Who Hijacked ME?

I no longer fit into any CFS definition either. I did for many years, if you ignore most of my systems as they are not mentioned in CFS definitions, but about a decade ago that changed.

 

I think patients with a similar magnitude of fatigue as ME/CFS patients would have similar 2-day CPET results.

 

I don't think that is strictly true. People with cystic fibrosis and heart disease have extreme fatigue and very bad results on CPET testing but they achieve the same level each time it is done.

Fatigue is no more part of ME than it is for other diseases, certainly not the central factor that the minimizers of the CDC (who included Michael Sharpe) gave it. It is becoming apparent that our disease is an inability to produce enough energy when it is needed. That can lead to fatigue and it may be that other diseases have a similar problem with cellular respiration but not all fatigue is the same.

In many diseases such as RA and MS it is the sheer effort of doing anything with a body that does not respond properly which leads to fatigue. My friend had cerebral palsy and had to throw her body to get the momentum to walk. Climbing stairs was one slow effortful step at a time. It was no surprise that she often had to stay in bed to recover but there was no suggestion that she could not make enough energy. Rather her body needed more energy than a healthy person to do the same thing.

PEM is not real in itself but reflects an inner process that is broken. When we discover what that is - and we are getting closer - it will be an indication that the broken process needs to be looked for to see if someone has ME. That is why we can't describe it well. Think of the myriad things that can go wrong in MS. Once we knew it was demyelination and could look for that there was no need to do tests like giving someone a hot bath and seeing if their walking got worse.

Fatigue may well be an evolved property which protects the body if there is a sudden drain on energy, like shivering if it gets cold. There may be as many reasons for fatigue as there is for needing to warm up.

 

I get payback after just 20 minutes (although it takes a while to fully set in), so not every body has that 1 to 2 day delay.

 

That is to confuse two separate things. I would guess that most PwME experience some kind of exhaustion, need to rest etc, soon after exertion and that effect may take some time to resolve, but that is not what has been consistently described as Post Exertional Malaise. PEM by definition is a delayed response, with the delay usually placed in a 12-48 hour time frame.

Some argue that PEM, with its delayed 12 Hours+ impact is a cardinal feature of ME/CFS that can not be excepted, and that therefore no PEM = no ME/CFS. I don't think that is helpful and the range of ME/CFS characteristics may be hard to pin down with precision based on symptoms alone. But I can't see any value in classifying any negative response that closely follows exertion as being PEM when we have a well established notion that PEM is characterised by a delay of at least 12 hours.

Certainly there is benefit in better describing the range of disability experienced by PwME but stretching the meaning of established terms to accommodate additional variation of response to (in this case) exertion only serves to attenuate the meaning of those established terms. We've had enough of that from a certain academic sector.

 

Emphasis on PEM to the exclusion of everything else has always been an oversimplification - probably favoured by those who suffer only , or mainly, the "classic" PEM.

 

There haven't been any 2 day CPET studies of cystic fibrosis or severe heart disease, so I'm not sure where you got that idea.

 

Certainly there should be no unwarranted or at least no unacknowledged assumptions - we know so little about ME/CFS that would be foolish. But if all experiences are to be acknowledged we have to use precise language to avoid conflating one idiom, label or experience with another.

Currently we have on the one hand an argument for PEM being a cardinal feature of ME/CFS together with explorations of what the pathophysiology of the (typically ?) delayed response of PEM means for ME/CFS, while on the other hand there are arguments about the utility of the term 'malaise', expansion of the chronological aspect of PEM that obviates the significance of delay, and the potential that PEM (however we are choosing to define it) is not unique to ME/CFS. Amongst all this definitional debate there's a danger PEM as meaningful term will be lost.

It seems to me that the feature of 'delay' is the most interesting aspect of PEM; if it represents evidence of a definable physiological process then that would be significant as it suggests complex biology that could be useful in unravelling any pathophysiology that is unique to ME/CFS. Symptoms that are associated with exertion without any significant delay are recognised in many medical conditions, if these non delayed symptoms are important in ME/CFS then they may need to be examined relative to known medical conditions without the need to consider unique pathophysiology.

Whatever the case if patients hope to provide useful input into research then we have to seek to maintain precision in our meaning otherwise we are offering up an undifferentiated mess.

 

Good luck with that. PEM doesn't necessarily adhere to schedule. It even sometimes presents chronologically different depending on whether the exertion is physical vs mental.

Precision in general for pwME would be great relative to PEM, but many of us suffer variations in how long after exertion it ensues (for both physical and mental), as well as duration - or whether it will necessarily always occur after some form of exertion.

We have lots of rules of thumb, but precision is tough. The math is certainly beyond me and my case, and I'm just n=1.

 

They get many tests to monitor progress so you would expect a large drop after doing a lot the day before to happen occasionally. If it has ever happened it has not been documented.

I did not mean to imply they had 2 day tests. Just that these tests have been done in all hospitals for many patients over years yet doctors still accept that one test gives an accurate account of how a disease is going. Circumstances meant that I had a 48 hour holter monitor when I was completely exhausted which screwed up the results. \we are so careful it must have happened to someone with another disease before a routine CPET test.

When the first test results came out no one would believe they were not an artefact so strong was the belief that such a drop could not happen.

 

Technically it is delay if you can complete more than you should have. I think it is easy to forget that normal people get signals from their body well before they are into a 'zone' that would lay them up for days+. Someone can't make themselves run a marathon fast enough to do enough damage, or sit concentrating on a piece of work long enough without their eyes closing to not be able to speak, read or think properly for days.

The particularly unusual thing about PEM - and that which has allowed us to be troped and called malingerers by so many who play little games - is that 'but why did you do it if it was going to hurt you' or 'you seemed to manage it OK at the time'... followed by some stupid-length payback.

Lots of other illnesses get fatigued first ie can't do in the same way or it affects performance in the first place - which is why the 'fatigue' definition was so misleading/counter-correct. Maybe that fatigue in other illnesses doesn't affect a CPET always (hence day 1-2), maybe it is an issue that does.

This flags to me how poor and problematic the whole area that calls itself fatigue research is - because it is scary it hasn't even differentiated these things (which indicates they don't intend to or see finding out what they are dealing with as a priority).

It's why analogy-wise when I describe 'tiredness' to someone who keeps using that one I say a good day for me is how they would feel if they spent 5 days in-transit on a flight with nowhere to lie down or stretch out etc. going across time zones getting up when planes land or gates are called for exertion of hauling luggage. About the only thing that comes near as it has been imposed.

By the time you get more severe your body is so fragile you are on a dental floss baseline for anything over-exerting what is a pretty wrecked body that hasn't been able to recover from substantial prior PEM. It tends not to be 'going for a walk' but 'noise' or 'moving' like you are already in a crash on top of a crash.

I don't know how you equate that with other illnesses - but actually I think that would be very insightful

 

Firstly, you don't die of fatigue just other things, or you recover with rest, ergo not a priority. We are therefore an anomaly while at the same time its not important. A curious scientist should want to know why we were an anomaly.

Secondly, imagine going to a doctor and you describing foot pain, and the doctor wants to do a head x-ray in case you have a skull fracture or something, or takes your blood pressure but ignores your foot. That is where we are with fatigue, with the general attitude it is all the same. They generally look for other supporting features, but we are trapped by the prevailing terminology. I think we literally do not have the words to describe what is going on succinctly, and my experience is that if you try to explain with lots of supporting detail most doctors will zone out. They are trained to look for key findings and we don't have any that we can describe, not even fatigue given how it has so many meanings.

 

The problem with CPETs, especially for obstructive lung diseases is that most medical practitioners and exercise physiologists are obsessed with the VO2Peak/VO2Max numbers, which aren't relevant to the measurement of PEM. Few bother to even report or consider that workrate at the first ventilatory threshold is relevant in terms of fatigue.

 

Anti psychiatry or as I call it no evidence no illness brigade hijacked M.E
They are pro psychological explanations.

An example of Anti psychiatry thinking
https://livingwithschizophreniauk.org/information-sheets/the-anti-psychiatry-movement/

 

Could that basically mean a test that is less damaging, and certainly more safe esp for those who are mild, is actually possible from this?

I say mild because imagine how powerful it would be for those who (and many have been there) do the pushing through etc. I know workwell use the example in one of their videos of the marathon lady who was convinced she could train herself better and came back for a CPET a number of months later to test if it had worked. This sort of thing could provide more of a usefully ethical basis for checking on people's actual health at that level in order to ask for adjustments etc. and also to start having NHS records with the right measures on them?

 

What in the name of all that's holy...

 

One other dimension is that back then little was known about longitudinal disease evolution.
My symptoms and how they behave are vastly different 25 years on than they were after my (probable) initial infection of Glandular fever / ebv. And they altered again dramatically after my recent progression after hospitalisation for a different virus (suspected viral meningitis) and after I then GETTed myself into oblivion.
Luis Nacul's study is the only one I ve read that's explored this chronological / longtitudinal dimension but it was eerily accurate and read a bit like my disease life story.
My PEM was less evident and attributable at the start and worsened as my disease progressed. Its good that science started to hone in on diagnostic differentiator.
But as said we're in dire need of a biomarker. I've seen so many studies now saying x or y would be a perfect biomarker and further research is needed, but then that further research never happens.
Alongside the Decode project I wish there was a serious scale dedicated project that would take on solely that as a mission and work through the all candidates identified to date, prioritise them and combinations of them by probability cost and ease of scalability and start doing testing. Just Imagine showing that to my sceptic GPs, it would feel so vindicating. In my dreams hey....

 

Just found a great discussion involving Charles Shepherd and Ellen Goudsmit that's relevant here, I think it demonstrates my point about ME historically being thought of as muscle fatiguability and not PEM or damage from exercise:

https://meassociation.org.uk/2011/02/london-criteria-for-m-e/