Needing to lie flat

Prompted by the thread on mechanisms of Long Covid by Peluso I wanted to ask for views on a distinction between ME/CFS and post-viral fatigue.

Interestingly, Peluso separates Long Covid out, as Hutan shows in their picture, as new unexplained symptoms and shows someone with lightning flashes indicating symptoms sitting hugging their knees. This might seem better than the stock picture of someone lolling on a sofa but maybe lying flat is actually an important aspect of true ME/CFS.

I have had post-viral fatigue after EBV and after Covid. It was distressing in the first case in my teens. Post-Covid fatigue was exhausting and frustrating but in neither case do I think I had ME/CFS. Both resolved in a few months.

An idea came to me, which people may or ay not agree with, that true ME/CFS is a more persistent condition in which at least at worst times feeling unwell makes people want to lie flat. This is not because they are tired or sleepy but because they feel bad. The same happens for flu, vertigo, migraine (I assume), really bad toothache, and so on. During our post Covid illness my wife went to rest on the bed maybe twice in three months for a couple of hours. I may have done once but probably not. When I felt exhausted I was happy to sit in a chair.

When other conditions are associated with fatigue I also suspect that sitting in a chair is what people prefer. Moreover, it tends to be a fairly upright, but padded, chair that is easy to get out of and keeps one's back straight. That is how I remember people with cardiac failure, renal failure, rheumatoid, multiple sclerosis, Parkinson's coping.

Of course orthostatic intolerance may be central to this but I think there may be something more general relating to environmental intolerances for the person with ME/CFS.

The relevance is that it may be a mistake to confuse the process of post-viral fatigue with ME/CFS. It may be that it is post-viral fatigue, rather than the virus itself, that can trigger the separate process that gives rise to ME/CFS. Or ME/CFS may be a separate regulatory disturbance that perpetuates post-viral fatigue as well as creating other problems.

 

For me it's as simple as this. When I was moderate but still unable to work/study early in my illness I was mostly sitting. When I'm severe lying down is essential. If I'm sitting these days I find I automatically raise my legs up onto something if there's a way to do that. I've had relapses and remissions when I was mild too but was still able to sit at that time. Throughout all of these severity levels at no point have I not been experiencing ME symptoms on some level.

Another aspect about lying in bed is that it's much easier to regulate temperature with a duvet.

 

Thanks, Trish.
I think the first episode you describe was the EBV infection itself, which can last for many weeks and certainly produces a need to lie flat and quiet, with sensitivity to light and sound. It is the paradigm situation of environmental intolerances. Post-viral fatigue after EBV is different. There is exhaustion but the previous features have gone. (I was fortunate in that my EBV was so bad that I could not drink at 6 weeks but I was given a short course of tapering prednisolone which somehow aborted the acute process.)

And I guess it is possible that if you have a genetic risk of ME/CFS that it nearly triggered with EBV but not quite.

With post-Covid problems I am encountering or hearing of three situations: 1) The situation of Michael Rosen who nearly died of acute Covid and spent months gradually getting back to life - probably in Peluso's post ITU category. 2) Months of exhaustion like mine, without sensitivities or a need to lie flat. 3) Typical ME/CFS either persistently severe with inability to talk as in the ThereForME spouse stories or with OI and crashes carrying on to a year or mote.

I am suggesting that this is not just a severity thing. Feeling exhausted or fatigued and being unable to tolerate posture or environment are likely to have very different underlying processes. They may come together in ME/CFS for some good reason but it would be a mistake to study people with one and expect to find an explanation for the other.

 

But were there times when things were bad enough to lie flat?
I appreciate that most people with ME/CFS manage sitting and some walking a lot of the time. But at times they need to lie flat. People with 'fatigue' associated with other conditions as a rule simply do not need to do this. It isn't relevant. When people come off ITU after a life threatening illness they may be unable to feed themselves but they are quite happy sitting up.

 

I was going to comment on the other thread but probably better here. My experience is with 3 viral illnesses (teenager, early 20s and Covid) has made me think of this. Also how similar virus 1 and Covid felt compared to the viral illness that started ME.

The difference would be :

The big difference that I can see is that with the 'ME virus' I kept getting the same symptoms over and over again as a response to effort, or exertion or just the desire to do more as I felt 'better'. If I was asked if I was fatigued I would say no. I was sleeping alot though.

I went from high temperature, delirious, sweating, infected tonsils, sore glands etc to feeling like I was recovering and wanting to move around / take a bath / change the sheets to wham! Right back to the start again.

There was no desire to sit in a chair or a feeling of fatigue. There was a desire for movement followed by the viral symptoms coming back. The longer the period of exertion the more muscle pain as a distinct seperate symptom. Muscle pain far out of previous experience as a sedentary person.

As time went on the interim ( I am recovering and wanting to do things) time got longer. I didn't feel fatigued or want to sit in a chair. It felt like nearly returning to normal but there was a glass ceiling which I kept hitting and going back to square one again. Still excessive sleep though.

I had been a sedentary person previously but could go from this to exertion like running, aerobics class, horse riding, dancing with ease. My stamina however had been noticeable poor as a teenager when I developed fainting and low BP. I could work around this though.

 

I think sit / lie flat is an interesting dichotomy but legs up is a very important intermediate.

I once had an office job where I wore a suit and I'd sit on my swivel chair cross-legged because it was the only way I could get through the day. (spoiler, by the end I could not get through the day)

Watching the film unrest, which is the only visual contact I've had with a large group of mecfs sufferers, almost all of them were sitting with their legs up.

My guess is orthostatic intolerance is very widespread, perhaps presenting unusually in some of us.

 

EBV is a confusing infection because the virus produces a pseudo-malignant gross expansion of B lymphocyte clones that can persist for weeks before cytotoxic T cells finally get the upper hand and clear them away. You go on being ill until then. Using steroids is probably controversial but steroids kill B cells very effectively so it makes sense.

 

This is the sort of thing I was getting an impression of.

 

It depends where I am and has daily patterns as well as is triggered by doing too much mental or physical activity. I get urges to lie on the sofa, sit or lie on the hard floor, or to collapse forward if on a chair at a desk.

Caveat: I also have asthma which is now well controlled, the incidences where I describe air hunger might be best ignored, but I am including them anyway because lots of PwME describe air hunger. Only OI dx is OH, nothing else tested, not quite sure I fit POTS.

Sometimes it’s overwhelming urges to lie forward, I frequently have ‘air hunger’ when this happens – I feel I am breathing in and out normally but it’s not enough, I can’t focus, I am not sleepy, resting doesn’t resolve it but it makes it more bearable. This happens when I am sitting at my computer of a morning (having got up and got ready, done the stairs at least once).

When I get urges to lie flat on the sofa, I am usually standing up, and not trying to work. Any time of day, air hunger if it’s bad, it’s more likely to be ‘bad’ first thing or early evening (after sitting upright all day). Sometimes I am lying flat and I feel like I cant lie flat enough (I know that doesn’t make sense) so I turn to the side (unless I’m in a phase of getting the heart rate spikes from positional changes), then turn onto my front, and try to…make my way to the earths core?? Often it’s not enough.

Other sensitivities are more likely to be present but not necessarily. If I’m getting air hunger then I think, if memory serves me correctly, that it makes other senses less prominent.

Sometimes I am urged to get off the sofa and sit or lie on the hard floor. NO cushions! I think something sensory to do with internal sense of balance or of my position as relates to other things must be going on here.

These urges don’t go away until I have given in to them, and it can take a variable amount of time for me to feel okay enough to get up again without it rushing back.

Unless I’m already in a long, weeks+ period of PEM, then I don’t get them when I am already in what we describe as adrenaline mode. I know ‘it’ might not be about adrenaline but don’t know how else to describe that mode!

 

I don't know, lets get that out of the way, but my intuitive feeling about this is that PVFS cf ME/CFS are not easily distinguishable because they overlap a lot because they both involve longer term immunological responses involving forms of inflammation and autonomic response changes.

The main distinction to my mind is duration and severity of symptoms.

Where PVFS tends to alleviate eventually ME just keeps going so the less obvious symptoms have time to become more pronounced.

I have had both, like you both I had EBV in youth and a year of recovery back to normal levels of activity which was different to ME four years later 1986.

There must be an underlying difference causing the chronic nature of ME and that may make certain symptoms more severe but I dont think there are any specific to ME. I see that as being because the symptoms are due to our immune response.

wrt OI, mine is much worse after covid (+variants) than it was before. I have real trouble standing up now. But my OI was much worse in the early years of ME and gradually became less pronounced, or I learned to live with it. Even so I have had a hammock strung across my living room for 24 years because I just feel so much better resting in that, which I guess is partly because it reduces the angle between heart and head, not quite lying flat but halfway up the stairs kind of thing. Also it puts your feet up automatically !

 

True ME/CFS? I find that rather offensive. So 25% and higher are not true ME/CFS?

 

Where my head is seems to matter - I can be not ok sitting up on the sofa without my head well supported, but then be on if I put pillows in the right place to support my head. When visiting relatives who individual chair sofas with proper head support I dont get the urge to lie down so often. Maybe that's just all the cups of tea.

 

I think the distinction was meant to be post viral fatigue and other fatigue conditions vs MECFS (MECFS potentially being post-viral)?

 

I've always understood this to be orthostatic intolerance (sorry if you've already addressed this, the threat has already got away from me!).

I have to have my feet up almost all day and sometimes when I've been upright for too long, I just need to lie flat, and once I'm flat, I feel I need to lie flatter than flat. I've tried to describe the sensation that drives that compulsion to various doctors, and I can't - we don't seem to have the language for it. I don't feel dizzy, I don't exactly feel tired, I don't feel as though gravity is pulling me down, I don't feel heavy, or fuzzy-headed, but it's as though every cell in my body is screaming at me to lie flat.

BTW, I'm glad you're over your Covid! I had just been wondering today how you were, after I read a post of yours about it from a while back. That's very good news.

 

I think the subset of people experiencing post-viral fatigue after a Covid infection is substantially larger than those experiencing ME/CFS. I think the true rate of ME/CFS after Covid is probably relatively low (I would think it occurs in far less than in 1% of Covid infections), which doesn’t mean it isn’t the perhaps most substantial part of LC, precisely because of the low recovery rates in the long-term and because other things like post-ICU are part of a rather different problem.

Right at the beginning of the pandemic I suffered from a double blow: First a Covid infection with the wild-type strain and very shortly after glandular fever. The recovery period after that was very long (certainly longer than 6 months to return to previous full health), certainly not what anybody with ME/CFS would describe as a very long period of ill health, but what any health person that has been healthy for their entire life would describe as a very long time period. At no timepoint would I have considered myself to be an ME/CFS patient (I also didn’t really know ME/CFS was much of a thing apart from maybe having hearing a news story once). For several months after minimal physical activity I would experience symptoms that some people will liken to malaise: feeling overheated and feeling fevery, feeling completely exhausted, discomfort in the lympnodes, extreme sweat, feeling unwell.

I suspect that at any given fixed timepoint during those months I would have looked similar to many ME/CFS patients (albeit not a severe or very severe one). I also couldn't be sure whether I would return to full The difference in this case to ME/CFS would have only become clearer if you would have looked at me longitudinally, that is to say over long time frames of several weeks or months as I was making progress and getting closer to the health I used to had, even if those steps will be perceived as very small by any healthy person at a given moment in time.

What might seem obvious to an ME/CFS patient that has been sick for decades, might not be as obvious to a previously healthy person or even a clinician seeing said patient only at one timepoint: Evaluated at one timepoint several months after my acute illness had past, I was unable to engage in physical activities I used to engage in and would feel very unwell after doing so. A skilled clinician familiar with ME/CFS might have recognised that I had extremely little cognitive effects. I might not have been as sharp as I used to be, but after a couple of weeks was able to work without any problems of getting confused or feeling like my head was overworked.

The reason why I think it is important to mention this is that terms such as PEM are also seemingly often being used rather vaguely amongst LC researchers and patients, where PEM has sometimes become too mean “any feeling of feeling worse after doing something”. I know LC patients who experience debilitating shortness of breath following exertion, where this is classified as PEM and who are part of studies, studying PEM. I view this as different to what ME/CFS patients describe as PEM.

If a LC study wants to look at the subset of people that have developed ME/CFS I suspect it might be necessary to, apart from requiring a minimum illness duration of one year, do some form of longitudinal tracking of health improvement. There is however one rather substantial problem with the longitudinal assessment I mentioned above, had I developed a chronic health problem after my EBV infection (some LC patients might for example additionally have rather permanent tissue damage others might just coincidentally develop an autoimmune disease), it might have been very hard or even impossible to differentiate post-viral fatigue from ME/CFS simply because I would have never returned to full health. Something similar can maybe be said about Covid reinfections causing setbacks in certain populations.

 

But isn't that doing things backwards - assuming an explanation nd trying to make the illnesses fit?
I doubt either involves inflammation as such. PVFS presumably involves an immune response but ME/CFS might be a dysregulation of the autonomic system that feeds off normal ongoing immune surveillance events or something like that

They may not be easily distinguishable but I would come back to the example of rheumatoid arthritis and seronegative arthritis. When I became a rheumatologist in 1977 it was generally accepted that these were much the same thing but with a different test result. Now we know that there are two quite different diseases that can be clearly separated that can overlap in presentation almost completely but nevertheless usually can be sorted out with the evidence we now have. In fact we know there are at least three separable entities, now that we have evidence from rituximab treatment.

Again, isn't this accepting the conventional wisdom rather than trying to pick it apart? I am assuming that even the greatest experts on post-viral fatigue haven't thought through that there may be two quite different processes. Other than of course Ramsay, who would have been well aware of the concept of post-viral fatigue and decided there was a different illness called chronic ME.

Moll and Wright sorted out the two sorts of arthritis by looking at very trivial signs - which turned out to be tell-tale. Things like odd fingernails. It turns out that RA and seronegative arthropathy do not feed off each other - they have quite separate pathways. But another example is RA and lupus, where the pathways overlap. RA can be nested within lupus as one of the multiple mistakes the B cells make. We now understand the separate processes.

So 90% overlap of clinical features is still compatible with there being two quite distinct disease processes, either separate or interacting.