Jonathan Edwards
Senior Member (Voting Rights)
Two relapsed at B cell repopulation at 6 months. Those that didn't either remained completely well or improved further to be well.
Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al
Belgian Twitter guy is my best friend, I know him for 10 yrs, he has MECFS from SJogrens, it's one of symptoms he has PEM and he was very severe housebound for 10 yrs. I shared his steps recently on other forum. I don't know have they been posted here, I'll share again
Those who read any papers ever on Sjogrens know that it can cause MS, MG, CIDP, GBS, and a number of other neurological conditions like POTS and obviously PEM/MECFS.
So if you think saying that Sjogrens is able to cause MECFS threatens identity of MECFS (why don't MS or GBS patients feel that way?), you can say he has a mystery illness that causes him to be able to walk 200-300 steps a day for a decade, and if he pushes for more, he is exhausted, even crashing for weeks (I remember he forced-walk in 2016 few days and then took 6 weeks to even improve a bit and got herpes reactivation). But cool, don't call it MECFS.
OrganicChilli
Senior Member (Voting Rights)
Doesn't mean Sjögrens caused anything. If he has ME/CFS who knows what the trigger was.
V.R.T.
Senior Member (Voting Rights)
I hadn't heard this - can Sjogrens really cause MS?
From your description it does sound like your friend has MECFS. What I find frustrating is people saying that 'we know x thing causes MECFS' without good evidence. I've not heard about MECFS being triggered by an autoimmune disease before. Perhaps they were triggered by the same infection?
I'm not completely dismissing it but I'd never heard that before
The trigger for all symptoms he has was 4 vaccines in a row, over 1 month, in 2014.
I am not sure why you think it's not clear what symptoms Sjogren's is causing for him; it is pretty much mainstream medicine by now. It seems on this forum, the scientific data that you haven't had time to read is considered not true, as if it doesn't exist.
Why would you hear about it? Do you regularly read medical journals on neurological involvement in Sjogren's?
I don't see a problem with saying Sjogren's is causing symptom X, MECFS is a symptom, a cluster of symptoms, for now.
V.R.T.
Senior Member (Voting Rights)
So the same trigger seems to have caused the MECFS and Sjogrens. I've heard of that happening after covid too.
Perhaps there is a clue in the fact they sometimes appear together
V.R.T.
Senior Member (Voting Rights)
MECFS is a syndrome not a symptom.
OrganicChilli
Senior Member (Voting Rights)
I didn't even say anything about symptoms. I said you don't know that another illness triggered his alleged ME/CFS.
Of course if you think ME/CFS is a symptom you're so misinformed that I can't help you.
Jonathan Edwards
Senior Member (Voting Rights)
It would be a mistake to call it ME/CFS if there are documented autoantibodies like Ro or La because it would then be very unlikely that any response to a B cell related treatment could be usefully extrapolated to people with ME/CFS (without the autoantibody). And the whole point of diagnostic categories is to extrapolate prognosis.
MECFS, SFN, and others are common symptoms of Sjogren's. Unfortunately, until we know what MECFS is, nobody can prove their point.
for example, Sjogren's is known to cause NMOSD too, but it's so so rare, probably as rare as MECFS, but diagnosable, that most MDs won't think of wheelchair and going blind from Sjogren's, because it's basically an exception. Maybe that is the case for a subset of Sjogren's patients with MECFS presentation.
He doesnt have always Ro, in most labs it's negative, in some positive. Just like me. Although his case of Sjo is more clear. And his PEM is much bigger than mine.
From what I remember, Sjogrens is listed as possible comorbidity to MECFS so you can have both diagnosis. For me, it's what I said, it's just another presentation that might be very rare.
ryanc97
Senior Member (Voting Rights)
I mean the guy tweeted he is weightlifting again. And he is not fully recovered. So by definition, it can't be ME/CFS as any person with ME CFS can only weight lift if they don't have ME CFS. Or, he is fully recovered. Or, it is minor weights like overhead pressing a 2kg dumbell and not deadlifts and squats of bodyweight.
ryanc97
Senior Member (Voting Rights)
Why would I? There is no viral persistence. but no, whether my NK cells were 60 or 450 I felt literally the same.
Is this a new definition? There is a subset of patients that have severe difficulty lifting their hands above their head, etc. But this seems to be a subset—I don’t have this, for example.
Jonathan Edwards
Senior Member (Voting Rights)
Well, we know all about lists of co-morbidities with ME/CFS.
That is a pretty sure sign of make believe.
ryanc97
Senior Member (Voting Rights)
No this is common sense, nobody with ME/CFS can do a deadlift and not get worse unless they don't have ME/CFS anymore lol. Maybe he is lifting those 2kg rubber dumbells.
No this is common sense, nobody with ME/CFS can do a deadlift and not get worse unless they don't have ME/CFS anymore lol. Maybe he is lifting those 2kg rubber dumbells.
Isn't your big hope dara will cure MECFS? Perhaps it happened to Aubry but now that it did, ... he doesn't have it? Telling someone this after 11 years of their life spent housebound is a bit too much.
What about LHS, she also lifted weights and climbed 3600+m mountains in her remission from cyclo+rituximab?
Well, we know all about lists of co-morbidities with ME/CFS.
That is a pretty sure sign of make believe.
You can have Sjogrens and schizophrenia, or ITP, SLE, Parkinsons..etc, but ME/CFS nope? maybe only on this forum, indeed.