Myalgic encephalomyelitis/chronic fatigue syndrome: an overview of current evidence 2023 Ludwig et al

Abstract

Over the past 5 years both media and scientific interest has surged regarding the disorder myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), not least because of the clinically similar manifestation in long COVID or post-COVID. In this review we discuss the process of clinical diagnosis and randomized controlled therapeutic studies on ME/CFS, and the similarities or differences to long COVID and post-COVID. So far, neither clear pathophysiologically causal nor therapeutic evidence-based results on ME/CFS have been identified in the many years of scientific research. Given the evident psychiatric comorbidity rates in patients with a diagnosis of ME/CFS, a psychosomatic etiology of this syndrome should be considered. Furthermore, a precise and reliable diagnostic classification based on stricter criteria would benefit both pathophysiological and therapeutic research.

Open access, main text in German, https://link.springer.com/article/10.1007/s00115-022-01431-x

 

... sigh ...

 

"Historical considerations

The term "myalgic encephalomyelitis" probably arose in connection with unexplained waves of infection between 1948 and 1955, which were then described as "simulating poliomyelitis" and which occurred in a wide variety of places in the world - from Iceland to the USA to Australia [ 28 ]. being. A total of 15 waves of infection are recorded, the probably best-documented occurring at the Royal Free Hospital in London [ 43]. The majority of those affected were hospital workers who complained of headaches and sore throats, swollen lymph nodes, myalgia, weakness and high temperature. The term "encephalomyelitis" comes from the clinical observation at the time that 74% of those affected also showed neuropsychiatric symptoms (hypersomnia, panic attacks, uncontrollable crying, involvement of the cranial nerves). What all these descriptions have in common is a protracted course with fatigue, flabby muscle weakness and psychiatric symptoms for months after the onset of the disease. Modern imaging methods did not exist at that time, but the CSF examinations carried out did not reveal any evidence of an inflammatory process, nor could a causal infectious agent be identified. Overall, the descriptions should be viewed with reservations in terms of their causal relationships, but they are certainly interesting from a medical-historical point of view. The term "chronic fatigue syndrome" was first used in 1988 to describe ME-like symptoms in Nevada, USA [31 ]."

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Ref 28 is a 1957 report on the Royal Free outbreak, Ref 43 is Mcevedy and Beard's 1970 hatchet job, and Ref 31 is Holmes et al 1988 paper on CFS - no mention of Ramsay or most importantly Acheson's 1959 paper: The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia. If that's the history you start with it's unsurprising your end point is:

"A reliable and unequivocal diagnosis also has a long-term effect on the quality and homogeneity of research results on the etiology, pathogenesis and causal therapy of ME/CFS. Possibly for reasons of stigmatization of psychiatric disorders, the psychosomatic perspective (an obvious one when the symptoms cannot be objectified) has almost completely disappeared from the scientific and media discourse on ME/CFS. However, this also deprives the researchers of the opportunity to conduct randomized controlled studies on physiotherapy (or GET) and talk therapies, and the patients are deprived of the opportunity to receive therapies in this regard. Because in the foreground and in the first place are people who have complaints and who are entitled to have their complaints clarified, diagnosed and treated correctly and sustainably according to current and evidence-based medical knowledge. to carry out randomized controlled studies on physiotherapy (or GET) and talk therapies, and to deprive patients of the opportunity to receive therapies in this regard."

Edit to add: Translations via Google Translate

 

Kiss my ass.

We've decades of this sort of bullshit. History enough to show it results in little more than unrelenting sickness and despair for millions.

 

German psychiatric/psychological establishment come out with some of the absolute worst stuff, don’t they?
Although possibly outshone at points by the Dutch or certain Scandinavian countries.

Because UK equivalents made such world wide splash with their own poorly designed and damaging works I thought at one time that UK was gonna be an outstanding leader in this department. But alas this was not at all the case.

My love and solidarity to Germans and residents of Germany with an ME or CFS diagnosis, or anything else not well understood.

Edit: Austria
own this one. Not Germany Thanks @Peter Trewhitt for the correction!!!

Edit: Also correction, actually responsible Medical establishment of Neurologists. Thanks @CRG !!!

 

This checks all the boxes of shameful ignorance and arrogance. I also resent the notion that psychosomatic researchers are being “deprived” of anything. They’ve completely dominated the narrative and destroyed our existences for decades. They’ve rendered us pariahs, but *they* are the ones being marginalized. It’s really a nightmare

 

Just to note: all the authors are Austrian or at least working in Austria, and all are neurologists !

 

Not that the German medical/academic establishment are blameless, but the authors of this profoundly disappointing article are from Vienna in Austria.

Added - cross posted with @CRG

 

And Vienna is of course where the whole venerable tradition started, of doctors claiming to know better than patients what those patients think, with that old fraud Freud.

 

Ahh thanks!
I saw that it was in German and jumped to conclusions. Apologies German researchers for pinning this one on you.

In that case also big love to my Austrian friends with this illness.

 

I wonder if this is the literal translation. If so, it's strikes me as oddly hostile and disparaging for a disinterested scientific paper. Is there even such a thing as "flabby muscle"?

 

Is Freud german for fraud?

 

I will defer to @TiredSam - it means happiness, but perhaps it’s a specific type of malicious glee, informing portmanteaus like schadenfreude.

 

I as evidenced above I don’t trust my brain today to say who said this- y’all probably remember-but that Dr (English, paediatrician or cardiologist?) who said people with ME should do everything in their power to avoid seeing a Neurologist is certainly backed up by this one isn’t he?

Along with @Jonathan Edwards who advised us all to stop saying that ME is is neurological disease because maybe it isn’t and even if it is virtually the whole specialty loathes us so deeply that little good can come from insisting on seeing a Neurologist. (I may have remembered this slightly wrong & apologies if so)

 

I should have stated: Google translate !!! Flaccid rather than flabby seems a better equivalent in English.

The word schlaffer has a wide range of synonyms: via Google Translate >

Translations of schlaff
Part of speech Translation Reverse translations Frequency
help_outline
adjective
limp

• schlaff,
• schlapp,
• lappig,
• weich,
• matt,
• kraftlos

slack

• locker,
• schlaff,
• lose,
• nachlässig,
• schwach,
• flau

flabby

• schlaff,
• schwabbelig,
• wabbelig,
• farblos,
• ohne Saft und Kraft

flaccid

• schlaff,
• welk

floppy

• schlaff,
• schlapp,
• labberig

loose

• lose,
• locker,
• los,
• frei,
• weit,
• offen

lax

• lax,
• locker,
• lasch,
• nachlässig,
• schlaff,
• lose

soft

• weich,
• sanft,
• leise,
• zart,
• geschmeidig,
• schwach

listless

• lustlos,
• teilnahmslos,
• apathisch,
• schlapp,
• flau,
• schlaff

baggy

• sackartig,
• ausgebeult,
• bauschig,
• schlaff,
• zu weit

torpid

• träge,
• schlaff

exhausted

• erschöpft,
• angegriffen,
• abgekämpft,
• aufgelöst,
• schlaff,
• schachmatt

shattered

• zerschlagen,
• zerschmettert,
• zerstört,
• zerrüttet,
• kaputt,
• fertig

worn-out

• abgetragen,
• verlumpt,
• zerschlissen,
• abgetreten,
• abgedroschen,
• abgenutzt

 

Freude is joy. Schadenfreude is gloating at someone else's misfortune, but that's a special case. Normal Freude is just joy.

Fraud is Betrug. You can mash as many German words together as you like, so Betrugsfreude would be the joy of fraud. I expect a number of our more persistent quack friends could be said to be suffering from Unterbewußtbetrugsfreudichkeitszwangstörung. If you put that into DeepL you get "subconscious fraud joy compulsion disorder", which sounds about right.

 

Why qualify "muscle weakness" at all? Any qualifier here runs the risk of introducing a bias. It's like if I were to say "hillfolk-trained" neurologists, that qualifier may introduce a bias.

 

Completely ridiculous. There have been HUNDREDS of those trials, although none are controlled but that's by choice. Not only has no one been deprived of this, the sheer number is absurd, they're all identically weak and biased. All the planned ones are identically worthless and there are probably over a hundred.

And this treatment model is literally the current thing, which they admit lacks evidence, and want to research all over again, even though this is literally what was imposed on long haulers to very obvious failure. It's literally what's used right now, and these geniuses' big idea is: "hey, let's do this, never before tried".

These people have serious issues. It's not normal to completely ignore reality like this. This is far more serious mental illness than anyone of us has ever faced, it's the essence of delusion to reject reality as it's happening. To blatantly lie like this is fraudulent, false claims like this beclown the entire medical profession.

 

One, count 'em, just one of my unfortunate encounters regarding medical ignorance and abuse, was during a consult with a neurologist, who clearly knew absolutely nothing about ME.