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

[Utsikt]

Yes, there is a post where ME/CFS is compared to lupus somewhere above (Too tired to be able to find it again)

That might have been what’s covered in this long thread

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!

CCC requires PEM. If someone doesn’t have PEM they’d probably not get the diagnosis today.

But the criteria aren’t that important because we don’t actually know which symptoms that are key in ME/CFS because we don’t know how it works. I’d be more concerned about missing treatable conditions, and if the plausible ones are excluded - does it matter if it’s X or Y if you can’t do anything about it anyways?

There is a thread about missed diagnoses here.

To be honest, I have no knowledge at all about the immune system.

I barely do either and whatever little I learn seem to be gone the next day..

 

[PageofME]

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.

That sounds awful. In Switzerland the situation is different. If you're still able to leave the house and are able to stand your ground in front of a dismissive doctor and bring a copy of a document teaching the state of the art of diagnosing and managing ME/CFS you will find a GP sooner or later who will help you get diagnosed. Either they do it themselves. It's not difficult. Or, if they prefer, they will send you to a specialist. A list with specialists is regularly updated by our patient advocacy organisation. The list has been growing fast over the last couple of years.

If you're too sick you need someone who advocates for you. But they can achieve the same for you, I suppose.

 

[PageofME]

At this point my hunch is that the cell count indicates the dysfunction level as well. So you really need a high count or boosted NK cells to get something out of Dara.

To me this is the case because the doses are small compared to MM dosing where they can do like weekly Dara over the course of 6 months. So in theory the NK cell effect might be more important because of the small dose whereas in MM the amount of Dara thrown at the patient just ends up working.

What makes it even worse is that Covid has shown to impact lymphocyte function. So those with repeated Covid infections in the trial probably might have poor NK cell function overall despite enough counts. And that could confound things.

Now if only they decided to boost NK cells via Anktiva for patients before giving them Dara....

Could you present a link to the study or studies that show what kind of lymphocyte damage Covid induces, please?

 

[PageofME]

Be careful about boosting NK-cells.
I think I don't get the flu-like symptoms when in PEM because of low NK-cells.
I won't try boosting the cells unless it is proven to be helpful; if and when treatment becomes available.

May I ask whether you have ever felt flu-like during an acute episode at all? Are you now severe and the flu-like feeling got weaker the more ill you got?

With which criteria have you been diagnosed? I wasn't aware that you can get a diagnosis without a flu-like feeling as the main symptom of illness episodes in the first place.

PEM is required indeed and a very important charachteristic of ME/CFS because it can be clearly distinguished with it from other diseases. However, PEM is not a primary symptom. It rather points to the fact that the main symptoms like a flu-like feeling, a sore throat, an atypical headache, neurological dementia-like symptoms, exhaustion get worse after exertion or that overexertion (relative to baseline) leads to a flare-up of these symptoms.

How would you characterise your main symptoms? Which concrete symptoms get worse after too much exertion?

 

[Kitty]

I wasn't aware that you can get a diagnosis without a flu-like feeling as the main symptom of illness episodes in the first place.

I don't think it's necessary for diagnosis, and not everyone gets 'flu-like symptoms in PEM. It's clear from discussions here that the most prominent symptoms of PEM vary quite a bit between individuals.

 

[PageofME]

I don't think it's necessary for diagnosis, and not everyone gets 'flu-like symptoms in PEM. It's clear from discussions here that the most prominent symptoms of PEM vary quite a bit between individuals.

Indeed, it is not required in the CCC. Although in such a case you have to present autonomic and endocrine symptoms both alternatively to fulfilI the criteria.

I am curious to know more about the symptoms of people without flu-like symptoms because I doubt that I have the same illness with the same pathomechanism as patients who do not experience a range of symptoms from what's called the immune symptom group of the CCC. Feeling flu-like with a sore throat, tender lymph nodes ect.

When I rest well immediately from the start of a flare-up and manage to keep the episode really low intensity – and without having it going up to the brain to provoke inflammation feeling in the frontal lobe – I can't distinguish ME/CFS from a cold. It's only when I get up and do too much after the symptoms have subsided and provoke a relapse by overexertion (PEM) that I understand that it's an ME flare and not a cold.

So for my group the immune symptoms are the lead symptoms and all the other required main symptoms fatigue, problems with sleeping and pain followed only when for some time at the height of my illness (before diagnosis and information on energy management) I was a lot worse and had my first two episodes of 2-3 months and later with only learning to pace had one relapse after another in very short time.

I think that this is a very interesting discussion because I was convinced from my first episode that I had a form of a herpes reactivation because it felt so similar to HSV-1 reactivation. And now I have a herpes drug that I use during a severe episode to avoid more brain damage that suppresses all my symptoms fully. Thus I can not only prevent more brain damage but also damage to the eyes. The more severe my ME/CFS episodes the more severely I get inflammed vessels in the eyes which then often burst (typical also for herpes eye infactions). My eye sight has rapidly deteriorated over the first years of the illness with a pathological development that my optician told me was normal for 60 years old. I had just turned 40.

I find it interesting that there are at the same time other patients who believe that their illness can impossibly be caused by a virus and compare their disease experience to an autoimmune disease like lupus. Time will tell but I think that maybe there is a fundamental problem with the CCC that they still allow that different diseases are conflated.