Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 2023, Moore, Hanson et al

I wonder if anyone's really dived into low-tech measurements for PEM, which can be compared to non-PEM states in the same individuals? Temperature fluctuations, continuous heart rate data, half hourly BP measurements, blood sugar, urine output, all the old-fashioned stuff. It's probably at least as likely to show up differences as approaches like analyses of metabolites that need expensive machinery and a lot of processing.

 

I'm imagining those medieval healers, looking at--and sniffing--the urine. Who knows, maybe they could be better at diagnosing PEM than the latest RNA scanners.

Maybe dogs can sniff out PEM?

 

Might be in jest, but that's a sensible idea!

It wouldn't surprise me, and trying them on the scent of PEM/non-PEM clothing might be as cost-effective as some of the other research ideas. Especially given that there are already established training protocols from other conditions, and dogs' noses aren't limited to narrow categories of molecules the way scientific instruments are.

 

I think you missed out tasting the urine possibly deliberately i read some that some gp's were still doing that regarding diabetes .

 

I did miss out asking whether dogs might be able to differentiate between people who have ME and people who don't, though. That's every bit as interesting a question as the PEM/not PEM one.

 

Important also that this sort of thing is put out and expanded on further in research so that adjustments and action-consequence is made clear in descriptions of the conditions and things like workplace policies and probably things like where people go into hospital and need to be away from disturbances etc.

Bottom line is that noone believes how long one episode of PEM takes to recover from - even if they claim they 'get ME', they assume this is an exaggeration because it doesn't make sense to them that for someone severe them putting you through an over the top conversation barrage/inquisition or heavy noise or standing too long could take that long to recover from.

And how given that happens to you more often than 2 weeks it doesn't add up - no, that is why people go downhill, because some are never allowed to recover from the last over-exertion before someone else does it again or they have to do something they shouldn't because there isn't sufficient help for them - again normally because noone believes that you can't do x y or z. And of course then there is the horrible narcissist 'bad science' of them taking someone ill and in PEM and making them do it then thinking that has proven them right ..because you did... and then they walk away and take no responsibility for the ofen long-ermm damage that follows from them having done that.

Funny how when the same people have flu, and then end up off work longer if (that type rarely do and take to their beds far faster than the diligent type who get ME) they forcce themselves to do something they shouldn't like try to shower or go to work, they don't see that as strange. And ME when you have it is just an ongoing never get a break from those around you version of that in that way.

It would/will be really interesting if they can take these estimates and then take measures of kinds from the same people over those time periods (say if one person has 2 weeks vs one who has 1 week then how does that 'cycle' vary by comparison) see if there is anything to spot that could be used to calibrate level of and stage of PEM.

 

(sorry for the late reply, I was directed here from some other thread..)
I have had this notion of ME symptoms in non-PEM state as "permanent PEM". The idea is that just breathing is enough an exertion for severely sick patients, so that they are constantly bed-ridden with tubes hanging off their orifices. And moderately sick patients would struggle day in day out as result of ADL. What we normally think of PEM is then even more worsening in fractal sense. (Hence, you get worse and worse as you continue to exert despite PEM, which appears to be a common problem for new patients not well versed with pacing). As a self-proclaimed "recovered" patient, my only remaining problem now is PEM. Normally, I'm fairly symptom-free and I can take care of all ADL. But then I struggle for about a week after doing strenuous exertion like skiing or 20+ mile biking.

If we look at ME symptoms in non-PEM state as "permenant PEM", then curing PEM would cure ME.

 

"On social media, some patients have posted that they experienced a very prolonged recovery from the 2-day CPET. Given the potential for prolonged and potentially severe disability in ME/CFS, these anecdotes have prompted hesitancy to undergo a 2-day CPET. As a response to such patient advocacy, we monitored recovering subjects in provocation studies that were primarily designed to look for molecular mechanisms of PEM. Prior to asking a person with ME/CFS to undergo a 2-day CPET, it is important to receive informed consent, and the most significant risk for a person with ME/CFS is that she or he will have a significantly prolonged and disabling recovery. Our data suggests that around 7–8% will have a prolonged recovery of 1–2 months, with a very small percentage of ME subjects feeling that they never recover.

It is difficult to verify a participant’s perception that a 2-day CPET leads to non-recovery because once the subjects left our laboratories after the 2nd CPET, they returned to their own environments, and we had no control over internal and external stressors. It is thus not possible to conclude that the 2-day CPET itself was the sole proximate cause of non-recovery, though we acknowledge that it could seem that way to any subject who does not recover."

Am I reading to much into it, or is it weird that they used "could seem that way" instead of "could be the cause"?

 

Reminds me of Nath that keeps on saying pwME are “complaining” about X, Y, Z instead of a more obvious “suffering from” or “experiencing”.

 

Its completely irresponsible! Of course a small proportion of people will stay worse after a CPET - all intense exercise carries that risk for pwME why can't they just be upfront about that. This is like trying to cover their own arses legally instead of providing informed consent.