Open UK: Pacing with a Heart Rate Monitor pilot study, Physios for ME

Andy

Andy

Retired committee member
"We’re thrilled to announce that a new pilot study is now recruiting: "A pilot study to identify the feasibility for a definitive study that will investigate the effectiveness of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis and long COVID."

There is growing anecdotal evidence that pacing with a heart rate monitor is being utilised as a management strategy for people with ME and Long COVID. However, there is a lack of formal studies in this area.

This pilot will determine the feasibility of conducting a definitive study to investigate the effectiveness of pacing with a heart rate monitor for people with ME and Long COVID.

To be eligible for this pilot you will need to:
- live in Manchester, Liverpool or Cheshire areas (United Kingdom)
- fit the ICC criteria for ME or have Long COVID with Post Exertional Malaise
- never have tried heart rate monitoring for pacing"

Further detail, including Participant Information Sheet, at https://www.physiosforme.com/post/pacing-with-a-heart-rate-monitor-pilot-study-recruiting-now
 
From Physios for ME's website:

"The pilot is being run by Physios for ME, The University of Liverpool, the Facebook group “ME/CFS – Pacing with a Heart rate monitor #2”, Professor Todd Davenport, the Stockport ME support group and Harry Leeming, the CEO of Visible, who are aiming to build the first activity tracking platform designed specifically for people with chronic illness."

Forum thread on 'Visible' :

https://www.s4me.info/threads/visib...and-pacing-including-me-cfs-long-covid.23542/

On Twitter:

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RedFox said:
They're recording lots of objective data--I hope the primary outcome measures will be objective.
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I think we also have a discussion on the study protocol somewhere on the forum, including thoughts on which objective data to chose and whether cognitive testing could be included.

Not able to continue searching now, but hope it's OK to copy and paste from the Participant Information Sheet:
On the day of the assessment (arranged to fit into your schedule), you will be asked to fill out the consent form and three questionnaires (which can be completed in your own time if it is too much on the day of the assessment).

Your medical history and medications will also need to be recorded but you can send that through separately if it is too much to do it all in one session.

You will then lie for 5 mins and stand for up to 10 mins and your blood pressure (BP) (see BP monitor), heart rate (HR) and oxygen levels (see pulse oximeter) will be taken before and after each activity. You will then be asked to record your BP, HR and oxygen levels for a week before the start of the trial and also record any post-exertional malaise you have during that week and the activities you do during that week.

Some of you will also wear a heart rate variability monitor during that week (see HRV monitor) or an accelerometer (see accelerometer) or take lactic acid levels for a week (see lactic acid monitor).

After these measures you will be randomised into Group 1, Group 2 or Group 3. Groups 1 and 2 will receive a heart rate monitor to wear for 8 weeks and group 3 will not receive a heart rate monitor.

All groups will be able to attend online pacing sessions every week for four weeks with Professor Todd Davenport.

At the end of the 8 weeks the researcher will return and redo the BP, HR and oxygen levels in lying, sitting and standing and will ask you to do this again for a week as well as wearing a HRV monitor or accelerometer or take lactic acid readings as you did in the first week.

You will also again be asked to record your activity levels and any post-exertional malaise you have during that week. At
the end of that week the researchers will return and take all the equipment.

Finally, you will be asked to take part in an online interviews to discuss your experiences of using HR monitors if you have used them. If you haven’t used the monitors you will be asked your thoughts on taking part without using the hr monitor and your thoughts on the pacing advice. The interviews will be audio recorded. [...]
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Edit -- apologies for any confusion.

Not sure now, but I think I was remembering the feasibility study for the pilot study.

Threads on the feasibility study:

https://www.s4me.info/threads/uk-pl...ly-activity-2020-21-clague-baker-et-al.15110/

https://www.s4me.info/threads/recru...of-pwme-during-normal-daily-activities.20406/
 
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