Ron Davis Is Evaluating a PEM Wearable Device

[Gemini]

Ron Davis and his team are considering developing a wearable device for ME/CFS patients to detect PEM and set off an alarm alerting them.

He indicated the device is a sweat sensor worn on the wrist capable of measuring lactate and other biomarkers of PEM.

Ron presented this and other devices they're working on at the IIME Conference on May 31, 2019. Video of his entire 40-minute talk is here, PEM device discussed at 23:53:

www.investinme.org/IIMEC14.shtml

 

[Murph]

It it is so hard for us to find out, when something is being talked about, whether it is still at the idea stage or the put-into-practice stage. I remember first hearing about this wearable sensor a looong time ago. I hope it has moved toward prototyping.

 

[Hip]

According to the ME/CFS patient subtypes proposed by Myhill et al, not all ME/CFS patients generate excess lactate during physical exertion.

The group A subtype produces excess lactate, but the group B subtype does not produce as much lactate.

Group B patients are more severe than group A.

 

[Gemini]

It is so hard for us to find out, when something is being talked about, whether it is still at the idea stage or the put-into-practice stage.

@Murph in his talk Ron mentioned the device was made several years ago and that they possibly could work with a device manufacturer to get it produced.

If they could give a manufacturer the engineering specs for it and components could be easily assembled perhaps it could be made available sooner. Maybe we'll hear more at the OMF Symposium Sept 7th?

I'm so grateful to Ron and his highly skilled team for working on these types of projects. This device would benefit ME patients, their physiciians, and researchers.

With PEM, thirty years ago physicians told patients to stay within their "energy envelope" to avoid a "crash."
It would be "amazing" to have an assistive device that enabled us to do that, guided clinicians with treatments, and provided researchers with valuable data for their studies.

@Janet Dafoe (Rose49)

 

[Gemini]

According to the ME/CFS patient subtypes proposed by Myhill et al, not all ME/CFS patients generate excess lactate during physical exertion. The group A subtype produces excess lactate, but the group B subtype does not produce as much lactate. Group B patients are more severe than group A.

@Hip very interesting. Thanks for posting the information.

When I went to the link and read the quote from the Myhill research, it reads "we would predict" the lactate values of group A and B. I take that to mean they didn't actually measure lactate levels but are inferring them. Do you know by any chance?

If so, I think a wearable device that can actually measure those levels in patients would greatly enhance the research of Myhill and that of other groups.

 

[Mary]

With PEM, thirty years ago physicians told patients to stay within their "energy envelope" to avoid a "crash."
It would be "amazing" to have an assistive device that enabled us to do that, guided clinicians with treatments, and provided researchers with valuable data for their studies.

I've often wished I had a device which showed my available energy, and which flashed red when I was getting into the danger zone (risking a crash, or PEM). This sounds like it might possibly do something similar - I'll be very interested to give it a try if/when it actually comes into being! I wonder if it might even work to convince skeptics that PEM is all too real?

 

[Hip]

@Hip very interesting. Thanks for posting the information.

When I went to the link and read the quote from the Myhill research, it reads "we would predict" the lactate values of group A and B. I take that to mean they didn't actually measure lactate levels but are inferring them. Do you know by any chance?

I have not looked at the Myhill papers for some time, so I have forgotten the details, but I think they are inferring them, because they had some theories about how ME/CFS patients with energy metabolism blockages are making up for their energy shortfall, and they conceived of two ways the shortfall is made up for, which correspond to the Group A and Group B patients.


Note that a thread was posted today on a new study which failed to replicate the Myhill et al energy metabolism lab tests, which now casts some doubt on the validity of their lab testing of ME/CFS patients. I have not had any time to consider whether this failure of replication also impacts their theory of the Group A and Group B patients.

 

[Chelby]

Wow, that would be really cool!

Neil McGregor found lowered lactate and lowered creatinine. Maybe it could detect lowered creatinine or increased HDAC?

https://www.ncbi.nlm.nih.gov/pubmed/?term=HDAC+chronic+fatigue+syndrome

 

[Gemini]

I've often wished I had a device which showed my available energy, and which flashed red when I was getting into the danger zone (risking a crash, or PEM).

@Mary many years ago when PEM researchers came up with that special formula for age-adjusted maximum heart rate for us, some patients got Timex Personal Heart Rate Monitors (watch on the wrist, strap around the chest with sensors). It was helpful for pacing.

Ron mentions measuring heart rate as well with what looks like a very user friendly device.

At IIMEC14 someone asked NIH's Vicky Whittemore if PEM is found in any other diseases. She responded "Not that we know of" so your point that a device like this might work to convince skeptics is excellent!

 

[Mary]

@Gemini - I did have a Fitbit, but it didn't seem that useful. I remember reading about the special formula for age-adjusted maximum heart rate, but it just didn't seem that helpful to me. e.g., if I was doing grocery shopping, regardless of my heart rate, I had to finish it. I did a poor man's tilt table test a year ago or so and passed with no problem, though I just recently found that I may have developed POTS - have to do more experimenting, but almost overnight it seems my BP is dropping and HR shooting up when standing . . .

 

[Gemini]

on another thread @wigglethemouse pointed to this Ron Davis' PNAS article(2017) about a sweat sensor:

https://www.pnas.org/content/114/18/4625

 

[Gemini]

Earlier this year @Murph posted a comprehensive NY Times review article about sweat sensors here:

https://forums.phoenixrising.me/thr...at-a-topic-also-mentioned-by-ron-davis.62955/