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How to join and start a Rituximab trial

redo

redo

Senior Member
Messages
874
The authors behind Rituximab studies (Mella/Fluge) very much wants others to also do trials (and publish the results). And if you want to do be receiving Rituximab yourself, here's how one could go about doing it (please come with other suggestions if you have any!).

Contact your ME doctor, and ask if he/she would be interested in running a trial of 5 patients on Rituximab. The doctor could use the exact same symptom schemes as Mella/Fluge used. Next step is ethics approval for the trial, and funding. The ME doctor would be doing the ethics approval paperwork, and than you've got to think of some way to get funding. Personally, I think living with ME is torture, so I don't think funding (at least some of the cost) oneself would be something to rule out. Yes, it's expensive, but living with this disease is impossible, so... Other places to check for funding would be NGOs, government grants, etc.

Point is, if we want something to happen, we've got to make something happen. If you have suggestions for doctors who could be thinkable to do it, ways to get funding or other things, than please post.
 
Andrew

Andrew

Senior Member
Messages
2,517
Location
Los Angeles, USA
Interesting idea. I have routine appointments with an oncologist. I'm going to ask him if he is interested, or if he knows someone who is. Also, I'm trying to get an appointment with Dr. Chia, and maybe he would be interested. What worries me about him, though, is he said he treatment risks an auto-immune response. It is beyond my thinking to understand how this ties in.
 
redo

redo

Senior Member
Messages
874
About the autoimmiune potential of the drug itself. The fact that it's been used in hundred of multiple sclerosis patients calms me about unforeseen events. Add to that that even more RA patients have used it. Both of those conditions have many similarities with CFS...
 
redo

redo

Senior Member
Messages
874
By the way, great that you're thinking about taking an initiative Andrew!
 
Sing

Sing

Senior Member
Messages
1,782
Location
New England
How about a group letter to be sent out to every doctor and researcher, every organization, we think might take it on? We could say we are willing to be part of the trial and can offer partial financial support towards the cost of the study. I'm sure we could come up with an intelligent letter and lists of recipients to send it to.
 
Nielk

Nielk

Senior Member
Messages
6,970
Sallysblooms,

Our condition is scary. Some of us are severely affected with practically no life. A scary drug that has potential to work is better than no drug at all.
 
Sallysblooms

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
I guess I just read some really awful stuff. Toxic meds can make things worse. More attention should be paid to supplements. But I am very careful of toxins with POTS since the nerves are involved.
 
Jenny

Jenny

Senior Member
Messages
1,388
Location
Dorset
Sallysblooms said:
More attention should be paid to supplements.
Click to expand...

A huge amount of attention has been paid to supplements in the treatment of ME. The supp manufacturers have been making a fortune out of us. I must have tried hundreds over a period of 30 years, and have no clear evidence that any of them have done me any good at all.

Jenny
 
jace

jace

Off the fence
Messages
856
Location
England
The Norwegian researchers addressed the problem of progressive multifocal leukoencephalitis (PML), they stated that it had only occurred on multiple drug treatment, and never on a monotherapy. Can't find the ref for this

In any case I think I'd chance a 500/1 fatal outcome and have a 60/40 shot at health than remain as I am. There's so much work that needs doing out there, and at present I am only able to look after myself (badly).
 
redo

redo

Senior Member
Messages
874
SpecialK82 said:
How about appealing to the manufacturer, Genentech? They have the profit motive.
Click to expand...

Yes! Good idea. Contact a ME doctor, contact the manufacturer, and see what you can make happen. I think they'll say yes. What remains is just to do it. The case study can be almost as simple as just dispensing the drug in a normal treatment setting, the only other thing the doctor have to worry about is giving you the symptom schemes, and writing about it once it's done... Easy as ABC.
 
redo

redo

Senior Member
Messages
874
Sing said:
How about a group letter to be sent out to every doctor and researcher, every organization, we think might take it on? We could say we are willing to be part of the trial and can offer partial financial support towards the cost of the study. I'm sure we could come up with an intelligent letter and lists of recipients to send it to.
Click to expand...

Yes, we should. And when this gets published it'll weigh even more than if it was sponsored by someone with self interest. I think we should do it, and we should do it now.
 
redo

redo

Senior Member
Messages
874
jace said:
The Norwegian researchers addressed the problem of progressive multifocal leukoencephalitis (PML), they stated that it had only occurred on multiple drug treatment, and never on a monotherapy. Can't find the ref for this

In any case I think I'd chance a 500/1 fatal outcome and have a 60/40 shot at health than remain as I am. There's so much work that needs doing out there, and at present I am only able to look after myself (badly).
Click to expand...

The most important safety risk is PML, and the chances are better than 999 of 1000 that it'll not happen. I've read that it hasn't happened in monotherapy the first year. More about safety concerns is written in this thread: http://forums.phoenixrising.me/showthread.php?2621-Rituximab-a-Possible-XMRV-Treatment so let's discuss that there, so we could keep this thread on topic :)
 
C

crmfghtr

Messages
11
Anything is better then this sickness. This is the first thing I have seen that absolutely makes sense to me. The only thing is how many years do we have to wait before its something they will freely give us? I honestly think I will be dead before something actually gets done. By the time clinical trials are done, approval, and our doctors are willing to do it, how many more years do we have to wait? I have been waiting 15 bloody years, I lost a prominent career after 20 years of hard work. I can never go back now its too late for me. How many young people will lose careers and marriages etc because the process will just take so long. Im feeling very bitter today sorry despite this good news lol
 
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