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.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.