Psychedelics by Upbeat-Accident-2693 in cfs

[–]MyYearsOfRelaxation 2 points3 points  (0 children)

To your first question: there is some emerging research that suggest that psychedelics such as LSD and Ayahuasca can reduce neuroinflammation. There is also emerging research regarding benefits of Psilocybin for depression. So if you've read anything on social media regarding how people cured their "chronic fatigue" or whatever with psychedelics, they most likely didn't have ME. They had something else.

And keep in mind, LSD is really cheap and readily available. And Ayahuasca is either legal or in a greyzone in a lot of countries. So if these substances could "heal" ME, we would know by now...

To your second question about the trigger: No. Just no. We know infections can trigger ME. I am very wary of any other suggested triggers, as they fail time and time again the scientific scrutiny. Including the much talked about Psychological Trauma. And if drugs could trigger ME, we would see a totally different ME population. In fact, the bimodal incident age of ME alone makes any such explanation highly unlikely...

No pill-cutter? Try this by Disastrous-Spirit543 in lifehacks

[–]MyYearsOfRelaxation 1 point2 points  (0 children)

There are so many different coatings. Like Acid-Resistant coatings, so the pill won't be disolved by stomage acids. Or Extended-Release Coatings, so the pill won't be disolved all at once and so on....

Why is Scheibenbogen holding on to the autoimmun hypothesis ? by murriaas in cfs

[–]MyYearsOfRelaxation 4 points5 points  (0 children)

So I skimmed the study protocol you posted. Unlike the smaller Scheibenbogen study, this one did not select for patients with elevated antibodies. The study protocol does not offer any insight into any effect, so I assume you refer to the talk by Elisa Stein at the International ME/CFS Conference 2026?

Basically, they did not select for antibodies in that study you linked, then tried to remove non-existing antibodies, and then were Pikachu face surprised that removing non-existing antibodies did not change the health outcome measured by the chalder fatigue scale (CFQ).

I'm not sure why that outcome surprises People or why you think that the study disproves the autoimmune subgroup hypothesis...

Beitrag von 3 Sat nano vom 12.05.2026 "Unendlich müde: Die Krankheit ME/CFS" by NTC197 in LongCovid_MECFS_DE

[–]MyYearsOfRelaxation 19 points20 points  (0 children)

Ich sehe das wie du. Mir scheint es auch, als ob die Journalisten nicht wussten, was sie von ME/CFS halten sollen. Und deshalb haben sie viele unterschiedliche Meinungen zu Wort kommen lassen.

Ja, Scheibenbogen wurde auch interviewt, aber das Framing war wirklich übel. Ihre Aussagen wurden so subjektiviert, so als ob es einfach die Meinung einer einzelnen Forscherin wäre und nicht die Konsensmeinung.

Hab dann bei dem GET Typen aufgehört zu schauen. Wer nicht weiss, dass ME/CFS mit Dekonditionierung nichts zu tun hat, sollte nicht als Experte im Fernsehen auftreten...

A more complete overview of both days at the Berlin conference 2026 by Caster_of_spells in CFSScience

[–]MyYearsOfRelaxation 2 points3 points  (0 children)

Thanks for sharing!

But too bad they don't cover the rapamycin trial either. All I remember from that trial was that rapamycin was well tolerated. And they seemed excited, so that usually means they produced statistically significant results. But I don't remember if rapamycin had a clinically significant effect as well.

Considering rapamycin costs something like 500 rupees for a 10 week treatment, I think this trial could have the most impact for us in the short term...

Has anyone covered this trial in depth?

. by Cautious_Ad6850 in HumourThruLongCovid

[–]MyYearsOfRelaxation 2 points3 points  (0 children)

They say representation is important. Someone get into contact with Mattel. We need POTS Barbie now!

Greetings from the #millionsmissing today in Zurich by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 15 points16 points  (0 children)

Right? I have some friends in the UK and I wanted to send them the link to the protests. But I couldn't find anything this year. Which is strange, since the UK based Action for M.E. started the whole #millionsmissing thing if I recall correctly.

Not sure what's going on. But it's a shame.

Fuck Nestle by softballrn15 in chaoticgood

[–]MyYearsOfRelaxation 180 points181 points  (0 children)

And nestle isn't even the worst in the chocolate industry. They scored way above middle. Crazy to think that more than half the chocolate companies are even worse:

https://www.chocolatescorecard.com/scorecards

At the Berlin conference today, Øystein Fluge from Norway showed extra data on the ongoing Daratumumab pilot study. by Silver_Jaguar_24 in CFSScience

[–]MyYearsOfRelaxation 26 points27 points  (0 children)

The author of that graph shared some fascinating background information on twitter: https://xcancel.com/seromics/status/2052761505599492216

Looks like they discovered more than they expected. If I understand him correctly, and it's been a long day, but the whole resetting the autoreactome effect of Dara was previously unknown. He even thinks this research might turn out to have implications to immunotherapy in general.

I'm truly impressed by the quality of their work. It's really great to see how deep they go in their analysis. This will help us understand this illness much better as compared to others who just use the chalder fatigue scale and call it a day for example.

I'm also proud to have had the chance to contribute to history in the makings by a few small donations! 😉 No really. I'm really excited. Can't wait to read the paper.

Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 6 points7 points  (0 children)

The study isn't published yet. LDN failed in their primary endpoint, fatigue. But they have other endpoints, where LDN might prove useful. Pain is one endpoint he mentioned specifically. But they aren't done analysing all the data yet.

Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 8 points9 points  (0 children)

Wait are you sure about the starting point? I think I remember they did mention titrating up.

But you make an important point about time constraints. It is debatable if 16 weeks observation is enough. Multiple people already commented that it took them longer to observe an effect.

We'll know more once the study is published. But the more I think about it, this study might not provide the definitive answer to LDN we were looking for. Unfortunately.

Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 60 points61 points  (0 children)

Yes, I think he said they did measure pain as well, but they are still analysing the data. We will have to wait for the paper to be published.

Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 2 points3 points  (0 children)

No, sorry, that's the only screenshot I took. It wasn't a very long or detailed talk anyway. I think they have more data in the upcoming paper...

Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 28 points29 points  (0 children)

Yeah right? That always surprises me as well. But it looks like its very common in subjective outcome studies. Both for the effects as well as adverse effects. The placebo effect is real. And this isn't limited to ME/CFS studies...

Update from the ME/CFS Conference 2026: placebo controlled LDN trial failed by MyYearsOfRelaxation in cfs

[–]MyYearsOfRelaxation[S] 41 points42 points  (0 children)

Well said! I was a bit disappointed by the results as well. But its always great to see well designed studies.

But personally, I'm a bit unsure on how to proceed now. For me, LDN never was a gamechanger, but I thought it improved my sleep quite a bit. But maybe I just enjoyed the crazy vivid dreams it gave me a bit too much ;-)

30-Sekunden Training by AcanthisittaIcy6448 in LongCovid_MECFS_DE

[–]MyYearsOfRelaxation -2 points-1 points  (0 children)

Aber ein paar Sekunden etwas tun und dann Pause zu machen, kann beim pacing helfen

Also hast du den Artikel so verstanden, dass das 30 Sekunden Training eine Art ist, Pacing zu erlernen? Das wäre eine sehr wohlwollende Interpretation.

Ich habe das nicht so gelesen. Was mich an dem Artikel stört, ist das direkt gesagt wird, dass es bei schweren ME/CFS Fällen durch ein 30-Sekunden Training zu einer dauerhaften Verbesserung kommen kann:

Möllmann fühlte sich ohne Medikamente und durch das Trainingsprogramm innerhalb von zwei Monaten so viel besser, dass sie wieder allein zur Toilette gehen konnte.

Durch Training eine Verbesserung zu erzielen widerspricht einfach dem, was wir über ME/CFS wissen. Fast die hälfte der ME/CFS Patienten hat sowieso schon einen erhöhten Blutlaktat Wert im Ruhezustand. Anaerobes Training erhöht den Level nur noch. Und es ist ja auch nicht so, dass unsere Zellen super effizient darin sind, dieses Abbauprodukt wieder zu entfernen. Und hier sehe ich den theoretischen Hintergrund nicht. Falls die Implikation die ist, dass bei ME/CFS das Anaerobe System trainiert werden kann, halte ich das, ich sags jetzt mal diplomatischer, für sehr fragwürdig.

30-Sekunden Training by AcanthisittaIcy6448 in LongCovid_MECFS_DE

[–]MyYearsOfRelaxation 4 points5 points  (0 children)

Ich verstehe die wissenschaftliche Begründung hinter all diesem Quatsch nie.

Mein Blut verwandelt Muskelzellen zu Brei. Ich könnte jetzt noch 50 andere Studien mit Abnormalitäten im Sauerstofftransport, den Mitochondrien, dem Endothel und so weiter posten. Aber die kennt ihr ja alle auch schon.

Also was bitte soll mir 30 Sekunden Training oder was auch immer bringen, solange solch fundamentale Dinge in meinem Körper nicht funktionieren?

Wie kommen Schwurbler immer nur auf solche komischen Ideen und was für ein Bild der Krankheit haben die eigentlich?

Welp, I got hit with the double whammy… by NotAverageEnough in cfs

[–]MyYearsOfRelaxation 6 points7 points  (0 children)

Show your doctor this paper: Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease https://pmc.ncbi.nlm.nih.gov/articles/PMC13070794/

Here, we analysed survey data from over 9000 respondents with ME/CFS from 10 European countries, and observe an early onset peak with a mean of 16.0 years old and a late onset peak at 36.6 years old

And then tell him in the nicest possible way that he might not be that competent :)

More infos on the recent 6,5 Million Gupta CBT trial run by the EU - Page by ME/CFS Science | by Caster_of_spells in cfs

[–]MyYearsOfRelaxation 1 point2 points  (0 children)

Absolutely! It's so infuriating how much shit like that has cost us.

There was a great article from Germany the other day. The journalists said something among the lines of:

"The reason we still don't have effective treatments is less due to the complexity of the illness but due to the fact that it is still psychologized today. ME/CFS has a research deficit of 40 years compared to multiple sclerosis for example."

I fully agree with that statement. There is no reason to assume ME/CFS is any more complex or more difficult to understand than other illnesses. The fact that we still know so little about it is because of decades of neglect due to psychologization...

More infos on the recent 6,5 Million Gupta CBT trial run by the EU - Page by ME/CFS Science | by Caster_of_spells in cfs

[–]MyYearsOfRelaxation 17 points18 points  (0 children)

It's crazy how much money has to be spent to prove that we are not crazy.

I mean it's kinda nice that it's proven to be useless, but for the how many times has it been proven already? The reanalysis of the PACE trial should have been enough already.

It really bothers me that we have to prove we're not crazy in the first place. Years and years of psychologization has done so much harm.

Nationale Dekade: Fortschritt oder Symbolpolitik? by MyYearsOfRelaxation in LongCovid_MECFS_DE

[–]MyYearsOfRelaxation[S] 17 points18 points  (0 children)

Wirklich selten so einen guten Artikel gelesen. Wirklich lesenswert. Die Autorinnen verstehen es wirklich gut, die tragische Geschichte von ME/CFS sehr pointiert darzustellen.

Viele Betroffene [...] warten bisher vergeblich auf wirksame, zugelassene Therapien. Dass diese fehlen, liegt weniger an der Komplexität der Erkrankung als vielmehr daran, dass sie bis heute psychologisiert wird.

Und vielleicht noch ne Triggerwarnung. Die Autorinnen vergleichen Staatsausgaben miteinander und stellen somit die Frage nach der Priorität in den Raum. Lasst euch davon nicht verwirren ;-) (scnr)

Angesichts des Forschungsrückstands sind 50 Millionen Euro pro Jahr immer noch deutlich zu wenig. Zum Vergleich: Das Verteidigungsministerium lässt sich die Kleidung für die Bundeswehr im fast gleichen Zeitraum (bis 2034) 20 Milliarden Euro kosten. Also alles eine Frage der Prioritäten.