The Rituximab Story: not evidence for XMRV and NOT a potential autism therapy
Posted Oct 31 2011 3:14pm
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 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.
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.
THE ONLY WAY I COULD SEE THAT THIS MEDICINE IS WORKING IS IT IS REDUCING INFLAMMATION IN THE BODY AND POSSIBLY JOINT ARES JUST LIKE IT HAS IN R. ARTHRITIS...THE REASON I AM FOCUSED ON THIS ISSUE IS ALSO BECAUSE I KNOW FROM DR CHARLES STRATTON HOW C. PNEUMONAIE LIVES FOR SWELLING/INFLAMMATION AREAS IN THE BODY AND I AM ALSO THINKING THAT IF THERE IS SOME TYPE OF SWELLING IN THE TOP OF CFS PATIENTS SPINES THIS MEDICINE COULD MAKE PEOPLE FEEL BETTER BY REDUCING IT BUT I CANNOT SEE THIS BEING ANY NEAR A CURE FOR ILLNESS AND NOW THEY TALK ABOUT CONTIUE DOSES OF MEDS FOR THESE PATIENTS...I HAVE SAID EARLIER I HAVE HAD A MAJOR RESPONSE WITH PREDNISONE AND ASIDE FROM A CORTISOL MEDICINE IT ALSO WILL REDUCE SWELLING AND YES IT DOES SUPRESS AN OVER ACTIVE IMMUNE SYSTEM WHICH IS THE CASE IN CFS...I DO KNOW A DOCTOR WHO COMPLETELY RECOVERED FROM CFS WITH HIGH DOSE PREDNISONE/OSCAL/VIT D 50,000 I.U. AND I HAVE NOT BEEN IN TOUCH WITH HIM FOR AWHILE SO I DO NOT KNOW IF HE IS STILL FULLY WELL OR SICK AGAIN...THE REASON I SAY THIS IS HIS THOUGHTS WERE THEN THAT THERE WAS A MISSED COMMUNICATION BETWEEN THE BRAIN AND THE IMMUNE SYSTEM AND THAT BRINGS ME TO THIS RECENT PAPER AND ALSO ONE OF 2005...THESE RECENT ONCOLOGISTS SAID THAT THEY THOUGHT SOME NON RESPONDERS HAD 'ORTHOSTATIC INTOLERANCE' AND THAT COULD BE VERY HIGHLY LIKELY BUT I ALSO THINK OTHER PATIENTS OF THIS STUDY HAD THE SAME THING WITH ORTHOSTATIC INTOLERANCE AND I WANT TO RAISE THIS ISSUE NOW BECAUSE I REALLY WANT ALL DOCTORS/SCIENTISTS TO SEE THIS WORK BACK IN 2005 WHEN THEY TALK ABOUT CHIARI TYPE 1 MALFORMATION AND/OR STENOSIS...PUNCH THIS IN GOOGLE SEARCH 'NEURALLY MEDIATED HYPOTENSION 2005' AND THIS SHOWS EXACT DETAILS ON EXACTLY HOW TO PERFORM PROPER PROCEDURES ON XRAYS OF SPINE/NECK AND ALSO THE MRI PROCESS AND EXACTLY WHAT TO LOOK FOR AND ALSO INPORTANT WHY IT IS MISSED...IS IT POSSIBLE THAT CFS/FIBROMYALGIA IS ACTUALLY MISDIAGNOSED CHIARI OR STENOSIS AND ALSO BECAUSE IT IS ALSO SOMETHING THAT PEOPLE COULD BE BORN WITH THEN ALSO IS IT POSSIBLE THAT AUTISM IN SOME CHILDREN IS ALSO MISDIAGNOSED AND IF THIS IS THE CASE COULD C.PNEUMONAIE ACTUALLY MAKE CHIARI/STENOSIS 10X WORSE FROM SWELLING AND IS IT A POSSIBILITY THAT CFS/FIBRO OR EVEN AUTISM NOT AUTO-IMMUNE SYSTEM DISORDERS WHERE AS THE IMMUNE THINKS THERE IS AN INVASION GOING ON AND ALL ALONG IT IS THE SWELLING AND ALSO SPINAL FLUID NOT MOVING LIKE IT IS SUPPOSE TO BE AND I KNOW FOR A FACT THAT JOHNS HOPKINS HAVE SEEN PATIENTS RETURN FOR NORMAL TILT TABLE TESTS AFTER UNDERGOING NEURO SURGERY PROCEDURES AND BLOOD PRESSURE RETURNED TO NORMAL...ONE THING THAT IS SURE WITH CFS SYNCOPE ATTACKS CAN LAY PEOPLE OUT FOR DAYS, WEEKS AND EVEN MONTHS...ALL THIS TIME RESEARCH HAS STILL NOT FULLY PUBLICLY SAID AN INFECTION IS A DEFINITE CAUSE BUT IT IS VERY PLAUSIBLE THAT THERE IS SOMETHING GONE WRONG IN PEOPLES NECKS AND IT IS ALSO 'CONGENITAL'....
MLV viruses infect B cells. So this fit the human gammaretrovirus hypothesis for ME. HGRVs will also cause automimmue symptoms.
Evidently Aidan Walsh has a disorder that constitutively expresses CAPS LOCK and suppresses expression of Return Key.
The reason there may be an overlap in treating autism like CFS or vice versa is that drugs that dampen the immune response may help with both conditions. As a twenty-five year sufferer of CFS I can tell you the only way you will get any relief from this horrible illness is to start treating it like an autoimmune illness like lupus, which is what CFS is; an immune system in overdrive. Calm the immune system with medications that suppress the immune response and the symptoms of the illness will lessen. Things that stimulate the immune response of CFS sufferers will also exacerbate their symptoms.
I look at CFS as an autoimmune/neuroimmune disease and perhaps that's what autism is too. What works for one condition might help with the other. I am not sick in the conventional way that people think of illness. My body is actually over-performing which can make you feel just as bad as one that is under-performing.
Is it an infection or a reaction? Is it is an infection that your body can’t defeat and you become weak and frail, or is your body over-reacting to everything; sending out an immune response that is too strong causing inflammation, irritable bowel, pain, flu-like symptoms etc. A strong immune response can make you feel just as bad as a weak immune response. They are opposite problems, but produce the same type of symptoms. People who are experiencing an over-response of the immune system feel just as bad, just as sick (autoimmune diseases, allergies, anaphylaxis), but don’t look as sick because their problem is not caused by a suppressed, poor-functioning immune system (cancer, diabetes, hiv/aids), but one that is performing too well.
We all cannot be as perfect as you are 'annie belle'...Do you not have better things to write...Having a bad day today or is it that time of the month...