Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

Without giving too much info, I'm all in on boosting Nk cells.... we shall what Anktiva does. I will definitely do a better job reporting than Julie for sure.

My ALC is 1000, basically borderline low and in line with some chemo patients. My NK is 6% of total lymphocytes and 62/ul. Very very low. So it needs something.

Not sure if the 5 covid infections I had in the past 2 years prior to ME had something to do with it..
 
Very uneducated question: if the Dara (or another drug) ends up working, who would prescribe such a treatment? In my experience, neurologists, rheumatologist, immunologist/allergist, and PCP don't really know what to do with me..... And I don't see an oncologist taking on a non cancer patient for a repurposed drug treatment.
 
ElephantNerd said:
Very uneducated question: if the Dara (or another drug) ends up working, who would prescribe such a treatment? In my experience, neurologists, rheumatologist, immunologist/allergist, and PCP don't really know what to do with me..... And I don't see an oncologist taking on a non cancer patient for a repurposed drug treatment.
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If Daratumumab proves to work I am pretty sure that rheumatologists would take it on. It would be a logical extension to all our other B cell treatments. Neurologists might but my impression is that academic interest in related fields has come more from the rheumatology sector, such as Versus Arthritis. I think I could get some of the UCL people to use it. But it would need to be clear that it worked.
 
Jonathan Edwards said:
If Daratumumab proves to work I am pretty sure that rheumatologists would take it on. It would be a logical extension to all our other B cell treatments. Neurologists might but my impression is that academic interest in related fields has come more from the rheumatology sector, such as Versus Arthritis. I think I could get some of the UCL people to use it. But it would need to be clear that it worked.
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Yes. I showed my immunologist the paper and the video and she said she is ok with it.
 
The thing I'm currently feeling trepidation about is the upcoming severe patient case study. If the severe patients with higher NK cells don't respond I'm going to find that difficult to cope with. Of course a handful of unblinded patients isn't exactly definitive proof but if they react like the responders in the pilot it will be a strong sign that F&M are on to something.
 
Jonathan Edwards said:
If Daratumumab proves to work I am pretty sure that rheumatologists would take it on. It would be a logical extension to all our other B cell treatments. Neurologists might but my impression is that academic interest in related fields has come more from the rheumatology sector, such as Versus Arthritis. I think I could get some of the UCL people to use it. But it would need to be clear that it worked.
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We really aren't ready for a drug to work. The bulk of patients can't get a diagnosis because there aren't services to do it and GPs wont read and follow the guidance and there is currently no one to send patients too who would do this, the existing clinics don't have the right people to deliver any treatments. Even if this was assigned to Rheumatology they have no experience recognising ME/CFS. The entire pipeline is broken from beginning to end, there is no pathway and no place to put that pathway easily to at the moment.

I think it would takes years for this to become available and then it would be only really available to a minority who had got private diagnoses that their GP had agreed to accept onto their records and refer them onwards and the few where their GP/ME service had diagnosed them officially. Until the guidelines are being routinely adhered to I don't see anyway most patients can even get into such a treatment even if they do know what they are suffering from and put into a pathway for this treatment. Every single stage of this needs extensive new training, across the entire country and there is not a single expert to teach them.
 
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BrightCandle said:
We really aren't ready for a drug to work. The bulk of patients can't get a diagnosis because there aren't services to do it and GPs wont read and follow the guidance and there is currently no one to send patients too who would do this, the existing clinics don't have the right people to deliver any treatments. Even if this was assigned to Rheumatology they have no experience recognising ME/CFS. The entire pipeline is broken from beginning to end, there is no pathway and no place to put that pathway easily to at the moment.
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Except that when Long Covid came on the scene clinics sprang up to 'deal' with it and Long Covid physicians and experts appeared out of nowhere. There was no treatment so it fizzled out but if there had been it would have been handed out all over the place. When Covid came along there were no vaccines but someone had the bright idea of using movel technology and we all got vaccinated.

Rheumatologists can learn how to recognise ME/CFS in an afternoon. It isn't hard. Yes, there will be argy-bargy about funding treatment on government health care systems but that will work through.
 
Utsikt said:
Just to prospect of getting lots of people off benefits and into the workforce should make the politicians prioritise it. Ironically, as soon as people start recovering, there will be more force behind the advocacy efforts as well..
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Totally agree. But if politicians followed logic on ME/CFs I think the world would already be pretty different for us ahah.

tho i guess in this guess its high reward for little waiting so things are better
 
ryanc97 said:
Without giving too much info, I'm all in on boosting Nk cells.... we shall what Anktiva does. I will definitely do a better job reporting than Julie for sure.

My ALC is 1000, basically borderline low and in line with some chemo patients. My NK is 6% of total lymphocytes and 62/ul. Very very low. So it needs something.

Not sure if the 5 covid infections I had in the past 2 years prior to ME had something to do with it..
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I find it interesting that low NK cells pop up here in this discussion as a charchateristic of ME/CFS. When I referred to an overview paper in another thread that pointed to the main issue in the immune system in as a problem with NK cells when discussing HHV-6B theory as the driver of ME/CFS it seemed that everyone here believes that there wasn't a problem with the NK cells – not at all.
 
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Reading through this discussion where everyone seems to believe that the cause of ME/CFS is autoimmunity I wonder whether there is a problem with people with undifferentiated connective tissue disease being misdiagnosed with ME/CFS.

Main symptoms are severe fatigue and fever. A problem with the T-cells is thought to drive the illness.

Undifferentiated connective tissue disease - Wikipedia

en.wikipedia.org en.wikipedia.org

Does anyone know whether it was ever discussed that there could be such a problem with misdiagnosis between these two illnesses?

I have only recently heard for the first time of UCTD. It looks pretty similiar to ME/CFS and I have never read anywhere that it should be understood as a differential diagnosis.
 
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PageofME said:
I find it interesting that low NK cells pop up here in this discussion as a charchateristic of ME/CFS. When I cited a overview paper in another thread about HHV-6B possibly driving ME/CFS it seemed that everyone here believes that there wasn't a problem with the NK cells.
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Define «problem with the NK cells»?

I think Fluge and Mella hypothesise that NK cells are relevant for the response to Daratumumab, specifically that a positive response is dependent on a high NK cell count. That doesn’t have to mean that there is something wrong with the NK cells themselves.

It could also mean that high NK cell count is just correlated with something else that’s relevant for the Dara response. So we don’t even know if NK cells are directly relevant, assuming that the observations replicate in ResetME (where you’d expect a very high response rate because high NK cell count is an inclusion criteria).
PageofME said:
Reading through this discussion where everyone seems to believe that the cause of ME/CFS is autoimmunity
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Immune-mediated doesn’t have to mean autoimmunity. Are people talking about autoimmunity specifically?
PageofME said:
I wonder whether there is a problem with people with undifferentiated connective tissue disease being misdiagnosed with ME/CFS.
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Maybe if someone thinks ME/CFS is just chronic fatigue? That would give a lot of false positives for ME/CFS.
 
Utsikt said:
Maybe if someone thinks ME/CFS is just chronic fatigue? That would give a lot of false positives for ME/CFS
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Often people with ME/CFS were originally diagnosed with CFS criteria that are broader and have an emphasis on fatigue. Now CFS is also more and more called ME/CFS. Nowadays the Canadian Consenus Criteria are the gold standard. But so many patients have been diagnosed before that shift in perception and definition of ME/CFS.

I have a friend who has had a CFS diagnosis, which has now transformed to an ME/CFS diagnosis. However, even though her fatigue is much more debiliating than mine (moderate-severe) she could go on working remotely for many years and has just stopped recently. At the same time I don't recognize ME/CFS main symptoms like flu-like feeling, sore throat, atypical headache, neurological problems in her at all.

Will talk to her now!
 
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