Controversy on Rituximab

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]
 

Merry

Well-Known Member
For Harriet Hall to write about Whitney Dafoe and his family and Dr. Kogelnik in this way, based on supposition (gossip passed to her by a female Phoenix Rising member) is really shabby. She even offers Whitney's forum userid to the world. Geez. The gossip in me would certainly like to speculate on who that female Phoenix Rising member is. I'll refrain.
 

Seanko

Well-Known Member
@Merry Yes, our thoughts are primarily with Whitney & his family. The article is verging on libel for the people directly involved.
Fluge & Mella, the Norwegian Rituximab researchers, have been careful to manage expectations and have not included those with Severe ME/CFS in the current round of trials.

Forums can be very helpful places for help, advice & support but there is also an unpleasant side which can cause distress.
 

Merry

Well-Known Member
So he never actually said himself that he started Rituximab?
I read that Whitney did try Rituximab, but I can't remember who said that. His mother, Janet Dafoe, has posted information about his treatment on Facebook and on Health Rising. Or maybe Cort, who has, I think, met the family mentioned that Whitney tried Rituximab.
 

Merry

Well-Known Member
Why didn't she try other TNF-a inhibitors first?
If by "she" you mean Whitney, let me point out that Whitney is male. Or perhaps you mean his mother, Janet. I wouldn't know what has or hasn't been tried, and I wouldn't presume to advise the family and Dr. Kogelnik on treatment.
 

loki

Well-Known Member
Sorry i meant "he"...

i'm just curious because Rituximab is used for cancer treatment and does have side effects... it's used for AI diseases too but i ask myself why softer TNF-a inhibitors weren't used first. Like Curcumin for example.:eggonface:
 

Merry

Well-Known Member
Sorry i meant "he"...

i'm just curious because Rituximab is used for cancer treatment and does have side effects... it's used for AI diseases too but i ask myself why softer TNF-a inhibitors weren't used first. Like Curcumin for example.:eggonface:
No need to apologize. I mistakenly guessed that "loki" is a female name, then I checked your profile -- and Wikipedia. Whitney is so very ill that I can't imagine that curcumin could make a difference. I don't know what he may have tried in an earlier, less severe stage of illness. I can't think of anyone who has better access to medical care than Whitney does or more family support. If you are unfamiliar with his story and want to know more, check this video:

Other videos of family members speaking about Whitney are available at youtube, and Whitney's story is featured in the documentary "The Forgotten Plague."
 

loki

Well-Known Member
wow, he really seems to suffer... i just talk about curcumin because i too was bedbound for over a year and lost all hope and really thought about putting an end to this. And then i discovered Curcumin! It made me able to walk for hours and hours with no end! I had my mobility back! Thanks to this.. spice:woot:
I just think that prescribed drugs aren't inevitably better than O-T-C drugs. They are just O-T-C because serious side effects are not observed.:)
 

Merry

Well-Known Member
@loki, I'm glad that curcumin made such a difference for you. I haven't heard of anyone else enjoying such striking success with curcumin. I took capsules for more than a year and didn't see any difference at all. My best wishes to you for continued improved health. Please take care.
 

loki

Well-Known Member
Hmm, can you tell me how the Curcumin you took was formulated? Because that makes huge differences!
 

Merry

Well-Known Member
Hmm, can you tell me how the Curcumin you took was formulated? Because that makes huge differences!
I appreciate your enthusiasm, loki, but we're taking the thread off topic. Let's continue this discussion in a private conversation, or you can start a thread on curcumin.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Too much conjecture in that article! Suggesting malpractice based on conjecture like that is not good.

Whitney may have tried Rituximab - I don't remember - he's tried many things - all of which have obviously failed. I believe he had a very bad reaction to Probiotics which suggests he could have a bad reaction to almost anything. It's possible he did try TNF-a inhibitors, I don't know.

I imagine the Davis's are probably pulling out all the stops right now. What else can they do? Whitney is getting worse and worse. It's a horrifying situation.

Whitney is so fragile that the wrong thing could probably kill him. On the other hand he's so fragile that leaving him alone will probably kill him.

He's probably lucky - if you can be lucky in a situation like that - that he has doctors who are willing to treat him. He's kind of every doctor's nightmare - they could give him something that kills him...It's an awful situation for him, his family and his doctor.
 

Folk

Well-Known Member
Last time I heard of him he was feeling better with Ativan. It had cleared his brainfog, he was able to comunicate. It's in the Forgotten Plague page on Facebook.
 

loki

Well-Known Member
Regarding the bad reaction to probiotics, isn't that an allergic reaction to lactosis? Maybe he's gluten / lactosis intolerant and not aware of it.
 

Folk

Well-Known Member
Regarding the bad reaction to probiotics, isn't that an allergic reaction to lactosis? Maybe he's gluten / lactosis intolerant and not aware of it.
He's like the most famous ME/CFS patient in the world. You bet they already know if he has intolerance to lactose or gluten.
And when they mentioned probiotics I believe it was capsules, so without lactose there.
 

Snow Leopard

Active Member
Why didn't Harriet actually talk to (a) Janet or Ron about Whitney, before posting such anecdotes without permission and (b) actually talk to the Norwegian researchers to ask what other research is being done and why they did the open label studies instead of making wrong assumptions?
 

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