IACFS measuring affects of normal activity on ME/CFS people

IACFS/ME Conference (6): Measuring effects of normal daily activities on people with ME/CFS

 The 3rd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgia Encephalomyelitis was held on the 27th-30th July 2022. The conference promoted unpublished data and included both clinicians and biomedical researchers.

This year the conference committee utilised the virtual platform “Gather”, which allowed more interaction between attendees and for researchers to engage with one another, allowing questions to be asked. Essentially this gave the appearance of an online virtual reality conference (see image), from entering the conference room in the virtual setup, the talks were then hosted through zoom.

The talks were grouped into different sections, including: immunology, metabolism, infectious diseases, treatment as well as several sessions on Covid.

A few of the talks this year, were familiar to us from our weekly research roundup, so we have not covered them in this conference report. These were:

  • Pre-Illness metabolomics data among college students following mononucleosis and ME/CFS reveals differences in multiple metabolites and metabolic pathways by Leonard A. Jason, DePaul University, USA.
  • How to ensure the voice of the severely affected ME/CFS patient is heard in research by Helen Baxter, 25% ME Group, United Kingdom.
  • Oxaloacetate improves physical and mental fatigue in ME/CFS and long-COVID by David Kaufman, Centre for Complex Diseases, USA. (Dr Charles Shephard has also provided a comment on this talk, available here.)

Several of the talks have also been documented by Miriam E Tucker from Medscape News and are also available to read on our website, these are:

  1. Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long Covid- available here
  2. Increasing Data Link ME/CFS, Long COVID, and Dysautonomia- available here
  3. ME/CFS and Long COVID “Frighteningly Similar, if Not Identical”- available here
  4. Clinicians Can Help People With Severe ME/CFS, Even Unseen- available here

Due to the format of the conference and the focus on unpublished data, no direct recordings or pictures are available freely as this may jeopardise publication. The full conference programme can be found on the IACFS/ME website here, where recorded presentations may be purchased. Other summaries produced by attendees of the IACFS/ME may also be read on the IASCFS/ME website.

Audio commentary by Dr Katrina Pears

6. Feasibility of investigating oxygen consumption (VO2), heart rate variability, blood pressure and lactic acid levels of people with myalgic encephalomyelitis during normal daily activities.

Nicola Clague-Baker, PhD

University of Liverpool, UK

Dr Nicola Clague-Baker is one of the founding members of Physios for ME, set up in 2019. This presentation was on a feasibility study which was funded by the ME Association, allowing measurements and data to be collected in a home environment.

Previous studies have shown that compared to healthy controls, people with ME (pwME)have:

  • low maximum oxygen consumption (V02) when measured through CPET tests (cardiopulmonary exercise testing),
  • reach anaerobic thresholds (AT) quicker,
  • produce more lactic acid when exercising.

However, it is not currently known how these factors vary with everyday activity, which is currently reported by pwME to be a problem. Furthermore, there are concerns of the long-term health consequences of using a CPET to investigate these physiological measurements, therefore there is a need to find alternatives.

The team investigating this feasibility study visited participants first thing in the morning, before any daily activity occurred. The equipment involved wearing a portable metabolic chamber (mask), allowing a range of measurements to be taken, such as: oxygen consumption (VO2), carbon dioxide production (VCO2), minute ventilation. Other measurements taken, were: heart rate variability, blood pressure, oxygen saturation, and lactic acid levels.

Measurements were taken before and after activities, such as: lying to sitting, standing, stairs, kitchen and bathroom activities. The activities performed were suited to the participants normal activity levels as not everyone could manage the same levels of activity. Participants were asked to measure their heart rate variability for 6 days afterwards, especially during activity or if experiencing PEM.  Fatigue was also rated on the Fatigue Severity Score.

Feasibility studies are assessed on four different criteria: recruitment, acceptability, outcome and response- which this study fulfilled. Some of the key points of this study were:

  • 17 people with ME and 5 healthy controls,
  • ME varied from mild to severe,
  • 20 people were recruited in 4 hours,
  • all participants with ME struggled with PEM, but tests were not seen to hugely impact fatigue scores,
  • metabolic chamber results showed VE/CO2 (increased ventilation due to carbon dioxide production) in people with ME,
  • no recovery in heart rate variation for seven of the participates and all had lower recovery levels than HC,
  • lactic acid levels were higher in the week of testing for pwME but this was not reflected in the levels of physical activity,
  • heart rate was constantly higher in pwME.

In conclusion, this feasibility study showed that measurement during everyday activity is possible in people with mild to severe ME, however, activities need to be appropriate for differing severity levels. This study identified abnormal physiological changes in pwME within their homes.

(N.B Dr Nicola Clague-Baker had a second talk at the conference, titled “An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with ME/CFS”.)

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