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Just google it or read Alalush's comment. You're claiming it can't cause MECFS; then n=1 from member alalush is enough to refute that claim. (whose Sjogrens was missed for 6 yrs thanks to the fact that 61% of MECFS patients dont have their SSA measured, even). You can even check his Twitter and...

Not superior. But MECFS is a set of symptoms? Sjogrens is defined from immunological profile and is multi-systemic, check the formal definition and disease activity scales. ONE part of symptoms is attack to the nervous system, it is known to cause many autoantibodies, B cells hyperactivity -...

This is 5+ years old, recently, there has been more research, especially with the formal inclusion of SFN on Sjogren's disease activity scales. Neurologic involvement frequently preceded the diagnosis of SS (81% of patients). https://pubmed.ncbi.nlm.nih.gov/15342972/ Neurological...

They have Sjogren's, giving symptoms of PEM, MECFS... as Sjogren's is higher in hierarchy and can cause many neuropsychiatric complications. They DONT have MECFS as a 'comorbidity'. Why are you claiming that while Sjogren's is documented and known to cause very severe neurological conditions...

Sorry, but I find these nuances of PEM ridiculous because it's all arbitrary definitions that even 2 MECFS patients among themselves can't agree on and basically comes down to biological proof of what ME is, so once you have that, we can discuss the differences. Until then you're equally wrong...

We should look up how do ophthalmologists define dry eye, pretty sure it's by low tear on Schirmer and that even if you don't feel issues (like myself) you are advised to use eye drops, like I was, to prevent corneal damage.

sorry but you're also gaslighting here Sjogrens' patients. No, Sjogrens fatigue is not deficiency of iron, I have enough friends with PEM who haven't left their homes for a DECADE, due to PEM, SFN, dysautonomia, and YES, they have positive SSA, salivary gland biopsy and salivary ultrasound (in a...

" Nobody much on this forum has sicca syndrome as far as I know, " = I think this is unfair to claim without measuring their tears and saliva, right?

LOL, so what is causing PEM in Sjögren's patients who have PEM? Can you provide proof that Sjögren's doesn't include symptoms of PEM? The research is also pretty consistent that neurological involvement of Sjogren's can precede sicca by a decade.

I just explained it so many times, and I think who wants to know will find out. There are patients with MECFS who even have positive SSA, and still think it's not Sjogren's. Sometime,s providing proofs is wasting my time. It is also concerning that in this Poll 61% (or more) weren't even...

Just google : CFS, Sjogrens, GPCR, muscarinic antibodies, SFN, POTS. I mean the overlap is well recorded. With LC and Sjogrens there is interesting research in mice where 4 of 6 LC mice met Sjogrens criteria based on tear gland biopsies too. I am not following last years much of the research but...

Basically, numerous scientific papers

They use it frequently in SLE, various neurological autoimmune illnesses, SjD (which is what huge % of 'MECFS' patients actually have anyway)

It is not clinically useless; there are many conditions where rituximab has not been proven as an effective treatment, and the subgroup for which it works is not identified, and they just give it to everyone because it still helps some %.... until they have better guns.

but then again this is from CAR-T BCMA-CD19, the drop of SSA-ro60 (ro52 graph looks very similar) is so slow here too.. . Why? are these LLPC so hard to reach and kill? (around 90 days B cells came back ) teclistamab is only 16 weeks follow up, perhaps the same might happen is it possible...

Jonathan Edwards, what do you think about the results from the teclistamab CD3-BCMA bispecific recently published like SLE case report (NEJM paper link) and pSS, IIM, RA and SSc (all had ILD). Do you think it could "reset" B cells memory in the same way as CAR-T (hopefully) does? It seems that...

Maria Leandro's talk is the one I'd be most curious about, too. How do I choose between CAR and bispecific?

@Jonathan Edwards, will you go? https://hartleytaylor-registration.co.uk/docs/CARKprog.pdf

Definitely sounds like Sjogrens! I agree that you might be typical MECFS just more work up than the average patient. Most have ANA measured only once and dismissed for years You can also apply for Zheijang University trial (YaKe brand), if your Sjogrens is confirmed, but not sure if CNS...

lower IgG correlates with response because less active disease easier to treat?