Earlier this year work began on a study: “Feasibility of investigating oxygen consumption (VO2), Heart rate, Blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities.”
The research is funded by the ME Association Ramsay Research Fund and led by members of Physios for ME, along with Professor Helen Dawes, a specialist in exercise science and neuroscience, and Professor Sarah Tyson who specialises in neurological rehabilitation and also lives with M.E.
“We know that people with ME show abnormal results during cardio-pulmonary exercise testing. They reach their anaerobic thresholds quicker and are slower to recover compared to healthy controls. It has also been shown that they produce greater levels of lactic acid and have an impaired ability to recover from acidosis. But these results come from testing people with ME at maximal exertion. We want to see what happens to these measures during general daily activities.”
Principal Investigator, Dr Nicola Clague-Baker explains the reasoning behind this study:
If abnormalities are seen during general daily activities, it would allow for more research related to these abnormal physiological responses to be carried out without exposing people with ME to harmful levels of exertion. The study might also help measure the effect of interventions such as HR monitoring, to pace activity and prevent PEM, in future studies.
“This is a feasibility study,” explains Dr Clague-Baker, “so the aim is to explore the acceptability and feasibility of the testing protocol for people with different levels of ME severity; assess recruitment rates; choice of outcome measures and monitor adverse events during testing.”
Data collection is ongoing but the team have provided an update based on their current findings:
Recruitment
After posting on social media, the team had recruited the target 20 participants within 4 hours. After 24 hours they had 70 volunteers and closed recruitment. This indicates that it will be feasible to recruit to a larger study.
Equipment
Most of the equipment has been tolerated by participants. The portable metabolic chamber was more difficult to tolerate in those with severe ME because of the mask – it may be that additional sessions are needed to help them get used to it before testing.
Patients with cognitive dysfunction also found it more difficult to remember how to carry out testing by themselves, so preparing instructional videos and memory aids may be a solution.
Logistics
Testing is carried out in patient’s homes, which means Dr Clague-Baker has been travelling around the country to take readings, drop off and pick-up equipment. While not ideal, a workable solution has not been found as equipment is too valuable to be posted and asking participants to travel to a testing site would add additional stressors that would disrupt the results.
Findings
- Results are still to be analysed in depth, but preliminary data does appear to show differences between healthy controls and people with ME in relation to heart rate variability, VO2, Respiratory Exchange Ratio (RER) and lactic acid in some participants.
- There also appears to be a distinction between those with Orthostatic Intolerances and those who do not have this issue.
- The testing process involves some cognitive challenges, and there have been some really interesting results in relation to this from a physiological point of view.
Next Steps
Testing and analysis should be completed by the end of September, with findings then written up for distribution.
The team will aim to get the study published and hope to present at physiotherapy conferences, before seeking funding to run the study on a larger scale.
The team would like to thank the ME Association Ramsay Research fund and the ME community for their continued support.