Video: Postural Biomarkers as Outcome Measures for ME/CFS, Suzanne Vernon, PhD, 2020

Another fatigue study? How will they differentiate between any other chronic condition that involves fatigue? Are couch potatoes included?

 

I assume, although don't know, that the moderate and severe patients were already diagnosed through appropriate criteria with ME or ME/CFS, whichever it is being called, and that PEM was a required symptom. The study seems to be intended to be a PEM-inducing study more than a fatigue study.

 

Ok. The cynical me wonders, though. Most research endeavors fatigue-related seem to have dubious effects on our community, at least historically.

A) Other diseases/conditions have PEM, or PEM-like similarities.
B) Not sure researchers as a whole know how to induce PEM reliably. Most don't even kow how to define it.
C) Appropriate ME/CFS criteria defines a broad syndrome that could be caused by many different things not peculiar to what some individuals may consider classic ME.

But all good points.

 

Are they conflating POTS with PEM? Do they even mention PEM? POTS is just a symptom/manifestation in some ME/CFS patients; not all pwME suffer from it, and it occurs in non-ME/CFS peeps as well.

 

Yes, hence my question as to whether they are actually gauging the impact of POTS, ie, it's a 10 minute lean test.

Only if they can distinguish ME/CFS from other conditions. Even then, what are they objectively capturing? Signs that suggest a proclivity or disinclination for or against being upright for periods of time?

Give me a biomarker I can demonstrate in bloodwork, or spinal fluid, or MRI. Please.

 

I haven't watched the video (I find it difficult to take in *information* from videos - TV is different as I mostly watch fiction there so it doesn't matter if I forget things or don't take things in very well). So this is based on @Trish's brief description.

Wearing this device would be difficult for me, as I recently found that just keeping one leg up helps me a lot. Not completely, but it's a lot better than having both legs down - both legs down I have to go to bed earlier to get both legs up. One leg down I manage to keep going (albeit sitting of course) for longer. Possibly a couple of hours longer - I haven't really tried to measure it. I'm talking one leg horizontal for most of the day once I'm up and dressed.

 

Apologies - I'm upright (irony there...) and can't watch the video right now, as I feel lightheaded and nauseous, and must go lay down soon.

Thank you to these researchers/clinicians for all their wonderful work.

But, what I would like to know, and this may apply to other long-termers, is what is the POTS, OI etc. doing if anything to our cardiovascular systems? For example, long term, does ME lead to congestive heart failure, or other cardiovascular problems? We really need cardiologists on board with the ME community.
Unfortunately, most are not. I understand these postural studies will hopefully get cardiologists interested, but when, is one of the pressing questions.

Thanks very much again to these researchers.

 

They actually say that one of their goals is to be able to objectively measure the efficacy of a given treatment in a clinical trail, I guess as a side effect of accurately measuring upright posture for extended periods of time. Not sure how that compensates for soldiering through, or motivation, among other things.

Right. I'm not really clear how productive actimeters are, either.

As opposed to second-guessing patient reports? Do you not see a possible misuse of these monitoring devices? Will they reliably report the patient condition as she feels vs behaviour?

Sorry, not trying to be at odds with research, just weary of so-called fatigue studies.

 

Good question, although, if I recall correctly, POTS is speculated to be a problem with the brain. Regardless, perhaps cardio problems may emerge as a downstream effect, should that speculation be correct.

 

Even though I spend a lot of time with my upper body horizontal my legs aren't, they are in various positions, sometime even above head height (foot on back of sofa whilst lying down).

My lower legs also get moved/rocked a lot - almost constantly when things are bad. All whilst I am lying down on my back.

So I'm not at all sure that a device which measures movement and angle and tries to determine upright status from that would give an accurate picture in my case.

 

The device is going to be useful but I'm a bit skeptical about orthostatic intolerance being a reliable marker of ME/CFS severity. It's an important aspect but I think relying on it too much could be misleading. In my experience there are serious difficulties functioning years before meaningful orthostatic intolerance appears.

I think orthostatic intolerance is something that appears somewhere along the disease progression, for some it will appear earlier, for others later.

 

What's sad is that this information is much more significant when compared with former selfs, which is impossible to do. My activity levels have dropped 90-95% compared to my healthy self and even that is hard to account considering that reading and writing, which I used to do much more of, would not show up and neither would programming, in fact most of the work I actually did.

Still, more relevant data can be useful in ways we can't foresee. We have so little to work with.

I wonder whether location data or something similar could be useful. Since my phone is connected to my Google account I get year-end updates. I always have my phone when I'm out so the data are reliable. I traveled 289km in 2019. Visited 6 cities. I only have data from 2014 and forward, when I was already sick, and the drop is still significant.

And still, I'm on the low moderate end. So far from the common perception.

 

Another thing about orthostatic intolerance - patients who are deriving (at least) some benefit from treatment of OI may still have very severe ME.

 

edited, unfortunately, my ME brain wrote basal ganglia instead of brainstem. I have corrected it now. (the basal ganglia are involved with speech and movement disorders such as parkinsonism and may be damaged in some people with ME as well)

Years ago, before CFS, one of the symptoms of ME was considered to be brainstem and hypothalamic dysfunction. This meant that homeostasis was damaged, such as temperature control, sugar control and so on but also dysautonomia.

In this thinking there was orthostatic intolerance because the complex regulation of blood flow against gravity was also worsened by the brain problems.

Some of us may have POTS as a separate disease like people without ME but I believe that a symptom of ME damage is being taken as being the same. Anything that helps POTS may help us but things like building muscle tone in the legs will not.

I'm trying to say that POTS may be caused by deconditioning in the others but it is a common symptom of ME even when we are fit.