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E.L.I.S.A., E.R.D.E. and all sorts of very specific auto-antibody and spike protein tests have a chokehold on German LC/ME/CFS researchers and patients.

I didn't take extensive notes at all. These are just things that stood out to me and that I remember. If anyone wants to add anything or thinks it would be beneficial to summarise the discussion with AI, please feel free to do so. Scheibenbogen: Sanofi are interested in supporting trials and...

This fundraiser https://innsamling360.no/innsamling/vis/195?pk=195&pane=2 has met its target, but like you said it's unclear how much they still need. Did you mean the post from 5 days ago? https://m.facebook.com/61579371603061/

Expert statements for a public discussion in the Bundestag. I can't translate all of it, but it's a lot of biobabble (the need for precision medicine based on individual genes, endothelial disfunction, mitochondrial damage, neuroinflammation, MCAS, BC007 being a useful drug for responders), and...

What's odd is that they reported symptom improvement after as little as 2 weeks. In the pilot trial it looks as if patients didn't start feeling better until 8-10 weeks after the first injection unless mild improvements weren't captured with the questionnaires.

No, I'm the same. I only experienced what I think people refer to as "poisoned" twice. And personally I would have described it as feeling hungover. I've been hungover plenty of times, but I've never been poisoned so even though I trigger PEM frequently, I never understood what people were...

Ah my bad. They were part of a kick-off meeting and they want to ensure funds aren't misused for BPS research.

I think you suggested it in another thread, but I'd also like to see collaborations with other charities such as the ME CFS Research Foundation. They seem to have successful fundraising drives, but I'm not sure how they could be convinced to fund research in other countries, especially a non-EU...

Disagree. The viral persistence folks should just leave the field and free up funds for more useful research.

Yes, everyone from group 3 (LC) onwards needs to meet NK cell requirements.

Yes, this is like the LC group. They will get injections in Q1/Q2 2026. Three initial injections followed by two more injections half a year later. I want to know this, too!

Apremilast (Otezla) is the other drug. Ampligen is pretty much unavailable in every country except Argentina if I'm not mistaken.

This is an AI summary so please treat it as a placeholder. "Anti-drug antibodies (ADAs) are antibodies produced by the immune system against a therapeutic drug, most commonly a biologic. ADAs can form when the body recognizes a drug as foreign, leading to side effects and reduced drug efficacy...

It only works when you use a lot and it's likely that people will have to be retreated after some time.

Apart from the official phase 2 trial, they are testing dara on additional patients. This is from an updated protocol where everything is unblinded. TLDR: 4 LC ME/CFS patients and 1 relapsed patient from the pilot study received a single dose of dara. Their symptoms improved for 1-4 months and...

Update: research funding strategy of the ME/CFS Research Foundation In 2026, our research funding will support projects that, based on the latest scientific findings, address the following aspects: Elucidation of the disease mechanisms, underlying central ME/CFS symptoms, such as PEM...

Wouldn't this potentially happen to anyone who was stuck in a dark room without stimulation for years on end? Along the lines of use it or lose it?

I can't speak for the physiotherapists, but the doctors diagnose patients using the NICE guideline. The one I spoke to was big on POTS, MCAS and post covid blood clotting and recommended antihistamines and blood thinners as a blanket approach - something JE said he would raise with Sonya. No...

True. Step count for me wasn't a good way to predict PEM.

My point isn't really the beta blocker. It's that walking large chunks has always been more exhausting than walking the same distance while taking breaks or just standing. I can't explain while walking a short distance with a low heart rate was more exhausting than taking a shower with a high...