Does Very Severe ME/CFS involve a extra process: ME/CFS + X?

It's really difficult to understand failures of complex interacting subsystems. I suppose there's some math to calculate the possible failure modes based on the number of potential factors and the number of potential interactions. I expect it's a rather large exponential rise. Possibly high enough to put it in the "basically impossible" category. Do you put that amount of resources in trying to solve the problem faced only by a small minority, or do you put those resources into treating the root cause of ME, which solves the problem for the majority and the minority?
 
That's a pretty convincing page of posts on a continuum, plus repeated reminders how fluctuant these phenomena are.

The only interpretation I can make at present is that it is all the same process, just varying in degree. If so, it makes me think of the cataplexy that goes with narcolepsy again - where the paralysis is very evident and very temporary.

It also reinforces my growing conviction that the basis of disability in ME/CFS is not about:
Muscle ATP
Any other intrinsic muscle processes or states
Poor blood flow, low blood volume, blood clots or any haemodynamic issues
Autonomic discharge - as an underlying cause - even if the autonomic system gets to kick off secondarily with tachydcardia etc. and maybe GI dysfunctions
Inflammation or 'endothelial dysfunction'
Generalised metabolic imbalances

It really has to be in brain structures like basal ganglia, hypothalamus or even cerebellum.
That does not exclude there being a persistently abnormal immune response upstream.
 
Trish said:
My question then would be why, biologically, for some pwME the continuum takes them to such extreme incapacity, and for others it never goes that far.
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To me it seems like the key difference is not immobility but the fact that some people always bounce back no matter what they do. They might crash so bad they’ll spend a month bedridden but they’ll regain their baseline eventually, while others (a majority even? based on DecodeME demographic data) have a more progressive course. I have no idea if the majority also has the potential to become very severe. My feeling is that yes, but you have to be very unlucky
 
I generally would agree with the above comments. I have never experienced paralysis but more like body was made of concrete and I physically could not lift any part of it.

I was diagnosed in my 40s and am now 68. I've been a severe pwME for the last 15. I've only experienced two periods where I could say the I was on the cusp of severe and very severe which included eating difficulties and general symptoms of gastroparesis, light and sound sensitivities; when I first became severe and again during the last twelve months. I'm slowly moving from soup to soft foods at the moment. I'm not malnourished, my BMI is 37.

But I've noticed during this second deterioration after 15 years of being severe) that the symptom of problems with thermoregulation has dramatically changed coinciding with being unable to keep solid food down.

That is hyperhidrosis (excessive sweating). This lasts all day and night and drips off me from head to toe. Akin to being permanently in a sauna but without the heat. It's beginning to ease of now which also coincides with me now subsequently being able to move slowly onto soft foods.

I've excluded it being linked to side effects of medication I'm on, I'm not diabetic, no heart problems and don't have POTs.

I've never seen anyone mention this extreme sweating before and I wonder if other people have experienced it and put it down to the known thermoregulation issue.

I've re-read this series of case studies

Life-Threatening Malnutrition in Very Severe ME/CFS

Life-Threatening Malnutrition in Very Severe ME/CFS - PMC

Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov

which Jonathan referenced in his paper.

and there's no reference to this being a significant symptom at the time.

Then I came across this

Acute Hyperhidrosis: A Clue to Underlying Autonomic Dysfunction and a Rare Neurological Disorder

Acute Hyperhidrosis: A Clue to Underlying Autonomic Dysfunction and a Rare Neurological Disorder - PMC

Acute hyperhidrosis is characterized by excessive sweating. In the absence of other symptoms, the symptoms of sweating alone are often benign and may be ignored by patients and clinicians. Rarely, hyperhidrosis may be a harbinger of an underlying ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov

Abstract
Acute hyperhidrosis is characterized by excessive sweating. In the absence of other symptoms, the symptoms of sweating alone are often benign and may be ignored by patients and clinicians. Rarely, hyperhidrosis may be a harbinger of an underlying severe disease. Autonomic nervous system dysfunction leading to hyperactivity of the sympathetic nervous system can result in excessive sweating. This case report is about a gentleman who presented with acute hyperhidrosis, a symptom of autonomic dysfunction, which turned out to be a relapse of anti-leucine-rich glioma-inactivated 1 (LGI1) antibody encephalitis. This case adds to the existing literature on cases of anti-LGI-1 encephalitis, a rare form of autoimmune encephalitis, and its varied clinical manifestations. It serves as a reminder to consider a wide range of differentials in patients who present with a seemingly nonspecific complaint such as excessive sweating.
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It's also a symptom in Parkinson MS and Guillain-Barre syndrome

Don't know if any of this is relevant but thought I'd mention it as it doesn't seem to be discussed much.

Edit: On the NHS page on hyperhidrosis is a link to this https://www.hyperhidrosisuk.org/secondary-hyperhidrosis

There are NICE Guidelines on it, but without also paying attention to the NICE Guidelines on ME/CFS they're pointless.
 
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lelelemonade said:
To me it seems like the key difference is not immobility but the fact that some people always bounce back no matter what they do. They might crash so bad they’ll spend a month bedridden but they’ll regain their baseline eventually, while others (a majority even? based on DecodeME demographic data) have a more progressive course. I have no idea if the majority also has the potential to become very severe. My feeling is that yes, but you have to be very unlucky
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Yes, I find that interesting, too. I'll post my musings from another thread below.

Felis Catus said:
I've been wondering why some people don't recover or don't fully recover after an episode of PEM/crash and others do.

It seems that some people keep overdoing it, keep crashing, e.g. even for years while trying to work while others deteriorate quite quickly in comparison.

Sometimes I wondered how often others experienced PEM but having been in some patient groups for years and having built relationships with other patients, I see that some people are crashing really often (in comparison to me) but they bounce back.

At some point I started thinking that the ability to bounce back is what distinguishes those who remain stable or improve from those who get worse. But what would be the underlying mechanism? Why would someone bounce back and someone else with a similar level of functionality/severity or even higher functionality wouldn't? Is there a process which basically determines one's trajectory and the patient's circumstances can only accelerate it but not change its course?

I know no one knows. Just thinking out loud.

I don't think it's about crashing soft, i.e. that if someone does just a little bit more above their threshold, just the right amount of not too much, that it leads to recovering from subsequent PEM as opposed to doing more than that. There are people who e.g. need help with food prep and putting the dishes in the dishwasher (because those activities trigger PEM) but they can go out weekly or multiple times a week for a few hours, crash each time, recover to pre-crash levels and maintain the same level of health for years. Please don't get fixated on this particular example. It's just an attempt to illustrate that some people fully recover from an activity which seems far more taxing than what they can manage without triggering PEM. And the point it that some people can keep doing it without deteriorating while others with the same or similar severity or even in better health deteriorate from seemingly smaller endeavours.
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To those who describe experiences of paralysis, immobility, extreme muscle weakness: did it feel similar to what you might experience as part of a sickness response to a very bad flu? Maybe a worse or much worse version, but still the same type of feeling?

Or should I interpret paralysis as in cases of quadriplegia?
 
I keep reading accounts from people who seem to recover from crashes almost every time, whatever happens. I sometimes wonder whether this is more typical of people with mild or moderate ME/CFS, who are often said to represent roughly 75% of patients.

But for the severe and very severe group — the remaining 25%, which includes me — it can feel as though there is eventually one crash too many, or one exertion too many.

In my own case, I would almost describe it as one chemical stressor too many. I had episodes of excessive alcohol use before I realised I had ME/CFS, then poor reactions to medications such as antidepressants, and a failed stellate ganglion block. Each of these seemed to be followed by a deterioration. My most extreme crash — when I was almost completely paralysed, confined to a dark room and only able to take liquid food — happened after trying a tiny dose of Prozac.

Subjectively, it felt as though my brain had simply imploded.

More recently, I tried TUDCA and I am now in a major crash again. At this point, I am just hoping that over the next few days I will at least regain enough function to get up and go to the bathroom.

Of course, I cannot know whether these substances actually caused the deterioration, or whether they simply coincided with a system that was already extremely fragile. But from the perspective of someone with severe ME/CFS, the idea that every crash is fully reversible does not match my experience at all.
 
wallfish said:
To those who describe experiences of paralysis, immobility, extreme muscle weakness: did it feel similar to what you might experience as part of a sickness response to a very bad flu? Maybe a worse or much worse version, but still the same type of feeling?

Or should I interpret paralysis as in cases of quadriplegia?
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My worst crash, after taking antidepressants — anything that affects neurotransmitters seems to trigger an enormous crash for me — felt more like an absolutely terrible flu that lasted for a month.

Every muscle in my body was painful, and I could do virtually nothing except be fed by my wife with a spoon and use a bedside commode.
 
+1 for the experience probably being a continuum. Even at moderate there are often times when I'm so exhausted/ill feeling that eating consists of a few bites between laying down for rest breaks. I can see how a (presumably much worse) version of that, coupled with sensory intolerances and other awful sensations would make eating so difficult a person just could not keep up with their caloric needs.

Even if the experience/phenotype is a continuum, there could still be extra genes laying the groundwork for some people to get more severe than others. At least that's how I was reading it works for the genetics of neurological disorders. One person with a set of common risk variants might be on the mild end of the spectrum, while another person with a mix of common and very rare risk variants has a more severe version of what seems to be the same issue.
 
lelelemonade said:
What does the paralysis feel like for you? I’ve experienced something like paralysis only once, in a crash. Normally I’m somewhat mobile but bedridden. I woke up being unable to move my legs except for toes. Attempts to move them only caused myoclonus. They hurt a lot more than usual. There was also something wrong with my proprioception. I couldn’t tell which position my legs were in, though they weren’t numb. The “paralysis” went away along with the pain when a caregiver bent each leg at the knee and moved it around (though I also took Mestinon a few minutes earlier). He said they were unusually hot to the touch but idk if I trust that assessment. I was covered with a blanket and it was summer. I thought it could’ve been a blood clot or something though in that case it would be weird that it affected both my legs. Or maybe it was like when your leg falls asleep but 10x worse and without anything obviously constricting the blood flow. That was years ago and it never happened again.

Normally the thing that can make me immobile for hours is that any movement exacerbates symptoms and moving too much can cause additional PEM. Also, in severe crashes, I feel as though I have muscle weakness in the sense that objects whose weight I know really well suddenly feel much heavier
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I experience episodes where i can't move much if at all sometimes. They're usually brief but now at severe can last an hour or two of going in and out of it. Seems to correlate with PEM from cognitive stuff.

As opposed to getting PEM type symptoms when I try to move and not being able to move much because of that.
 
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Maat said:
I've never seen anyone mention this extreme sweating before and I wonder if other people have experienced it and put it down to the known thermoregulation issue.
Click to expand...

When at my most severe, I got very marked night sweats.

This lasted a number of years, perhaps eight. It was episodic, occurring when I was asleep, either at night or in the day, usually around once a day, so different to your experience @Maat. However it was marked, I would need to change whatever I was wearing, clothes literally dripping, and shift to a different bed.

It was not obviously temperature related, though I could wake up feeling cold from the sweat evaporating, until I got dry.
 
Having relapsing and remitting ME I have been through most levels of severity at some point in the last thirty years, so I ought to be the poster boy for the continuum interpretation, and for most of the course of my ME this subjectively makes sense.

However at my most severe some aspects felt like a step change. I had a period of nearly ten years where I was on the cusp of severe and very severe. I would only get out of bed to go to the toilet or to eat cold food direct from tins; perhaps showering once every four to six weeks. Most of my symptoms though more severe had parallels with milder symptoms at different levels of severity. I did not have any gut motility issues, however two aspects felt qualitatively distinct during this period.

The first was my orthostatic intolerance: throughout my ME, I think being upright contributed to triggering PEM but of itself did not feel problematic, however during this period standing up for more than a couple of minutes saw me get dizzy and any longer could lead to fainting and added to my ongoing PEM. Now coming out of this phase standing or sitting upright of itself does not feel problematic other than contributing to any subsequent worsening of PEM.

Second was getting into a warm bath, which immediately made me feel very ill, and it would take weeks to recover from just a few minutes in the bath. Bathing to get clean was impossible, whereas showering was possible every four to six weeks, if I managed to get the water temperature right, albeit exhausting and PEM triggering. Now as I have improved to between moderate and severe I can luxuriate in a hot bath for as long as I want, a great indulgence.
 
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