News from Austria and Switzerland

Ah I found what had given me the impression Jonathan has suggested IVIG might have marginal benefits.
The situation for IVIg in ME/CFS is probably quite well documented now. As for most other conditions it has been tried for there are small trials suggesting some, but not very major or consistent, benefit. IVIg was never a very practical approach and from a theoretical standpoint is likely to do just that - having some, but not very major, consistent or sustained benefit. To be honest I think we know enough to say that if we think there is a theoretical basis for something of that sort it would be more sensible to manufacture a 'decoy' monoclonal antibody with an Fc binding site but no functional antigen binding site.
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Jonathan Edwards

Preprint Post in thread 'A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff'

ME/CFS Skeptic said:
Currently the hypothesis seems quite flexible with lots of connections not yet filled in yet. I wonder if there are any tests, observations or experiments that would not fit or refute the hypothesis?
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There are observations that will test various aspects. The most obvious is a large scale GWAS study to look at the risk profile. We ill see how things pan out!

ME/CFS Skeptic said:
Also interested in the sentence about intravenous immunoglobulin because quite a lot of patients are still experimenting with this, so there is likely some data on it. I assume it would need to taken repeatedly in order for...
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I know several people who have tried it. As already mentioned by @Utsikt, this therapy is very popular in Germany and Austria, for whatever reason. I believe the study that initially triggered this interest was the following one:
SNT Gatchaman

Trial Report Thread 'Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With [ME/CFS], 2024, Sjogren, Bragée, Britton.'

Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Per Sjogren; Bjorn Bragée; Sven Britton

PURPOSE
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains an enigma with no curable treatment options at hand. Although patients with ME/CFS are a heterogeneous group, a large proportion of patients present with an infection-driven symptomatology, making them potential responders to immunologic treatments, such as immunoglobulin (IG). Previous studies on IG treatment in patients with ME/CFS...
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The comments say it all.
However, no one has actually benefited from it.
 
The only study of IVIG with very good methodology (double blind placebo controlled randomised) found a null result.

It‘s fair to criticise the study for being old. But the diagnostic criteria they used is actually rather robust for that time.

I don‘t think another RCT would be a bad thing, but in the mean time I think the best evidence we have says it doesn’t help.

Yann04

Trial Report Thread 'Intravenous Immunoglobulin is Ineffective in the Treatment of Patients with Chronic Fatigue Syndrome, 1997, Vollmer-Conna et al'

Intravenous Immunoglobulin is Ineffective in the Treatment of Patients with Chronic Fatigue Syndrome

Vollmer-Conna, Ute; Hickie, Ian; Hadzi-Pavlovic, Dusan; Tymms, Kathie; Wakefield, Denis; Dwyer, John; Lloyd, Andrew

Abstract

PURPOSE: To determine whether the reported therapeutic benefit of intravenous immunoglobulin in patients with chronic fatigue syndrome (CFS) is dose dependent.
PATIENTS AND METHODS: Ninety-nine adult patients, who fulfilled diagnostic criteria for CFS, participated in this double-blind, randomized, and placebo-controlled trial. Patients received...
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Last edited:

900-word article about Dejan Lauber, a young man with ME/CFS, who has also been featured in this moving documentary from 2022 by SRF, the public Swiss TV broadcaster.

AI Summary:

Attending Family Gatherings by Robot: “How I Can Escape Isolation from Time to Time”​

Once a globetrotter, Dejan Lauber is now confined to his two-room apartment. A robot, however, gives him access to the outside world.​

Dejan Lauber, 34, developed ME/CFS after a civilian service assignment in Madagascar. For years he has been unable to leave his apartment and lives with constant physical exhaustion, carefully rationing his limited energy. His symptoms include burning muscles, severe fatigue and shortness of breath, and overexertion can worsen his condition. Once adventurous and active, his daily life is now confined to his two-room apartment, where even short visits are only possible on good days.

To stay connected with the outside world and his family, Lauber uses a small robot that he controls with his phone. The robot visits his father, joins family gatherings, plays games with relatives and allows shared moments despite physical separation. Through the robot, Lauber can see, hear and explore his surroundings and occasionally take part in activities such as being placed on a horse, a car roof or a floating mattress at sea. He says this helps him escape isolation from time to time.

Lauber receives a full disability pension, and his parents and relatives support him daily with meals, shopping and household tasks. With family and friends, he also builds robots for other chronically ill people through the Botkins Charity Project, which has already distributed several devices. He earns no money from the project and says it gives his situation a sense of meaning.
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kontrast.at

Datenrecherche: Wer sich mehrmals mit Corona infiziert, hat auch heute noch Risiko für Spätfolgen

Fünf Jahre sind seit den ersten Corona-Fällen 2020 vergangen und vielerorts hört man, Corona sei mittlerweile wie ein harmloser Schnupfen. Doch internationale Langzeitstudien zu den sogenannten “Post-Akuten-Infektions-Syndromen“ (PAIS), zu denen auch Erkrankungen wie Long Covid und ME/CFS...
kontrast.at kontrast.at

2500-word article by
Jana Winter has been a member of the association Long Covid Austria since early 2025. She works at the academic intersection of ethics, philosophy, and technology. She has published, among others, with the Austrian Academy of Sciences and at Tohoku University in Japan.
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AI Summary:
Data Research: Repeated COVID-19 Infections Still Carry a Risk of Long-Term Consequences

Five years after the first COVID-19 cases in 2020, the pandemic is often portrayed as a completed crisis. However, international long-term studies on post-acute infectious syndromes (PAIS), including Long Covid and ME/CFS, suggest ongoing and serious health risks. Some researchers describe the current situation as a “pandemic after the pandemic,” referring to widespread long-term consequences rather than a new pathogen.

Long Covid Is Widespread, Not a Niche Condition

A 2024 publication estimates around 400 million people worldwide are affected by COVID-19 long-term conditions, with a global prevalence of 36% among infected individuals. Austria, Germany, and the United States report high numbers, though Austrian figures are based on estimates due to missing systematic data and limited diagnostic recognition.

Repeated Infections Increase Long-Term Risks

Studies show that the risk of Long Covid and other follow-up conditions increases with each reinfection. A second infection raises Long Covid risk to around 25%, and a third to 38%. Reinfections also increase risks for cardiovascular disease, diabetes, organ damage, and autoimmune conditions. New data indicate that reinfection raises Long Covid risk by 35%, even in previously unaffected individuals.

Children and Adolescents Are Particularly Affected

Large studies reveal that a second infection doubles Long Covid risk in people under 21. Children and adolescents show increased risks of organ damage, mental health disorders, and new chronic diseases, and should be monitored for up to two years after infection.

Chronic Disease, Costs, and Prevention

About half of Long Covid cases persist beyond two years, often becoming chronic conditions such as ME/CFS. Economic costs are substantial, reaching billions annually. Experts emphasize prevention, research, and specialized care as key responses.
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www.kleinezeitung.at

Kritik an PVA-Gutachtern: ME/CFS-Patienten blitzen bei Staatsanwaltschaft ab

Neun ME/CFS-Betroffene wenden sich an die Staatsanwaltschaft. Kritik an PVA-Gutachtern wegen schwerwiegender Mängel im Umgang mit Patienten.
www.kleinezeitung.at www.kleinezeitung.at

AI Summary:
Criticism of PVA Medical Experts: ME/CFS Patients Rejected by the Public Prosecutor

Nine people with ME/CFS have criticized the assessment practices of medical experts appointed by Austria’s Pension Insurance Institution (PVA).
According to their lawyer, Alexia Stuefer, there are “serious deficiencies” in how patients are treated, including lack of knowledge about ME/CFS and Long Covid, rejection or reinterpretation of specialist diagnoses, and accusations of simulation.
Affected individuals must undergo such assessments when applying for care allowance, rehabilitation benefits, or disability pensions.
The lawyer submitted a factual report to the Vienna Public Prosecutor’s Office in December 2025, arguing that these practices cause severe human suffering and pose a risk to justice.
The prosecutor, however, found no initial suspicion and declined to open an investigation.
The PVA rejected general allegations and stated it could not comment on individual cases.
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As a first step, I improved the german auto translation:
Transcript
0:00
Guten Abend. Schön, dass Sie da sind.
0:03
Man fühlt sich sehr schwach und kann
0:05
auch andauernde Muskelschmerzen haben.
0:08
Dazu kann die Krankheit namens ME/CFS
0:11
führen. Sie ist aber kaum erforscht. Ein
0:13
Arzt übt jetzt Kritik an der Versorgung.
0:16
Einer seiner Patienten hat nach einer
0:18
Covid-infektion die Krankheit bekommen
0:20
in seiner schlimmsten Ausprägung.
0:23
Gestern ist der Patient auf eigenen
0:25
Wunsch hin gestorben. Ulrike Dobesch
0:27
berichtet.
0:29
Die Zahl der Betroffenen in Österreich
0:30
liegt bei 80'000 bis 100'000. Patienten
0:34
erholen sich etwa nach einer
0:35
Covid-Infektion nicht mehr. Manche so
0:37
sehr, dass sie gar keine Energie mehr
0:39
haben. So wie im Fall von Samuel nicht
0:42
mehr leben wollen. ME/CFS kurz für
0:46
myalgische Enzephalomyelitis
0:48
chronisches Fatigue Syndrom nimmt einem die
0:51
körperliche Kraft.
0:53
Kaum belaste ich mich körperlich, kommt
0:56
es zu einem massiven Niedergang meiner
0:59
Energie. Ich kann mich kaum mehr auf den
1:01
Beinen oder geschweige aufrecht halten.
1:04
Ich muss mich hinlegen und das oft
1:06
Stunden oder Tage. Das heißt, ich habe
1:09
zu wenig Energie, meinen Alltag zu äh
1:13
bestreiten. Ich kann auch geringste
1:14
Tätigkeiten oft nicht mehr tun, ohne
1:16
dass ich nicht in eine massive
1:18
Erschöpfung komme.
1:19
Dazu kommt, dass die Erkrankung viel
1:21
nicht bekannt sei. Damit gehe auch
1:23
einher, dass die Patientinnen und
1:25
Patienten kaum finanzielle Hilfe oder
1:27
adäquate Unterstützung bekommen. Es gibt
1:29
zu wenig Anlaufstellen, es gibt auch
1:31
keine ambulanten Dienste, es gibt keine
1:34
Kliniken, wo ich Versorgung, Support,
1:37
Unterstützung bekomme. Das ist alles
1:39
erst im Aufbau begriffen. Geht viel zu
1:41
langsam. Wien etwa hat vor bis zum
1:44
ersten Quartal 2027 eine Anlaufstelle
1:47
einzurichten. Im Wiener Gesundheitsbau
1:49
der Stadt arbeitet man gerade an der
1:51
Planung eines Ambulatoriums für
1:54
postakute Infektionssyndrome.
1:57
5000 Patientinnen und Patienten sollen
1:59
dort pro Jahr behandelt werden können,
2:01
hieß es im November. Nicht nur Ärzte und
2:04
Therapeuten würden Schulungen brauchen.
2:06
Auch die Zuerkennung von finanzieller
2:08
Unterstützung sei wichtig. Pflegegeld,
2:11
Behinderungsgrade zuzuerkennen, dass sie
2:13
schwerst betroffen sind. Auch hier gibt
2:16
es große Probleme. Hier diese
2:18
Anerkennung dieser Erkrankung, die
2:20
vielen nicht bekannt ist. Gutachter der
2:23
Versicherungen kennen die Krankheit
2:25
nicht, sollen sie aber beurteilen und
2:27
begutachten.
2:29
Das kritisiert auch die Wienerpflege und
2:31
Patientinnenanwaltschaft.
2:33
Dort heißt es, dass wiederkehrende
2:34
Beschwerden zeigen würden, dass noch
2:36
immer viele Sachverständige der
2:38
Pensionsversicherung, aber auch im
2:40
Gerichtsverfahren zur Überprüfung
2:43
negativer PVA Bescheide, die notwendige
2:46
Empathie vermissen lassen und die
2:48
Untersuchung der Patientinnen im Wege
2:51
von Hausbesuchen verweigern würden. Auch
2:54
im Fall von Samuel, den der Standard (Zeitung)
2:56
beschreibt, hat vielfach Unterstützung
2:58
gefehlt. mehr Unterstützung der Familie,
3:01
der Mutter, die sich letztlich Tag und
3:03
Nacht um den Buben gekümmert hat, um
3:06
hier auch äh das Coping, den Umgang mit
3:08
der Erkrankung vielleicht doch etwas
3:09
noch zu unterstützen. Wir können es
3:12
derzeit nicht heilen, wir haben keine
3:13
Medikamente, die die Erkrankung heilen.
3:16
Aber ich höre immer ein bisschen den
3:18
Satz, wenn man nicht mehr leben will, so
3:20
möchte ich nicht mehr leben und dieses
3:22
so um das geht es. Samuel ist 21 Jahre
3:27
alt geworden.
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In a next step, I ran it through ChatGPT and then fixed some mistakes:
0:00
Good evening. It’s nice to have you with us.

0:03
People feel very weak and may

0:05
also suffer from persistent muscle pain.

0:08
This can be caused by the illness known as ME/CFS.

0:11
However, it has hardly been researched. A

0:13
doctor is now criticizing the lack of care.

0:16
One of his patients developed the illness after a

0:18
COVID infection,

0:20
in its most severe form.

0:23
Yesterday, the patient died

0:25
at his own request. Ulrike Dobesch

0:27
reports.

0:29
The number of people affected in Austria

0:30
is between 80,000 and 100,000. Patients

0:34
often do not recover after a

0:35
COVID infection. Some

0:37
so severely that they have

0:39
no energy left at all. As in the case of Samuel, who no longer

0:42
wanted to live. ME/CFS, short for

0:46
myalgic encephalomyelitis,

0:48
chronic fatigue syndrome, takes away

0:51
one’s physical strength.

0:53
As soon as I exert myself physically,

0:56
there is a massive decline in my

0:59
energy. I can hardly stay on my

1:01
feet, let alone remain upright.

1:04
I have to lie down, often for

1:06
hours or days. That means I have

1:09
too little energy to manage

1:13
my everyday life. I often can’t even perform the smallest

1:14
tasks

1:16
without falling into

1:18
severe exhaustion.

1:19
In addition, the illness is largely

1:21
unknown. This also means

1:23
that female and male patients

1:25
receive hardly any financial aid or

1:27
adequate support. There are

1:29
too few points of contact, there are also

1:31
no outpatient services, there are no

1:34
clinics where I receive care, support,

1:37
or assistance. All of this

1:39
is only just beginning to be set up. It is happening far too

1:41
slowly. Vienna, for example, plans to

1:44
establish a contact center by the

1:47
first quarter of 2027. At Vienna’s public health department,

1:49
they are currently working on the

1:51
planning of an outpatient clinic for

1:54
post-acute infection syndromes.

1:57
5,000 female and male patients

1:59
are expected to be treated there per year,

2:01
it was stated in November. Not only doctors and

2:04
therapists would need training.

2:06
The granting of financial

2:08
support is also important. Care allowances,

2:11
recognition of disability status, acknowledging that they

2:13
are severely affected. Here, too, there are

2:16
major problems. This

2:18
recognition of an illness

2:20
that is unknown to many. Medical assessors for

2:23
insurance companies do not know the disease,

2:25
yet they are supposed to evaluate and

2:27
assess it.

2:29
This is also criticized by Vienna Care and the

2:31
Patient Advocacy Office.

2:33
They state that recurring

2:34
complaints show that

2:36
many experts from the pension insurance system,

2:38
as well as in court proceedings reviewing

2:40
negative PVA decisions,

2:43
lack the necessary

2:46
empathy and refuse

2:48
to examine patients

2:51
via home visits. In Samuel’s case as well,

2:54
which *Der Standard* reports on,

2:56
support was often lacking. More support for the family,

2:58
especially the mother, who ultimately cared for the boy

3:01
day and

3:03
night, to perhaps better support

3:06
coping and dealing with

3:08
the illness. We cannot

3:09
currently cure it; we have no

3:12
medications that cure the disease.

3:13
But I keep hearing the phrase,

3:16
when someone no longer wants to live,

3:18
“I don’t want to live like this anymore,” and that "like this"

3:20
is what it's about. Samuel

3:22
lived to be

3:27
21 years old.
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Hope that helps.
 
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