Trial Report Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study, 2023, Clague-Baker et al

ABSTRACT

Background and objectives
Individuals with Myalgic Encephalomyelitis (ME) have shown altered physiological responses during maximum cardiopulmonary exercise testing. However, maximal testing is not representative of the everyday activities reported to cause or increase symptoms in ME, and is not accessible for those with severe or very severe illness. The aim of this study was to assess the feasibility and acceptability of a home-based testing protocol to measure physiological responses in ME to everyday activity.

Methods
Researchers attended participants’ homes to collect data and provide equipment for independent testing. Adults with ME who met the International Consensus Criteria wore a portable metabolic assessment system and a physiological stress monitor. Blood pressure, heart rate, oxygen saturation and lactic acid were assessed during a range of everyday positions and activities in their own homes.

Results
Online recruitment yielded 70 volunteers in 24 h. 17 eligible individuals reflecting a range of illness severities were enrolled. All participants found the procedures acceptable with 12 (70%) subjects completing every listed activity. Apparent physiological abnormalities were identified in all participants.

Conclusion
Physiological measurement during everyday activities was feasible for our participants who represented a range of ME severities. Activities must be adapted for different levels of severity to avoid significant symptom exacerbation. Further research is needed to develop home-based assessment protocols to advance the biobehavioral understanding of ME.

Open access, https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2245584

 

The cognitive task (counting sevens) effect struck me.

An extra thought was the descriptors of some of the moderate patients read as if they were tending more towards severe.

 

"Recruitment was exceptionally rapid and completed within 24 h. This demonstrates that people with ME, even those who are severely affected, are keen to be involved in research."

 

Yes, that's interesting, and shows that we can be exceeding our limits, even if we don't think we are.

Several of them seem more severe than their designation & the woman described as mild seemed very unwell.

I don't think it's always true that people who are designated as mild, because they are still in work and/or caring for others, have milder symptoms. When I was trying to remain in work ( sometimes part-time & with extended periods of sick leave) I felt terrible & slept almost every hour out of work.

 

Agreed, I have remained in work full time (except these last 3 months) by working from home, barely leaving the house once a week to do something like go to my grandparents house for a cup of tea on a recliner, have had horrible symptoms a lot of the time, not completing all self care but am supposedly mild because I work.

Regarding the monitoring, this sort of thing might be useful to me to understand the relationship between activities (cumulatively, as mentioned above) and post-exertional pay back symptoms, probably wouldn't do it constantly, but rather do it for an initial period of some weeks to learn from it and then maybe once a quarter for a week or two to see whether things are the same.

 

Would it be worthwhile repeating this throughout the menstrual cycle?

 

I have nothing but praise for the authors and the quality of their work. They wrote their paper at a level any college graduate can understand. They conducted a novel experiment, made a real effort to accommodate pwME, presented their findings straightforwardly, and emphasize the points that are important for our dignity (debilitating nature of symptoms, PEM, and real biological abnormalities)

Their findings were very cool. They discovered that pwME exceeded their anaerobic threshold doing daily activities like making breakfast, and they discovered something mindblowing: That all the patients who could complete the cognitive assessment exceeded their anaerobic threshold just by thinking.

 

I would like to see effects of having a meal and dealing with ingestion/digestion. Could have impact on severe/ very severe pwME and their nutritional support.

 

I agree very much. I'm not sure that all aspects are reflected in the data though. For me these measurements would likely show erratic activity patterns with relatively preserved function for short periods, and periods where te body is struggling just to walk upstairs or empty the dishwasher. At any given moment I can look anywhere from energetic and healthy to obviously sick and weak.

 

Indeed - good to see these things being looked into and methods seeking to show this. What a relief. Plus, particularly if we begin to note this in relation to the methodological approach of e.g. CHalder-type stuff and BPS approaches expecting people to fill in goodness knows how many questions on a survey during 'an appointment' or to get home after one or a trial. These would be people that, whatever their severity would have travelled to get there and probably if they'd been forced through combative CBT were at the end/shoved beyond their limits of health and defences by the time they were being faced with these.

So they need to be seen and mapped 'scenario-wise' as what it is: someone faced with all of these health risky awful symptoms and being told 'just fill this in as we want you to and you can begin to go home to safety' at the point where a human being would be unable to process the perceived and real risks associated with anything else in selecting what to put on the form and its implications to them re: Maslow needs like access to care or things on records tha could affect that or finances and so on. What would anyone else do in that situation? And the fact many of these are 'restrospectives' when patients are effectively 'captured' under that clinic in such a way makes it even more of a question about should such 'measuring' even be being allowed to take place and whether that data be seen as anything other than a consequence of that historical power issue being applied to people whose body was under unsafe exertion at the time?

Add in the other forms of perceived coercion and I think someone needs to consider comparing these scenarios that pwme would be being put in to literatures on e.g. 'stress-testing' and effects of situational scenarios where coercion is used and tested which I'm assuming must exist for military or other parts of psychology where the law is needed to protect individuals/humans from these things.

 

Cruel and ethically difficult but given the other problem with those who end up in hospital terribly poorly is the interruption to rest/difficult environment with regards noise and light etc impacting absorption this would be interesting as would the effects of noise/lights and so on regarding likely energy use and health impact but also how it cumulatively adds to the meal and digestion 'load'.

It feels like pwme are in catch 22s when they need to enter a hospital to get such support and yet the environment means any improvement from that has to be weighed against it because there isn't currently an understanding of how bad and counter-productive to health such a situaiton is. Seems like just another way that someone might finally apparently 'be given x' and then treated in other scenarios unideally and then outsiders think they are 'proven wrong' when they get worse instead of better, even though it has actually be undermined etc.

 

That's an excellent idea. Digestion increases your metabolic rate. If cognition can tip you into anaerobic metabolism, digestion probably can too.

Also, I'd really love to see a similar study on mild ME. Do people with mild ME exceed their anaerobic threshold doing simple daily activities, even if it's not quite enough to tip them into PEM? Does AT drop when doing daily activities during PEM?

 

My guess is that they do, but not as easily or often.