Seanko
Well-Known Member
In the world of ME/CFS, you are never far away from controversy. An article has been published on Science Based Medicine site about the use of Rituximab which certainly stirs the pot. It looks at the results of the Norwegian study of the drug and known safety concerns about its use.
Chronic Fatigue Syndrome: Rituximab Revisited
Perhaps most inflammatory is the accusation that Bay Area clinician Dr Kogelnik misused the medication on Whitney Dafoe (the son of Stanford Researcher Ron Davis) which resulted in Whitney having a severe relapse.
The claims are based on posts on a forum.
[article]Whitney Dafoe was a world-traveling photojournalist until 2009 when he started to develop crushing fatigue, dizziness, GI problems, joint pain, and weight loss (down to 115 pounds on a 6 foot 3 inch frame). According to a news article his disease has now progressed to where he can no longer talk, read, eat solid food, or use the Internet, and rarely gets out of bed. Dr. Kogelnik was the one who made the diagnosis of CFS. Whitney’s father, Ronald Davis, is a researcher affiliated with Kogelnik; the research seems to be mainly focused on identifying possible biomarkers for CFS and looking for an etiology.
Whitney is featured in a video that also features Dr. Kogelnik and his Open Medicine Institute. He posts as “Whit” on the Phoenix Rising forum. In December 2012 he was able to write an articulate, coherent post. He apparently was started on rituximab by Dr. Kogelnik in January 2013 and rapidly went downhill. By April he posted “Can’t read much now…”
In September he posted a disjointed message saying he was worse since starting rituximab, and complaining of throat swelling, apnea, and sleeplessness. He says “CFS also wrse[sic]. I can’t talk. Can’t type/text enough to communicate. Haven’t had a conversation with someone in 8 months…”
By November 2013 he was no longer able to post for himself. He had his caretaker post “I am now 99.99% bedridden and can’t go to a dentist. I have serious sleep apnea that wakes me up in the night unable to breathe, and seriously disturbing my sleep…” According to more recent posts, he can’t tolerate his sister being in the room or even his partner who used to lift him from bed to stretcher; the only people who can care for him are his parents.
I want to stress again that I don’t have all the facts, but I can’t help but wonder if this unfortunate young man might have developed cognitive and other neurologic problems due to PML triggered by the rituximab. If nothing else, I think we can assume that the rituximab didn’t help him. He thinks it made him worse, and he may be right.[/article]
Chronic Fatigue Syndrome: Rituximab Revisited
Perhaps most inflammatory is the accusation that Bay Area clinician Dr Kogelnik misused the medication on Whitney Dafoe (the son of Stanford Researcher Ron Davis) which resulted in Whitney having a severe relapse.
The claims are based on posts on a forum.
[article]Whitney Dafoe was a world-traveling photojournalist until 2009 when he started to develop crushing fatigue, dizziness, GI problems, joint pain, and weight loss (down to 115 pounds on a 6 foot 3 inch frame). According to a news article his disease has now progressed to where he can no longer talk, read, eat solid food, or use the Internet, and rarely gets out of bed. Dr. Kogelnik was the one who made the diagnosis of CFS. Whitney’s father, Ronald Davis, is a researcher affiliated with Kogelnik; the research seems to be mainly focused on identifying possible biomarkers for CFS and looking for an etiology.
Whitney is featured in a video that also features Dr. Kogelnik and his Open Medicine Institute. He posts as “Whit” on the Phoenix Rising forum. In December 2012 he was able to write an articulate, coherent post. He apparently was started on rituximab by Dr. Kogelnik in January 2013 and rapidly went downhill. By April he posted “Can’t read much now…”
In September he posted a disjointed message saying he was worse since starting rituximab, and complaining of throat swelling, apnea, and sleeplessness. He says “CFS also wrse[sic]. I can’t talk. Can’t type/text enough to communicate. Haven’t had a conversation with someone in 8 months…”
By November 2013 he was no longer able to post for himself. He had his caretaker post “I am now 99.99% bedridden and can’t go to a dentist. I have serious sleep apnea that wakes me up in the night unable to breathe, and seriously disturbing my sleep…” According to more recent posts, he can’t tolerate his sister being in the room or even his partner who used to lift him from bed to stretcher; the only people who can care for him are his parents.
I want to stress again that I don’t have all the facts, but I can’t help but wonder if this unfortunate young man might have developed cognitive and other neurologic problems due to PML triggered by the rituximab. If nothing else, I think we can assume that the rituximab didn’t help him. He thinks it made him worse, and he may be right.[/article]