Tobi

@cstroeckw Would you wait the 2 years period before trying risky meds? I am in month 10 and LDN helped me and later worsened me from 3h to 30mins screentime and now I don't know what to do.

I have said this before, but it clearly needs repeating. People understandably prefer to see themselves as exceptions rather than part of the central tendency of a distribution. In ME/CFS there is heterogeneity, fluctuation in severity, and likely biological subtypes. There is also a temporal dimension. A significant proportion of patients with ME/CFS-like illness improve or even recover within the first one to two years. Some studies suggest this may even be the majority. That creates a serious attribution problem. If you try a treatment during that window and improve, the improvement may reflect the natural history of the illness rather than the intervention itself. This does not mean no treatment works. It means temporal association is not proof of causation. Ignoring regression to the mean and base rates undermines serious progress.

@cstroeckw Currently is the LotR audio book the only thing which gives me energy to go on. Therefore I really felt that one haha

My long-term caregiver Felda is literally the only thing carrying my weak, deconditioned and hurting ass from day to day. And for many, many years now. The level of compassion, integrity and loyalty she shows is truly Samwise Gamgee level stuff.

@Farbtastisch Stark!! Nehme den Saft weil 30mg viel zu viel ist...

Mal ein kurzer Ausflug zu Dextromethorphan, dank Tobi 👇🏼. Wird in D in 30mg Kapseln vertrieben. Einigen hilft es wohl mit PEM. Die wissenschaftliche Grundlage sind sowohl Scheibenbogen/Wirth als auch Bateman Horne Center. #mecfs #longcovid x.com/MeCfs_dude/sta…

Gibt es (sehr) schwere ME/CFS Patienten, die GLP-1 Agonisten in Ultra Low Dose spritzen oder gespritzt haben? Speziell interessant: normalgewichtig oder untergewichtig, mit vorab starkem Muskelabbau. Hat das jemand ausprobiert und wie waren Verträglichkeit und Effekt? 🙏💙

@anna_reise87030 @AntoineMECFS Thanks for your answer! I am new in this community and I will be sedated for transporting. Do you know if propofol or Benzo IV are common? Thanks!!!

@MeCfs_dude @AntoineMECFS Unfortunately no😔just have seen it done by some folks of our community

Getting moved in 11 days to my partner's parents house because we are moving out on Feb 21, and then will be re-moved out to our new flat 4 days later. Biggest trip will be in an ambulance and lying down all the time but I can already see the big crash from this #MECFS

@anna_reise87030 @AntoineMECFS Do you have experience with sedation for medical transport? 🤞

@AntoineMECFS 🫂will you be sedated?

@cstroeckw It's ridiculous

@MeCfs_dude I asked at least 20 people over the years to set something up, and nobody gave a flying f*, of course. I haven’t been able to arrange it for myself, despite trying hard.

Look, these are preliminary findings. They are not replicated, and there is currently no reliable way to determine whether they represent genuinely new disease-domain features or methodological artifacts. Blah, blah, blah. Fine. But I have been saying this for over 12 years: ME/CFS is predominantly a neurological disease. And if it were investigated properly, beyond standard post-mortem protocols and superficial conceptual frameworks, researchers would find extensive dysfunction and, yes, very likely structural damage as well. I do not care whether that fits existing definitions. The way neurologists and the broader medical establishment have handled ME/CFS is one of the greatest failures of modern medicine. It may ultimately prove to be the greatest. I am one of the so-called “end-stage” patients. I am living proof of what happens when a severe neurological disease is ignored, minimized, and misclassified for decades. If you are a very severe patient, you do not need anyone to tell you that something is profoundly wrong with your brain. I feel deep respect and grief for the people who donated their brains to help others. Not only because they died, people die from many diseases, but because, with an extremely high likelihood, they were abused, dismissed, or neglected by the very physicians and systems they turned to for help, long before their brains ended up as slides in a PowerPoint presentation.

@Biwe94 @neurostingl Lifegoals!

Letzten Sonntag bin ich das erste Mal seit knapp 10 Jahren wieder geflogen. Zwar nur eine kurze Strecke, aber immerhin. Das ist alles möglich, dank der Hilfe von @neurostingl und interessierten Hausärzten, die mit mir Zusammenarbeiten wollten. 💪 #MECFS

@JackHadfield14 Thank you Jack. I really appreciate your detailed answer. Struggling a lot lately and that's what I need to hear....

I think there will be big steps forward in the next 2-3 years that have never been done in the prior 50. But ofc can’t guarantee it, I just see stuff that seems like it has a tangible ability to scale continuously without a single fail point like a clinical trial in the next few years + advancements in AI I think will be game changing. Predictive modeling of immune function etc So I’m considerably more hopeful for 2027-2029 vs what I was for 2021-2024, as the only hope back then was BC007 and ampligen basically, which both relied on single end points that failed, they weren’t projects that could continue regardless of immediate outcomes. 2026 I think will be a year of building infrastructure for this stuff though, so I don’t expect 2026 to be a year standard of care is improved. But if serious infrastructure build out can be done in this year, that’s worth more than every year prior even if it didn’t immediately improve care.

Once we’ve solved ME/CFS and Long Covid, I think I’m going to take a multi year break from ever reading a research article again. Found myself doing some light reading about SYK & LYN gene expressions at 7am this morning and realised it’s all I’ve done everyday since 2021 😂

@I_need_a_razor What happened after this month?

Can we figure out why this happens? How after 2+ years of mod/severe I had almost a month of being mild and feeling near normal? These questions haunt me. There is undoubtedly a physiological reason why this happens. We gotta figure this out. It’s 2026 for fuck sake.

How can someone have a remission after years of being sick and that remission lasts years? What other disease can be so disabling you are bedridden to completely healthy again after years of being sick? Yes I know it’s rare but that fact it can and has happened is remarkable…..

@markeology I would call it premium pacing

@MeCfs_dude I'm gonna be in bed for the next 2½ hours until I have to take my daughter to the doctor, and I'd much rather look at pet pics than pretty much anything happening in the world at the moment.

Let's see some cute pet pics. Bonus points if they have a cute name. Here's my sweet Lucy, a purebred Fox Face Pomeranian.

@cstroeckw Last time I cried I had the biggest crash ever and I wasn't able to talk anymore. Since that I am pretty sure that my mind is in some kind of safety mode. I don't have depressive thoughts anymore, but this is very unhealthy for sure.

Even for severe ME/CFS patients, years bedridden in darkness, it is difficult to fully grasp how catastrophic the situation truly is. The illness itself, and both conscious and subconscious mechanisms, limit how much reality we can process. Sustained anger is physiologically unaffordable, therefore learning to meet it in fragments is important: acknowledge a piece, then slowly transmute it into something constructive. Few groups have experienced as much systemic and personal betrayal as ME/CFS patients, so that's a profound and long-term challenge for most patients.

Gestern hätte @sarah_buckel Geburtstag gehabt. Statt Kuchen, Kerzen und Nachrichten gibt es Leere. Sie wird schmerzlich vermisst – und sie ist nicht vergessen. Und sie ist nicht allein. Samuel aus Österreich ist vorgestern an seinem 22. Geburtstag denselben Weg gegangen. Vanessa aus der Schweiz, Mitte 30, auch. Wie viele noch, erfahren wir gar nicht, denn viele sterben allein, still. Freitod weil es keine Hilfe gab! Ein Muster. Wie viele von uns müssen noch so früh sterben, @bmftr_bund @BMG_Bund ? Wie viele, @DoroBaer , @ninawarken ? Wie viele junge Menschen müssen noch den begleiteten Tod wählen, weil eine „Forschungsdekade“ angekündigt wird – aber keine schnelle, konkrete Handlung folgt? Ich weiß selbst, dass Medikamentenentwicklung Jahre dauert. Aber wenn man nicht wirklich anfängt, werden aus Jahren Jahrzehnte. Und genau da stehen wir: seit über 50 Jahren. Mehr Druck @Karl_Lauterbach ! Es gibt interessante Wirkstoffkandidaten. Es gibt Hypothesen, Biomarker, Ansätze. Was fehlt, ist Tempo. Mut. Priorität. Geld. Verantwortung. @SPRIND Während ihr diskutiert, bereiten die Nächsten gerade ihren Freitod vor. Das sind Kinder. Das sind Eltern. Das sind Menschen, die leben wollten. Niemand sollte so sterben, nur weil ein System zu langsam ist, um Leben zu retten. #WirSindSarah #WirSindSamuel #WirSindVanessa #LearnAboutME #MECFS #1von40000000

@anna_reise87030 @Gmwetz In theory it helps against brain inflammation, which seems to be the trigger for most of our symptoms.

@MeCfs_dude @Gmwetz Do you have a hypothesis why?

Who takes Dextromethorphan (DXM) for Long COVID or ME ? For how long do you take it already ? What is your dose ? What gets better with it?

@Gmwetz Ratiopharm

@MeCfs_dude Thx ! Which brand do you use ?

@Gmwetz 2x10mg per day since 4 months. Helped immediately to stabilize myself and stop my downfall. And I think it increases my pem threshold.

@MeCfs_dude I was just double checking it. Brainfog 😵‍💫 What’s your daily dose ? And for how long already ?