How to join and start a Rituximab trial

[redo]

Ohh, that's just the top of obsurdity. No trials before more trials. If it wasn't so tragic, I'd laugh about it.

There's a saying which goes "If an expert says it can't be done, get another expert". If you have some rheuma symptoms sandralee, perhaps he could give it to you on that indication?

About funding (in general), many hospitals and professors have a pot they can use for purposes they see fit. If you're in a country where insurance doesn't pay, but the state does instead, chances are present the hospital could just dispence the drug free of charge, the doctor apply for ethics approval, and perhaps publish. In some cases the doctor could give the drug without any ethics approval as well, on account of considering it to be beneficial for the patient, when no other options are present. The main point, IMO, is not publication. The main point is being allowed to try if one wants to try.

 

[Andrew]

It is absurd. Scientists know that to confirm something, more than one research place has to find the same result. We don't know if there is something unique about CFS in Norway, and maybe this only words on one cohort.

Also, we don't have only one place in the world researching treatments for other widespread illnesses. Fluge and Mella have stated that they are a cancer research center that can barely provide resources to study CFS. They have asked for others to start researching this. So now it looks like the response is "tough luck, we are just going to refuse to help and let Fluge and Mella struggle along alone. And screw the patients.

This research cannot proceed in a meaningful way unless other people start working on this. IMO. what others need to do is 1. See if they can find improvement using the same method and 2. start working on variations of the treatment (with analysis) in collaboration with Fluge and Mella BEFORE publication so the protocol can be fine tuned and understood more quickly.

 

[Eucalypta]

That is a VERY interesting idea, to work with oncologists, and perhaps also immunologists who are already comfortable with major immune system modulations. But they would have to find this interesting. Perhaps the fact that ME/CFS patients are known cancer risks for some types of cancer? Would that make us relevant patients to them?

That we are at high risk for cancer, especially those of us who test high for EBV and CMV who have a 1000 fold higher chance of Lymphoma and/or Leukemia, is unfortunately a fact I personally have to deal with now.
A swelling appeared on side of my hipbone, thigh height. Low back, spinal cord pain and painful legs were always a part of my ME. office for TP injections yesterday he and his collega examined the swelling and an he made an urgent request to me to have a CT scan done asap. We did large amount of blood test right there at the office to check white cell count etc. Lymphoma was the first thing that came to his mind. To say I'm frightened is the understatement of the century. I always had this in the back of my mind with my high EBV test, that if a treatment not came quick enough I would run out of time. One of the treatments for Lymphoma is Rituximab, needles to say I would rather not.

 

[Andrew]

We know Rituximab is expensive, but how expensive? For example, the Norway study used two injections. So, it's not as if we are getting it often. I wonder how much this would cost. Anyone know?

 

[Snow Leopard]

Two injections is something like $5000 in Australia and then you have the cost of the two overnight hospital stays.

 

[Andrew]

That's much less than Ampligen treatment. Too bad it has such a high relapse rate.

 

[Snow Leopard]

The B Cell depletion effect of Rituximab only lasts something like 6 months, so the cost adds up...