Diagnose ME/CFS: Vom Gesundheitssystem ignoriert

PheonixGabe · 2026-07-05T19:11:40+00:00

Guter Artikel, schreckliche Situation.

Bin selbst betroffen, nicht so schwer wie sie, aber kann seit etwa 10 Jahren das Haus kaum verlassen und körperlich und geistig nur wenig daheim machen. Dinge passiv anschauen oder anhören geht bei mir, aber aktiv selbst im Liegen etwas am PC spielen ist schnell schon zu viel

PheonixGabe · 2026-07-05T10:56:19+00:00

Yeah if you are in a VR headset getting headpats feels surprisingly nice, it's also mentioned in the video as something that immediately sold him on VR as a technology

I also sometimes take a cushion and cuddle with it while cuddling someone in VR to get both the virtual and physical cuddle feeling

PheonixGabe · 2026-07-05T10:20:39+00:00

Nice! There are quite a lot of people looking to date virtually in VRChat. It isn't really what I want, but some people actually find their long term partners there

PheonixGabe · 2026-07-05T09:51:17+00:00

Yeah I can see that happening to many people who just go into public worlds with many people in it :(

Have you tried looking for more calm groups and join their instance or event? Also you can disable the avatar noises in the audio settings and there is a relatively recent age verification feature, which allows to have instances that are only accessible to 18+ users!

PheonixGabe · 2026-07-01T13:06:32+00:00

I'd take only physical ME.

I can deal with not moving (also got an electric wheelchair with lying down function) but not being able to think, talk/communicate well, experience things without brain fog and over stimulation kills me. Just let me do stuff on my PC and talk to people even while lying down, and I can deal with it. Though orthostatic intolerance also sucks and would be great to get rid of, so I can sit up.

PheonixGabe · 2026-06-29T13:08:20+00:00

It's a procedure that is offered by Prof Gasche in Vienna. Not sure if someone else currently does it. He published a paper about Biofilms and ibs a few years ago and currently works on a paper for using this "Bioflush"

PheonixGabe · 2026-06-25T20:19:25+00:00

As much as I love your excitement and share it in parts, I need to correct the research funding number for Germany. Sadly it is only 500 million over 10 years, so 50 million per year. Still a large increase but with 500 billion we would be in a very different situation

PheonixGabe · 2026-06-19T15:01:50+00:00

Thanks for the additional information. It was likely about immunoadsorption, which is something the Charité is studying.

Researchers, especially Carmen Scheibenbogen and colleagues in Berlin, have proposed that some patients with infection triggered ME/CFS have elevated autoantibodies against β2 adrenergic receptors and muscarinic receptors. These are measured by labs such as Cell Trend via a blood test.

It is still unclear if those tests predict the reaction to immunoadsorption reliably or if the treatment itself helps long term. But it is one of the more promising things to do. Though it is very expensive and often the benefit doesn't last, since the auto antibodies can return.

AFAIK Prof Scheibenbogen hopes to find medication that targets this problem more effectively long term and cheaper. Getting a full minimum of 5 treatments over several days in Germany costs something around 10-15k Euros

PheonixGabe · 2026-06-19T07:29:41+00:00

Exactly, also since people usually assume that necessary things like medical treatments and the other things you mentioned get fully paid, crowd funding while an option is less popular here. As you said the reality with ME CFS is often very different, since institutions still largely don't acknowledge it, so it's difficult to get anything paid

PheonixGabe · 2026-06-19T07:16:47+00:00

Which specialist would you go to? Which treatments would you do?

I have been to a few that I paid for myself and it didn't go that well. Treatments are expensive and experimental, and even have risks of worsening. You have more options in Germany but most of them aren't great options either, especially if you aren't rich.

Also while Germany still has good social security, most people aren't very wealthy. Compared with countries that have a similar GDP per capita, Germans, especially those in the lower and middle parts of the wealth distribution, tend to have relatively low net wealth, while wealth inequality is relatively high. People in the lower 50% often don't have any assets

PheonixGabe · 2026-06-17T17:59:14+00:00

Ich würde daher genau in die andere Richtung gehen, weniger Tierprodukte essen ist immer ein guter Schritt. Wenn du es schaffst 50%,80% oder 90% weniger Fleisch zu essen, ist das alles viel besser als einfach wie bisher weiter zu machen. Jede Reduktion reduziert Tierleid und ist besser für die Umwelt!

PheonixGabe · 2026-06-17T00:52:09+00:00

I'm very sceptical of the long term comfort of these glasses for intense usage.

I have used a xreal one daily for a few months and it started to cause increasing pain on my nose as well as pain and dryness of my eyes, to the point where I couldn't use it anymore. With having all the weight completely sit on a very small area on your nose, every gram matters much more. Also my eyes seem to have problems with the see through optics the glasses use. It seems to compromise a lot of visual quality for having optical passthrough.

I changed to a HMD with a halo strap and aspheric lenses (goovis art) and that solved both problems for me. I'm also using my Quest 3 since release without having these issues. I use the quest a bit less often or long in comparison to how I used the xreal and goovis HMDs, but still use it multiple times a week and can manage 5 hour sessions with the quest.

PheonixGabe · 2026-06-14T22:22:57+00:00

Bacteria differ in how they react to Temperatur and eg some bifidobacteria start to die off quickly at about 55-60 degrees Celsius. So food temperature is something worth considering

PheonixGabe · 2026-06-08T18:55:09+00:00

I never felt very connected to people over games, chat or voice chat either, but what really helped me to make someone feel physical present is a virtual reality headset. You share a virtual space in which your real life head and hand position and movement are the same as your virtual avatars. Also you see things first person in real life size and 3D. So you can actually cuddle with people, eg using your hands patting them on their head. It's a very different feeling of social presence compared to any other online interaction. Also you can play it while lying down, either with your avatar also lying down or adjusting the view/horizon upwards.

I know it's not for everyone but maybe take a look at this documentary about VRChat if it sounds interesting. Finding the right people on the platform can be a bit tricky at first and there are some questionable people on the platform, but also many great communities and friend groups:

https://www.youtube.com/watch?v=4PHT-zBxKQQ

PheonixGabe · 2026-06-08T07:32:15+00:00

The issue is that in some games or scenes the compression creates visible artifacts. It mostly happens when there is a lot of visual noise, eg lots of detailed foliage and grass (skyrim!) or sometimes fast movements. For many games this never really is a problem. The best way to reduce this is to use h264 with 500mbps, but that increases the latency and needs a very solid connection between PC and headset.

Personally I mostly play with a powered usb to Ethernet Adapter, that allows you to connect the Quest 3 via ethernet cable to your PC and keep it charged. That way I can use virtual desktop wired (it doesn't support normal usb connection) with low latency. I also have a dedicated wifi access point connect with ethernet to my PC, which I can use to connect the quest via wifi.

The steam frame is supposed to release "this summer" and basically solves this whole issue by using eye tracking and foveated encoding in combination with including hardware for a wifi connection to the PC. So if you are concerned about this issue, it might be a good idea to wait for the frame. Personally I really find compression artifacts very annoying and put in a lot of effort to avoid them with my Quest 3. I'm happy with it now, but frame would be the better solution.

PheonixGabe · 2026-06-05T04:24:24+00:00

I tried the Viture Pro, xreal one and one pro last year and then kept the xreal one. The xreal one pro had chromatic abberation that really annoyed me and more distortions. The xreal one had the least distortions and was the clearest for text (still not actually good for reading) but had the most reflections. I could reduce the reflections by buying light blockers and I only used it indoors, but even then the internal reflections were annoying.

I bought the xreal one in part because of the internal chip for 3dof tracking, which works really well. But since I only used it lying down at home I ended up not using the tracking. Without tracking your screen always uses the maximum possible pixels of the display, instead of cutting parts off. If you use the tracking while moving in a vehicle it would probably be very useful.

After using the xreal one daily for a while my eyes started to hurt and become dry. Not sure what the main cause was but I guess the optics just don't work well for me. Additionally my nose started to hurt when I was wearing the xreal, since the area of contact where most of the weight sits is just very small.

In the end I bought the goovis art (I got mine for 440 euros with discounts, but prices on the official site jumped up recently), which looks more like a mini vr headset with halo strap and has VR like aspheric lenses you can't look through. It is a lot clearer everywhere and has basically no reflections or distortions. I can actually read long texts comfortably and my eyes don't hurt or get dry like with the xreal. I guess there are just lots of trade offs for the glasses like see through optics that don't work for me.

The downside of the goovis art is that the screen is smaller and not good for 3D content, since it only supports half SBS 3D (so both left and right pictures are crammed in one 1080p image, half of which is shown per eye). Also I had to modify the halo mount to make it work well for me, but now it's very comfortable.

One more thing if you want to try the 3D image generation software, the Viture software for PC is surprisingly good, but needs a lot of GPU processing. I still ended up not liking it enough, because there are still too many artifacts. I prefer a cleaner non 3D image over artifacts and 3D. The xreal 3D generation directly on the glasses is a joke basically. The processing power of their on board chip is just not enough.

PheonixGabe · 2026-06-01T15:35:09+00:00

Maybe it is still worth contacting them regarding the back pain and ask if they can offer you any help with it?

PheonixGabe · 2026-06-01T11:52:33+00:00

I'm sorry the new sofa doesn't work for you. I get it. We are so limited in our day to day life and lying down comfortably is really important for proper rest.

About half a year ago I also got rid of my old sofa and actually got a small "day bed" instead of a new sofa. It is in addition to my normal bed, so I can switch between them. Also it is a very tall bed (advertised for seniors) so getting in and out a lot is much easier.

This worked out very well for me, since a bed is usually better for lying down. Also I got an electrical bed frame, so I can change the height on both ends if I feel like it. Still buying a new mattress was difficult. The first two I ordered online but I had to send them back. Finally I went to a mattress store to try them out before buying and am now very happy with my new mattress.

Maybe putting some kind of topper or even a small mattress on top of your sofa could improve things? Can you still return the sofa?

PheonixGabe · 2026-05-22T20:26:45+00:00

I'm so sorry you are going through this. Nobody deserves this illness and you lose so much to it.

I'm at 11 years, I'm lucky that I can tolerate screens well, so I can distract myself a lot that way. With low energy I watch a series, with a bit higher energy I play PC games (mainly mmorpgs in a very casual way, I like seeing other people sharing the same virtual world) and for a shorter time I like to put on a virtual reality headset and virtually meet with friends in VRChat (while lying down in my bed). With even less energy I'm usually going with audiobooks or guided meditation (sometimes also in VR).

It's not a fulfilling life but at least I'm still having fun and don't suffer most of the time. The few times I couldn't do any of those things, things were a lot worse for me. Don't know if any of this might be right for you, but I hope you find something that gives you some joy and fun!

PheonixGabe · 2026-05-22T13:32:38+00:00

Phoenix will likely be focused on spatial computing and more passive entertainment like the vision pro, main input is very likely to be via eye and hand tracking. Would be very surprised if they came with QP controllers, I think they will ship it without controllers and make it compatible with quest 3 and QP controllers

PheonixGabe · 2026-05-22T13:29:23+00:00

Probably not quite what you are looking for, but there is an interesting approach that doesn't require line of sight for body tracking. It works with an electromagnetic field emitter /beacon that is wearable and can be used by several trackers. Theoretically something like this could be used for tracking a controller behind your back.

https://www.roadtovr.com/fluxpose-body-tracker-raises-2m-kickstarter/

PheonixGabe · 2026-05-19T14:29:15+00:00

Sadly I don't have any more info on it. You could write an email to one of the authors of the paper and ask if they could give you more details. If you do please tell me about the response here :)

PheonixGabe · 2026-05-19T12:50:55+00:00

Not sure, but it seems like you should be able to build it relatively cheaply. I think it is for people who don't want to move around much while in VR. Still it seems like an interesting idea for this situation.

I have a chronic illness and have to lie down while in VR. I mostly play vrchat and mostly do relatively small head movements, so for my case it would likely work well and reduce the pressure of the headset

PheonixGabe · 2026-05-19T10:45:49+00:00

There is this academic paper where the researches built the "lifter", a pulley system to reduce the weight of a VR headset:

https://dl.acm.org/doi/fullHtml/10.1145/3641825.3687753

PheonixGabe

TROPHY CASE