits and was more sympathetic to me and the constraints I have to live within. This was a huge step forward” and another on the same lines stated that “It helps to give you data”.

Whereas another said “Mostly they don’t care a lot” or that family thinks they are overanxious or reporting “Family and friends with ME, supportive, but friends without ME think I am making a fuss” and “Easier for my kids to see to understand, however lots of comments about how monitoring your heart rate increases it, makes you a hypochondriac”.

In comparison, 14% of healthcare professionals were supportive of HRM, 19% were mixed, 34% were indifferent, and 18% were not supportive. One participant said:

“No National Health Service professionals have shown any interest or relevance & even give the impression it’s a bit over the top. Private ME  specialist physio has been so helpful”.

Another said: “My specialist ME OT had never heard of it and didn’t seem interested when I tried to talk about it, even though it had been the most useful management technique I’ve found”.

And “good medical professionals take the HR readings seriously, allow me to lay down, etc.,  arrogant doctors think a high HR is = stress or fear or panic”.

A lot of people said that they do not talk to their health professionals about it or “I no longer consult medical professionals unless I have to”.

A number of the participants stated that they felt healthcare professionals including occupational therapists, physiotherapists, and other clinicians should be trained in the use of pacing with an HR monitor, and heart rate monitors should be available on the NHS.

3.8. Additional comments and advice for PwME

Some respondents highlighted the use of heart rate variability monitoring to enhance their HRM. Heart rate variability is the fluctuation in the time intervals between consecutive heartbeats [20]. 53.7%  used heart rate variability monitoring to help guide their management and one person said “Monitoring HRV data eliminated my rolling PEM and I  even managed to increase some functionality without crashing”, however, some found no correlation with their symptoms: “I did take HRV readings and tracked in my 3-month spreadsheet and found zero correlation to symptoms” and some felt HRM was challenging enough, “I couldn’t even begin to understand HRV. It was challenging enough just trying to monitor HR”.

Some respondents also gave advice for PwME who  were about to start HRM:

• “Use it as a support to living, not as a restriction” 

• “Stick with it, it can take months, it’s not an  overnight solution, stick to it for at least 6  months” 

• “Join a support group” 

• “Be prepared to be shocked at how little you can  do at first” 

• “Take care with cognitive activities” 

• “Get help with set-ups” 

• “If it's causing too much stress, then it might not  be the right strategy for you”

4. Discussion

This study aimed to identify the experiences and attitudes of PwME towards HRM. As the survey participants were mainly female between the ages of 30 – 50 this reflects the larger ME population [1]. Approximately 40% of the survey participants described themselves as having severe or very severe ME indicating that the survey results provide experiences of more people with this higher level of severity of ME. As it is thought that approximately 25% of the ME  population have severe or very severe ME [21] this survey therefore represents the experiences of severe and very severe PwME. Over 50% of the participants were from the UK so it is not clear if more people in the UK are using HRM or that the survey did not reach many of the ME populations in the USA, Canada, and Australia. In future surveys, the survey link would need to be shared with more ME organizations in these countries. The results of this survey therefore reflect the experiences of people mainly in the UK and Europe.

Although the use of HRM has been encouraged since 2010 [18] for people with ME, the majority of the survey participants had only been using it for the last three years despite most of the participants having had ME for over five years. There appears to be a lack of knowledge related to the use of HRM and certainly a lack of research exploring the efficacy of its use in people with ME. The variety of methods used to calculate the estimated VAT demonstrates the lack of knowledge and understanding of how to calculate it. The use of the CPET test to calculate an individual’s VAT is seen as the gold standard, however, Moore et al. [22] identified that up to 7% of people with ME  who undertook CPET took up to 10 weeks to recover and 1% did not recover after one year. Outside of the USA, there is also a lack of CPET testing. So an alternative, valid, and reliable way of calculating the VAT needs to be found as many countries will not have access to CPET testing.

The concerning aspect of the use of the HRM was that some participants were using too high a level of estimated VAT or were attempting to use zones when working with the heart rate monitor. There is a clear need for PwME and healthcare professionals advise them to know how to use these devices specifically for ME. Healthcare professionals are perhaps familiar with the use of heart rate monitors for cardiac rehabilitation where people with cardiac conditions are encouraged to work at 60% of their maximum heart rate [23] and maintain that level of aerobic activity for 20 minutes to improve cardiovascular fitness. Unfortunately for PwME, their anaerobic threshold is lower [24] so if they were to work at 60% of their maximum heart rate this is likely to exceed their VAT and cause significant PEM. The survey showed not just the lack of knowledge but also the lack of support that PwME have received from healthcare professionals,  and this reflects two meta-syntheses that highlighted that PwME is not taken seriously by physicians and that “there is general skepticism and minimization of ME” [25, 26]. HRM has the potential to show carers, family members, and healthcare professionals that the person with ME has a physiological problem that requires recognition and validation.

The survey identified that over 100 devices were used for HRM with the most popular being the Apple watch, followed by Garmin, Fitbit, and Polar devices. The results show that all the devices have the potential to improve the level of severity of ME, the severity of PEM, and the rate of recovery from PEM, independent of whether a chest strap is used. However, several people highlighted that all the devices on the market are designed for people without a chronic condition. There is a need for a more bespoke device that is easy to use with functions designed for PwME, for example rather than setting zones and targets to exceed [27] there would be the option to set an alert to stay below a target. It was also clear that heart rate devices cannot monitor the energy used during cognitive, social, and emotional activities. A  device that could do that would be very beneficial for PwME.

The survey also highlighted that some PwMEs were using heart rate variability to enhance HRM although this was not without its challenges. HRV is the fluctuation in the time intervals between consecutive heartbeats [20] and can be used to estimate autonomic nervous system health. It can potentially suggest whether there is an imbalance in the sympathetic and parasympathetic drives that may produce symptoms of dysautonomia and PEM. This may be an area for future research.

Several negatives were identified with HRM,  the main ones being lack of support, financial cost, and too restrictive. Lack of support has already been discussed, however as well as educating healthcare professionals perhaps financial support to provide these devices would be beneficial for PwME to manage their condition, considering people with diabetes are provided with blood sugar monitors by the NHS in the UK [28] and insurance companies in the USA and Canada. The negative responses about HRM causing restrictions to activity and potentially leading to deconditioning, highlight the need for individualized care and the importance of support for PwME while trying these devices. Assistance would be beneficial in setting up the device, learning to pace with the device, and social support so that they can rest and reduce their activity while still managing their everyday commitments. Ultimately by finding their baseline and allowing their body to rest, there may be the potential to improve their activity levels [29].

Nearly all the participants found benefits with HRM but less than a third found that these benefits translated into increased functional activity. HRM often resulted in reduced functional activity to stay under their VAT. However, it is encouraging to see the potential for HRM to increase capacity to work or to increase the time at work. As many as 1: 250 of the working population have ME [29] and as ME affects mainly working-age adults [1, 30] any approach that has the potential to help people continue in work is beneficial. It is important to recognize that HRM is a management tool that needs to be used in conjunction with many other management strategies such as rest, prioritizing, and planning [31, 32]. HRM is not a cure for ME, but it can be used as a management tool with the potential to help most PwMEs.

4.1. Limitations

• It is recognized that it was not possible to check that people filling out this survey had an official diagnosis of ME, although the patient information sheet and all literature related to the study identified that part of the inclusion criteria was a diagnosis of ME. In future surveys, the ICC  will be part of the participant information leaflet so participants can check that they fit the criteria for ME. 

• The statistical analyses are limited by the numbers of respondents in some of the groups and it is recognized that an intervention study is needed to truly establish the differences between different devices and the impact on disease and symptom severity and PEM symptoms.

5. Conclusion

This survey aimed to identify the experiences and attitudes of PwME towards HRM. Although there are limitations due to the range of the sample, it has highlighted that HRM has many benefits including helping PwME to understand and manage their PEM  and support them to increase their activities, including work. It is recognized that one of the negatives is the potential to reduce physical function although this may only be in the initial stages of HRM. It has also highlighted the need for more research and education of healthcare professionals in the safe use of HRM.

Ethical approval 

Ethical approval was obtained from the University of Leicester (31983).

Informed consent 

Consent was assumed if the participant clicked on the survey link after reading the information sheet.

Acknowledgments 

The authors would like to thank all people with ME who used valuable energy to complete the questionnaire.

Conflict of interest 

The authors declare that they have no conflict of interest.

Funding 

The authors report no funding.

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