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.

 
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:
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.

 
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.
 
Back
Top Bottom