MECFS ist keine erfundene Krankheit

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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.