The Rituximab Story: not evidence for XMRV and NOT a potential autism therapy

31 Oct

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:[22]

Severe infusion reactions
Cardiac arrest
Tumor lysis syndrome, causing acute renal failure
Infections
Hepatitis B reactivation
Other viral infections
Progressive multifocal leukoencephalopathy (PML)
Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
Pulmonary toxicity[23]

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.

and

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.

About these ads

17 Responses to “The Rituximab Story: not evidence for XMRV and NOT a potential autism therapy”

  1. AIDAN WALSH November 1, 2011 at 00:52 #

    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’….

  2. Greg November 1, 2011 at 13:28 #

    MLV viruses infect B cells. So this fit the human gammaretrovirus hypothesis for ME. HGRVs will also cause automimmue symptoms.

  3. Anne November 1, 2011 at 14:07 #

    Evidently Aidan Walsh has a disorder that constitutively expresses CAPS LOCK and suppresses expression of Return Key.

  4. Rachael November 1, 2011 at 15:20 #

    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.

  5. AIDAN WALSH November 1, 2011 at 17:35 #

    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…

  6. Julian Frost November 1, 2011 at 19:41 #

    Aidan,
    Writing a wall of text in all-caps makes you illegible, and leads us to ignore you. Paragraphs please.
    Secondly, please do not ask a woman if it is “that time of the month.” You just look like a sexist jerk.

  7. MikeMa November 1, 2011 at 20:13 #

    Aidan,
    CAPSLOCK makes the text very hard to read. It implies shouting and when used erratically indicates insanity.

    @Rachael,
    The article points out a bogus link between a potentially deadly drug and XMRV. XMRV has been blamed for many things including CFS for which the best current evidence says no link. If there is no link to CFS then there is no link to autism and no reason to use Rituximab for either condition. This is a link to ERV at scienceblogs who has written passionately about this (false) link.

  8. AIDAN WALSH November 1, 2011 at 20:47 #

    In 2003 the University of Hawaii published data on ciguatara in C.F.S. and said it is an auto-immune disorder and the N.I.H.and also C.D.C.did nothing. All those patients tested positive to this testing. Everyone is so stuck on XMRV/MLV hype and it never lets up and also this work from Hawaii has been replicated and that is what is called proven science… Until someone somewhere publishes otherwise replicated findings on so called XMRV/MLV hype it will still stay as contaminated findings which has already been shown by numerous researchers that is exactly what it is…The reason I type with capital letters is I am not the good at this and so that is my reason for doing it that way and not because i am yelling… also Anne’s comment i found offensive and that is why i lashed back and no i am definitely not a sexist when i remarked and i think a lot of you here are upset because XMRV/MLV hype is not going your ways so your responses are really knocking anything that favors what the research is actually saying that XMRV/MLV is not the cause…Science itself is very complex and it takes time but sometimes science can lead people down the complete wrong paths and this in itself is frustrating for everyone because they want immediate answers…If let us say XMRV/MLV is any cause then it has to be ‘replicated’ in science for it to be fully accepted…Hawaii marine biologists are top in the world and they are very smart because before they became published their work was already replicated for publication…To assume XMRV/MLV is any cause then i would love to see replicated science and published in a peer reviewed science publication…Remember also to assume is also made up of 3 words…How is my type form now and also i may add if i was sexist in my remark to Anne then i apologise fully here to her and also to all of you reading this posting…i am not perfect and we all make mistakes in life so do scientists on both side of xmrv/mlv ‘theories’…Everyone wants full answers but between Vanderbilt on c.pneumonaie and also Hawaii on ciguatara let us all pray that retroviruses play no role in these illnesses…

  9. Mary E Tormey November 1, 2011 at 23:35 #

    I do not think that Kent Heckenlively is prescribing Rituximab to anyone. He is just making connections that are not readily obvious to some, maybe he forgot a few of his sources, but I have seen lot of information linking Autism to and chronic fatigue and auto immune disorder. Doctors are responsible for the drugs they prescribe. This seems like a lame attempt at finding fault with an innocent blogger. Joseph Beiderman is a doctor who is promoting dangerous drugs for children and he has been paid a lot to do so. Children are being damage as we speak, by his actions. Maybe the writer should worry more about dangerous actions and less about “dangerous” opinions.

    • Sullivan November 1, 2011 at 23:53 #

      “I do not think that Kent Heckenlively is prescribing Rituximab to anyone”

      He’s a science teacher. Obviously he isn’t prescribing anything. Since that wasn’t an assertion I made, I don’t see why you bring that up.

      What he is doing, mainly, is attempting to keep the XMRV/autism idea alive. It’s clear in the title of his article. As fallout from that, he is putting the word out there that this drug, or a follow on to it, may be an autism therapy. That is clear in what he wrote and it is clear in how his readers responded.

      “He is just making connections that are not readily obvious to some”

      No. He is making connections that are obviously wrong. Clearly wrong.

  10. Prometheus November 2, 2011 at 02:17 #

    Greg:

    “MLV viruses infect B cells. So this fit the human gammaretrovirus hypothesis for ME. HGRVs will also cause automimmue symptoms.”

    Unless I missed something, there aren’t any human gamma retroviruses, apart from endogenous retroviruses; XMRV was to be the first human exogenous gamma retrovirus, but now isn’t looking as promising.

    Here’s another point – rituximab tragets the CD20 B-lymphocyte surface protein; this protein is present in all B-lymphocytes, but increases in density as the B-lymphocyte matures, so the highest density will be in the plasma cells (which is why it works against auto-immunity). The only way that rituximab could eradicate a retrovirus infecting B-lymphocytes would be to eradicate all the B-lymphocytes, including the stem cells, since the circulating virus (extracellular) would infect the new B-lymphocytes.

    AIDAN WALSH:

    “In 2003 the University of Hawaii published data on ciguatara in C.F.S. and said it is an auto-immune disorder and the N.I.H.and also C.D.C.did nothing.”

    Actually, the study -

    Hokama, et al. Chronic phase lipids in sera of chronic fatigue syndrome (CFS), chronic ciguatera fish poisoning (CCFP), hepatitis B, and cancer with antigenic epitope resembling ciguatoxin, as assessed with MAb-CTX. J Clin Lab Anal. 2003;17(4):132-9.

    looked at serum lipids and said nothing about CFS being an autoimmune disorder. The superficial similarities between CFS and ciguatera (ciguatoxin poisoning) are just the result of CFS having a large number of vague and non-specific symptoms.

    Ms. Tomey:

    “He [K. Heckenlively] is just making connections that are not readily obvious to some, maybe he forgot a few of his sources, but I have seen lot of information linking Autism to and chronic fatigue and auto immune disorder.”

    The problem isn’t that Mr. Heckenlively “forgot a few of his sources”, the problem is that there aren’t any sources supporting his claims that CFS is related to autism in any way or that XMRV is associated with autism in any way. If you’ve “seen a lot of information” about those “links”, it probably originated with Mr. Heckenlively himself.

    Prometheus

  11. Stwart Jenssen November 2, 2011 at 16:10 #

    Hi, um I’m still a teenager, and I know that fibromyalgia is most common in middle-aged women, but I have most of the symptoms, and from what I’ve read about emotional experiences and stress triggering the pain, it sounds pretty much like me. I think it’s possible that I have it, but everyone dismisses me and says its all in my head and to stop complaining, like I’m a hypocondraic or something. I was just wondering where you usually get the pain, I’ve had wide spread pain throughout my abdomen for over a year now but it seems to have picked 1 or 2 locations in particular – just under my rib cage on the left side and somewhere near my right ovary, can you compare that to what you experience so I can maybe get a better idea of what exactly it is that is causing the pain.

    Stwart jenssen
    Findrxonline.net

  12. ken November 20, 2011 at 23:29 #

    Rituximab might not be evidence of XMRV causeing autism
    but as someone who has aspergers mild Autism and a lot of very sick family members with ME the real story is a possible breakthrough for ME sufferers and an non psychlogical explanation for there disease .Norway now beleives its ME patients.
    .In my opinion the real news here is the important work of two well respected doctors in norway in ME .

    On Norway television station TV2, Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health said: “I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that.”

    ME patient advocate group the European ME Alliance (EMEA) claimed it was the first time a governmental health agency had made such an admission.
    Rituximab offers hope to ME patients

    Rituximab works by destroying B cells, the white blood cells that make antibodies. The results of the trial suggest that these white blood cells might be involved in causing ME.

    ME is characterized by immune disregulation and neurological dysfunction.

    A team jointly led by Øystein Fluge and Olav Mella at the Haukeland University Hospital in Bergen, Norway. discovered that rituximab might work against ME after seeing symptoms ease in a patient who had both lymphoma and ME.

  13. Greg December 11, 2011 at 18:15 #

    The viruses the Lombardi group discovered have been proven to not be XMRV/VP62. There is nothing about those viruses that that at this time is even xenotropic and the isolates are still to be fully sequenced. Rituximab depletes B cells and MLV viruses infect B cells. That does support the hypothesis that those viruses cause ME.

  14. mraidangwalsh January 22, 2013 at 00:54 #

    cause has been found now RADIATIONNNNNNNNNNNNNNNNNNNNNN…end of story truth coming out, lawsuits will prevail now with criminal and public enquiries heads will spin now,…Caps off…

Trackbacks/Pingbacks

  1. XMRV and Autism: Worst internet meme since Milhouse : erv - November 3, 2011

    [...] to do with autism, not even if you believe (in the absence of any data) that XMRV causes autism. The Rituximab Story: not evidence for XMRV and NOT a potential autism therapy Here's the "logic" behind Mr. Heckinlively's article: XMRV has been linked to autism (he ignores [...]

  2. XMRV and Autism: Worst internet meme since Milhouse [erv] | Digital Brain ; Science and Technology News - November 3, 2011

    [...] to do with autism, not even if you believe (in the absence of any data) that XMRV causes autism. The Rituximab Story: not evidence for XMRV and NOT a potential autism therapy Here’s the “logic” behind Mr. Heckinlively’s article: XMRV has been linked [...]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 954 other followers

%d bloggers like this: