Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

I'll have a forage tomorrow ... if I remember! I think it related to some trial or other - non ME.

 

ahh, yes, so that then puts the onus on them to prove objective benefit?

crikey, I can see how our arguments have been so easy to dismantle & ignore.

If worsening of symptoms is not considered 'harm' in & of itself, & there are examples of conditions in which worsening of symptoms is in the context of overall benefit.... it becomes easy for professionals to dismiss the patient complaints as 'they don't know what's good for them'....
Well it's grossly patronising, but ok then possibly we don't.... but NEITHER DO YOU! Because you can't prove objective benefit either.

ETA- lol just to clarify I hope its clear that the shouty words were directed only at the BPS juggernaut
???

 

I agree that there is a lack of longitudinal study to look at functioning, level of activity and level of disability, just to name a few. Optimally this would need to get started as soon as the beginning of the illness which of course present challenges.

In regards to causality of exercise being harmful, i like the concept of a (metabolic) trap when we think about the disease. Regardless of what one does in order to get better (and have patients ever tried many things), you are still in the trap and can’t get out. If you are trying to exercise yourself back to health, some may actually cause permanent damage, while other will recover to a degree but not fully. Both outcomes does not change the fact that they are still in the trap. I am not sure that the metabolic trap as stated by Ron Davis and his colleague is the right one, but it is a concept that makes sense. There is the factor X that prevents us all to get better.

 

I think we have enough evidence now to be talking about the response to energy demand, not just exercise. This might also include immunological, emotional and cognitive energy demands. What seems to be lacking is what many call respiratory reserve, the capacity to ramp up aerobic energy production on demand. We go to anaerobic energy production far too quickly. Even the cellular evidence, both Seahorse testing and the nanoneedle, suggest this is the case. Its not just CPET. WHY this is the case is still an open question, though the pursuit of whatever is in the blood is likely to be fruitful.

 

They avoid this like the plague. EVERY study that uses objective outcomes for CBT/GET has failed, either showing no benefit or a decrease in capacity.

 

Its the objective outcome in scientific studies that is indeed lacking. Its only been since about 2007 that this idea has started to be pursued.

Let us be clear though, what we can scientifically prove for the disease entity Myalgic Encephalomyelitis, what we can clinically prove for individuals, and what individuals experience, are three different things. I hope to return to this later.

 

This is the post I was thinking of. Not a trial, but @Jonathan Edwards' thoughts regarding possible investigations:

https://www.s4me.info/threads/objec...tiguability-lurija-institute.4241/#post-86922

 

This.

The worst increase in my entire symptom complex was during a week on Augmentin for SIBO that included moderate diarrhea (every 2 hours or so for a couple of days). Sleep, sensory sensitivities, prostration -- all worse, along with something new to boot: seizure-like episodes that have continued to this day when I crash. Indeed diarrhea has caused bad "PEM" for me on many occasions, a couple of which I either never recovered fully from or only did so after a year or more. My hormonal cycle is another cause -- or at least, a bloody-strong correlate-- of bad "PEM."

It's a tricky term. I don't know what to replace it with, but it's a problematic term on a number of levels.

 

Exactly. It would be interesting to know if the physiological responses to energy demand for pwME is unique, or if similar to some other illnesses. And although PEM is a significant symptom, it is not the only one. @Jonathan Edwards?

 

I am not sure what energy demand is. I prefer to think in terms of molecular signals rather than 'demands'.

 

You must pay by direct debit. We're on a " pay as you go " basis.

 

My wife used to get behind me and push when I was walking, especially if going up an incline or up the stairs. I've just realised that she hasn't done that for a long time, so I must be improving.

I occasionally go for a short walk if I feel up to it, not for exercise, but because after a couple of days of being sedentary it does me good to move a bit - fresh air, get the blood circulating etc. I've recently come to suspect that sometimes some of my symptoms (stiff neck, headache) aren't necessarily from ME, but from slouching on the sofa for days on end, so a short walk every few days counters that.

 

I don't see why. All you have to do is pass us some questionnaires, get us to assign numerical values to how much harm exercise causes us, and there's your evidence. For the giggling psychologists to demand a higher standard of evidence than that would be pure hypocrisy.

 

Maybe. But if a given undertaking (by a person or any other energy consumer) requires energy to be supplied at a given rate, then that is down to physics. If the energy being demanded is not met then the undertaking cannot be fulfilled at the required rate.

 

Yes, I would be very surprised if an illness like ME/CFS did not lead to secondary issues that might easily be confused.

 

I have wondered where the physicists are in ME research.
Physicists have made a huge difference to cancer research- quantum biology has evolved in response.
ME would seem to be a prime candidate for deep molecular work.

 

The required ATP flux to achieve exertion/maintain activity. The type of metabolism that is used to maintain this flux depends on the kinetics of the demand. Anerobic glycolysis for example, is used when oxidative phosphorylation/citric acid cycle, fatty acid oxidation etc are too slow to meet the energy demands. (if there is insufficient supply, then obviously there will be a loss of expected function. Gee, I wonder if the brain has some sort of sensory mechanism to warn of this potential loss of function? Hmm )

 

The mechanism will be one that leads to patients engaging in energy conservation behaviour, also known as pacing or perhaps "being lazy and unmotivated".

I think I can sort of distinguish at least two kinds of fatigue, one that follows exertion, while the other is something that I can wake up with on the day after and which appears to tell me that my batteries are low and that I must manage my energy reserves carefully.

 

In a person who doesn't have ME, what happens when the metabolism can't meet the energy demand?

I know in physical activity, anaerobic glycolysis will happen - what happens if that still isn't enough to meet the demand? You just collapse?

And what about when the exertion is mental? You just black out or fall asleep eventually?

For a person without ME, can long-term damage happen from pushing themselves to the limit of their energy capacity? (I know that long term damage can happen in anorexia, but I think that's for different reasons?) (I know somebody who has diagnosed problems with adrenal glands due to living an extremely stressful exhausting life for several years - but I don't know if that's due to the stress moreso than the exhaustion.)

 

And for any system where power (=> rate of energy transfer) is regulated, then signal paths are involved. So if energy flow is being limited below what is expected, then it is not inconceivable it is being regulated too low - due to some signalling fault within the regulation mechanism. Regulation mechanisms rely on the signaled information fed into them, and if the signals are screwed then so is the regulation. But I hasten to add, all speculation. Though I am truly convinced my wife's essential problem is power being restricted below what her body requires at any given time.