The Concept of ME/CFS, 2024, Edwards

Thank you @Jonathan Edwards, it definitely gets across how much is not known, but reinforces the idea that ME/CFS is a meaningful clinical grouping though we have such a limited understanding of its aetiology.

I have always been lucky to have GPs who understood how little we know, though I have had some contact with consultants and researchers who seemed more dogma driven and am aware of many who have had a much more negative experience of the medical profession. Let’s hope this article encourages more doctors and other clinicians to be more comfortable with and more open about our current limited knowledge base.

 

Note. I will keep this link handy to bring up in the ever reoccurring ME versus CFS naming arguments.

 

It’s a preprint.

 

Peer review on Qeios occurs live by you. I may have opted to give it preprint status so that I can also submit it elsewhere but usually it becomes an official peer reviewed publication as soon as three decent reviews are up.

 

Thank you, @Jonathan Edwards, for an interesting article. I am concerned that ME advocates often exaggerate physiological abnormalities reported in the literature, both in terms of how robust they are and what conclusions we can draw about the underlying pathology. Exaggerated claims only serve to reinforce the belief of BPS proponents that ME/CFS is a bogus construct. The clinical presentation alone is sufficient to justify defining ME/CFS as a distinct syndrome—a syndrome that we have little robust knowledge about.

Regarding the history, the term ME was originally used for a contagious illness with primarily neurological symptoms that has been documented in multiple outbreaks. Eventually, it was noticed that the illness often leads to prolonged, chronic illness. In the 1980s, research interest shifted from epidemics to the chronic phase of ME. It was also noticed that other infections resulted in a similar chronic condition. The term “postviral fatigue syndrome” was coined by Behan in 1985. The Holmes criteria from 1988 (after the outbreak in Lake Tahoe) seem to have mixed symptoms from the acute and chronic phase of illness, but the revised Fukuda criteria from 1994 only refer to the chronic phase, regardless of trigger. Thus, as you point out, the syndrome that we now call ME/CFS is not the same as epidemic ME, although the latter seems to be an effective trigger for ME/CFS.

 

I'm feeling a bit sad that I've been ill for nearly 40 years now and yet all we have is a bunch of symptoms identifying a syndrome and we know nothing else about it.

 

You could look at it that way. On the other hand for a lot of other diseases we know that there is irreversible damage here or there (coronary artery blockage and heart cell death or pancreatic failure) and know pretty much nothing else about it. At least for ME/CFS we have never found any permanent damage so the chances of making people well ought to be better than most cases.

In RA we realised that although we thought we understood a lot about immunology the mechanism of the disease involved pathways nobody had thought of existing. I suspect something similar applies in ME/CFS. We haven't seen how the physiology we know well can give rise to a completely unsuspected problem.

 

Although we don't know what mechanism to look at, so maybe there's permanent damage to a mechanism that we can't see. On the other hand, I went from years bedbound to years of being mostly well and able to work full-time and have a life before it all fell apart again, and other people have had (admittedly rare) pretty good recoveries so I think that maybe there is a switch that can be flipped. I know Ron Davis talks about that a lot but I'm not aware of anything very useful coming out of the OMF.

Do we know how many people are looking for novel pathways? I'm wondering if this is a thing where AI could be useful. Just so hard to see what the next step forward should be.

 

The 'switch' theory is interesting to me too based on some experiences I've had with sleep issues. Sleeping like a baby for 11 years from ME onset, and then completely switched off one night for almost 2 years, then good sleep returns like it was switched back on again one night.

I had Parkinsonism symptoms during the time I had severe insomnia for 2 years.

 

I think this is as good as it gets. Which is really sad, all things considered, since this was basically all known decades ago. Not put together, but it was known, in bits and pieces. It's just hard to see how it could come about until social media made the kind of discussions we have here possible. There are a few parts that made my eye twitch, but I recognize that in dealing with physicians who have mostly been taught wrong about it, there's only so much we can hope to do. There is a cultural shift that needs to happen and those happen as slow as molasses-covered balls.

The only thing that raises my concern level above the threshold is the language about going back to bed. Because this is a common framing from deniers and it fits too easily in the preconceived notion about this being depression (which is largely viewed as a problem of motivation my MDs), that we "go back to bed" because we have no motivation to do anything, rather than being unable to be anything but stuck in bed from the moment we wake up (for those who are severe and bedbound), unable to move more, in about the exact same way as people do when they are acutely ill with, say, the flu.

The bed represents chains, not a refuge. It is not a choice, rather it is the absence of any choice but to be dominated by gravity and a failing body. It is better detailed later on, but it's just so common for deniers and minimizers to use this exact language of "well you just give up trying then and go back to bed", as if we're just pouty children who were refused a whole pie for snack right before dinner.

This is a big pill to swallow:

It will have to be swallowed sooner or later. Nevertheless, it is just about the biggest pill the medical profession has ever had to swallow. But it's good to say it this plainly. It's actually so remarkable, how the medical profession has promoted a bunch of mediocre and pseudoscientific nonsense while we keep trying to raise the bar to, at least, the bare minimum.

The parts dismantling the psychosocial fairy tales is excellent.

 

Yes, that's a bit overemphasized. I only recently started taking naps (mostly meditation but whatever) during the day. Even at my worst in recent years I would otherwise never lie flat at all during the day. I wouldn't do much during the day but it doesn't make a big difference overall, I certainly don't 'have' to be horizontal. I just need to exert very little, physically and mentally.

 

I am aware that the lying flat bit and the unpredictability are not 'in the books' but to me they point to aspects that have not been that well covered by the standard accounts and so I think they are worth stressing a bit.

I have now listened to about 500 people on forums describing their symptoms. I am pretty sure that not having an element of feeling forced to lie flat and not having an element of unpredictability are atypical. That isn't to say not having them must be outside the syndrome but time and time again I hear people talking about OI in the wider sense that being recumbent or partly recumbent is necessary some of the time. And I think this distinguishes ME/CFS symptoms quite clearly from 'secondary fatigue' seen with systemic illness like renal failure or RA. I also think it is not typical of depression. I have trained on, and visited, wards with people with severe depressive illness and encountered it in the family. In general the seriously depressed individual sits motionless looking out of a window or into the middle of a room. It also emphasises that the problem is not just deconditioning or lack of ability to move about, although that lack is there. It is a symptom complex that no way would one expect to benefit from doing exercises any more than you would tell someone with acute vertigo to go for a walk (ensuring that they vomit and call over).

But thanks for the comments.

 

I would agree that I have problems with fatigue. Calling it chronic fatigue paints a false picture of a person that has severe fatigue all the time. I've had that for some time but it's not the typical situation I experience. It makes other people doubt the diagnosis because often in my interactions I won't look like I'm severely fatigued and I'm often initially energetic and can do sports.

The fatigue appears with exertion over time, where exertion is any activity. Often my body waits for me to finish doing what I'm doing, and as soon as I begin slowing down, I feel the fatigue and need to lie down. Normal people don't experience this, and they need no or little rest. They don't become exhausted as quickly or as profoundly and don't go lie down on a bed to fall asleep as soon as they stop the activity.

Now that I spend more time with other people, I notice that often people who are 30 years or more older with their own health problems than me have better endurance. They can keep going, and I'm strong initially, but fall behind after some time and then need to rest, while they can switch to some other activity or rest briefly and keep going.

It's more a problem of rapid and profound exhaustion than a constant presence of fatigue.

The body no longer works as expected and how well and capable of exertion I feel doesn't correspond to reality. It's overly optimistic, contrary to BPS ideas. The randomness and unpredictability diminishes once you understand the triggers and dynamics.

 

For me lying flat is an issue. When I still worked, in the last century, over a decade before I had any concept of orthostatic intolerance, I used to lie flat my office floor for fifteen minutes or so at lunch time, to help get through the day. Now for me the amount of time I can spend not being horizontal in a day is as good a proxy as anything for my ME severity.

When I am at my very worst, even when I was largely bed bound, in rolling PEM, there were still times when all I could do was lie on my back in a darkened room as flat as possible and as still as possible and wait for the pain to go away. This could take hours or days, before I could do anything as strenuous as lying on my side and look at my tablet.


It would be interesting I guess to find a way to define how important it is for what percentage of us.

 

The other day I left home at around 9:00 to get some things done in a nearby town. I had a rest break and then got started. At around 12:30 I took a rest break and ate lunch. I had an appointment at 14:00 elsewhere, and I got home around 16:30.

I wasn't sure how it would go but did it anyway. During the second appointment, I had to force myself to do what I needed to do. It didn't feel enjoyable or rewarding, just like I was going through the motions, trying to avoid looking like I was uncomfortable and in pain. What I'm feeling is similar to pain, but it's not coming from any body part, it's just occurring on a mental level. The point is that I can keep going if I have to, but with poor function and significant discomfort (and going so far will lead to PEM).

This is a busy day for me, almost a working day, and I very rarely allow myself to do this. It has what I would consider two significant activities, and also rest breaks outside home which tend to be not very restful. Normally I do at most one significant activity, and rest at home, and need free days during the week with "low activity" days at home where I'm under no pressure and have complete flexibility to do what I feel like doing.

There's no way I could work enough to support myself, yet people tell me that I don't look at all disabled.

Even if PEM wasn't triggered by this overexertion, pushing through wouldn't work. I've tried this approach of ignoring my symptoms. It's a way of training yourself to hate the activity. It's a form of aversion therapy. You can't live doing what you hate and feeling terrible, you'll end up up suicidal.

This is also why questionnaires that ask "can you do this activity" (like walking 1 km) are useless. I can do everything, the question is just how long, what the symptom burden is and whether it is sustainable. The question should be more along the lines of "do you have to limit the hours of ordinary activities of daily life over the course of the week to maintain a tollerable level of symptoms and quality of life" or "do you avoid/limit activities because they make you feel exhausted and sick on the same or next days".

 

It also confused ME's "fatigue-like symptom" with what most people understand as regular fatigue, which goes away with rest.

I'd also call ME's symptom "exhaustion-like" rather than regular exhaustion.If a food can trigger that "exhaustion-like" feeling even without physical exertion, it's not regular fatigue, and doesn't go away with rest.

 

I really appreciate you writing this Johnathan. I think you are the voice of reason currently in the ME world. Everyone gets so caught up in their line or research, their theory, their hope this will be the cure etc and don't step back and go, what can we do to help pwME now? Who is monitoring our nutrition, weight, functioning, level of support required on various levels etc? There are some good GP's but once things get more severe and we need hospitalisation - we are all at the mercy of the treating physician and their assumptions and prejudices.

As an aside, I must admit you have made me question some of my own assumptions about "treatments" that actually have no good scientific evidential basis and I have been complacent and relying on the clinical recommendations of IC of ME clinicians around the world (US mainly). So I am grateful for you challenging and pointing this out too. You (and the forum) have taught me to be more sceptical and less trusting of what clinicians say - in a good way. I don't have the intellectual power or energy to pick apart the research due to worsening ME and really grateful you are here in the forum providing this (and many other members who do this too). I will likely continue using my medical grade compression stockings and 2-3L of electrolytes per day as they make me feel better (even if they have no haemodynamic effect in your professional opinion). Even if it is a placebo, it has helped my orthostatic hypotension, symptoms around this (and functioning). I still have OI and the only thing that fixes that is to lie down horizontally. Preferably proper resting with an eye mask, optimally a darkened room and hopefully a wee nap. Occasionally sitting having my feet up also helps.

I recall many years ago when I worked in medicine that syndromes were syndromes, we didn't really know what caused them but we tried our best to improve their quality of life (including feeding tubes). It does appear that BPS, but also health economics have taken away this crucial part of medicine - to relieve suffering. But it seems now to be - we don't know what to do, so we will do nothing (or reclassify the person with a psychological problem) and there are no social services to deliver care and people have to live an even worse life and die prematurely. I know this is not just for ME, it is for many other illnesses too, but there does seem to be a total lack of interest in improving clinical practice for treating problems that arise in pwME globally and there are plenty of "integrative doctors" peddling supplements, IV fluids and false hope.