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USD 2,581 raised via Innsamling360.no. What I can't see is how much they've raised via bank transfer and PayPal. Maybe they could make that public by updating their fundraising page? It could motivate people to donate if they see that things are moving forward. Do you want to add that to your...

And of course this is what the big newspapers publish. Just like when the FAZ gave the DGN a platform a few weeks ago whereas Martin Rücker's other articles on ME/CFS disappear in an online magazine.

Not really. This is something that happened to 3 out of 4 non-responders if you look at the supplementary table. For some reason patient 9 did not have her NK cell count recorded after 15 months.

From the Fluge and Mella paper: But it was still above (or close to) 125 x 10^6/L after 15 months for three of them (edit: higher than their baseline and the minimum required to take part in the phase 2 trial). The last dose was given at 30 weeks. I wonder what would have happened if they had...

Do you have a link?

If blocking CD38 is the key, could dara non-responders theoretically respond to Isatuximab? We have a thread on it here: https://www.s4me.info/threads/daratumumab-isatuximab-cd38-drugs.42556/

Any reason why we don't have data on NK cell toxicity from the Fluge and Mella study?

Can't the NK cell count fluctuate over time? We have no data for pwME, but might have data for healthy people/other illnesses? Or do we assume if the NK cell count is low today someone will always be a non-responder because their specific ME/CFS subtype suppresses NK cells?

Viral persistence has an excellent marketing strategy :banghead:

I'm moderate and for me it's not even during PEM. Onset can be within an hour depending how much time I've spent on my phone. That being said when I had LC (pre ME/CFS), I couldn't really listen to music anymore. It made me uncomfortable as if I was going to get a headache except back then I...

Does mental activity equal sensory processing? I can reliably trigger a sore throat feeling/swollen lymph node with screen time, but I can read physical books just fine.

Thanks so much Tom! I got this message from them:

New English version: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fond/ That was fast! I did not expect such a quick turnaround time. It has links to innsamling360.no and PayPal.

Oh no. And he has such a parasocial patient following. Well, maybe people will wake up.

Maybe a different payment platform. Innsamling360.no is only accessible with Google Translate for most of us and their payment system seems to be down. Although I understand if they don't want to use multiple providers.

I just found this: This is about individual fundraisers, but he's the go to person in general. I’m not sure how to get other charities interested in collaborating. Edit: we've been discussing this since June lol...

I'd prefer if AfME focused on Edinburgh projects. But OMF have a fundraiser for a biomarker fishing expedition. They should contribute imo. Or WE&ME and the ME/CFS Research Foundation. Both could probably contribute a significant amount, but all charities want to focus on their own initiatives...

Agreed, I was just going to edit my post wrt to NK cell toxicity.

Anecdotally, NK cells don't seem to be correlated with severity. Even looking at the SF-36 physical function at baseline vs NK cells at baseline in the dara trial, not all non-responders (highlighted because I did this on my phone which doesn't allow for a better graph) had the lowest physical...

Other than trialling different drugs, how would we know if there's a better target?