Search results

https://www.laborjournal.de/editorials/m_3345.php

This gala https://zeitzumhinschauen.at/, organised by Christoph Ströck's friends, has sold out. He's one of the sons of the Ströck family who own a bakery chain and have founded WE&ME foundation. Tickets were €500 each. https://nitter.net/gabrielestroeck/status/1972166912357683568#m

It got some attention on Reddit. As always, it's infuriating to read: Apart from the fact that most GPs think CFS = fatigue, a lot of them read Suzanne O'Sullivan and believe in GET according to this thread. What a waste of tuition fees if this is the result.

My heart rate is fairly consistent when I walk slowly and was really low when I was on beta blockers. I'm still out of breath after 30m and walking reliably triggers PEM unlike cooking or taking a shower where my heart rate is higher.

Oh, he has heard of it. He's been asked on other social media platforms to join, but gave a vague response. Can't imagine why...

We've also discussed this here https://www.s4me.info/threads/long-lived-plasma-cell-llpc-theory-similarities-between-cfs-and-lupus.45936/page-13#post-640709

From her latest interview: The most promising approaches are based on monoclonal antibodies that target the cells producing autoantibodies – in other words, B cells or plasma cells. More than ten years ago, there was already a pioneering study from Norway with the drug rituximab. Many of those...

Can they measure this in the trial as an additional data point?

What could be a possible explanation? Could NK cell cytotoxicity be important?

The thread discussing the paper is https://www.s4me.info/threads/plasma-cell-targeting-with-the-anti-cd38-antibody-daratumumab-in-me-cfs-a-clinical-pilot-study-2025-fluge-et-al.44736/, but we also had some NK cell discussions here...

Probably these? https://www.physiotutors.com/questionnaires/sf-36-rand-36-mos/

No wonder they were able to fund a Isatuximab trial (assuming they were involved which is very likely)

Yeah, we have 1.15M here and 4M here. Maybe they have received a huge donation over the past few weeks, but it seems unlikely.

Haha fair enough! I need to wait for my tokens to refresh and ofc I could Google it in the meantime, but here's what the previous version of chatgpt says: “-u-” = fully human When you combine -tu- (tumor) + -u- (human) + -mab (antibody) → it looks like “tumu-mab,” which gets compressed in...

Chatgpt says: So, daratumumab can be broken down: -mab = monoclonal antibody -tu- = tumor (targeting tumors/cancer) -ma- = human (made from human sequences, vs. chimeric or murine) dara- = unique prefix, chosen just to make the name distinct

No idea unfortunately. She only mentioned it briefly at the end of her presentation before she ran out of time. The study was funded privately so I wouldn't expect anything massive. But perhaps I'm underestimating the German charities. She also said they're waiting for government funding for...

The recording can be found here:

From the Fatigatio live stream today: Carmen Scheibenbogen says they have secured funds to trial Isatuximab (she mentioned a CD38 depleting drug from Sanofi and there's only one). She says Sanofi are interested in cooperating based on recent results. At 2:47:00, but it's in German. Edit...

Are any of these trials remotely interesting? As far as I can tell the Charité runs two trials on immunoadsorption, one on hyperbaric oxygen and one on methylprednisolone. I'm not sure what @Mebfeb is and Simmaron is looking at rapamycin which, anecdotally, doesn't seem to help.

I agree with @V.R.T.. It would be ridiculous to wait 10 years when it's been on the market for so long and the risks are well-managed within cancer patients. The NHS only uses dara as a fourth-line treatment in multiple myeloma because they have other (cheaper) options. Given the BPS influence...