Looking Ahead to obtaining Rituximab Treatment

[heapsreal]

Also there appears to be no advocacy base in NZ. As far as I can see our national ME organisation takes a.... 'softly softly' approach not a lobbying or confrontational one. I'd happily add my voice if there were more pushy people but I don't feel like I can take a national leadership role.

Happy to be proved wrong if there are activists and I just haven't heard about them.
OTH

I cant remember his name but a dr/prof who is running research studies in me/cfs, his interest is because his daughter has ME.

Another option for testing is to fly over the ditch and see the guys at griffith uni on the gold coast. Its quite possible in the near future they may run some treatment trials??

 

[daisybell]

I cant remember his name but a dr/prof who is running research studies in me/cfs, his interest is because his daughter has ME.

Another option for testing is to fly over the ditch and see the guys at griffith uni on the gold coast. Its quite possible in the near future they may run some treatment trials??

I think you are right about Griffith probably being the first to offer treatment...am hoping they will pursue Rituximab sooner rather than later. Fingers and toes crossed!

 

[heapsreal]

I think you are right about Griffith probably being the first to offer treatment...am hoping they will pursue Rituximab sooner rather than later. Fingers and toes crossed!

The gold coast researchers have spoken about the Norway researchers and rituximab.

These gold coast uni people are also only an hour down the highway from the Brisbane griffith uni where another researcher is treating MS with good results by improving Tcell function with particular vaccines. I hope they are both talking and sharing notes on their findings??

 

[OverTheHills]

I cant remember his name but a dr/prof who is running research studies in me/cfs, his interest is because his daughter has ME.

@heapsreal that is Prof Warren Tate, mentioned above. Alas he seems interested in fundamental not treatment research.

And yeah, Griffith seems like a possibility. I'll keep my eyes open.
OTh

 

[Tired of being sick]

Has anyone here been recruited for this study?
Sponsor:
Haukeland University Hospital Norway

What I do not understand is that this is a US government website while study is in Norway

A service of the U.S. National Institutes of Health


B-cell Depletion Using the Monoclonal Anti-CD20 Antibody Rituximab in Very Severe Chronic Fatigue Syndrome

Conditions: Chronic Fatigue Syndrome; Myalgic Encephalomyelitis
Intervention: Drug: Rituximab

 

[deleder2k]

It is a federal US site which shows studies around the globe.

Yes, I have been. But not sure if they want me or not. Will know in a week or two. If you have any questions about the study feel free to ask.

Best regards from Norway

 

[Tired of being sick]

Does this trial accept US citizens/around the globe?

Or is the study just Norway citizens?

 

[rebar]

Deleder what markers are they looking for inclusion in the study or, has it been determined the markers
or sub groups receiving the most benefit from rituximab?
best of luck on being being chosen, kind of like winning the lottery.

 

[deleder2k]

They won't accept US citizens. The study will last for two years, and you would probably have to live here the whole time. At least the most of it. Only Norwegians allowed.


ME/CFS by the Canadian criterias for more than 2 years. Mild form of ME requires 5 years since onset.

They told me that the group that didn't respond as well as the others were those with a severe degree of ME. I.e those who are bedridden, or almost bedridden.

 

[NK17]

They won't accept US citizens. The study will last for two years, and you would probably have to live here the whole time. At least the most of it. Only Norwegians allowed.


ME/CFS by the Canadian criterias for more than 2 years. Mild form of ME requires 5 years since onset.

They told me that the group that didn't respond as well as the others was those who suffer from a severe degree of ME. I.e those who are bedridden, or almost bedridden.

Good luck man, I'm thinking about you everyday and crossing my fingers that you'll be selected and put ME into remission.
Looking forward to brighter days for all PWME, everywhere in the world.

 

[deleder2k]

I'm in! On Monday I went to the hospital for a gastroscopy for the sub study to check whether Rituximab helps with IBS symptoms. This week I am wearing a Sensewear armband to track how many steps I walk every day, it also measures skin temperature and some other stuff. Not sure when infusions start, but I guess it won't be many weeks.

 

[OverTheHills]

Congratulations! Good luck!

 

[NK17]

I'm so happy for you!
Now I will cross my fingers for you to be in the Rituximab arm of the study .
Can you explain what is the sub study on IBS?
Mella and Fluge really seem to be looking at the whole spectrum of disturbances which are part of ME?!

 

[deleder2k]

Another department at Haukeland University Hospital wanted to see whether Rituximab removes IBS symptoms or not. That is why they're doing a gastroscopy. They did a biopsy so they could analyse it. I guess they will do another one in a year to see if there's any change. They really don't know what to expect yet, but according to the Rituximab study, it had an impact on all ME symptoms.

 

[catly]

Wonderful news @deleder2k. Crossing my fingers that all goes well for you!