A Little Background
The Norway Rituximab story is an incredible one. Olav and Mella, two Norwegian oncologists find that several Chronic Fatigue Syndrome (ME/CFS) patients unexpectedly improve dramatically after giving them Rituximab for cancer. Amazed at the effects of this two-disease-for-one package, they act – get together a small study – and then a larger one after that. Then they go for the big bucks; a large rigorously designed trial that would tell us, no if’s, and’s or but’s, just how effective this drug is in treating ME/CFS.
Visions of an effective treatment for a considerable number of patients dance in the ME/CFS community’s heads.
Talk of other Rituximab trials comes from Europe, the US and Australia but Rituximab is expensive, dreams are not, and a year after half after the publication of the last study, no major trials are underway and frustration reigns.
With the big medical establishments in the US sitting on their hands once again, it’s back to little Norway where a fiercely committed advocacy community is getting good signals from the government until…earlier this year, to their surprise and dismay, funding is denied for the big Rituximab trial.
Crowdsourcing Effort Begins
All is not lost, though. Money has been allocated for part of the study and Fluge and Mella are raring to go…Enter successful Rituximab ME/CFS recipient, Dr.Maria Gjerpe and friends at MEandYou. Dr. Gjerpe’s personal stake for herself and others drives her; she returned to health after being bedridden for decades. They’re going to use crowdsourcing to raise the money for the trial themselves in 90 days.
Why 90 days? Because that’s how long Dr. Gjerpe figures she probably has until she relapses since, with the last trial over, she’s now off the drug.
“A successful, large-scale trial of Rituximab would have an enormous impact on how the disease is perceived and a huge knock-on effect on research” said Dr Gjerpe. “It would be a major breakthrough and a change maker in this field”.
Isn’t that the truth? For all this talk about new definitions and biomarkers the easiest and least expensive way to redefine ME/CFS and get credibility and more funding, etc., etc. is to have successful Rituximab trial. Want to change this disorder at warp speed? A successful Rituximab trial would change our standing overnight…Nobody knows that the trial would be successful but by god it’s worth a try…
The goal: money for a $1.8 million, 140 patient ME/CFS Rituximab trial by June 6th. The Norwegian government has pledged $688,000, thus far MEandYou has raised $107,000 and a there’s about $1,000,000 left to go..
There’s no chance of losing your money if the study doesn’t work out; the funds will not be used until there’s enough money to conduct the study.
I have both ME /CFS in addition to stage 4 n.h. chronic lymphoma.I have had 6 infusions of rituxan & do not feel any better .
That’s unfortunate. No one drug will ever do it for ME/CFS for the simple reason that this is a very heterogenous. I think a success rate of 30-40% showing significant improvement would probably be good for any drug. We can’t expect too much. Even well defined illnesses can have multiple drug options. Good luck with both disorders. I hope the Rituxuan helped with the lymphoma.
Blair, you mentioned that you have received six doses of Rituxan , may I ask over how many weeks? I hope you start feeling results soon.
I think that rituximab can help for CFS patiënts with (high titers) EBV infection. EBV ”lives” in B-cels. It is a verry agressive medicine. I would not try it.
67 procent responded in the first trial. That is a lot!
I think anybody who is very ill will want to try this medicine.
Let’s all donate for the larger trial!
Really interesting Cort, thanks!
Given your interest, I think that you (and the other readers here) would be really interested in some recent research that I have come across that theorizes about crowds and such similar phenomena.
It’s called “The Theory of Crowd Capital” and you can download it here if you’re interested: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2193115
In my view it provides a powerful, yet simple model, getting to the heart of the matter. Enjoy!
Thanks! I am interested in this.
I have dealing with CFS for 16 months. I have been on Imunovir for a year with no improvement. I am starting Rituxan this week and will post the results here.
I had my first Rituxan infusion 6 June 2013 in Miami. It started at 9AM and finished at 2PM. I had a mild reaction about 15 minutes into it but that was dealt with by stopping the IV and pushing a second dose of Benadryl. The infusion rate of Rituxan was resumed at a very low rate and gradually increased.
I was very tired afterwards but couldn’t sleep. I ate a nice late lunch and then chilled in my hotel room. At 6PM I am ready for a good dinner and a good night’s sleep. I go back to see the doc in the morning and then back to Cayman.
I had to pay out-of-pocket $8,500 before they would administer the drug. My insurance from Cayman has indicated they will reimburse me 100%.
Knee deep in the water
North Side, Grand Cayman
The day after my first Rituxan infusion: still having mild reaction to the infusion. I saw my doctor and he prescribed OTC Benadryl to reduce the swelling and itching.
Day 2: Totally exhausted after traveling MIA to GCM.
Has anyone else taken Rituxan that can comment on it’s effects? This is day 4 after infusion #1 and I still feel sick, weak & crashed.
Day 6 after 1st infusion and side effects starting to subside.
Day 7 was rough but I feel really good at day 8.
20 June and 2nd infusion. Not as bad as the last.
Brain, thank you for detailing your experience. I will keep checking to see how this works out for you. Best of luck!!!
4-5 July: Crashed again. Can’t get out of the house.
Good luck Brian…thanks for keeping in touch. I guess we can’t much this early. Hang in there!
Had a “mini” stroke today… Whatever that is.
uh oh – was that diagnosed by a doctor? What happened?
My wife found me “unresponsive” at about 15:00 Friday and called 911. I woke up in the ER about 22:00. Finally released at 01:00 Saturday. The ER Dr.’s diagnosis was a mini stroke.
3 August. Two months since first Rituxan infusion (6 and 20 June). I’m feeling very good for the past 3 days. I’ve been fly fishing all three days. July was a horrible month though. Hoping things are on the upswing. My doctors advise that the next infusions will depend on how I feel. No metric has been developed yet to estimate the frequency of infusions.
16 September 2013. Four days since infusion number three. I am still feeling the side effects that last for the first few days to a week. Prior to the infusion, I had a really good week. Infusion number four is scheduled for 26 September. I have been contacted by only one person that is thinking about going on Rituxan. No contact from anyone that is or has been on it. Seems like this blog may be in vain but I will keep posting to document my experience with this drug.
I’m sitting in the chair for infusion #4. I have been feeling well for several days. I hope this is the last infusion.
It’s been 19 days since infusion #4. This is the worst I have felt in a long time. I have been bed/couch-bound for the last week.
Sorry to hear that Brian. Could this be expected? Is it possible this is a good sign (or is it a bad sign) What does the doctor say about this? Good luck and thanks for keeping us informed. How long have you been taking it now?
One month since infusion #4 and I don’t have any remarkable or positive news to report. I’m feeling worse.
Six weeks since the last infusion of Rituxan. The last three days have been very good. I’ve gotten out to go shopping, went for a leisurely walk, and went to Sunday brunch with the entire family. My fatigue and brain fog have been minimal. Hopefully this trend will continue!
Another great day. I hope this is the last time I have to crawl out of the cellar!
Thanksgiving holiday was challenging but I have been very well for five days in a row.
Hello Brian! I hope you see this as I would love to know how you are feeling now since in the UK we are fundraising for a Rituximab trial and Norway are due to begin their confirmatory trial now it’s January 2014. I really hope it’s been a success for you. Happy New Year and fingers crossed for 2014!
I had my best month in Jan 2014 but so far Feb has been a real downer. I don’t think the Rituxan did much good for me.
Sorry to hear that Brian, but thanks for reporting in. How long have you been on the drug now?
It’s been eight months since my last Rituxan infusion. I can’t say it really helped me. I’m still very sick most of the time. This is the last post I will make on this blog.