MECFS ist keine erfundene Krankheit

[eLender]

Einer der wenigen Wahnsinnigen Mutigen, die überhaupt noch für einen psychosomatischen Ansatz bei der Ganzkörpererschlaffung sprechen (öffentlich). Er ist immerhin selber mit der Kohorte beschäftigt und kennt die Klientel von mehreren Seiten (d.h. auch als Patienten). Man beachte den Hinweis auf den typischen Erschlafften. Ich lese das beinahe immer so, auch in dem, was ich unten noch rauspusten werde.

Dr Sanil Rege FRANZCP | MRCPsych @sanilrege

Pain + Fatigue # Suffering: Here's the Equation 🚨👇

In ME/CFS / Long COVID / fibromyalgia / chronic pain:

Pain ≠ suffering *
Fatigue ≠ suffering*

What's the formula for suffering?

Pain+meaning*= suffering
Fatigue + meaning*= suffering

We know this because many patients were premorbid high performers athletes, clinicians, dancers, academics , driven people who spent years pushing through 'discomfort'. Pushing through pain / fatigue

Premorbidly:

👉Pain/Fatigue + "I can push through" → action stays ON ✅

But in the illness state:

👉Pain/Fatigue + "This means danger / loss / no control" → suffering 🚨

👉Pain/Fatigue + suffering → action switches OFF

So when the same pain or fatigue produces a vastly different outcome after illness, the key variable isn't the symptom ALONE.

It's what the symptom now means: threat, loss of identity, loss of control, and fear about the future.

This is not psychological - this is core neurobiology.

*pain doesn't automatically involve suffering

* meaning = what it signals about safety/identity/future + salience + threat appraisal NOT made up symptoms

https://x.com/sanilrege/status/2025695251806216222

Witzisch: Es gibt eine "Community Note" unter dem Beitrag, die - mit Verweis auf das CDC - den psychosomatischen Ansatz als schädlich bei der Malaise bezeichnet. Das steht aber mit keiner Silbe beim CDC, es wurde einfach erfunden (hätte mich auch gewundert). Diese Blase ist dermaßen aggro, die duldet keinerlei Abweichung vom Dogma. Die sind (gerade im englischsprachigen Raum) im Dauereinsatz und bilden schnell Legionen an Protestlern. Es wird quasi alles komplett ignoriert und niedergeschrien, das nur ansatzweise eine psychische Komponente erwähnt (natürlich auch in dem Beitrag). Das ist beinahe schlimmer als die Transisten. Scientology scheint mir offener zu sein, was Kritik am eigenen Glauben angeht

So, dazu passend auszugsweise ein längerer Artikel aus dem Guardian. Ein langer Leidensweg, der auch zum "Brain Retraining" geführt hat, aber zu keiner dauerhaften Besserung. Ja, da gibt es viele Scharlatane, aber das kann man auch nicht mit Psychosomatik gleichsetzen (man kann es probieren, vielen scheint das zu helfen). Und auch hier gilt: "Heilung" wird vll. nur wenigen zukommen, das ist gerade bei solch langen Verläufen auch eher unwahrscheinlich. Die Dame zieht deshalb ein gespaltenes Fazit.

Once, when I was listening to a guided meditation for pain relief, a professionally dulcet voice instructed me to locate a part of my body that wasn't in pain. My attention found its way into my palms. Minutes later, a searing hot sensation came into both hands: it was as if I'd had the temerity to try to banish pain. Oh no you don't, said the demon

https://www.theguardian.com/society/2026/feb/24/my-maddening-battle-with-chronic-fatigue-syndrome-on-my-worst-days-it-feels-almost-demonic?CMP=Share_iOSApp_Other

Nuja, so ganz scheint das ja nicht gegen die Psychosomatik zu sprechen.

My biggest mental obstacle, though, was that "brain retraining" sounded like a version of "it's all in your head". For almost three decades now, I'd been insisting that the problem was the body – this undeniably physical suffering, these swollen golf balls of lymph nodes (feel them!), this unfakeable weakness (see it!) – not the mind. But this had been to make the mistake of assuming body and mind were discrete territories.
...

There on my laptop screen he rattled off a series of questions whose probing, psychological nature seemed at odds with his cheerful, checklisting manner: was I a perfectionist, would I say I was an overachiever, did I tend to over-extend myself in helping others? (Leaky sacrum! I thought.) I answered yes to all of the above. When Jason said, "Ironically, it's never a lazy person that gets chronic fatigue," it was another thing I wanted to stamp on a badge and brandish in the face of doubters.

Da isser wieder, der typische Kandidat.

The power of the mind-body connection is the first of two principles on which brain retraining rests. It's this mysterious feedback loop of the psychological and the somatic that explains the placebo effect. The second, more controversial notion is that conditions such as long Covid and ME/CFS are explained by the brain and autonomic nervous system erroneously perceiving threat, causing them to send signals to the body that it's in danger. In this way, so the theory goes, the mind detains the body in an illness that has outlived its physical cause. Brain retraining seeks to "rewire" the mind's neural pathways out of these loops. In other words, the very implication I'd railed against for decades was in some sense true: "psychosomatic" need no longer be a dirty word, but instead a term that goes some way to explaining the vexing nature of auto- and neuroimmune disorders.
...

There followed a period of quasi-religious mania. I was cured! (!!!) I began referring to my ME/CFS in the past tense and applying the principles of brain retraining to other areas of my life. Finding myself running further and faster, and writing with more ease, I felt superheroic. My husband, delighted to see me well, also became a little wary around me, as if I might take the mind-over-matter credo to the point of attempting to walk through walls.

Last October, I contacted Jason McTiernan for a second time, now as journalist rather than client. Some months earlier I'd been flattened by another episode. With it came a new desolation – the loss of faith. Only in this moment did it occur to me that I'd recovered from the previous episode in the usual amount of time. Like some disillusioned priest saying his Hail Marys anyway, I'd run through my brain retraining exercises, making entries in a notebook for all the rounds I was doing. I filled pages. Days passed. Nothing changed. After a couple of weeks I gave up. Why hadn't it worked?
...

In other words, I haven't produced the triumphant recovery narrative I'd intended, but nor is this some bitter exposé of the charlatanism of brain retraining. Brain retraining wasn't miraculous, as I'd longed for it to be; and it also wasn't the nonsense that in my grief and disappointment I've wanted to denounce it as being. There would have been a kind of comfort in either conclusion.
...

I would have loved to emerge from this clutching some diamond of insight, but the only wisdom I have feels more like a modest lump of coal: illness is meaningless, random – it happens to all of us, to varying degrees, and it simply sucks. I was wrong to think that this chronic condition demanded meaning be wrested from it.

[eLender]

Ich hatte diesen Sanil Rege oben schon mal verlinkt, obwohl er mir ein wenig suspekt vorkommt (hat auf YT einen Kanal, der wie so ein typischer "Ratgeber in allen SchiefLebenslagen"-Sender aussieht, nuja). Aber er hat doch recht interessante Posts zu dem Thema. Sowas z.B.:

Dr Sanil Rege FRANZCP | MRCPsych @sanilrege

If You Think "Psychosomatic" Means "Not Real," You're Behind. 🚨

A real understanding of "psychosomatic" can be life-changing for both doctor and patient because it shifts the question from "is it real?" to "what is the system trying to regulate ?"

The word itself comes from 'psyche' and 'soma' but psyche now means far more than 'mind'

The irony is that the deeper you understand mind-brain–body regulation - the more you accept how much regulation happens outside conscious control: autonomic, immune, endocrine, and predictive brain–body loops running in the background. 🔄

Most of our actions even are automatised. 

Any clinician who dismisses psychosomatic as outdated isn't rejecting a concept that belongs to history, they're signalling an education gap. ❌

Neuroscience has changed our understanding of psychosomatic . It's for us to understand it now.

In many conditions 'psychosomatic' is a loss of regulation : a brain–body system flooded with signals that show up as symptoms across mind, body, and behaviour, all aiming to achieve one broad goal: to regain stability.

So ask yourself: how can we treat dysregulation without understanding regulation?

Sometimes the benefit isn't the supplement or the exercise routine alone - it's the repeatable ritual that teaches the nervous system safety: same wake time, same light exposure, same walk, same wind-down - predictability becomes the active ingredient.

If we don't understand how the brain and body predict, conserve energy, detect threat, and restore balance, we'll keep focusing on symptoms only- while the system keeps 'producing' them to do its real job: survival.

https://x.com/sanilrege/status/2024294856798195718

Ist vll. etwas zuuu populär (aber nicht unbedingt falsch) ausgedrückt, aber es geistert (auch beim medizinischen Personal) tatsächlich die Vorstellung umher, dass es hier um bewusste psychische Vorgänge geht. Dabei ist das alles wesentlich komplexer und auch nicht voll verstanden. Aber es ist ein wichtiger Ansatz, um überhaupt mit dieser Komplexität umgehen zu können. Menschen wollen immer einfach Ursachen für komplexe Dinge (die "reine" Somatik ist sowas). Aber bedenke: Verschwörungsideologien machen genau das, sie reduzieren Komplexität auf scheinbar leicht verständliche Motive. So dumm wie falsch. Immerhin gibt es jenseits von Blasenwelten noch Menschen, die verstehen wollen, was wirklich hinter den Dingen steckt. Ich bekomme gelegentlich Hinweise dazu. Häppchen:

Functional neurological disorders (FNDs) are neurological conditions resulting from altered brain network activity causing physical symptoms that are genuine but not explained by structural changes in the brain. FND results from abnormal connectivity in the limbic system and overlapping circuitry dysfunction in salience networks. The autonomic nervous system (ANS) refers to the part of the nervous system devoted to unconscious processes, the viscera and homeostasis. The ANS has afferent pathways, central nuclei and networks, and efferent pathways. Since unconscious neural processing and automatic behaviors are under the purview of the ANS, there is great interest in understanding the role of abnormal ANS activity in FND. To date, the overlap between ANS dysfunction and FND has been relatively underexplored. Here, we discuss the role of the ANS in FND and the overlap between autonomic dysfunction and FND.

https://pubmed.ncbi.nlm.nih.gov/41475426/ (mehr als Abstract kann ich leider auch nicht sehen)

(FS = funktionelle "epileptische Anfälle")

Lifetime exposure to trauma is common among individuals with FS, yet how traumatic events are linked to brain structure and function in FS remains unclear.3–5 We recently proposed a two-hit model of FS pathophysiology which underscores the role of early life stressors (eg, physical, emotional) in later development of FNSD/FS in the setting of secondary trauma.2 We hypothesized that neuroinflammation (NI) is the pathophysiological process linking traumatic experiences with neural network alterations in FS.6 In this model, physical or psychological trauma activates the hypothalamic-pituitary-adrenal axis to release catecholamines,7 which causes the immune system to mount an inflammatory response. Interactions between the peripheral and central immune system lead to inflammatory responses in the brain, which leave the brain vulnerable to developing FS either spontaneously or in response to a second insult or trauma

https://www.dovepress.com/peripheral-and-central-nervous-system-biomarkers-of-inflammation-in-fu-peer-reviewed-fulltext-article-NDT

Und noch ein Hinweis auf den Urschleim, spekulativ, aber für alles soll es ja Gründe geben.

Researchers have hypothesized that FND symptoms originate from several evolved defensive strategies [6] (Fig. 1). A primary evolved defense mechanism is freeze, part of the classic fight-flight-freeze-fawn spectrum triggered by predatory imminence [6]. Freeze involves coordinated activity across limbic and brainstem circuits, including the amygdala and PAG, and may be associated with motor inhibition and autonomic changes (often characterized by parasympathetic dominance), although profiles can be mixed [7]. This tonic immobility is widely observed in rats, squid, and other animals. In FND, this freeze-like reaction, which maps on to limb paralysis or some 'motionless unresponsive' events—is often precipitated by exposure to various physical or psychological threats—such as pain, injury, infections, faints, panic or psychological stress. These responses then become 'fixed', implying a system failure to return to a homeostatic baseline after the threat has passed, perhaps through maladaptive predictive processing [1, 2]. By contrast, hyperkinetic FND symptoms such as tremor and seizures map better onto a mixed freeze and fight (or fawn) response rather than freeze alone.

https://academic.oup.com/emph/article/13/1/424/8377956

(Jon Stone hatte ich hier schon öfter im Programm)

Achso: Bildchen von Sanil Rege, damit man das besser versteht