UK: Physios for ME

[PhysiosforME]

Physios for ME celebrate our seventh anniversary

It is seven years since the formation of Physios for ME, and at what has now become an annual event, this weekend all four of us got together in person to reflect on our progress so far, catch up on all our ongoing projects and make plans for the next twelve months.We all get on so well...

www.physiosforme.com

Happy Birthday, @PhysiosforME !

Thank you so much

 

[Sean]

Thank you, @PhysiosforME. A very helpful article.

Yes, it is. Thank you. @PhysiosforME

Some comments:

This helps to explain the main symptom of ME/CFS, post-exertional malaise (PEM). Any activity that uses energy can cause PEM. There can be over 30 symptoms of PEM and people with ME/CFS usually experience PEM up to 24 to 48 hours after the activity. Called a crash, they can last days, weeks or months; some people never recover.​

I am not convinced the 'energy' is the right framing for PEM. It suggests an understanding of underlying mechanisms (e.g. mitochondria) that just doesn't exist yet. Of the current imperfect options I prefer 'activity capacity' and variants.

Activity capacity is a more general term that covers any active behaviour – physical, cognitive, emotional, and social, and to any degree, without presupposing where the underlying pathology may lie. I think is a useful practical distinction in everyday life for patients, and for helping non-patients understand the concept better.

It may turn out to be that the primary problem is with the biochemical energy production system itself, or it may be something downstream from that which blocks the normal use of that available energy, or it may that something else is demanding so much of the overall energy budget that many unrelated systems are having to operate in a compromised sub-par manner on a significantly reduced energy budget and functional capacity.

We just don't know the answers to these questions yet.

usually experience PEM up to 24 to 48 hours after the activity.​

I would phrase it as: ...usually experience the peak of PEM up to 24 to 48 hours after the activity.

Also, I draw a distinction between a single episode of PEM, and a full crash, which I regard more as the result of repeat episodes of PEM, with insufficient recovery time in between them (to the extent that is possible). A full crash is much more serious than a single episode of PEM.

I also think that PEM is probably a permanent underlying feature of ME/CFS, maybe even the, or at least a, defining feature. What differs is the degree of PEM, from practically non-existent, through to ongoing and extremely serious, debilitating, and disabling.

Lastly, planning, while relevant and useful, also needs to be accompanied by the equal recognition that one critical feature of ME/CFS is that there are large variability and unpredictability components to it, and they need to be allowed for in any planning.

That, of course, is particularly so for new inexperienced patients. Over time, mostly via lived experience and sheer necessity, patients will gain a better practical understanding of it, and find better ways to adapt and respond to, and where possible mitigate, the nature and limitations of the condition.

But even if it is possible (and I think it usually will be) to dampen down the variability and unpredictability – which is a substantial benefit in its own right, even just for quality of life independent of any practical gain in activity capacity – I think it will remain a significant feature require constant navigation and accommodation.

The real value, certainly at this stage, from clinicians like PhysiosforME is in being able to expedite that process for patients, to help minimise the difficulty, time, and cost of that early learning and adaption to often profoundly adverse changed health circumstances. The earlier in a patient's journey this can happen, the better the overall outcome is going to be.

 

[Jonathan Edwards]

I am not convinced the 'energy' is the right framing for PEM.

I agree. I think we can be pretty sure from both the clinical pattern and what science we have that PEM has nothing to do with having 'used energy'.

 

[Peter T]

I agree. I think we can be pretty sure from both the clinical pattern and what science we have that PEM has nothing to do with having 'used energy'.

The problem is that ‘energy’ in the general non scientific use of the word fits so well, that as @Sean says it is quite hard to find a more accurate replacement. Somehow ‘capacity for action’ or even ‘incapacity for action’ does not subjectively conjure the right feeling, though it might more accurately reflect current knowledge. In conversation I use the word ‘oomph’ but that is also most inadequate.

 

[Kitty]

The problem is that ‘energy’ in the general non scientific use of the word fits so well, that as @Sean says it is quite hard to find a more accurate replacement.

Yes, I agree. I'd phrase the sentence like this:

This helps to explain the main symptom of ME/CFS, post-exertional malaise (PEM). Any activity that uses energy can cause PEM.

 

[Barry]

Activity capacity is a more general term that covers any active behaviour – physical, cognitive, emotional, and social, and to any degree, without presupposing where the underlying pathology may lie.

But energy availability is the core requirement for all these things, it's fundamental physics rather than understanding of pathology. We may not understand the pathology of why people with ME cannot convert energy as quickly as they need it, but there is no misunderstanding or doubt that reduced energy is the core issue. What is very well known is that ME limits a person's energy availability for just about anything; anything a person does requires energy available to do it.

 

[wallfish]

I disagree strongly, @Barry.

But energy availability is the core requirement for all these things, it's fundamental physics rather than understanding of pathology.

The activities Sean lists surely share elements at the biological level other than a need for energy (in the physics sense), which is shared by all biological processes. My car needs energy to transport me from A to B, but when I have a flat tire, the problem lies not with energy conversion.

We may not understand the pathology of why people with ME cannot convert energy as quickly as they need it, but there is no misunderstanding or doubt that reduced energy is the core issue,.

A problem with energy conversion could be a plausible explanation for our illness, but I haven't seen strong research supporting this. I believe I have seen the absence of evidence for such claims mentioned on this forum.

A personal anecdote. In the first six months of my illness, I was terribly fatigued. The words 'I have limited energy' or 'my battery is empty' were accurate then. Nowadays, I am never fatigued, but I still get severe PEM (flu-like feeling and pains, in my case). In fact, I would say I'm relatively full of energy: I could go for a run if activity beyond my capacity didn't give me PEM. We don't know wether this limited capacity is caused by a problem with energy.

Statements involving the word "energy" are sensitive to the interpretation of the listener and lead to misunderstanding. I think it is fair to say we have seen some research projects that only make sense if you misunderstand patient's symptoms. The ambiguity of words like "energy" and "fatigue" play a big role in that.

@Sean's suggestion to use the word capacity is a big improvement.

 

[Utsikt]

My car needs energy to transport me from A to B, but when I have a flat tire, the problem lies not with energy conversion.

I’m being extremely pedantic now, but you could classify it as a problem of converting rotational energy to forward motion. Everything in physics is about energy in one way or another.

But I agree that there isn’t much that indicates that the bits that do work struggle to get enough energy to do said work. It looks more like some bits doing the wrong kind of work, messing up other bits as well.

 

[Barry]

I disagree strongly, @Barry.

The activities Sean lists surely share elements at the biological level other than a need for energy (in the physics sense), which is shared by all biological processes. My car needs energy to transport me from A to B, but when I have a flat tire, the problem lies not with energy conversion.

A problem with energy conversion could be a plausible explanation for our illness, but I haven't seen strong research supporting this. I believe I have seen the absence of evidence for such claims mentioned on this forum.

A personal anecdote. In the first six months of my illness, I was terribly fatigued. The words 'I have limited energy' or 'my battery is empty' were accurate then. Nowadays, I am never fatigued, but I still get severe PEM (flu-like feeling and pains, in my case). In fact, I would say I'm relatively full of energy: I could go for a run if activity beyond my capacity didn't give me PEM. We don't know wether this limited capacity is caused by a problem with energy.

Statements involving the word "energy" are sensitive to the interpretation of the listener and lead to misunderstanding. I think it is fair to say we have seen some research projects that only make sense if you misunderstand patient's symptoms. The ambiguity of words like "energy" and "fatigue" play a big role in that.

@Sean's suggestion to use the word capacity is a big improvement.

I may have worded things badly, but I still think energy is key. More like overall energy efficiency maybe. If a car seems to be losing power, it could be the engine not producing as much power as it should, but it could also be as you suggest a flat tyre absorbing far more energy than it should, or the brakes binding and doing similar. It could even be an ECU fault, with the computer refusing to honour the driver's request for power from the accelerator. No matter if it's energy not being converted as efficiently as it should on the input side, and/or energy being dissipated inefficiently on the output side, and/or energy control mechanism's going awry, it all comes down to a system-wide energy issue one way or another. So a battery can go flat quickly if the battery is faulty, but it can also go flat quickly if the battery is fine but the device itself is consuming energy from it much more rapidly than it is supposed to, or a power controller messed up. As you say, far too little is understood yet about the mechanism with ME, but it is nonetheless going to come down to energy processing one way or another.

But re-reading your comment, I realise you say that these days you do get PEM, yet not feel fatigued and could even go for a run; I confess I don't feel at all qualified to comment on that. My main experience of ME is from my wife's illness of 20+ years, and I'm very confident what I'm saying is very relevant to her illness. For my wife, what always is at the forefront in her mind, when I've discussed this with her in the past, is an extremely destructive profound lack of energy and feeling downright b***dy ill.

 

[Nightsong]

Our problems are potentially explicable without any reference to energy or its conservation in the sense that most patients understand it. Some kind of neural signalling loop that keeps producing "sickness behaviour" type signals - something that is maintained in the absence of well understood triggers such as the presence of a pathogen or IFN-alpha or so forth - would not involve "energy" as such.

It's easy for the average patient to conclude - if you feel completely drained, if you're lying in bed largely unable to move - that there is a problem with your body's energy production, just as if you're feeling flu-like much or all of the time it would be easy to conclude that some initial inciting infection is somehow hanging around. But that is not necessarily the case, and it has led to decades of repetitive and fruitless searches.

Mitochondrial disorders, disorders of ATP synthase, etc, don't look anything much like ME/CFS.

It also isn't where the emerging genetic picture is pointing us.

 

[wallfish]

I’m being extremely pedantic now, but you could classify it as a problem of converting rotational energy to forward motion. Everything in physics is about energy in one way or another.

Just for fun, I'll try to be pedantic back: in the conversion from rotational to translational motion, no conversion of energy (under the conventional definition) takes place if we ignore friction losses. Both forms of motion give rise to kinetic energy. Where a conversion does take place is from the chemical energy in the battery or fuel to the kinetic energy the motor outputs, which is then transmitted, not converted.

You can of course say that the flat tire increases friction and causes more kinetic energy to be converted to heat, and I'd have no retort.

 

[Jonathan Edwards]

But energy availability is the core requirement for all these things, it's fundamental physics rather than understanding of pathology.

Really not, I think @Barry. When my car won't go most of the time it is not a problem with energy. It is more likely to be some clever electronic block. Just like for humans everything is controlled by complex signalling that can override energy availability and also signal that 'energy is the problem',

 

[wallfish]

Some kind of neural signalling loop that keeps producing "sickness behaviour" type signals

Since we're on the topic of carefully choosing our words: "sickness behaviour" doesn't sit well with me either. Makes it sound like our chosen behaviour is the issue, not our symptoms.

I have seen it used multiple times on this forum; I underrstand it is an established medical term. From wikipedia:

Sickness behavior is a coordinated set of adaptive behavioral changes that develop in ill individuals during the course of an infection. They usually, but not always, accompany fever and aid survival. Such illness responses include lethargy, depression, anxiety, malaise, loss of appetite, sleepiness, hyperalgesia, reduction in grooming and failure to concentrate.

Reduction in grooming is the only behaviour I see in that list. The others all describe some internal state of the subject that an observer can only guess at. For example 'eating less' is a behaviour that could imply 'loss of appetite', but 'loss of appetite' is not a behaviour in my dictionary.

Would sickness response or symptoms be better? Why is the term sickness behaviour used?

 

[Barry]

Really not, I think @Barry. When my car won't go most of the time it is not a problem with energy. It is more likely to be some clever electronic block. Just like for humans everything is controlled by complex signalling that can override energy availability and also signal that 'energy is the problem',

But if some form of energy controller or interlock blocks or limits energy flow, then it still comes down to energy limitation. The person's problem ultimately down to energy limitation, no matter what is causing it, surely?

 

[wallfish]

For my wife, what always is at the forefront in her mind, when I've discussed this with her in the past, is an extremely destructive profound lack of energy and feeling downright b***dy ill.

Hi Barry, I hope I didn't give you the impression I want to doubt your or your wife's experience of this illness. I can't even imagine what twenty years of living with the illness, or caring for someone that suffers from it, is like.

I'll close by saying I think Nightsong puts it really well:

It's easy for the average patient to conclude - if you feel completely drained, if you're lying in bed largely unable to move - that there is a problem with your body's energy production, just as if you're feeling flu-like much or all of the time it would be easy to conclude that some initial inciting infection is somehow hanging around. But that is not necessarily the case, and it has led to decades of repetitive and fruitless searches.

 

[Jonathan Edwards]

But if some form of energy controller or interlock blocks or limits energy flow, then it still comes down to energy limitation.

That is not hat I was meaning. The problem is not an energy availability controller. Everything we see in ME/CFS suggests to me that there is a block to the signals that normally trigger energy usage. There is still plenty of energy available to the tissue. The effect has nothing to do with whether or not energy is available. So conserving energy makes no sense. If the problem was failure of energy availability we would expect the 'payback' not to be like PEM but more immediate and shorter-lived.

 

[Jonathan Edwards]

And yes, what we call 'energy' in common parlance is not energy in the physics sense at all. So we should not try to explain the sense of lack of 'energy' in terms of the physics of energy.

 

[wallfish]

Everything we see in ME/CFS suggests to me that there is a block to the signals that normally trigger energy usage. There is still plenty of energy available to the tissue. The effect has nothing to do with whether or not energy is available.

Did you mean to write "Nothing" instead of "Everything"? Otherwise I don't understand how that aligns with the three sentences after that.

 

[Jonathan Edwards]

Did you mean to write "Nothing" instead of "Everything"? Otherwise I don't understand how that aligns with the three sentences after that.

I think I did mean everything. Maybe a metaphor like this: Central ambulance service control sends out a message telling all drivers to stay at home and not go out because an asteroid is just about to hit (which it isn't). The vans are full of petrol. There is no need to conserve petrol. Even the drivers are ready there and the van engines are in top condition.

The problem is not a lack of energy but a lack of commands to use energy.

Anyway, Barry seems to arguing on the basis of 'energy' as in common parlance, which is not energy in the biophysical sense.

 

[Barry]

That is not hat I was meaning. The problem is not an energy availability controller. Everything we see in ME/CFS suggests to me that there is a block to the signals that normally trigger energy usage. There is still plenty of energy available to the tissue. The effect has nothing to do with whether or not energy is available. So conserving energy makes no sense. If the problem was failure of energy availability we would expect the 'payback' not to be like PEM but more immediate and shorter-lived.

Understood, and in my second corrected post I clarified that what I really meant was an overall system-wide energy limitation of some kind, be it energy input, or wasteful energy dissipation, or faulty energy control mechanisms.

But I do very much agree that something else is going on, given the delays between cause and effect. For my wife these can be quite long as for many people with ME, if our grandchildren come to stay my wife is a wonderful Nanny and cannot resist getting involved in all sorts of craft activities with them, but after they leave it can take her weeks to get back to her normal. Yet if out for a walk, if no short breaks she tires much more quickly than if she takes frequent brief stops to take a photo or two, and is akin to how she paces, as if her average overall energy efficiency doesn't dip too low if allowed these brief respites.

We also have a lovely dog who is nonetheless a bit "pully", and I call her my wife's power-assistance dog. I'm not so spry these days, and they both outpace me when walking if my wife has our dog on the lead. Alternatively if I have our dog on the lead then I move faster and my wife is left behind, I find my pace frequency is the same but stride length increases significantly. Same principle as an electric bike, where it provides power assistance in proportion to the power you put into the pedals yourself

And yes, what we call 'energy' in common parlance is not energy in the physics sense at all. So we should not try to explain the sense of lack of 'energy' in terms of the physics of energy.

This I find hard to accept. Energy is physics no matter what. But what I do think people confuse very much with ME is using the word "energy" in its generally meant usage, which is confusing and misleading because what they really mean is power, which is energy per unit time - but people just speak of energy. A key issue for my wife, and other people with ME from what I read here, is things taking them so much longer than it used to. So getting to the bathroom for instance is much harder and takes so much longer, which smacks strongly of the flow of energy being much reduced, and thereby taking much longer to do the same thing than before - reduced power. But I also agree it would get even more confusing if we tried getting people adopting "power" into normal conversation. But observing my wife, her real big issues are limited power, and delayed but major impact on power availability to do the things she normally would, if her pacing fails her.