Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

I don't want to derail this thread but I'm interested in what to look for with OI if not autonomic dysfunction - can someone direct me to the thread where this was discussed, please?

 

To me the interesting thing is why ME occasionally occurs in infectious clusters at all. Infections obviously play a part in triggering it, but there may be some other highly localized co-factor that accounts for it occurring in "epidemics." The "co-factor" might not be the same in every case.

Nancy Klimas believes that Gulf War Syndrome is triggered by a combination of "stress" (which could be in the form of an infection) and an exposure to a neurotoxin.

The ME clusters seemed to occur in institutional/confined settings - areas like hospitals, military bases and small Icelandic towns or Nevada resorts which would have their own narrow food and water supplies and environmental exposures - as well as an enhanced likelihood of interaction among the small population.

One of the things that strikes me about the 1934 Los Angeles outbreak is that the giant building was brand new. The ME-like cases started to occur within 2 weeks of its opening. The nursing staff, who were the principal victims, lived on site in newly constructed bungalows.

To me that suggests the possibility of exposure to toxic chemicals used in the construction of the facility and its bungalows - principally fumes from recently applied paint - which, in the early 1930's, would likely have been lead paint. Lead is a potent neurotoxin.

I was once exposed to fairly concentrated fumes from metal paint primer (presumably non-lead) over the course of several days. This was not usually part of my job. At the time, I was still not fully recovered from what had been a really severe upper respiratory infection. The paint had the usual warnings about limiting exposure, but I was young and stupid. I got ME ten days later.

 

Backtracking for a moment on @Trish 's comments about muscle "fatigue", when I first went down with ME I had no diagnosis, no supportive GP, and struggled on with my job, teaching. At lunchtime all staff were expected to return to the staffroom (a couple of hundred yards away) to pick up any new instructions, information etc. I really struggled to walk that distance, but, the interesting part is that if I was accompanied by a colleague, I couldn't hold a conversation while I struggled to walk. I really couldn't. It was as though walking took every part of my energy store.

Once I had reached the staffroom, and stopped walking, I could continue the conversation.

When I read all the explanations of cellular function etc., that doesn't make sense to me.

 

I agree that sensitivity to sound and light are features of ME that you would not find in a random control group. But a neurologist would not usually call these 'sensory symptoms'. That is just a matter of convention but I think 'sensory symptoms' is confusing because it tends to imply other things.

What other sensory issues were you thinking of?

I think one can be fairly sure that a random control group would not have a comparable level of 'cognitive issues' in the sense of what people call brain fog and the like.

 

This is what puzzles me. It is what makes me think of the situation in narcolepsy, and in particular the associated symptom of cataplexy. Cataplexy tends to be brought on by laughing and consists of complete inability to move. There is no suggestion by anybody that it is 'psychological' because the sufferer, when not laughing, otherwise moves around completely normally. One of my co-students at medical school had it. If he thought someone was telling a joke he always put his drink down, otherwise he would be likely to spill it. But only his close friends knew he had the problem. Otherwise he was as fit as a flea.

Maybe ME is a sort of chronic cataplexy due to a problem somewhere a bit along from the hypocretin cells in the hypothalamus. I doubt it is that simple but it might be a helpful analogy.

 

Sorry for butting in but do you think you could carry on a conversation while learning to drive (or any other skill that becomes second nature).

When I have one of my regular 'mini strokes' I have the distinct impression of having forgotten how to walk in the sense that every movement seems to require deliberate mental effort rather than happening instinctively - which sounds rather different from a lack of energy (at least in a muscular sense).

 

Could this be due to orthostatic intollerance which manifests as poor blood flow to the brain? Did you sit down in the staff room? Presumably yes because you were struggling just being on your feet.

I find that I can struggle to find words and form sentences after spending some time walking or on my feet. At that point I can't have a meaningful conversation.

 

I had that realy bad and it still happens during flares. It is not so extreme as it was anymore.

 

My head feels full of cotton wool today so hoping I can add useful thoughts

This is my initial reaction too. It seems a bit like ‘sometimes it’s this but it can also be that’ when this and that cover almost all possibilities.

We seem to have circular definition problems because there have been poor definitions. So we don’t have a bio marker for the bad definitions (perhaps in part because it isn’t describing just one disease, but also lack of funding). So then we try to write a better definition (without a biomarker) which includes the different experiences, but doing that ends up of something that doesn’t have much practical value.

I wonder if we need to separate out an advocacy definition from specific clinical/research subgroups? There is value in having a unified, umbrella identity from a campaigning point of view but is it more useful to study specific subgroups? For example, perhaps pre and post 3 year duration, and there’s indication that it’s useful to separate out men and women.

Temperature control is from the hypothalamus (keeping a homeostasis view over things) but inappropriate perceptions/response to temperature can be an autonomic issue. I attribute this to POTS in my case. I wonder whether (helpful, somewhat treatable) dysautonomia diagnoses could be missed with this definition of ME. Or are they categorising ME as a type of dysautonomia?

Not with POTS - the tachycardia is to compensate for the gravity effect of the blood falling downward without the appropriate autonomic response of constricting blood vessels to push it back up. In this sense the tachycardia should prevent fainting (though it isn’t always sufficient). Or do you mean something different?

I have read differently but it’s unusual for EMG etc to be done so the evidence isn’t strong either way. If I can find the examples I’ll post.

Personally my EMG was abnormal (short spiky motor units) but not specific to other diagnoses. The nerve conduction bit was fine. Doctors disagreed about what it meant. The electrophysiologist thought it was like myositis, my neurologist some type of myopathy, the neuromuscular specialist was happy to dismiss it. But of course there’s a possibility this is indicating ME is a misdiagnosis for me. I do fit a classic ME definition but as we know the definitions aren’t great (I could have mito and related Atypical Periodic Paralysis instead).

If we forget for a minute about getting everyone to fit, I think there’s a cluster of symptoms which seem distinct in combination. My mother in law watched Unrest the other day and that was one of her main impressions. Eg What we’d call sensory symptoms such as light intolerance, reacting badly to sound and touch in a way which is like shutting down. It is somewhat like autism but our response is very different.

At the Chronic Illness Inclusion Project we’ve been playing with the concept that fatigue isn’t a synonym of energy impairment/exertion intolerance. What people with spoonie style conditions are experiencing is energy impairment but the repercussion of stepping outside the energy envelope isn’t necessarily fatigue (it could be any number of symptoms depending on specific bio issues). What do you think?

 

I feel like I know something about this but I cannot bring it to the front of my mind right now.

I think there are both biomedical and BPS theories about this.

It would help me personally if we could pin down what types of muscle/walking issues are part of ME and which need further explanation (ie doctors need to pursue further). I’m severely impaired with this eg can walk a few metres and then not at all (either rigid, or legs give way). Concentrating hard doesn’t do anything, for me it definitely isn’t the issue @Marco describes and there seems to be some evidence the problem is located in my muscles. Are both of us experiencing ME muscle issues?!

 

I think I agree.

Having experience of "fatigue" as a symptom of both Hashimoto 's and anaemia, they feel rather different to ME.

Of all the symptoms of PEM and pushing beyond the boundaries, "fatigue" would be quite far down the list.

 

For me, no. I do still occasionally drive, under supervision if I haven't driven for a while, but I avoid conversations and can't play music or the radio.

It's not the control of the vehicle that's the issue - I used to drive a lot as part of my job and was used to hopping in and out of different makes and models of vehicles - it's the observation: is that child going to run out, dog on a too long lead on a pavement, anticipating/predicting the actions of other drivers.

Edited - in silence I can focus, but with chat, background music or the radio I can no longer filter those distractions out like I used to.

 

I don't know if this is the same thing - when I've really pushed my luck I occasionally experience a tiny delay...my leg moves, but it's almost as there there's a slight hesitation and I notice it, rather than I need to focus in it to get it to move.

Like @Jenny TipsforME says, if my legs are going to suddenly give way or the muscles are stiff and tight then no amount of concentrating makes any difference.

 

I still drive for up to an hour in an automatic, perhaps 3/4 hr in a manual, but cannot converse unless the road in front is straightforward. Nor can I listen to music any more. But that's different because it is making different claims to my brain, and both cells are pretty tied up with the driving.

The walking was different because it didn't take that sort of thinking, but it did take some sort of mental effort to keep going.

No, you'd be lucky to get a seat then, and anyway, I had to pick up my mail, read the noticeboard, pick up my register, and return. But I could talk doing that. I wasn't at my limit, but walking back again, I was, so conversation stopped.

Just to clarify though, that was when I was struggling to carry on working. These days I can walk (amble!) for 45 minutes or so, and hold a conversation. I'm not pushing past my limits as I was then, so the extreme symptom doesn't crop up.

I know I'm one of the lucky ones.

 

@Marco @Invisible Woman re driving question I feel like there’s an issue with what cognitive psychologists would call attenuation. It would make sense that this requires some energy. I can’t remember if this has been studied in ME https://en.m.wikipedia.org/wiki/Attenuation_theory

It’s slightly off topic but after reading about MT-ATP6/ATP8 mutation cause of Atypical Periodic Paralysis I have a current Pet theory that changeable muscle weakness issues in ME could be to do with problems with the ability of mitochondria via ATP to overcome the inflow of sodium and potassium into cells. From my understanding, the sodium potassium pump is a large consumer of ATP, so this might be why being low in ATP shows up this way (and possibly it doesn’t actually require a genetic cause for the low ATP?? Just some type of mitochondrial dysfunction) . This then looks like Periodic Paralysis or temporary weakness which in the typical Primary form is related to potassium imbalance from ion channel mutations. If this is correct, treatment for Periodic Paralysis (acetazolamide) or diuretics could help. NB This is very speculative.

 

I may have give the impression that it was a case of one or the other or that all it took was to concentrate and everything was OK - that isn't the case. By that stage my legs are stiff heavy and aching and despite my best efforts (of concentration) I'll eventually be unable to walk at all and have hopefully made it to bed by then.

The interesting thing is that these attacks can follow exertion but also be caused by heat or even a 20 minute personal phone call. In neither of the latter cases cab actual muscle fatigue be to blame.

 

Yep - I've long thought that some sort of impaired sensory filtering may be a major factor and attenuation rather than complete filtering of 'irrelevant' stimuli makes sense.

ETA - This just reminded me of another interesting phenomenon I've just noticed recently. In the hot weather we keep a fan running all night which has the added benefit that the constant white noise can be relaxing as it tends to mask noises such as shutters rattling.

On the downside our cat has been enjoying the cooler nights to go out hunting mice and two or three times per night she'll come through the cat flap and up the stairs to deposit the unfortunate corpse or near corpse on our bed (accompanied by muffled meows; chirps etc - obviously pleased as Punch with herself).

Sometimes she can't get the mouse and hereself through the cat flap and howls because she's trapped in the porch.

Either way her meows are a warning sign to me that I may have to get up and rescue/dispose of a mouse or help the cat out of the porch.

The thing is that with the fan running it's difficult to make out what is exactly happening when I hear a meow (she could be just coming in without a body) - not enough signal to noise if you like - and I have to strain to hear before deciding what to do (rolling over and going back to sleep would have been preferable).

But in straining to hear, I then start hearing continuous meows - too many to be physically possible - so in trying to sort out the signal from the noise my brain errs in perceiving too many 'danger' signals.

I doubt this has anything specific to do with ME/CFS as my wife experiences the same thing although in her case its the rattling shutters that are exaggerated. On the other hand she might also have an attenuation issue as she suffers from severe chronic back pain?

Anyway - apologies for the major diversion.

 

@Graham do you ever get any vertigo type symptoms? There’s something called Supermarket Syndrome which is named because it’s particularly triggered by standing walking, thinking and looking just like you do in a supermarket.

http://strangesyndromes.blogspot.com/2014/07/supermarket-syndrome.html

 

@Jenny TipsforME : I'm not sure how to answer that. I prefer to shop in quiet, uncluttered supermarkets – a busy, noisy one tires me out more quickly. But I don't get vertigo symptoms (unless Kathy starts chatting to someone, and I'm just standing there for several minutes). I'm not really a good person to ask about symptoms: I don't really suffer from the light/sound sensitivities, my digestion is "robust", and I can amble around. Pretty much everything seems to be explained by a battery with limited output: the more current needed by one activity, the less available elsewhere. The one weird bit that I do have is very cold, aching legs. Even through the summer I go to bed with thermals, pyjamas, hot water bottle, socks and an all-night electric blanket (although my top half is fine). Using the battery analogy, I suspect there's a corroded connection somewhere between my hips and knees.

Did someone say "weird"? I suspect we need to introduce the term into any attempt to define the criteria for ME.