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Define minuscule. Fluge & Mella started their research from a handful of anecdotal case studies (ME remission from cancer) Consequently they started various offlabel mini-pilots n=3 case studies. Daratumumab for auto immune diseases started with n=1 off-label case studies.

I think many points you are making are very valid. I was actually editing my post to be more clear. But for me, the heterogeneity of ME-patients and the lack of clear bio markers makes it very difficult to make bold statements. - in almost all the ME-drug trials I’ve read upon there’s always a...

Why can’t we state that Ritux might have worked for a subgroup? Drug trials are hold to the highest standards, rightly so, as we need scientific rigor. But it doesn’t leave room for the middle ground: Either it is placebo, or the drug is effective as it’s theorized. - so IF it doesn’t work...

There is actually Cyclo data on IgG levels. Cyclo responders had the lowest IgG drop - on average But not a drop to the extent of the n=10 Dara pilot. Also, the starting IgG from responders was already lower than non-responders (on average) EDIT: @Jaybee00 i missed your comment (‍️) So this...

In my opinion, off-label case studies (n=1 trials) have their merit, as long as they’re properly documented and monitored by a Doctor Who knows ME and how the medicine works - in this case Dara - and what to monitor. Sadly, not all specialists do know what they’re doing, do meticulous...

I strongly encourage this. - it will accelerate funding IMO this is the best buck to invest for an ME + LC patient. At least if you’re looking at research that can directly be translated into treatment.

OK. I donated. But that was pretty inaccessible for non-Norwegians. I would strongly encourage the funding organization to go international. - website in English - accept more forms of payments I’m pretty convinced that they will get much faster to the targeted funding amount. Like 10x...

I have researched Fever Response in ME at length because I have been interested by the fact that I have never seem to develop a HIGH FEVER in 17 years. The only 2x times I did I was in (temp) remission - and also felt better afterwards. I define HIGH FEVER as - prolonged temperatures >38° C...

To do a poll on for example, X Twitter or other fora like this one is something I always wanted to do, but I’m too severe now. Anyway, this was the method: - searching the public internet including websites such as Reddit, X/Twitter and fora like phoenixrising.me, S4ME, for keywords such as: -...

No data. The correlation with HLA might be coincidence. At the moment I’m not making much of it. PS If you want more info / detail on specific data, DM me

I’m just gonna put this out there. I don’t know what scientific value these data have. But I myself, at least, consider this valuable data (in the ME-desert of patient drug trials + data). A Survey overview of n=49 ME-patients anecdotes that went thru cyclophosphamide treatment (or similar...

Not identical. Basically a sibling. Non-identical twins are no different to any other sibling.

One thing I i’m curious about the Dara Pilot Trial : - Dara targets LL Plasma cells which produce antibodies (immunoglobulins IgG) - so the objective Norwegian researchers seems to be lowering of IgG But HOW important is it to lower IgGG for response ? I compared CycloME and Dara IgG-charts ...

Still interesting. After the high dosage boost: Did it really improve your threshold for PEM? And for how long, how many days? I presume you’re able to distinguish between a) getting a ‘steroid-high’ and getting a payback with a crash a few days later vs b) the real temporary improvement of...

I’ll deduct some of the potential treatments based on the paper Main Targets for Treatment: Persistent low-affinity IgG antibody populations, FcγRI expression on macrophages, local gamma interferon release, and T cell activation or clonal expansion. Treatment Options Immune supression ...

Yes, It's aiming at the long lived plasma cells and their precursor cells. With its bi-specific properties it's not only aiming at BCMA but also CD3 T-Cells. - That makes it more potent than Dara - it directly uses parts of the own immune system to clear cells - It goes deeper in tissue and is...

Do you remember what the NK-changes exactly are? - from the 4th slide, I can see that there are NK cell alterations - higher levels for CD-56 - with Long Covid and infection onset ME CFS patients (vs healthy controls)

Just trying to understand what you could imply here. You mean the responder ME-patients (with starting high NK cells) might : - have different disease mechanism vs non-responder ME-patients with low NK cells? - or maybe a different phase / phenotype ME ? - Or some immune comorbidity - others...

https://pmc.ncbi.nlm.nih.gov/articles/PMC10729190/?utm_source=chatgpt.com https://www.researchgate.net/publication/376520454_Daratumumab_for_autoimmune_diseases_a_systematic_review

As a background. These are the slides 2 numbers with graphs & figures so you understand what the Norwegians imply with the NK-correlation - I hope you can read them because slides are a bit vague / hazy interestingly practically all NK cells (of n=10) - went down < 50 - during 40 weeks - at 5...