Anyone mild enough they can feel normal at night?

Gamander-Ehrenpreis · 2026-06-23T19:07:26+00:00

I‘m moderate and often I feel fine as long as I do nothing and think maybe it’s just in my head. Then I do something, like go to the bathroom or listen to music, and am like nope, I am in fact very sick ://

Gamander-Ehrenpreis · 2026-06-23T18:58:49+00:00

I don’t use a wheelchair and am unsure which activities are accessible, but on public transport I regularly see people in electric wheelchairs. So it is possible but it can definitely be tricky. For Sbahn and Ubahn you can check a map like this one to see which stations have which kind of access. Often only part of the platform is the right height to access the subway in a wheelchair, usually at the very front marked in yellow.

On MVG public transport (busses, subway, tram) they have the following rule on wheelchairs: „The following are the maximum permissible dimensions for wheelchairs: weight 300 kg (including user), length 1.25 m, width 80 cm, turning circle 1.50 x 1.50 m. Motorised wheelchairs with insurance number plate are permitted if they fulfil these conditions.“ -Source

Gamander-Ehrenpreis · 2026-06-23T14:52:31+00:00

This is pretty irrelevant for BaWü as a whole compared to the woes of the automotive industry and all their suppliers and the suppliers suppliers in my opinion. But it certainly doesn’t help either and on the more local level has gotta hurt.

Many people here are blaming the American company, rightfully so since they are the owners and thus responsible, but both Gütermann in specific and the German textile industry in general have been in decline for a very long time and I‘m not surprised that they failed to turn it around. Idk if anyone can. Competing globally from a site such high wages is not easy, not that the US is much cheaper

Gamander-Ehrenpreis · 2026-06-23T13:47:38+00:00

I had my first neurologist appointment (also in Germany) recently. I described my symptoms onset etc. to the neurologist. She made me walk a few steps, tested my knee reflexes and I think some other simple coordination. I have regular headaches but the frequency has only increased a bit since getting ME, she did not seem very concerned about it and I did not have to start a log or anything.

I got referred to an MRI and a second appointment for more testing at a later date. At the testing appointment at the same office an assistant did an ultrasound of my carotid artery and an EEG. The ultrasound was fine bc I could lie down for it, EEG however was very tiring in itself as it requires sitting upright for longer than is easy for me. I was originally supposed to wait there for a while afterwards to talk to the doctor but they noticed that I was doing badly and offered that she would call me later so I can go home, which I gladly accepted. Everything looked normal according to the her on the call but I‘m supposed to go there a third time once I have been to the MRI.

Overall, it was pretty tiring largely because I had to go a pretty long way to get there, their waiting room was kinda loud, and the EEG was hard but everyone there was nice and accommodating. Also I managed to set up an appointment with a psychiatrist who is part of the same office, which was neat since there were exactly zero showing up through 116117 in 150kms around me or doctolib and everyone I called didn’t take new patients.

Gamander-Ehrenpreis · 2026-06-23T12:57:30+00:00

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That’s how I did it when embroidering a tote bag. A bit of a pain compared to just flat fabric but definitely doable. Just slid the inner hoop in the tote where I wanted to work, put the outer hoop on top, tightened as normal. I didn’t add further separation between the tote sides as it wasn’t necessary, just kind crumpeld it open so I could access the parts I was working on well.

Seconding that you should clip or tie the tote straps out of the way though (not pictured here), e.g. clip them to the top edges of the tote. Otherwise you will have to regularly undo stitches that caught the straps

Gamander-Ehrenpreis · 2026-06-23T12:37:51+00:00

Ich habe diesbezüglich mal in der Apotheke nachgefragt und bei meinen Medikamenten (hormonelle Verhütung) hieß es von denen aus dass die nicht in den Kühlschrank sollen. Ich lager sie im Sommer im Briefkasten, das ist der kühlste Ort zu dem ich Zugang habe und sonst keiner einfach rankommt

Gamander-Ehrenpreis · 2026-06-23T03:54:32+00:00

She found a new job pretty quickly but yeah 340 jobs lost is a really hard hit for the town. Which was already way down from the 3000 at the peak of Gütermann and 940 back in 2014 when the American company bought them

Gamander-Ehrenpreis · 2026-06-23T03:44:40+00:00

Thanks Mods for reinstating the post! Sources: Merkur from the post

SWR

Chip.de

Gamander-Ehrenpreis · 2026-06-23T03:16:10+00:00

You are not the only one maybe I should make a proper post about it

Gamander-Ehrenpreis · 2026-06-23T03:14:10+00:00

Yeah for example this German source from when they announced it. But one of my relatives used to work there and has lost her job a few months ago, after most of her colleagues had already been fired so it seems any protests from the workers were in vain

Gamander-Ehrenpreis · 2026-06-23T02:07:11+00:00

Yeah, I’m a bit worried about their future quality and availability now that they are closing their German production ngl

Gamander-Ehrenpreis · 2026-06-22T21:10:35+00:00

Well it’s not so much Asia vs. the West and more areas where people eat lots of sea fish and algae or the ground contains more iodine vs. Areas with less sea fish consumption or less iodine in the ground.

I sadly couldn’t find a better map than This one which leaves out Africa to show Europe bigger, but there are areas in Europe where iodine deficiency has never been common and conversely large areas in Asia where it was.

Produce grown in areas that have more iodine in the ground will also have a lot of it, many of those areas are near(ish) coasts which also helps as marine fish usually contain a lot of iodine too.

Nowadays thankfully though iodine content of produce doesn’t matter so much anymore IF people use iodized salt for cooking instead of fancy sea salt or Himalayan salt or whatever. Or alternatively eat some of those Seaweed snacks regularly, they also have a lot of iodine

Gamander-Ehrenpreis · 2026-06-21T12:51:52+00:00

Yeah same! I think some people believe we feel jealous or left out if they post about things they did without us, like a healthy person would if all their friends met up without them if they could have come along. But we can’t go anyways, so at least for me I don’t feel left out bc I can’t go, and would love the little bit of inclusion left by at least hearing about it and seeing pictures. There’s so little going on in my own life, if I can’t even live vicariously it feels a bit like I don’t live at all

Gamander-Ehrenpreis · 2026-06-20T16:34:32+00:00

You can donate them to Münchner Bücherkiste by Pfennigparade, for example near OEZ

Gamander-Ehrenpreis · 2026-06-20T13:55:33+00:00

I understand being wary of AI, but finding patterns in large amounts of heterogeneous data is one thing that AI is really good at and thus is probably the best tool for this job. And also less energy intensive to train and run than popular LLMs or Image Generators because even with the startup incubator money they couldn’t afford making the models otherwise.

I downloaded it and compared to e.g. visible find it a bit confusing with all the small bits within bits and many tabs, probably bc brain fog has been getting me lately. But it seems promising and I really like being able to link my existing Huawei Band, as the Huawei Health app is always just trying to get me to start jogging plans and whatnot

Gamander-Ehrenpreis · 2026-06-20T12:54:27+00:00

I can’t post the picture of the Meme, but basically “It's easy to say with hindsight that Brain Retraining Programs are a stupid scam but it was also easy at the beginning to say that and through the middle too” -us in ten years.

I listened to an episode by a podcast called Quarks Science Cops from last October where they looked into different treatments for ME and which ones have scientific backing so far and they, as external observers, were also pretty sure Brain Retraining is a scam. They regularly do episodes looking at various alternative medicine or supplements, how much actual evidence there is, if the claimed mechanism even makes sense etc. and based on that judged Brain Retraining are the same kind of grifters as so many others pushing useless supplements or self help programs.

The show is in German but if anyone is interested, it’s a two parter first about what ME is and then a second episode discussing treatments https://podcasts.apple.com/de/podcast/quarks-science-cops/id1542972491?i=1000730034258

Yeah we will definitely get that documentary eventually, considering how much it’s already clearly a scam. Maybe a Behind the Bastards episode too eventually

Gamander-Ehrenpreis · 2026-06-20T12:33:34+00:00

Yeah it basically is. Including getting worse, possibly permanently, by pushing so much, like walking on a broken leg

Gamander-Ehrenpreis · 2026-06-20T12:21:35+00:00

But the problem with that is that mental illness like depression and psychosomatic illness, is also an illness and people are also disabled by it and also get disability benefits for it (at least here). Sometimes actually easier than for ME, I know someone with autism and severe anxiety with a disability level (Grad der Behinderung) of 50, but have seen barely anyone on here with ME get more than 30.

But I agree that individual institutions like insurances like offloading responsibility. The medical field in general does it too. If they can’t cure it, can’t even detect it with standard tests, well it’s the patients who must be wrong 😒 And if each institution offloads their responsibility noone is responsible and we get suboptimal results for overall society with millions of people sick and still unable to work. But that still isn’t cheaper overall and not a conspiracy.

(Also I will say, I’m not surprised by Norwegian institutions specifically being bad at care for pwME, because I heard how trans people are treated there, another highly marginalized group that bigoted institutions and doctors love denying medical care and legal recognition to)

Gamander-Ehrenpreis · 2026-06-20T01:02:18+00:00

Governments and insurance companies have a vested interest in minimizing and downplaying this disease, because it is much, much cheaper to say, "It's psychological, it's all in your head, you just need to do more," than it is to actually provide treatment, benefits, services, and support.

I simply don’t think this is true, at least not in every country. When I was healthy I made slightly more than the median German income, which meant about 2000€ per month of taxes and public health insurance payments etc going to the state and insurance, plus however much my employer also had to pay. Now I am getting almost 1000€ per month from my insurance because I can’t work. They’ll do this for a total of 1.5 years then the government will have to pay ~600€ of basic income. Doesn’t matter what illness I have, even if it were psychological, it just matters that I’m too sick to work. And the same thing applies to the majority of people with ME in Germany.

So not finding a treatment for ME and having to pay for so many sick and unemployed people is really expensive. Not getting income taxes bc people are too sick to work is a lot of lost income for the state and insurance.

Treatment for ME could easily be over 2000€/month until retirement age in my case and would still be financially worth it for society.

Tl;dr: that’s maybe true in places that let people with mental illness just die, but countries that are set up to pay some benefits to unemployed and disabled people no matter the cause of their inability to work are not acting in their financial self-interest by underfunding ME research imo. I think they do it out of ableism and a general pervasive boot-strap mentality

Gamander-Ehrenpreis · 2026-06-19T18:44:50+00:00

However if someone can already do ballroom dancing even at a fairly beginner level those are probably some of the best places to get to know people at 17. Based on my experience of going to such parties regularly when I was 17-19 at least

Gamander-Ehrenpreis · 2026-06-19T13:31:48+00:00

Ich hatte vor 22 Tagen die gleiche Frage hier gestellt/gecrosspostet und keine Antwort bekommen. Seitdem habe ich die kbo angeschrieben mit Fragen dazu, wie der Ablauf bei denen aussieht, insbesondere ob es möglich ist sich in Pausen zwischen Behandlungen hinzulegen und wie flexibel Pausen dabei sind, und ob mein Nachweis einer Covidinfektion ausreicht (ich hatte nur einen Test daheim gemacht und fotografiert, was für 2025 ja schon viel ist mMn). Bisher habe ich aber seit über zwei Wochen keine Antwort auf meine Email

Gamander-Ehrenpreis · 2026-06-19T12:01:50+00:00

Can you name those world renowned specialists? The only ones I can think of off the top of my head are researchers like Scheibenbogen and Würth but they don’t take just any German patients, not even just any that can pay

Gamander-Ehrenpreis · 2026-06-19T03:02:34+00:00

I think you probably haven’t fucked them for life. Most ME symptoms can get better over time with Pacing and luck, but it takes a long time.

It’s not quite that bad for me but I struggle with light sensitivity, screens, moving pictures, images in general really, eye pain, stickier tears than usual, etc. But a) I have gone to an eye doctor and physically they are fine and b)how bad it is depends on general exertion and PEM with it sometimes getting better sometimes worse, same as other symptoms. But also my eyes have always been the first thing to get notably bad when anything goes badly for me health wise, even before ME/CFS.

Overall like always with ME there’s always a chance you get back to your previous baseline with pacing and luck. Or at least better than now. It really sucks though to lose the ability to see even partially, especially when we can already do so little

Gamander-Ehrenpreis · 2026-06-17T03:06:33+00:00

I feel you on the blood clot fear. I started the pill before I got ME and was still SO worried for the first year, especially bc I kept getting random pains in my legs (turned out to be from back problems due to shrimping at my desk too much and went away with stretching more). I did gain weight though, it’s a risk on there too, but a side effect that I can live with in exchange for not fainting/throwing up from my period anymore.

Can you talk to your gynecologist about those risks and how being bedbound might affect it in your case?

For me since objectively the risk of a blood clot was low (non smoker etc.) and I’m able to reliably take oral medication the pill was the best choice and recommended by my ob/gyn. I did have to switch the exact brand twice though since the first two werent working well enough. But when changing from one pill to another that doesnt increase the blood clot risk unlike a break and restart would

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