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Physios for ME secure funding for research

As physiotherapists with an interest in Myalgic Encephalomyelitis (ME), we are keen to understand more about what’s happening physiologically when people with ME try to carry out normal daily activities. We know that even simple activities such as getting dressed can cause an increase in symptoms and we wanted to try and understand what might be happening in the body to cause this.


From looking at the findings from emerging research, we know people with ME have;


· an abnormal physiological response to exercise when at maximum capacity; research studies from the Workwell Foundation and others in America have determined that people with ME have an abnormal aerobic metabolism (problems converting food into energy using oxygen) during “Cardiopulmonary Exercise Testing” (CPET)


· abnormally low levels of VO2 maximum scores; they reach their anaerobic thresholds quicker and are slower to recover than healthy controls


· greater levels of lactic acid when exercising compared to healthy controls and have an impaired capacity to recover from acidosis; this means that at maximum exercise capacity people with ME have abnormal aerobic metabolism.


Studies so far have tested people during maximum exertion. However, it’s not clear whether these physiological abnormalities occur during normal levels of activity, such as daily activities like washing, dressing, and moving about etc.


We are therefore really excited to announce that we have received a research grant from the ME Association Ramsey Research Fund to carry out a feasibility study to investigate this in more detail.


Our study will be called; “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.”


A “feasibility study” aims to determine if it is feasible to carry out a larger study on this topic. While we are really interested in the potential results, we must first find out whether it is acceptable to people with all levels of severity of ME to complete the testing procedures and if we can recruit to the study. We are very cautious about causing any detrimental effects to those who take part, so this feasibility study is vital to determine whether the tests are going to be safe and effective to apply on a larger scale, as well as check that the outcome measures we use (the scales we use to measure) are suitable.


If it’s feasible to carry out a bigger study, we would then hope to apply for more funding from the National Institute of Health Research (NIHR) in the UK and/or other funders to determine the oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities.


A bigger study may be then able to determine the effect of normal activities on these physiological measures and ultimately it may then be possible to develop a diagnostic test involving non-maximal exercise testing as well as investigating the use of heart rate monitoring as an intervention to pace activity and prevent Post-exertional Malaise (PEM).


We would like to thank the ME Association for providing the important funding for this study. You can read their statement about the study here.

How you can be involved


We are really excited to run this project but we have to wait for a few things first. We still need to gain ethical approval before we can proceed. Most importantly we need to wait for the issues around COVID-19 to be resolved, so at present it is very difficult to provide a timescale of any sort.


We are hoping to recruit 20 people with different severities of ME in the UK so that we can measure their responses to everyday activities. We’d be looking for adults only, and to reduce costs we’d probably be focusing on people in the Midlands, although this is to be decided.


We’ve already experienced the amazing level of engagement from the ME community, so we can anticipate lots of people wanting to come forwards to help. We’re not in a position to recruit right now so please hold back any offers until we release information about becoming a participant. We don't anticipate this going ahead until next year given the current pandemic, but we will provide updates and more information as things progress.

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We want to link with physiotherapists or people with ME.

Whether you need advice, resources or just to share your story. 

Contact us at physiotherapyforme@gmail.com 

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