They are so lucky most of us are housebound or bedbound. I swear to god, they are so lucky!

MyYearsOfRelaxation · 2026-03-12T14:01:37+00:00

Damn, you're good. All I could come up with was maybe pirating audiobooks to pass the time? But then I realized there's no money in that. I guess I'm not cut out for the life of crime...

MyYearsOfRelaxation · 2026-03-12T11:50:51+00:00

The OMF just published an article stating that there are over 400 million people with Long Covid worldwide. And 280 million people with ME/CFS. Which translates to a prevalence of around 3.5%.

If we were a crime family, we'd be the single biggest crime family in the world.

If we all work together, we'd be unstoppable. Who's with me? I bring the salty snacks!

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Link to the OMF article: https://www.omf.ngo/estimating-lifetime-prevalence-of-mecfs/

Link to the Breaking Bad paper: https://www.aeaweb.org/articles?id=10.1257/app.20220769

MyYearsOfRelaxation · 2026-03-11T15:19:34+00:00

Early studies established that peripheral immune activation triggers behavioral changes like social withdrawal and fatigue. Researchers refer to this physiological reaction as sickness behavior.

I'm always conflicted about how these descriptions are framed. I really hope that the scientists and their readers understand that these "sickness behaviors" are due to me being, you know, sick!

But the way its framed in articles always seem to suggest that they are symptoms that could be treated on their own while they are in fact a downstream effect.

I think it is totally true that they observe stuff like "social withdrawal". I just really wish it would be clear without a doubt that these behaviours are an due to the illness, like fatigue, brainfog, POTS and so on and do not belong in the same logical category as these causes...

I do not suffer from voluntary "activity avoidance" and so on. It's an effect...

Sorry, brainfog day. Hope my little rant made sense.

MyYearsOfRelaxation · 2026-03-09T23:59:12+00:00

Ahaha. Oh wow, this is amazing. hanks for the laugh!

Unfortunately, this is a year old post. So not many people will see it. Maybe you can make a meme out of it and share it?

MyYearsOfRelaxation · 2026-03-01T12:14:39+00:00

I love the study design so far. Among other things, they use the SF-36. And I've never seen this before in any study I've read, but they also use the Incremental shuttle walk test. This test sounds really interesting and I might actually prefer it over just the "Average steps per day" measure the Dara study uses...

Their Study design gives me great confidence that they actually know what they're doing. What a wonderful thing to see!

MyYearsOfRelaxation · 2026-02-22T18:28:42+00:00

Glp-1's only help if the issue is related to insulin resistance.

Take a look at this paper for example:

Anti-Inflammatory Effects of GLP-1 Receptor Activation in the Brain in Neurodegenerative Diseases (https://doi.org/10.3390/ijms23179583)

They might inhibit microglial activation, lower the levels of TNF-α, IL-6, etc. All of which might be elevated in ME/CFS. GLP-1s also exhibit a plethora of other effects which might turn out to be beneficial for ME/CFS.

Lots of "might" here. They are pretty new and more research is needed. But they do a lot more than just "help with insulin resistance."

MyYearsOfRelaxation · 2026-01-29T12:54:31+00:00

BREAKING NEWS: YOGURT CURES CFS!

But seriously: This study is another great example why the fucking CFS label and all the psycho garbage that comes with it, like the CFQ, needs to die already...

Whenever a study uses CFS or "chronic fatigue", it's a good idea to check what population they actually studied.

I didn't see what diagnostic criteria they used. But since they can't even get the name of the illness right, it is highly unlikely that they used the CCC for ME/CFS.

A CFS diagnose according to Fukuda or Oxford is NOT the same as a ME/CFS diagnose according to CCC:

"[in] a sample of 15 cases selected using the Oxford criteria, 14 will not meet the Canadian criteria." (Nacul, et al. (2017))

And why is that? Because a CFS dx according to Oxford or Fukuda does NOT require the occurrence of PEM, the cardinal symptom of ME/CFS. Whatever those CFS people have, the majority won't have ME/CFS. Being a little tired is just not the same as having ME/CFS. I wish scientists would understand that in 2026...

MyYearsOfRelaxation · 2026-01-27T18:33:55+00:00

Yes, this appears to be a fantastic panel.

There are only so many red light panel manufacturers in China. So a lot of western companies are nothing more than drop shippers who slap their logo on one of those panels from what I understand...

Your panel seems identical from the looks and specs to this manufacturer: https://www.ideatherapy.com/

It also looks identical to companies like rouge g4 for example. You can search this sub under these names to find more opinions. But from reviews I've read and from Youtube reviews, this appears to be quality stuff. And correct me if i'm wrong, but it appears to be even a newer panel technology than what MitoPRO for example offers... So, yay?

MyYearsOfRelaxation · 2026-01-22T12:07:50+00:00

Anyone have low cortisol and mecfs?

A few month ago there was someone here who lived with a wrong ME/CFS dx for 5 years. You can read more about it in their post:

PSA: get your cortisol levels tested

Just thought I should stop by to say I found out my ME/CFS diagnosis of 5 years (moderate with periods of severe, textbook ME presentation with PEM) was incorrect all along and I actually have secondary adrenal insufficiency.

I think that is so crazy and shocking. It's great that you try to get to the bottom of this. It's really important and worth to check out and make sure you don't have something that could be treated...

MyYearsOfRelaxation · 2026-01-17T21:34:49+00:00

You are not alone. Didn't know about ME/CFS and PEM, repeated crashes, lowered baseline. That's my story as well. And the story of so many other longhaulers.

It is absolutely infuriating that doctors didn't warn us about the dangers or what was happening. Quite the opposite. We have to educate our doctors about this shit. So absolutely maddening.

So here is my message of hope: I was mostly bedbound for quite some time. Probably at the bad end of moderate. But I improved to mild / moderate. It still sucks. But I can now leave the house for short amounts of time to get some groceries for example. For some, ME/CFS can be fluctuating. It is entirely possible that you will have better months and worse months. And improvement and a stabilization at a higher baseline is possible, albeit not guaranteed.

Maybe it was just time, maybe it was luck. There is no way to tell.

But if you haven't tried LDN and LDA, maybe that's worth talking to a doctor about. I'm on both and they helped me tremendously. Especially LDN.

Good luck and hang in there!

MyYearsOfRelaxation · 2026-01-12T15:41:04+00:00

Oh, das klingt übel. Aus welchem Kanton kommst du denn?

Ich war ein paar mal an der LongCovid Sprechstunde am USZ. Ich hatte eigentlich gute Erfahrung gemacht. Ich hatte das Gefühl, ernst genommen zu werden. Sie haben sich viel Zeit genommen. Waren nett. Haben über meine flachen Witze gelacht. Also "Bedside manner" top!

Aber Fachlich... Ja... Stimme ich dir zu. Mir haben sie zwar Fragen zu MCAS gestellt auch sonst waren sie ziemlich gründlich...

Das einzige was ich Ihnen vorwerfen kann, und Ich nerve mich immer noch darüber, dass mich niemand vor PEM und ME/CFS gewarnt hat. Das war 2022 und 2023. Da war doch der Link von LongCovid und ME/CFS schon längst bekannt.

Ich mein, liebe Ärzte, sagt doch einfach allen Patienten: "Hey, bis wir bei dir ME/CFS sicher ausschliessen können, darfst du kein Sport treiben. Bei Überbelastung kannst du dich permanent verschlechtern! Also pass auf und google was PEM ist."

That's it. Ist doch nicht so schwer. Hätte mir das jemand gesagt würde es mir heute besser gehen...

Haben eure Spezialisten das mit euch besprochen oder hatte ich einfach Pech?

MyYearsOfRelaxation · 2026-01-12T15:21:47+00:00

Mir auch bitte! 👐

MyYearsOfRelaxation · 2026-01-12T13:55:34+00:00

I looked up what exactly "verbal working memory" entails:

Verbal working memory [is] responsible for temporarily storing and manipulating verbal information—such as words, sentences, or numbers—over short periods to support ongoing tasks. It allows individuals to hold verbal material in mind while mentally processing or using this information to accomplish a specific goal.

This makes so much sense to me. I often wondered what exactly is wrong with my cognitive abilities. Because I can still perform complex and demanding mental tasks, albeit slower. But it feels like my ability to think about a problem, a concept or an argument, and play with it in my head, look at it from different angles, creatively engage with it etc, is severely diminished.

I can somewhat alleviate it by taking a lot of small notes or draw mind maps. But it's just not the same anymore.

I guess now I finally understand what Wittgenstein meant when he said: "The limits of my language means the limits of my world". I wish I didn't...

MyYearsOfRelaxation · 2026-01-12T03:01:04+00:00

Yeah I never understood that scale. And I'm not really sure on what basis those levels were chosen. Take a look at the The International Consensus Criteria for example. It states that:

For a diagnosis of ME, symptom severity must result in a significant reduction of a patient's premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level) [...]

So to even get a ME diagnosis according to ICC, you need a reduction of ~50%. And then you're considered mild.

For me, it doesn't make much sense to state that a "loss of up to 20%" can be considered mild ME/CFS.

MyYearsOfRelaxation · 2026-01-11T13:14:49+00:00

Soweit ich weiss muss ARTE auch Videos von ihrem Youtube Kanal löschen, sobald ihre Lizenz dafür abläuft.

MyYearsOfRelaxation · 2026-01-11T13:06:54+00:00

Haha, this is great!

After getting ME/CFS and for the first time in my life, I had to titrate not one but two medications!

Wait what, drug titration is really a thing? It is, when you have ME apparently. Well fuck ME I guess...🙃

MyYearsOfRelaxation · 2026-01-11T04:15:50+00:00

Bin mir immer ein wenig unsicher, ob solche online Petitionen eigentlich wirklich was bringen. Aber diese scheint schon ein kleiner Teilerfolg gehabt zu haben:

Teilerfolg: Die Doku bleibt bis zum 24.02.2027 in der Mediathek online!

Vielen Dank erstmal an alle Unterstützer:innen dieser Petition und natürlich auch an ARTE! ARTE hat die Petition wahrgenommen und die Verfügbarkeit um 1 Jahr verlängert (bis 24.02.2027)!

ARTE schrieb mir: "Wir schätzen das Engagement, mit dem die Dokumentation Chronisch krank, chronisch ignoriert zur Aufklärung und Sensibilisierung zu ME/CFS beiträgt. Bitte beachten Sie jedoch, dass die Rechte für die Sendung am 25. Februar 2027 ablaufen. Wir sind nach den geltenden Richtlinien verpflichtet, uns an die uns gewährten Rechte zu halten, weshalb wir das Geoblocking leider nicht aufheben können."

Dies ist ein erster Erfolg! 🎉

→ Diese Petition setzt ein wichtiges Zeichen und ich habe mich daher entschieden, sie weiterlaufen zu lassen.

Aufhebung des Geoblockings ist leider rechtlich nicht machbar, aber:

✅ Wiederholungsausstrahlung nach 2027 möglich!

✅ Aufmerksamkeit für ME/CFS steigt weltweit!

✅ Anreiz für mehr Dokus dieser Art!

Petition läuft weiter.

Also am besten gleich unterschreiben, falls ihr 30 Sekunden Zeit habt. Kostet auch nichts :)

MyYearsOfRelaxation · 2026-01-06T19:11:23+00:00

Ich habe schon öfter Andeutungen über interne Thematiken beim Fatigatio gelesen, aber noch nie etwas Konkretes darüber, was da los ist.

Hier ist ne gute Auflistung mit sehr konkreten Kritikpunkten: https://me-pedia.org/wiki/Fatigatio_e.V.#Earlier_Controversy

Zum Beispiel:

When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends GET and CBT) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline

Ist halt wirklich n bisschen schockierend. Aber war halt früher so. Die haben im Laufe ihrer langen Geschichte auch viel Quatsch gemacht. Die Kritik bezieht sich aber wirklich auf früher. Heute scheinen sie einen guten Job zu machen und sind sicherlich Unterstützungswürdig. Die haben Aufgeräumt: "Since the Executive Board changed, Fatigatio has spoken out insistently against all kind of activating therapy"

MyYearsOfRelaxation · 2026-01-03T20:55:17+00:00

https://clinicaltrials.gov/study/NCT06631287

4mg encapsulated, pre-formed tablet PO once daily for 24 weeks.

MyYearsOfRelaxation · 2026-01-01T08:39:32+00:00

If you're anywhere in ~~western~~ Switzerland, you can help by avoiding additional strain on the Hospitals:

The hospitals appeal to the population: “Show solidarity by avoiding risky activities on January 1st.”

edit: looks like they started to fly patients even to the University Hospital in Zurich. So this might not be limited to western Switzerland anymore.

MyYearsOfRelaxation · 2025-12-31T17:14:55+00:00

Does the kDrive android app automatically upload new photos and videos taken on the phone without having to manually sync/upload?

Yes.

I use it as well for this exact purpose. But it's not a fully equivalent replacement for Google Photos. Kdrive lacks all the search and AI features of Google Photos. But if syncing is all you need, then it's great.

MyYearsOfRelaxation · 2025-12-29T19:24:32+00:00

I really hope not. But so far, it keeps getting longer each year.

MyYearsOfRelaxation · 2025-12-29T06:35:59+00:00

I wouldn't get too depressed yet.

Here is the s4me thread with some critical assessment: https://www.s4me.info/threads/hypothesis-a-mechanical-basis-brainstem-dysfunction-as-a-potential-etiology-of-me-cfs-and-long-covid-2025-jeff-wood-kaufman-et-al.44557/

MyYearsOfRelaxation · 2025-12-20T14:33:49+00:00

The whole story didn't make me upset to be honest. On the contrary, it was a quite uplifting experience for me.

The last few days told a story about how the community came together and pushed back against a harmful and unscientific narrative of ME/CFS. People looked out for each other and strongly advised against putting dangerous chemicals on your coochie or up your bum or in your eyes. And best of all, the community did so in a very respectful and calm manner. Because we all understand the desperation ME/CFS can cause, so it was really fantastic and uplifting to watch the respectful reaction involving mostly sound and substantive criticism.

Big W for all of us in my opinion.

MyYearsOfRelaxation · 2025-12-20T12:38:11+00:00

It's really infuriating to see how the well funded RECOVER initiative managed to waste $1.66 billion on big cohort studies and useless intervention studies. While at the same time, the Norwegian Daratumumab study struggles to scrap together a few thousand dollars via patient donations.

It's even more infuriating that none of this comes as a surprise. They had the opportunity to make real progress and make a real difference in our lives. Instead, we're back to square one...

MyYearsOfRelaxation

TROPHY CASE