The internet is rife with bad information, some of it dangerous. This is not news. Unfortunately autism is a hotbed of bad and sometimes dangerous information. Unfortunately, in an attempt to revive the XMRV/autism link, Kent Heckenlively of the Age of Autism blog is creating a new, dangerous conclusion: perhaps Rituximab (or a similar drug) could be an autism therapy.
In XMRV (HGRV) is Not Dead – The Rituximab Story Mr. Heckenlively writes once again about XMRV.
Promoting XMRV as causative in autism is nothing new for Mr. Heckenlively. Continuing this promotion, even in the light of serious negative results (here, here, here, here) is not new. The promotion of medical treatments which are based on a misunderstanding of autism is nothing new to the Age of Autism blog. So why write about this instance? Rituximab is really serious medicine.
Serious adverse events, which can cause death and disability, include:
Severe infusion reactions
Tumor lysis syndrome, causing acute renal failure
Hepatitis B reactivation
Other viral infections
Progressive multifocal leukoencephalopathy (PML)
Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
Here’s the “logic” behind Mr. Heckinlively’s article: XMRV has been linked to autism (he ignores the more recent data against this idea). XMRV has been linked to chronic fatigue syndrome (once again, he ignores the data which goes against they hypothesis). Therefore, autism and chronic fatigue syndrome must share some sort of link. In this case, a small study has been published which claims that Rituximab helped a number of patients with chronic fatigue syndrome.
One of the many glaring problems in this train of logic is the fact that the researchers in this particular study looked for XMRV in their subjects. And didn’t find it. So, the link between this group of CFS patients and autism, tenuous as it was from the start, is basically absent. This does not deter Mr. Heckenlively:
The question of why rituximab’s depletion of B cells helps those with chronic fatigue syndrome/ME remains unexplained. The researchers specifically noted they had searched for XMRV and not found evidence of its presence, but that touches on the greater issue of whether the currently validated test for XMRV is accurate.
Yes. Since there is no logical connection between this study and autism, we should question whether the test for XMRV is accurate. Are there inaccurate XMRV results? You bet. That’s what got a lot of the CFG (and autism) must be linked to XMRV story going.
Prometheus discusses this in Don’t use GMO’s to Treat Autism!! (at least not this one). Including a link to the study Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study which is at the heart of Mr. Heckenlively’s story.
Let’s remind ourselves of that story: XMRV (HGRV) is Not Dead – The Rituximab Story . Yes, he’s trying to use the Rituximab study to promote the link between XMRV and autism. Even though the patients in the Rituximab study didn’t have XMRV! Mr. Heckenlively takes a stance that is quite familiar: the “I’m just posing a question and promoting dialogue” idea:
I can’t say I’m a fan of rituximab. It’s a drug that comes with a black box warning, meaning it can cause death. But what has been revealed about the etiology of chronic fatigue syndrome/ME, and possibly autism, may be truly remarkable. Other, less toxic medications which supposedly do much of the same thing are on their way to market. I’m not suggesting any solutions in this article.
This is the same tactic used, over and over, by David Kirby (author of Evidence of Harm and formerly a frequent contributor to the Huffington Post) in promoting vaccines as causing autism, mercury as causing autism and chelation as a cure. He was “just promoting dialogue too”. Thankfully Rituximab isn’t available without prescription like many chelators.
In case you think Mr. Heckenlively’s disclaimer is enough to distance himself from promotion of this as a potential therapy, here are a couple of excerpts from the comments to that piece:
It makes sense that Rituximab would have dramatic results in autism. But there might be much less risky ways. Also, how about long term results? Maybe what is the root cause of the B cell dysfunction is still there after a Rituximab treatment and the whole cycle will start again as the B cell population builds up again.
Great article, thanks. I agree with your conclusion, and some of the comments below. While Rituximab is a very expensive and a very powerful drug with black box warning – in other words not something to be considered lightly (unless maybe the person is severely ill and all other options have been exhausted), it is GREAT to have some solid pointers at last, a mechanism to target with softer, safer means.
No. Seriously, no. It doesn’t make sense that Rituximab would have results in autism, dramatic or otherwise.