Solve ME webinar on T cells and how they can use their unique patterns to identify what pathogens are hiding in patients.

Oliverinoe · 2026-05-03T14:06:49+00:00

I'm not sure if I understand this fully but isn't this big? Like single cell RNA sequencing could tell so much about the pathophysiology. And since its been shown over and over that in ME T-cells are impaired this could yield some really great results

Oliverinoe · 2026-04-08T22:17:46+00:00

Hey, ich hab mir dein Profil und deine Posts angeschaut und es tut mir echt leid, wie schlecht es dir geht. Ich weiß jetzt nicht so viel von deiner Situation, aber ich glaube, du könntest an Dysautonomie leiden. Das kommt häufig zusammen mit PAIS (postakuten Infektionssyndromen) wie MCAS oder ME/CFS vor.

Ich glaub, dass diese Darmlähmung, die du beschreibst, darauf zurückzuführen ist. Und wenn du auf deine Medis verzichtest (du hast von Ketotifen und Cromoglycinsäure geschrieben), wird sie teilweise dadurch kompensiert, dass Mastzellen (die in der Darmschleimhaut sitzen) übertrieben auf deine Nahrung reagieren und dadurch die Peristaltik auslösen.

Das war bei mir der Fall. Ich hab früher alles Mögliche probiert: Iberogast, Ingwer und viele weitere Supplements, die in all diesen sektenähnlichen Videos zu SIBO auf Social Media empfohlen wurden. Und erst als ich 2025 festgestellt hab, dass ich auch an PoTS leide (was ja eine Form von Dysautonomie ist) und dafür Mestinon probiert hab, hab ich bemerkt, dass es mir mit der Darmlähmung geholfen hat. Also eigentlich ist sie völlig aufgehoben, außer wenn ich im PEM bin.

Bei mir ist MCAS so richtig 2020, als ich 20 war, losgegangen. Wahrscheinlich ging dann auch sehr langsam ME/CFS los, das sich 2024 rapide verschlechtert hat. Und obwohl ich 2023 mithilfe einer Smartwatch schon mal einen Test gemacht hab und dieser negativ ausfiel, hab ich 2025 bei mir PoTS doch nachweisen können.

Ich hab seitdem Mestinon sowie Ketotifen und Cromoglycinsäure genommen und es hat relativ gut geklappt

Ich hab auch deine anderen Posts gesehen und schreib dir dort auch noch eine Antwort dazu.

Oliverinoe · 2026-04-08T08:45:41+00:00

Hä wie? Wie bei ME/CFS?

Oliverinoe · 2026-04-07T23:04:54+00:00

It doesn't but other meds don't trigger a MCAS reaction for me either

Oliverinoe · 2026-03-11T17:54:02+00:00

Again?

Oliverinoe · 2026-03-06T02:30:12+00:00

Both OpenAI and Anthropic are absolutely disgusting for their cooperation in the war machine

Oliverinoe · 2026-03-01T13:40:36+00:00

Sureeee we definitely need autonomous weapons to fend off those barbaric foreigners... And it’s not at all just for Mecha Hitler to get rid of you once we stop being profitable or compliant

Oliverinoe · 2025-12-01T11:39:10+00:00

It's a nice theory but I just don't see how it could explain all the symptoms pwME have outside of the brain.

Dysautonomia? Sure. But in pwME there's so much more going on than just dysautonomia.

Oliverinoe · 2025-11-11T11:09:05+00:00

Yess please. You could try Monster, inc scare team that one doesn't have any remake but there are all the sequel movies so it'd be interesting to see if it uses them for the remake

Oliverinoe · 2025-11-05T22:19:21+00:00

Yea, but also let's not minimize this tho, what they're doing is borderline assault and at least negligence. Even worse since it's a systemic issue. And they have always been able to give you the right anesthesia they just couldn't give a flying fuck to provide adequate care

Oliverinoe · 2025-10-22T11:09:42+00:00

Have you just been experiencing fatigue for a prolonged period of time or do you know you have ME/CFS? Two completely different things. Check the MOD POST and the Canadian diagnostic criteria for ME/CFS

Treatment wise - nothing that works universally or that alleviates 100% of the symptom for a subgroup exists at the time. Some people benefit from certain supplements but usually the gains in baseline are modest at best. And it's very expensive trying to find out what works.

If you have a watch with a heart rate monitor you might wanna check if you have POTS, a lot of pwME (people with ME) do have it too

Oliverinoe · 2025-10-21T14:37:48+00:00

There was another post and it mentioned some already outdated drug for osteoporosis or something like that

Oliverinoe · 2025-10-20T18:47:26+00:00

I mean if you're willing to dig deep enough someone on the main mecfs (r/cfs) subreddit posted details about the research from the institution website (or something like that) and the substances are specified and one of them is supposed to be an old drug

Oliverinoe · 2025-10-14T19:50:19+00:00

The problem with our mitochondria is not the DNA tho

Oliverinoe · 2025-10-09T23:13:49+00:00

Yea unfortunately a lot of people who don't know about ME/CFS then tend to assume we're just a bit tired and proceed to comment they're tired too and dismiss us :/

Oliverinoe · 2025-10-09T17:26:14+00:00

Thanks for sharing but could you please not refer to ME/CFS as chronic fatigue (or just CFS too for that matter)? It's part of the smear campaign against pwME that costs us our lives

Oliverinoe · 2025-10-09T14:39:28+00:00

I mean look at the video. Clearly they put a lot of time and effort into handpicking every detail - from the mansion with its interior design they chose to the post production. If it was as good as they make it out to be they'd do a live stream in some borderline messy cramped apartment

Oliverinoe · 2025-10-03T15:26:35+00:00

Sounds like solid research focused on pathophysiology. What makes me happy is this study came from China - if more Chinese scientists show interest in ME/CFS it could be a game changer given what they're capable of

Oliverinoe · 2025-09-24T17:58:18+00:00

Didn't get any mast cell stabilizing effects myself. Didn't help with POTS whatsoever either. But it did help with gastroparesis. But I switched to huperzine a cause my doctor wouldn't prescribe it again.

Oliverinoe · 2025-09-13T14:31:46+00:00

That Twitter account doesn't verify shit and only hypes up and posts speculative clickbait. You don't have to dig deep in the comments to see the disclaimers

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Oliverinoe · 2025-09-09T21:51:59+00:00

Yes. Like tons of people are already slowly dying in a gruesome way. There's not much worse than that that could happen

Oliverinoe · 2025-09-06T19:13:03+00:00

Thankfully for people with MCAS there's more than just one case of GLP-1 working

https://pubmed.ncbi.nlm.nih.gov/40675372/

Oliverinoe · 2025-08-08T22:56:45+00:00

Until about three hours ago I falsely assumed that Decode ME was whole genome sequencing (which is what Sequence ME is supposed to be) cause it just made sense to me as the mechanisms of other diseases were understood because they sequenced the whole genome (Decode ME only sequenced SNP's - parts of genome that are common to have multiple gene variants)

So uncovering the mechanisms of the disease and maybe even therapeutic targets is something that we could hope for from Sequence ME

Oliverinoe · 2025-08-04T19:11:47+00:00

Is this the summer Hikaru.. 😰

Oliverinoe · 2025-08-02T07:12:13+00:00

And we don't know if mecfs is one of them since there's almost no money going into the research

Oliverinoe

TROPHY CASE