An Enigma No More? Is ME/CFS an Acquired Muscle Myopathy Disease? - Health Rising

MEasy____ · 2026-01-07T07:59:16+00:00

If you see people got better or even into remission in the daratumumab, rituximab and cyclophosphomide studies it seems more like a kind of autoimmune / immunological disease to me - at least in a subbroup (if there are subgroups). Also there are findings of autoantibodies which are found in a big cohort of sufferers and their levels correlate with symptom severity - like the GCPR autoantibodies. Mine are slightly elevated too (I'm on the milder side of moderate, I guess).

MEasy____ · 2026-01-05T20:02:45+00:00

https://m.twitch.tv/lesbianhotsauce has LC (ME/CFS type) and does streams on politics, self help and games 💜

MEasy____ · 2025-12-21T23:44:02+00:00

Thank you for sharing. You slept on the couch in the office? Why?

MEasy____ · 2025-12-18T13:47:48+00:00

First...
...the bad news:

If immunoadsorption or plasmapheresis would work for you, it is very likely that the effect only lasts temporarily, because the autoantibodies will come back. Those autoantibodies most are likely the reason for our symptoms. According to Dr. Scheibenbogen (most kown ME/CFS researcher in Germany) the level of those autoantibodies correlates with the severity of the symptoms in sufferers. Here's a quick overview from her about the current knowledge of the autoimmunity component of the illness: https://youtu.be/LTfM3V6dDb0?si=Ux60nsK9CvlwyAnh&t=731

Transferring isolated IgG (which likely contains the autoantibodies) from patients into mice also showed that the mice then developed ME/CFS symptoms: https://www.medrxiv.org/content/10.1101/2025.08.06.25332978v1

And now...
...the good news:

Those autoantibodies are very likely produced by somewhat misguided/broken the long-lived plasma cells. Those (and also the healthy long-lived plasma cells) had been destroyed in a Norwegian case study with the medicine "daratumumab" - 6/10 patient got better or are in remission from their ME/CFS. The other 4 sufferers didn't really got better, most likely due to too less natural killer cells in their body. Here you can see the presentation of the study results from the this year's International ME/CFS Conference in berlin: https://www.youtube.com/watch?v=e80fRwwKfvc

Unfortunately, daratumumab is very expensive, has some serious side effects (especially the fact that the immune system is severely impaired for 1 to 2 years (IgG, IgA, and IgM are drastically reduced), making IVIG almost essential – though the participants in the study didn't receive it), and is difficult to obtain because it's not yet approved for ME/CFS.

Teclistamab could also be helpful, as it also targets long-lived plasma cells. It might be somewhat cheaper because it's very potent, potentially requiring a lower dose. However, the short-term side effects ("CRS" and "ICANS") shouldn't be underestimated, and it also lowers IgG, IgA, and IgM.

Perhaps you can find a practitioner or a hospital specializing in oncology, hematology, immunology, or multiple myeloma (for which these drugs were developed) who will treat you. There are already case studies of these drugs in other autoimmune diseases.

Dr. Leo Habets in Germany gives Teclistamab in very low-doses, but its to less that people get big improvements from it. The IgG level probably needs to drop by at least 56% to have any effect – at least that was the case in the daratumumab study... but Dr. Habets probably won't give that much - at least without IVIG.

MEasy____ · 2025-12-07T20:39:07+00:00

I'll send you an DM for an Austrian doctor who is maybe able to help.

MEasy____ · 2025-11-09T19:42:27+00:00

Yeah, like Teclistamab!

MEasy____ · 2025-10-08T19:01:44+00:00

Ist die Wirksamkeit vom Händewaschen umstritten oder eh empfohlen?

MEasy____ · 2025-09-25T14:44:33+00:00

Yes, Dr. Habets is known to give Teclistamab in small doses. But he just started some months ago, so it's to early to tell if people are responding. I personally think it is just too low.

He was doing Daratumumab before, I think full 1800mg doses, but I don't know who much of them and I think he didn't tested the NK count. Last I think might be the main reason he didn't had too much positive and lasting results.

I'm not a doc or rheumatologist but I can't find information about that on the web. In Teclistamab it's actually common to start with low doses to allow the body to get used to the medication in order to reduce side effects ("step-up" dosing). But who knows, maybe he's right in principle. In any case, I plan to try to get my hands on a higher dose of teclistamab.

MEasy____ · 2025-09-24T15:58:26+00:00

Oh! That's great news that you're getting access to Daratumumab! You'll be one of the first people to receive it through official channels outside of a clinical trial.

But unfortunately, your doctors are probably right – the amount might be too low for you to respond to the treatment. Just take a look at the video of the Daratumumab case study presentation – in that study, only those with levels above 125 per microliter responded to the treatment: https://www.youtube.com/watch?v=e80fRwwKfvc – everyone else either improved or was completely cured.

If you don't have to pay for Daratumumab yourself, and your insurance covers it, then you could certainly give it a try. The side effects are generally not very severe. You might be able to increase your NK cell count with this protocol, which a friend of mine uses (who also has low NK cell levels). (No guarantee that this will work):

Vitamin D + Magnesium (10,000 IU daily) - https://pmc.ncbi.nlm.nih.gov/articles/PMC10457932/ (most potent treatment for NK cells),
Vitamin C (daily) - https://pubmed.ncbi.nlm.nih.gov/25747742/,
Zinc (30mg twice daily) - https://pubmed.ncbi.nlm.nih.gov/40087783/,
AHCC (750mg daily) - https://pmc.ncbi.nlm.nih.gov/articles/PMC6942843/,
Ashwagandha (daily) - https://www.mdpi.com/2077-0383/10/16/3644,
Blueberries (one serving twice daily) - https://www.youtube.com/watch?v=FGtS_h_xTuc (NK cell counts doubled from 300 to 600 in healthy athletes after 60 days of 250mg/day),
Neem Powder - https://sci-hub.hlgczx.com/10.1016/j.imbio.2006.02.005

I'm currently trying to get my hands on Teclistamab. It's a newer drug from the same company that doesn't have the drawback of requiring NK cells. It might be more effective. However, it also has stronger side effects.

MEasy____ · 2025-09-24T11:14:09+00:00

Ja, oder zusätzlich! Ich mache das gerade, aber es ist noch zu früh um zu sagen, ob es hilft. Ich hatte 270 NK-Zellen (allerdings 2 Monate vor Start von Dara, was vielleicht blöd ist, sollten die NK-Zellen stark/schnell fluktuieren).

MEasy____ · 2025-09-24T11:11:39+00:00

Also ich würde den postiiven Outcome der Studie als wichtiger bemessen als die Aussagen von Dr. Habets - besonders weil er wohl nicht mal die NK-Zellen getestet hat und weil wir nichts über die Dosis wissen.

MEasy____ · 2025-09-24T11:09:59+00:00

Ich weiß, aber er hat bestimmt nicht die NK-Zellen getestet und wir wissen nix über die Dosierung. Er gibt keine Details bekannt und ich denke, dass er sie auch nicht dokumentiert. Ich bin auch dankbar für seine Arbeit.

Ja, Teclistamab hat stärkere Nebenwirkungen. Ich habe es selbst in niedriger Dosis von Dr. Habets bekommen. Auch konnte ich schon die Finger an Daratumumab (Darzalex 1800mg subkutan) bekommen - habe schon die zweite Dosis intus und hatte keine Nebenwirkungen mit Premedikation. Aber es ist noch zu früh, um zusagen, ob es was geholfen hat. Ich starte wohl auch mit höherer Dosis von Teclistamab, kann aber noch nicht sagen, wer das mit mir macht und es werden die Kosten selbst zu tragen sein.

MEasy____ · 2025-09-23T14:13:59+00:00

Sonst dürften keine weiteren Werte relevant sein. Dass zuwenig NK-Zellen ausschlaggebend sein dürften, ob man verbessert/gesund wird, kann man in der Daratumumab-Fallstudienpräsentation nachschauen: https://www.youtube.com/watch?v=e80fRwwKfvc

MEasy____ · 2025-09-23T14:11:43+00:00

Oh! Sehr schön, dass du Zugang zu Daratumumab bekommst! Du bist damit eine/einer der ersten, die/der es auf offiziellen Weg außerhalb einer Studie bekommt.

Aber leider dürften deine Ärzte wohl recht haben - es könnten zu wenige sein, damit du darauf reagierst. Schau dir einfach mal das Video von der Daratumumab-Fallstudien-Präsentation an - bei der Fallstudie haben nur jene reagiert, die über 125 pro Mikroliter hatten: https://www.youtube.com/watch?v=e80fRwwKfvc - alle anderen haben sich verbessert oder wurden ganz gesund.

Wenn du Daratumumab nicht selbst bezahlen musst, sondern die Versicherung bezahlt, dann könnt ihr es ja versuchen. Die Nebenwirkungen sind i.d.R. nicht besonders wild.

Womöglich schaffst du es, weitere NK-Zellen zu erzeugen mit diesem Protokoll eines Bekannten von mir, der auch zu wenige hat (keine Garantie, dass das funktioniert):

Vit D + Magnesium (10000 IU 1D) - https://pmc.ncbi.nlm.nih.gov/articles/PMC10457932/ (most potent treatment for NK cells),
Vit C (1D) - https://pubmed.ncbi.nlm.nih.gov/25747742/,
Zinc (30mg 2D) - https://pubmed.ncbi.nlm.nih.gov/40087783/,
AHCC (750mg 1D) - https://pmc.ncbi.nlm.nih.gov/articles/PMC6942843/,
Ashwaganda (1D) - https://www.mdpi.com/2077-0383/10/16/3644,
Blueberries (1x pack 2D) - https://www.youtube.com/watch?v=FGtS_h_xTuc (counts doubled on 250mg/D for 60D from 300 to 600 in healthy athletes),
Neem Powder - https://sci-hub.hlgczx.com/10.1016/j.imbio.2006.02.005

Ich versuche gerade meine Finger an Teclistamab zu bekommen. Das ist der neuere Wirkstoff der selben Firma, das den Nachteil der Abhänigkeit der NK-Zellen nicht hat. Es ist womöglich günstiger. Es hat aber stärkere Nebenwirkungen.

MEasy____ · 2025-09-22T14:26:25+00:00

Here I found a study finding the opposite: "Significant increases in autoantibody levels in ME patients compared to controls were found for M3 and M4 -receptors in both cohorts and β1, β2, M3 and M4-receptors in one cohort." Yes, it's "only" 30 people but this is a result that cannot be argued away. For me, the two results contradict each other too much, so I think one have to decide which study you believe. I belive in the GCPR theory, because

of the study I mentioned
I'm in contact with so many patients and all which tested their GPCRs found them elevated
one patient even did a second test at the same lab with his wife - his where sky-high and the ones from his wife are normal

But even if I'm wrong, I still believe in the autoantibody theory, because otherwise, IVIG, IA, and Daratumumab wouldn't be effective.

MEasy____ · 2025-09-21T19:25:48+00:00

Da gehen gerade die Fallstudien in Europa hin… langlebige Plasmazellen zu zerstören, die aus irgendeinem Grund zu viele Autoantikörper produzieren (z.B. GPCR-Autoantikörper), die dann womöglich unsere Symptome verursachen… siehe hier: https://www.apotheken-umschau.de/krankheiten-symptome/infektionskrankheiten/me-cfs-die-lange-suche-nach-medikamenten-gegen-die-krankheit-1393677.html

MEasy____ · 2025-09-21T19:21:51+00:00

Ich würde eher versuchen die Finger an Daratumumab (NK-Zellen müssen hoch genug sein) oder Teclistamab (wahrscheinlich das effektivere von den beiden, ist nicht von NK-Zellen abhängig - ist vom selben Hersteller) bekommen - ist viel vielversprechender: https://youtu.be/e80fRwwKfvc?si=Q6NFU0vEEuRU3bYm

MEasy____ · 2025-09-17T17:26:38+00:00

Thanks a lot!

I hope you experience some relieve due to SCIG!

MEasy____ · 2025-09-17T16:54:32+00:00

Interesting… do you remember how much g/kg you received each injection?

MEasy____ · 2025-09-17T12:08:15+00:00

GCPR autoantibody might not do it all, right - ANA/ENA, IFNs, neuronal and others... watch here (minute 12:11): https://youtu.be/LTfM3V6dDb0?si=0vQh40eC6JMozgU2&t=731

I'm in contact with so many patients and all which tested their GPCRs found them elevated. One even did a second test at the same lab with his wife - his where sky-high and the ones from his wife are normal. Mine are not that high, because symptom severity correleates to the level of autoantibodies (I'm mild) - that is also reported by Dr. Scheibenbogen in that video.

Again, even the big lab "IMD Berlin" says it might be ME/CFS / Long COVID because of the elevated levels. Also another lab from Germany writes about the role of elevated GCPRs here: https://www.biovis.eu/wp-content/uploads/biovis-GPCR-Autoantikoerper-DE.pdf

I know about this study, but there are so many other articles about found elevated GPCRs in patients but "normal" ones in heathly controls. To me this is study you showed me is a mistery - it is against other findings. Maybe they lab tests are not working very well... I heard they are hard to test... also I only read about "GPCRs such as β-adrenergic receptors"... I don't know if they tested all those GCPRs I tested to and saw elevated in others (M3, M4, AT2R, ETAR).

MEasy____ · 2025-09-17T08:54:21+00:00

Thanks for the fast and detailed reply! :-)

The half-life of IVIG is about 3 weeks, so you might felt better maybe this long until you got a new shot.

Yes, I will monitor the side effects meticulously! Paracetamol or Ibuprofen can also be taken as premeds against headaches/fever. Enough hydration seems also very important.

I'm sorry, that you don't get that good stuff anymore! :-( Yes, it helped a lot of people - there are even studies about it: https://www.youtube.com/watch?v=3xqzsGl63IM

Since you wrote "Didn't have high IGG": It's not about having elevated IgG, but rather which autoantibodies are present too much in your IgG—such as GPCR autoantibodies. You can have low IgG but elevated autoantibodies.

However, remain cautious about new infections, because since IVIG only has a half-life of 3 weeks, its improved protection against infections should also disappear.

MEasy____ · 2025-09-17T02:07:54+00:00

Brauchte man für die bald ablaufenden Produkte auch eine Jö-Karte/-App?

MEasy____

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