Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

[Utsikt]

Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
(saw and copied post X from @ME/CFS Science Blog )

You can sign the petition here:

Sign the Petition

Call for Funding a New Clinical Study on Daratumumab for ME/CFS

c.org

Thank you to the creator for sticking to the facts in the petition. It makes it a lot easier to sign!

 

[V.R.T.]

It's bizarre to me that they don't see this. Ditto the UK and SequenceMEs potentially.

Is there any way we can better make the case for this kind of funding to those in power? I know people are trying and I'm not disparaging their efforts. It just seems like we need a breakthrough to convince them to fund a breakthrough, which is a catch-22 if ever there was one.

 

[Yann04]

For what its worth with the simple fact the ME community seems to really be the most “out” in the UK. Like that seems the country with the most awareness.

I have had lots of influence from the UK over the past couple years. I mean I spend time here where a large chunk of people are from the UK similarly my bsky feed is full of UK people ahah.

So there definitely is a thing to the “influence” that could be “bought” by being a leader in ME.

I’ve noticed that I’m engaging more in german than I would usually simply because there is a large germanophone activist community.

(Meanwhile in French my native language there doesn’t seem to be much comparatively).

 

[Sasha]

Do we have any idea how many patients have already been enrolled and have begun treatment?

 

[Utsikt]

Do we have any idea how many patients have already been enrolled and have begun treatment?

I have not seen any, other than that the first have started the injections.

Maybe we’ll get an end of year-update this month?