Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

Eleanor said:
Four syllables correct out of five isn't bad, I suppose ;)
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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.”
 
EndME said:
There's currently quite a few ME/CFS clinical trials. The Charite regularly runs trials, @Mebfeb has an ongoing trial, Simmaron is doing some stuff and others are active as well. I don't think one has to worry about things not working out if there is actually positive data. Currently people are running trials whilst being in the dark, I'm pretty sure they'll all happily turn on the lights if they could. Patient recruitment will always be a problem but I'm not sure if there is much one can do about that right now or at least not on the basis of anything that is dependent on Fluge and Mella's work.

I guess "physican led services" is a UK-centric viewpoint (or what would the Charite considered to be)? I thought the problem was that it's hard to get one genuinely interested person invested to run an ME/CFS-clinic and possibly that might take a positive phase 2 trial or other genuinely useful data? At least I don't think that any of that discussion should be dependent on Daratumumab and I don't think one can get anyone smart invested on the basis of the current Daratumumab data.

In short: if you try to get people interested on the basis of the Daratumumab data you'll likely get the wrong kind of people.
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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.
 
Sasha said:
I'm really thinking about the day that, for example, a drug is revealed in a trial as successful for ME/CFS. If that happened today, I'd like to know what would be stopping us all from getting the drug tomorrow - so that we can knock those obstacles down. Yes, in the UK, the NHS would be managing it, but it would be doing it from a standing start, with a country full of useless BACME clinics that don't even see PwME after first diagnosis. Maybe the NHS has a ready-made mechanism for roll-out in this situation - but maybe it doesn't. And if our decades of neglect has left us in a position where we need to make sure the NHS is ready to provide something extra to get us to the starting-blocks, now's the time to think about it.

I just don't know what's involved. You may be right that we can do nothing, but I don't want to get to Drug Day and find out that we should have spent years campaiging for something!
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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)
 
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