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They should get all the money for their trial.

He replied to me and said they will create an English version. Fingers crossed.

@Utsikt I've emailed them using the contact button on the fundraiser's homepage, but haven't heard back yet. Do you mind sharing the relevant email addresses so I can follow up next week?

Probably in 2028/2029. https://clinicaltrials.gov/study/NCT06952478?term=daratumumab&viewType=Table&rank=4

@Utsikt said a biosimilar is already in the works. This is probably what you were referring to. And this was just announced yesterday! Unfortunately, it will take 2 years... Celltrion Enters Phase 3 European Trial for Darzalex Biosimilar Celltrion announced on Sept. 1 that it has received...

The composition-of-matter patent for Daratumumab expires in March 2026, but the patent for Darzalex (the subcutaneous version), expires in the mid-2030s.

I don't have brain fog or OI, but I have problems with visual processing. Watching TV or switching tabs on my laptop causes symptoms almost immediately and put me into PEM territory within an hour. I basically can't tolerate anything with flashing images. Scrolling horizontally on my phone is...

Thread here: https://www.s4me.info/threads/amatica-patient-centred-chronic-disease-research.40877/

Maybe also one for Twitter folks to share? @Tom Kindlon @ME/CFS Science Blog @wigglethemouse @dave30th @Adam pwme @DMissa https://innsamling360.no/innsamling/vis/195?&returnUrl=%2FInnsamling%2F

I've just checked out the fund's Facebook page and it's all in Norwegian! Is this a small charity with little fundraising experience? Translating their website into English is a lot of work, but surely the Facebook page should contain posts in two languages? I'm sure they're doing their best...

Do you remember where you saw that by any chance?

I can no longer edit my original post so I'm making changes to the second fact sheet here. Post-exertionelle Malaise (PEM) Übersicht Nach körperlicher oder geistiger Anstrengung erleben Betroffene mit ME/CFS Episoden, in denen eine ausgeprägte Verstärkung aller Symptome stattfindet. Dies...

From the fundraiser: They've hired Rook Irwin Sweeney LLP

A fundraiser for "Medical care for ME now". https://www.crowdjustice.com/case/justice4me/ Endorsed by Sarah Boothby on Bluesky:

A previous discussion on butyrate: https://www.s4me.info/threads/deficient-butyrate-producing-capacity-in-the-gut-microbiome-is-associated-with-bacterial-network-disturbances-and-fatigue-2023-guo-lipkin-et-al.23117

Yes and I think this is a fairly standard question for disability benefits assessments actually. Here in the UK it's less than 20m, less than 50m or less than 200m if I recall correctly. But for our purposes something open ended is better.

Yes, this is so much better than pure step count! And it's also why I can walk much more when I'm at home because I only walk short distances. But 500 steps all at once even if it's the only walking I do in a day? That's going to give me PEM. Especially because I used to be a fast walker so I...

But the same goes for time spent laying down, doesn't it? Eg @Verity needs to add up their 10 min rest periods.

I'm not sure about that. I think this will only apply to those with OI, but won't tell us much about everyone else. It can be added as an additional symptom, but it's not universal. I can sit upright all day long, but I can't watch TV and can't walk more than 1,500 steps while I'm at home and...

ZonMw Linking exercise limitation phenotypes to muscle abnormalities in ME/CFS using MRI and NIRS Reduced exercise capacity, exhaustion, muscle weakness, and post-exertional malaise (PEM) are characteristic symptoms of ME/CFS. However, the causes are still poorly understood. Exercise tests...