Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital
- Thread starter Kalliope
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- cd38 daratumumab norway resetme
OrganicChilli
Senior Member (Voting Rights)
Four syllables correct out of five isn't bad, I suppose
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 naming rules to -tumumab.
So the “mu” you see in daratumumab is actually the “u” (human) joined to the surrounding syllables — it’s not the old “-mu-” that meant “mouse.”
Jonathan Edwards
Senior Member (Voting Rights)
I don't think mu ever meant mouse for monoclonal. About the only rodent therapeutic (pre-chimeric) I know of was Campath -1 and I don't think the codes came in until we had the xi for chimeric as in rituximab? Mu was always humanized.
Yes it’s uk centric as a term because in the uk the only services are psych-ot or physio services neither of which could safely start prescribing or doing any of those medical treatments
And the new implementation plan seems to be putting me/cfs under ‘neighbourhood services’ which wouldn’t be hospital or even necessarily GP based
We need a term that differentiates the professionals/clinicians that don’t ’do Medicine’ in the sense of doctors or nurses and couldn’t prescribe or deal with side-effects dosages or comorbidities vs physios,psych, ot being confused under that and whilst they might see themselves as valid for ‘add ins’ and what they ‘believe’ their cfs concept is can’t actually do anything regarding setting up medical care that involves real medical treatments that involve safety and don’t even have yellow cards as part of their profession etc
It feels like we are potentially being pushed to new places further and further away from doctors in order to keep us from (ie ‘manage us’) as pseudo-medical patients who only get sent to the pseudo system and the push feels like it’s potentially even the view of some that once defined as psychosomatic that being the case for everything for ‘those patients’
So those examples of other illnesses that have gone before us that didn’t have good treatments but did have clinical departments and GP knowing it was real and recording it then ‘rolling out’ as potential treatments came thru that worked for different segments of types of those illnesses is a very different starting point.
And I’m scared all those who are most severe then just battle to try and even have their diagnosis or existence even acknowledged . As we all know in the uk because they were told cfs can be recovered from with CBT then even if it was recorded on someone’s note and that was accurate and done properly (I say this as it was used as a dumping bucket and because, politics again, there is belief from some that ‘some have x and others have y’ etc) then they think if people didn’t go back for years to a GP who at best couldn’t offer anything then it just have ‘recovered’ not that they’ve been ill all this time.
Whilst it rolls out at best to the newly diagnosed.
And who other than those who are the illest themselves are going to be fighting for them whilst the newly ill or less severe have their own battle/priorities to access it, and the illest still carry the stigma and notes suggesting all sorts. But also are very ill and have their own battle most risk and other fragility that might make medics wary of working with etc.
Plus they don’t know how to accommodate or even understand the illness when it’s more than mild.
Are these things infusions or tablets or could even be taken at home or need hospital. And what about observation particularly if someone is already in very fragile health how would someone who doesn’t know what to expect from the illness even before adding in a new medication is going to have to be the default. District nurse teams or GP wouldn’t necessarily even before adding familiar
I just worry the illest get the usual ‘too hard box’ and to cover it up/cognitive dissonance issue there ends up being a lot of another round of spiel about lost causes and/or too ill and/or don’t know enough about what they actually have (severe me seems to be being disappeared into suggesting fnd etc)
Sasha
Senior Member (Voting Rights)
They could have just called it daramab and done everyone a big favour!
ryanc97
Senior Member (Voting Rights)
just had a thought. Is it possible to get other researchers (eg Davis, Prusty) in on researching CD38/plasma cells or things related to this trial?
Like a collaborative effort. Given this trial is a good discovery…. It would make sense for researchers to all team up and work together rather than go their separate paths…
Like a collaborative effort. Given this trial is a good discovery…. It would make sense for researchers to all team up and work together rather than go their separate paths…
Kitty
Senior Member (Voting Rights)
I guess it depends what they're in the middle of, and whether they could just change their focus? (They may have funding or academic agreements in place to be doing something else.)
But there are probably other meds that could be thought about. The thalidomide drugs raise everyone's neck hairs, but in ME/CFS it shouldn't be hard to find a small female cohort for a proof of concept trial who're at zero risk from them.
Is there any reason to think they would be helpful in terms of their mechnism? Or is it just that they are used for multiple myeloma?
I think it would be really good if some labs could look at CD38 so we have a better understanding of the evidence base by the time of the results.
I think Chris Armstrong posted that he planned to do some more work in that area the other day.
Kitty
Senior Member (Voting Rights)
Anti-CD38 action, I think, though they're also used in cancers other than myeloma. But at one time, some of these drugs were all that were available.
Sasha
Senior Member (Voting Rights)
Yup, I won't be troubling a maternity department anywhere.
I think that’s still gonna be a hard sell whatever for anything related to thalidomide isn’t it?
Jonathan Edwards
Senior Member (Voting Rights)
I don't think these on their own are going to achieve much. As far as I know they do not relate to CD38.
Kitty
Senior Member (Voting Rights)
They still seem to be thought useful in combination therapy (a relative took thalidomide about five or six years ago), but of course with cancers it's often older people who're not at risk of having an affected pregnancy. But if J says they're not specific enough anyway, there'd obviously be no point.
jnmaciuch
Senior Member (Voting Rights)
Sorry to jump back so far in the thread--is there another thread where these figures have been discussed in-depth? Or an appropriate thread to put some thoughts related to them? I feel like the discussion on these preliminary results has been strewn across so many threads I can't keep count
I've been looking at the same thing that Sasha pointed out here, as well as the NK cell numbers, and wanted to see if some points had already been discussed
OrganicChilli
Senior Member (Voting Rights)
The thread discussing the paper is https://www.s4me.info/threads/plasm...-clinical-pilot-study-2025-fluge-et-al.44736/, but we also had some NK cell discussions here https://www.s4me.info/threads/long-...ory-similarities-between-cfs-and-lupus.45936/
jnmaciuch
Senior Member (Voting Rights)
Ah yes I did see the reply just didn't realize it was in this thread. I had a response to that but didn't get it in before the thread went off in a different direction. I suppose I'll move the discussion to the thread discussing the paper?
Thanks!