I thought this is quite interesting. I'm sure it's easy for most to translate the page to your mother tongue.

Link to the thread: https://www.reddit.com/r/medizin/comments/1tk8j6y/ambulante_hausärztliche_versorgung_und_die/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

My highlights

>In my current job, I have almost no contact with ME/CFS, but I do keep a passing eye on the latest discussions and research, which means I’m constantly seeing posts from ME/CFS activists on social media. In the vast majority of cases, these posts strike me as unpleasant because they expect general practitioners to provide some kind of special treatment and miracle cure with off-label medication (often without a solid diagnosis) and any dissent is met with harassment, as shown in the link.

>I find the Bubble really difficult. Patients are often incredibly demanding, wanting every possible somatic test, even though there are no somatic findings. And all this drama about “No, it’s not psychological. We’re not crazy” really gets on my nerves. First of all, mental illnesses are real and can be just as distressing, and second, from a somatic perspective, there’s no difference between moderate depression + somatization disorder and MECFS.

>Then please explain to me how you distinguish moderate depression and somatoform disorder from MECFS on a purely physical level. Spending a lot of time in bed, running to the doctor over every little thing, complaining about hypersensitivity, yet still being glued to your phone all the time—that sounds more like an emotional issue to me xD

>Lol, in most cases, good sleep hygiene would be enough. An iron deficiency or hypothyroidism (if that's even what it is) can be treated relatively easily—you don't need an endocrinologist for that; I can handle it as your humble family doctor.

>As far as I know (*feel free to correct me), the most effective treatment for such syndromes is psychotherapy. I find that very insightful.

>What is an ME/CFS emergency? Bed rest syndrome?

Some of the wilder comments have already been deleted as well as all and any comments from patients trying to chime in. Anyways, this is what the average German doctor thinks.

Anyone else on here looking forward to the new 007 game first light?

I feel like I have it. I have muscle weakness, wobbly legs hard to walk at times, extreme sensitivity to light and just weird vision swirls idk to describe it, I tremble, shake, hard to sit still without anxiety, forehead headaches, etc…

Had a horrible childhood, just traumatized and abused day fucking one. Went through severe depression and whatever else and just constant neglect. I've been miserable most of my entire life. Acquired this illness and now my hell is worse. I'm not going to kill myself yet or anything, but I've been thinking about it every single day. I think this was given to me on purpose just to torment me. Don't ask me to go to therapy please, all meds and therapy I've been given have made me worse, I am resistant to meds and therapy. I'm autistic.

I don't think I'm a victim, but I feel like I'm a victim to my circumstances. People are just given shitty hands and shitty genetics, we never got to pick. It's frustrating and awful. I hate this society and how we treat sick people. How we throw away art and anything enjoyable because it's not a "necessity". Why is there a price on water and food? It's so ridiculous. Im watching the world unfold from my fucking phone because I'm too sick to do anything else.

Publication details

Joel Tuomaala et al, Association between post-COVID-19 neuropsychiatric symptoms and persistent glial activation in the limbic system: a TSPO PET study, Journal of Neurology (2026). DOI: 10.1007/s00415-026-13842-w

4 and a half years ago, covid left me with a permanent headache that hasn’t gone away in all that time and has only gotten worse. One of the first things I noticed with this headache was if I tried to use a computer or tried to play video games, the constant headache would flare up extremely badly within minutes, cause speech problems, dizziness, limb weakness, difficulty understanding words, and just the extreme head pain increase happening so suddenly was all extremely scary. This issue took away my biggest passion, video games, as well as lost me my career in the tech industry which was all computer work. To this day if I try to use a computer or play any games, I still get the same familiar sensation that I know cases all those extreme stroke-like issues.

Over the last 4.5 years, I’ve hung onto several things to keep me going, looked forward to when I would be able to enjoy those things once again when all of this was behind me. Before all of this happened I was a huge gamer, I have been all my life, and in the years prior to COVID disabling me in my early 30s, my main game was Destiny 2. Well this week the devs announced they would be shutting down active development, it will be the end of service for the game. The news really hit me hard, even though I know games aren’t going to be developed and supported forever, it was one of the main things I’d always tell myself, “once they figure this out, I’m going to have so much Destiny 2 to catch up on.” I’ve watched several expansions of the game pass by over the years, but still I held onto hope that one day I could come back and enjoy the game from wherever it was at the time.

I guess the news of the game shutting down really puts it into perspective for me that time is passing me by, the world is passing me by, life is passing me by. Many of the things I loved before this condition started will be long gone if or when I’m recovered or at least treated. I guess it was an awful reminder how temporary everything is and how I am unable to participate in the things that made me who I am (or who I was I guess), and no matter how much I hold onto those things, it’s like they will be gone before I can come back to them. I know the game seems like such a small thing, I mean it’s just a video game, but it was something I loved so much and the shutting down highlights what this condition and this society has taken from me and how much in my life is just passing me by. My nephew was born at the start of my condition during the height of COVID, he’s 4 now and he doesn’t even hardly know me, every time I see him he’s a different person because of how much he’s changed and grown. I saw him when he was born and the next time I saw him he was talking.

I’m getting closer and closer to 40 now and I didn’t even really get much of my 30s. How much more of my life will this condition steal? How much longer will our society continue to ignore us?

It is about cfs. It is in japanese.

Hey everyone.

I’ve been dealing with Long COVID since around early 2023 after COVID + influenza infection, and I wanted to ask if anyone else has experienced this on LDN.

My main symptoms over the last 3+ years have been:

Severe fatigue / post-exertional malaise (PEM)

POTS-like symptoms and autonomic dysfunction

Brain fog

Neuroinflammation feeling / pressure in head

Sensory overstimulation

Poor stress tolerance

Sleep issues

Exercise intolerance

Random anxiety/adrenaline feelings

Cognitive slowing and reduced concentration

Digestive issues/gas at times

Things I’ve tried over time include:

Aggressive pacing and rest

Sun exposure / vitamin D optimization

Electrolytes and hydration

Dietary changes focused on anti-inflammatory foods

Supplements for mitochondrial support

Magnesium glycinate

Probiotics/fermented foods

Various vitamins/minerals and natural antiviral approaches

Intermittent fasting experiments

Nervous system calming techniques

Now I finally decided to try LDN.

What I’m currently doing:

I dilute a 1.5 mg LDN capsule into 100 ml water, then use a syringe to take only 1 ml, so if my math is correct that should be around 0.015 mg (15 mcg) per dose — basically an ultra-microdose.

I take it around 10 minutes after dinner.

It’s been about 4–5 days now.

The strange thing is: shortly after taking it, I get a mild “high” or relaxed feeling, almost like I had a small amount of alcohol (like 30–60 ml whiskey/vodka). It’s not extreme, but noticeable.

I also feel this weird relaxing sensation in the center of my forehead / between the eyes area. Hard to explain, but almost like a calming pressure or warmth there. Weirdly, it reminds me of the feeling I used to get years ago when drinking alcohol before getting COVID.

Part of me feels like, “Oh wow, maybe this is doing something good,” and another part of me wonders if this means it’s not agreeing with me.

So my questions are:

Has anyone else experienced this on LDN, especially at ultra low doses?

Is this considered a good sign, bad sign, or just a temporary adjustment effect?

Did this sensation go away over time?

Does this mean my nervous system/opioid receptors are extremely sensitive?

Is it a bad idea that part of me feels like taking more because of the calming feeling? And btw i experience no other change or benefits so far with ldn other than this calming feeling so far..i know too early to judge

Would really appreciate hearing from anyone who has gone through something similar.

question above...

Hello, the following is my wife's post, but she can't use her account.

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I was released from the psych ward a few days ago, as they found nothing mentally wrong with me. I was fed psych meds and I took 1-3 benzos daily to get through the exertion they were pushing me to. I met with a neurophysicist doctor specialized in LC/CFS and he diagnosed me with post viral fatigue. He just said to pace, don't exert myself and that maybe at some point the pregnancy will help. I got these prescriptions from the ward:

5mg lexapro (ssri)
15mg oxazepam (benzo)
25mg quetiapine (anti-psychotic, off label anxiety/insomnia med)
propranolol

I was in a very bad crash, completely bedbound, peeing next to bed, barely eating, that's why they took me. The benzos made me able to walk again a bit. Now that I'm home I'm trying to avoid them but I notice the PEM coming back.

My worst symptom next to crushing fatigue is an extreme feeling of all encompassing suffering, in my entire body. It's worse than anxiety or panic. Best I can describe it as raw suffering. Before hospitalization I would cry, yell and convulse for hours in extreme suffering. My body starts twitching as soon as it comes on. The only thing that takes the edge off it is benzos.

Yesterday I got through the day with half a pill but today I had to take 2 already, before 12pm. I know incredibly well how addictive they are and that's why I want to quit them so badly. I just don't know what is happening to me anymore. How long does this doom/suffering last? I only have a bottle of 30 pills, not enough for long term use and I probably can't get a renewed prescription as I'm pregnant. It's the only thing that helps. I will literally convulse on the bed, almost unconscious without them, from the PEM. I want to die when that doom hits.

Please give me some hope people. How long will this last? Did I prolong my crash with the forced hospital stay? What medicine can I take to come out of it? I'm so desperate, I'd do anything for this to stop. I'm literally "sleeping" 18-20hrs a day. 9-10hrs night sleep and just laying with eyes closed. With eyes open I only use my phone a bit or look out the window. I only walk to bathroom and lay flat 24hrs per day. I'm taking the Lexapro in the am and quetiapine in the pm as it calms anxiety but it puts me into a coma. I also take H1+H2 antihistamines as soon as I wake up, but they only help sometimes. I'm scared to try the propranolol as I'm not sure if it works for mcas type. The doctor thought it might not be mcas but I read this kind of doom is common in mcas. Please please help.

Is exercise intolerance and the severe, persistent inflammation and pain caused by the famous microclot hypothesis, or is COVID causing mitochondrial dysfunction instead? Will we never really get a chance to understand what’s happening in our bodies? Other than the D-dimer test, is there any important method you know of that could give clues about whether microclots are present? I don’t think such tests are done in every country, though…

Before now, my biggest long covid symptom was insomnia. I was able to get that under control with loratadine/ famotidine and ashwaganda.

Lately I've been trying to exercise just a bit more. Has anyone noticed air hunger / feel like they can't catch their breath after a certain threshold of activity? I am close to hyperventilating, but I think my lungs are fine, so I don't think it is asthma. I can go about my day normally even walk up and down short stairs without an issue. If I cross some threshold of activity, I immediately have shortness of breath / air hunger. If I stay below the magic threshold, then I don't have any issues. I don't believe this is deconditioning.

I guess I should see a doctor now, but I'm wondering if there is any knowledge or advise about this symptom / condition.

Hey all. I’ve been ill since 2023 after EBV and multiple Covid infections. I was wondering how many others suffer with severe MCAS and how they’re coping? I think it drives most of my symptoms and it has got progressively worse for me the last year. I’m on antihistamines and started a mast cell stabiliser, which slightly helps, but not massively. Whenever I eat something slightly high in histamine, I still have awful reactions. Apart from that, I don’t really know what I’m supposed to do. I just wish there was more research into it as I feel like the mast cells might be playing a key role.