Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment

[alex3619]

One of the things that is disturbing about the redefined dualism that claims to be monism is that mind and brain are one but they don't like talking about physical treatments, especially since most drug therapies they have touted do not work.

I wish closet dualists would own up, and not claim to be monists.

As a moniist in mind-brain theory I go so far as to say the mind does not exist. Its a throwback to magic, demonic possession and miasma as a cause of disease. Mind is simply a label we use to describe what we see in some aspects of brain function. Its a description of outcomes and process of brain. As a label its convenient, but its not a substantive thing, and certainly not tangible.

However, like concepts such as justice and love, the concept of mind does have some relevance to how we talk about things. Its a good linguistic label in some cases, but it becomes confusing because we start to think of it as real.

If body-mind-social, or biopsychosocial, views are accurate, and if it follows that they are interconnected and mind can correct body, and social can correct mind then:

It follows that two way interconnectness means that body can correct mind, and so society. So we can fix society by giving the right pills, if only we can find out what they are. This is the same logic, but it reverses causality to what they claim. It makes the fallacies more obvious.

 

[DanME]

One of the things that is disturbing about the redefined dualism that claims to be monism is that mind and brain are one but they don't like talking about physical treatments, especially since most drug therapies they have touted do not work.

As a moniist in mind-brain theory I go so far as to say the mind does not exist. .

Good point, Alex. I am a moniist too and everybody should be, unless you believe that the mind is somehow physically uncoupled from brain, which would be a magical or spiritual process. Of course the brain heavily auto regulates itself, but so do the heart and the kidneys. The central nervous system is simply another organ, the mind is one of the outcomes of billions of neurones communicating with each other. Astonishing, but not magical.

What I don't get about all this psychosomatic nonsense is how unspecific it is. The brain is of course heavily connected with the rest of the body, via hormones, the spinal cord and the nerves of the autonomous nervous systems. But these are specific connections with very specific functions. One connection moves a muscle, another connection gives an impulse to digest or to store sugar. But if you propose new connections, you must prove them. Proposing them is not enough. The brain cannot magically influence DNA mutations in a pankreas cell, open a blocked artery or heal a broken bone. Its influence has limits. The mind is not a force, which magically flows through the body and controls every cell and enzyme out there.

 

[deleder2k]

What puzzles me is that the authors are not honest about the fact that Wyller has no evidence at all for his stress theory. Why isn't he humble and prudent like Fluge and Mella? Why not say that CBT may have a little effect for SOME patients, while most of the patients (even in the Pace trial which he hails) show no benefit from CBT at all? Why not say that he simply have no clue whether his "Sustained Arousal Theory" is correct or not? He has spent 15 years researching it, and he has provided no proof for its existence.

Maybe we should crowdfund a christmas gift to the authors? A good friend of mine recommended this book: The Logic of Scientific Discovery

 

[Jonathan Edwards]

The incoherence of the argument is really very peculiar - and is exactly the same from everyone who clings to CBT.

(I think I am right in saying that the difference between the rituximab trial and PACE is that both failed to meet their primary endpoint but in the rituximab trial the truth was pointed out in the paper and in the PACE trial it was kept quiet. The seekers of truth seem to have identified themselves already.)

It reminds me of the classic dialogue between Bluebottle and Eccles:

"What's the time, Eccles?"

"Half past eight."

"How do you know, Eccles?"

"I got it written down on a piece of paper."

"When did you write it down, Eccles?"

"At half past eight."

Or something to that effect.

 

[richio76]

The irritant in this paper for me is the recommendation of CBT for the severely affected. Above they demand the highest possible evidence for any other theory or treatment then declare that CBT should be used in this group and that it is safe despite an appallingly weak evidence base. It's blatant double standards. Can you imagine trying to give CBT to a patient with severe ME, possibly with light and sound sensitivity and unable to hold a conversation without extreme pain and deterioration?

 

[BurnA]

I am puzzled why these articles keep getting written. I mean surely even the supporters of cbt and the psycho lobby know that the writing is on the wall. The time is fast approaching where people will laugh at these ideas and they will be a source of embarrassment for anyone associated with them.

They remind me of the FIFA executive. Decades of blatant corruption but kept smiling and denying till the end. Then one night, all sleeping soundly in their 5 star hotel they are woken up from their dream to find themselves in prison.

 

[A.B.]

A number of studies have also reported immunological changes characterised by mild systemic inflammation (increase in proinflammatory cytokines) and impaired NK cell function (10), but here there are contradictory findings. One problem is publication bias, whereby sporadic positive findings are reported because they are original and exciting, but in time turn out to be false positives.

One of the most consistent findings in ME/CFS subjects is poor NK cell function. Using K562 cells as target cells, 16 of 17 studies reviewed found poor function in subjects compared with healthy controls. However, this finding should be interpreted with caution as even the strongest of these studies are subject to methodological limitations discussed at the beginning of Chapter 4. Furthermore, it is unclear from the description of the methodology of some of the studies whether multiple studies included the same subjects. The largest study compared 176 ME/CFS subjects with 230 healthy controls and found a significant group effect of poorer NK cell function in the ME/CFS cohort (Fletcher et al., 2010). Curriu and colleagues (2013) showed that there were differences in mean cytotoxicity between ME/CFS subjects and healthy controls, but the range was the same. Brenu and colleagues (2012b) studied 65 ME/CFS patients and 21 matched controls in a longitudinal study of three time points over 12 months and found significant deficits in NK cytotoxic activity in the patient group at each time point using peripheral blood mononuclear cells (PBMCs) and a flow cytometric measure of killing. Caligiuri and colleagues (1987) demonstrated reduced cytotoxic activity of ME/CFS NK cells to K562 targets. On the other hand, one study with 26 ME/CFS patients and 50 controls failed to demonstrate impaired NK cell function in the ME/CFS patients using a K562 chromium (Cr) release assay of peripheral blood lymphocytes (PBLs) (Mawle et al., 1997). The authors of this study do not report NK cell counts or CD3-CD56+, but as described, NK numbers generally are not low in ME/CFS.

IOM report, page 149.

 

[Esther12]

I think I am right in saying that the difference between the rituximab trial and PACE is that both failed to meet their primary endpoint but in the rituximab trial the truth was pointed out in the paper and in the PACE trial it was kept quiet. The seekers of truth seem to have identified themselves already.

PACE have never released data for a number of primary outcomes, so it's hard to say. In their full protocol they said:

"We propose that a clinically important difference would be between 2 and 3 times the improvement rate of SSMC."

It seems unlikely that CBT or GET would meet that.

 

[alex3619]

The brain is of course heavily connected with the rest of the body, via hormones, the spinal cord and the nerves of the autonomous nervous systems. But these are specific connections with very specific functions. One connection moves a muscle,

Brain has some plasticity and capacity to shift connections within a region, albeit slowly. However the point remains very strong in many almost or entirely hardwired regions of the brain, as well as general interconnectivity, region by region. This was a point I was going to make repeatedly in my notes for my thesis in the mid 90s, based of course on 90s science.

Capacity to change function, for CBT and other therapies to work, is entirely limited on what constraints on change are physically possible tn the brain. The more magical claims about CBT are verging on claims made by psychics, attributing without evidence all sorts of mental powers, though they vary in nature from those made by psychics. Invocation of magic is not science. Its fine to invoke hypotheses, and use these to drive research.

It is not fine to accept such claims on dubious evidence and then use those in medical practice. Yet psychiatry is rich in unsubstantiated magical claims, claims that arise in court cases, and are used as excuses to section patients, including taking children from their parents. Not to mention are used to treat patients .... some of this is surely quackery in disguise.

Its fine to talk about secondary gains in patients, though at least some experts acknowledge such gains are very rare. However its frowned upon to talk of secondary gains from treating doctors, and especially from institutions that stand to lose a lot of money. This includes large corporations who fear class action lawsuits after some major incident.

It would be easy to say that psychiatrists should not be allowed to section people, or give testimony in court, but there are some few cases where psychiatric testimony or sectioning is critical to keep people alive. The problem is similar to diagnostic expansion ... many are harmed unnecessarily, and this is probably the majority now, but some really need that diagnosis. So what to do about it? The only answer I see is biomarkers, or a biomarker-symptom hybrid. Until then I think the power of psychiatry needs to be put on a leash, severely curtailed.

However I also think that psychiatry also needs to embrace the "I don't know" idea, and to decide which part of psychiatry is strong enough to stay within medicine, and which part needs to be placed outside of medicine, and without medical privileges. I believe psychogenic medicine falls outside of medicine, and should be called psychogenic theory or something. I think its days are numbered, as in the end science will banish it to the same level as astrology.

 

[Valentijn]

I believe psychogenic medicine falls outside of medicine, and should be called psychogenic theory or something.

Theories have a legitimate place in science. So I prefer "psychogenic philosophy" instead

 

[alex3619]

Theories have a legitimate place in science. So I prefer "psychogenic philosophy" instead

The original psychosomatic agenda is still valid I think. Its the pseudoscience that has grown up around the modern versions that is in doubt. I like philosophy less than theory, though perhaps hypothesis is better than theory. For all the flaws in philosophy, it tends to be rigorously thought out, though often rests on foundations of air. In other words, it tends to be rational but not sufficiently grounded in reality. I cannot claim the same for the psychogenic agenda. Trying out a new word, agenda, not sure I like that either. Sigh. Psychogenic claims, that might be a better word, are not rigorously thought out, not rational, and not grounded on concrete evidence.

 

[Gijs]

Alex tell me: where can we find the 'psyche' ? on a MRI scan?

 

[alex3619]

Alex tell me: where can we find the 'psyche' ? on a MRI scan?

The original psychosomatic agenda included that question. As a question. (Though obviously not using MRIs. They did not even have vacuum tubes.) Otherwise I consider it synonymous with mind and therefore brain function. An archaic label. Occam's Razor suggests it does not exist. To see the original agenda in action you have to go back to nineteenth century papers.

 

[Gijs]

The original psychosomatic agenda included that question. As a question. (Though obviously not using MRIs. They did not even have vacuum tubes.) Otherwise I consider it synonymous with mind and therefore brain function. An archaic label. Occam's Razor suggests it does not exist. To see the original agenda in action you have to go back to nineteenth century papers.

Brain function? Like moving muscles, breathing, hartrate etc... mmm.. thinking? is that a chemical process? The psyche doesn't exist at all. It is all neurological and chemicals. The outcome of the brain like thinking and awareness is just an illusion of the brain

 

[Asa]

...To see the original agenda in action you have to go back to nineteenth century papers.

@alex3619 Are there any particular papers you're thinking of here? I'm just curious, regarding BPS origins and influnces which gave way / contributed to it, etc... Thank you!

 

[mango]

Theories have a legitimate place in science. So I prefer "psychogenic philosophy" instead

or perhaps "psychogenic speculations"?

 

[mango]

here's another very recent article from the same journal, where 'chronic fatigue syndrome/myalgic encephalopathy' is mentioned:

"It's only mental" by A Breal

The distinction between «mental» and «physical» is an impediment to an integrated understanding of the human. We are not a mind and a body, but both, inseparably and at the same time.

[...]Dualism nevertheless persists, primarily in the popular imagination, as seen in the debate on chronic fatigue syndrome/myalgic encephalopathy (9), but perhaps more surprisingly it also permeates textbooks on neuroscience (10). Amazingly often, the dualist notion of illness is linked to ideas of a hierarchy, in which diseases perceived as «physical» seem to enjoy a higher prestige than diseases that are seen as «mental».

http://tidsskriftet.no/article/3435200/en_GB

 

[Lou]

Brain function? Like moving muscles, breathing, hartrate etc... mmm.. thinking? is that a chemical process? The psyche doesn't exist at all. It is all neurological and chemicals. The outcome of the brain like thinking and awareness is just an illusion of the brain

Having not read too much of this thread I may be missing the point, taking your post too literal. There is no psyche? We may be throwing out the baby with the tainted psycho babbling water.

People like Carl Jung, not a small mind, would disagree, pretty sure. I think he'd say deep down, far beyond the first layer of unconscious where common dreams originate, much deeper where all that brain matter, the neurological and chemicals, as you say, coalesce with something non material, exists something he called the collective unconscious. And here reside things that may never before have been conscious. Which implicates an autonomous factor. Quiet mysterious, if you think about it.

 

[Mark]

Brain function? Like moving muscles, breathing, hartrate etc... mmm.. thinking? is that a chemical process? The psyche doesn't exist at all. It is all neurological and chemicals. The outcome of the brain like thinking and awareness is just an illusion of the brain

What puzzles me about this idea, though, is who or what is being fooled by this illusion?

 

[alex3619]

@alex3619 Are there any particular papers you're thinking of here? I'm just curious, regarding BPS origins and influnces which gave way / contributed to it, etc... Thank you!

I read some of Beards work and other work from the 19th century, including articles on neurasthenia. Beard had his early theory, which got reused with different explanations by Wessely when he resurrected the term neurasthenia. I think some of these articles were reprinted in a memorial edition of, perhaps, the New England Journal of Medicine? This was a handful of years back, and I no longer recall details.

The early focus of psychosomatic research was to inquire on the nature of mind, body and disease. It was a research agenda. Though how neurasthenia was discussed shows that there was a problem in anything like solid methodology. Freud of course came along and muddied all this up.