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Julia Yellow
Opinion / Viewpoint

Scientists must curb tendency to try untested treatments

by  /  12 May 2016
The Expert:
Expert

Matt Carey

Industrial researcher and parent of a child with autism

A large segment of the autism community is interested in research. As a parent of a child with autism, I pay attention to autism research for the simple reason that I’d like to see a better life for people with autism. Whether it is for finding residential placements for adults or improving diagnosis in underserved communities, research can provide information to help a community make decisions, and scientific papers can provide the support needed to advocate for change.

Consider behavior-based therapies, for example. In the 1980s, research support for these therapies fueled efforts to get schools to provide them and, later, for insurance companies to pay for them.

Pharmacological approaches have been less successful. Drug treatments for the core features of autism are, at best, in early-stage clinical trials, although basic research findings have provided leads for treatments. And yet press releases and news articles with quotes from enthusiastic researchers often trumpet the promise of these early-stage treatments.

In some sense, enthusiasm is a good thing. It tells us, the consumers, that researchers are in this to make an impact on the lives of people with autism. But researchers must also be aware that their research and positive words can be misinterpreted — and they need to try to prevent their misuse.

The problem lies in the fact that fundamental autism research is an investment in the future, but understandably, consumers would like to see solutions now. And there is a large community of doctors, among others, willing to tell parents that the latest preliminary finding means that we can start treatments now. Doctors may turn to these unproven approaches because of a lack of mainstream ones or because they already tend toward alternative treatments.

Radical remedies:

Sometimes a doctor might recommend starting off-label use of a drug candidate. In other cases, a clinician might prescribe a treatment regimen that bears little or no resemblance to the one used in research. I remember seeking advice from a nutritionist about a common concern: my child’s very limited diet. Although the nutritionist hadn’t seen, much less tested, my child, she told me during the consultation that my child was likely suffering from heavy-metal intoxication and I should consider chelation, a potentially dangerous approach.

Parents might seek alternative practitioners to help them implement an approach they saw in a news report. Or a parent might attend one of the autism parent conventions, such as held annually in Chicago, in which practitioners pitch alternative approaches in presentations styled as scientific talks. In a research conference, other researchers often challenge their colleagues on questionable data and ideas, but alternative practitioners tend to support each other at parent conventions, even if they disagree.

Consider these examples of legitimate research and the therapies they inspired.

In 2005, a team of researchers led by Carlos Pardo-Villamizar, a professor at Johns Hopkins University in Baltimore, reported finding inflammation in postmortem brains of people with autism 1. After news reports of this work came out, it created a buzz on autism parent discussion forums, and Pardo-Villamizar became “concerned that the study would raise a lot of controversy and be misused.” So his team published answers to frequently asked questions on the laboratory’s website. One of these clearly stated, “THERE IS NO indication for using anti-inflammatory medications in patients with autism.”

Undeterred, some doctors began treating people with autism (mostly children) with anti-inflammatories, including steroids and such potent drugs as Actos, which has a black box warning of side effects. On the website , which  promotes untested therapies for autism, contributing editor Teresa Conrick floated the idea that “eradicating” microglia, critical immune cells in the brain, might be an effective treatment for autism.

Fallacious franchise:

Others have fashioned treatments from the ‘extreme male brain’ theory of autism, which suggests that “autism can be considered as an extreme of the normal male profile,” according to British researcher Simon Baron-Cohen, who championed the idea 2. Baron-Cohen hypothesizes that elevated testosterone in the womb contributes to the development of autism.

Extrapolating from this proposed testosterone-autism connection, in 2006, doctor Mark Geier created what he referred to as the ‘Lupron protocol.’ Lupron is the trade name for a pricey ($5,000 per month) sex hormone suppressor that includes, among its uses, chemical castration and delaying puberty. Geier patented his idea and, at his peak, was operating clinics in multiple states and ‘franchising’ the idea to fellow doctors. The ‘Lupron protocol’ was a key factor in Geier losing his medical license.

Some ‘treatments’ have an even more tenuous connection to legitimate research. For example, at least one doctor reportedly used a blood-borne protein called Gc protein-derived macrophage activating factor (GcMAF) to treat children with autism, under the belief that the protein boosts the immune system. The idea was inspired at least in part by research on immune system differences in individuals with autism, but there is no good clinical data on GcMAF’s efficacy. Other so-called experts purport that chlorine dioxide, a compound used to treat drinking water and bleach wood pulp, can, when used as a drink or enema, by killing pathogens and neutralizing heavy metals, among other actions.

Researchers need to partner with the autism community to limit the spread of misinformation that supports potentially harmful treatments. An online source of information such as the one Pardo-Villamizar’s team set up was an excellent step, but one that clearly fell short.

Countering quacks:

Ideally, I would like to see the true autism experts challenge the people pitching these ‘therapies’ in person. Unfortunately, attending many of the less-scientific parent conventions is often impractical. Still, more legitimate autism conventions that focus on serving both individuals with autism and their parents would be great venues for researchers to not only discuss their work, but also to warn parents of faux treatments. Examples include conferences put on by the National Autistic Society, the Autism Society and, at least as important, local organizations and schools for children with autism.

In some cases, researchers should counter misinformation and warn against unproven treatments in the the scientific literature. In a 2015 paper in Molecular Psychiatry on the influence of steroid hormones in autism, Baron-Cohen and his colleagues made a comment about the therapy promoted by Geier (and his son, David) 3. “The androgen-blocker Lupron has already been inappropriately offered as a treatment for autism,” they wrote.

The comment was too little, too late. Published nearly 10 years later and buried deep in the discussion section of the paper, it would not have reached many parents considering the therapy. But a full and timely rebuttal of the Lupron protocol in a scientific journal might have had an impact, as many of the parents considering unsound therapies for their children read these journals.

Paul Offit, chief of infectious diseases at Children’s Hospital of Philadelphia, offers one model for successfully countering questionable claims for autism treatments. He took on many of the most dubious therapies in a book, “Autism’s False Prophets.” Of course, few researchers have the time to devote to such a project.

Protecting parents:

The press can also be an agent for good in this context, as it sometimes takes questionable autism therapies to task. In these cases, researchers should make an effort to cooperate with any journalists who reach out to them. The more experts who agree to be quoted in these stories, the better. A 2009 article in the Chicago Tribune discussed both the neuroinflammation and Lupron findings. The article quotes Pardo-Villamizar as saying, “People are abusing science for the treatment of autism.” And Baron-Cohen says in the story that the Lupron therapy “fills me with horror.” This article likely saved some people with autism from these ‘treatments.’

But even this article would likely not have come to be were it not for the exhaustive work of autism parent Kathleen Seidel, who thoroughly documented the exploits of the Geiers in a series of blogs published in 2006 and 2007. To publicize more such treatments, researchers could tip off journalists to any such misuses of scientific research that they learn about.

Community-researcher partnerships should focus on ways of improving the lives of those with autism, either through fundamental research, investigating potential treatments or even just by explaining the basic biology of autism. When findings simply suggest new approaches for treatment, researchers should make an explicit effort to counter the misuse of their results, whether through scientific journals, the media or by speaking directly to parents.

In the end, vulnerable parents and their children must be protected from therapeutic journeys like the one James R. Laidler, an anesthesiologist in Portland, Oregon, and his family took several years ago. “Looking back on my experiences with ‘alternate’ autism therapies, they seem almost unreal, like Alice’s adventures in Wonderland. Utter nonsense treated like scientific data, people nodding in sage agreement with blatant contradictions, and theories made out of thin air and unrelated facts,” Laidler wrote in a 2004 column on the website Autism Watch. “I now realize that the thing the ‘alternative’ practitioners are really selling is hope — usually false hope — and hope is a very seductive thing to those who have lost it.”

Matt Carey is the parent of a child with multiple disabilities, including autism. He is also an industrial researcher in computer hardware.


References:
  1. Vargas D.L. et al. Ann. Neurol. 57, 67-81 (2005) PubMed
  2. Baron-Cohen S. Trends Cogn. Sci. 6, 248-254 (2002) PubMed
  3. Baron-Cohen S. et al. Mol. Psychiatry 20, 369-376 (2015) PubMed
  • Fantastic article Matt. Will share this.

    • Nancy Pagoda

      What like the flu vaccine Flulaval that says on the insert, no robust trials have demonstrated a decrease in influenza disease with the use of this product.

  • Planet Autism

    “Some ‘treatments’ have an even more tenuous connection to legitimate research. For example, at least one doctor reportedly used a blood-borne protein called Gc protein-derived macrophage activating factor (GcMAF) to treat children with autism, under the belief that the protein boosts the immune system. The idea was inspired at least in part by research on immune system differences in individuals with autism, but there is no good clinical data on GcMAF’s efficacy. Other so-called experts purport that chlorine dioxide, a compound used to treat drinking water and bleach wood pulp, can, when used as a drink or enema, by killing pathogens and neutralizing heavy metals, among other actions.”

    At least you haven’t gone the way of the militant misinformers out there as regards MMS and GcMAF. Speculating or insinuating something is ineffective is very different from saying it is dangerous (https://planetautismblog.wordpress.com/2015/12/22/autistics-as-campaigners/) and there is evidence that GcMAF is effective with a significant number of people for a variety of conditions, MMS is being touted as “bleach” in scaremongering tactics whereas you correctly say, it is a solution used in water purification for drinking water. Lack of clinical data doesn’t mean something doesn’t work. As with anything, substances can be misused, whether prescription or not, in the wrong hands. Drinking too much water can kill you.

    • Matt Carey

      I appreciate you leaving this comment as it demonstrates one of the problems we face in the autism community–misinformation.

      To take on the simplest example: MMS is chlorine dioxide–which is a bleach.

      Just because it isn’t the same as laundry bleach doesn’t make it “not bleach.” A chemical used to remove color from fabric or other fibers is, by definition, a bleach.

      More importantly, the “evidence” for subjecting disabled children to this bleach is nonsense. It’s well crafted nonsense–crafted to appear to have some scientific basis. But nonsense. The main proponent of MMS for autism was asked by the state of Illinois to present her evidence or stop promoting MMS in the state. She signed an agreement to stop promoting in Illinois. That’s how strong the “evidence” base is for this.

      Disabled children are being subjected to twice daily enemas with this bleach. They pass the linings of their intestines and these are called “worms” or “parasites”. Even though the MMS proponents admit that parasiteologists don’t call them worms.

      Chlorine dioxide is used in water purification, true. But MMS proponents use that to downplay its misuse. In water purification one adds chlorine dioxide to water to kill bacteria and other living organism–but then one waits until the chlorine dioxide dissipates before drinking the water. That is clear in the instructions for water purification tablets sold in, say, camping stores. But that detail is ignored by MMS proponents.

      “. As with anything, substances can be misused, whether prescription or not, in the wrong hands. ”

      There is no proper use for chlorine dioxide bleach in the treatment of autistics. Any use is misuse.

      • Planet Autism

        If you have mistaken me for a proponent of either product you are, mistaken.

        However I do remain open-minded and I have read a lot about these products that conflicts with the hysteria and labelling of parents why try them as ‘abusers’.

        Look into the Red Cross cover-up of MMS curing malaria. There are lots of evidence videos out there about this.

        I’m not a scientist, but I know from what I have read, that the descriptors of MMS as a bleach is not only deliberate scaremongering, but sometimes accompanied by wrong descriptions of how it is supposed to work and what it actually consists of.

        Have a read of some other things:

        This explains everything about MMS and there is a woman on there talking about her autistic child: http://www.quantumleap.is/

        http://www.healingthesymptomsknownasautism.com/response-to-the-critics/

        “One of the biggest discoveries we have made is that there is a clear connection between autism and pathogens/parasites. This is something that some media reports have attacked us about especially aggressively. They say that what is coming out in the toilet are not parasites but rather intestinal linings. Hmmm… what about those moms who have seen live worms swimming in the toilet after their kid went to the bathroom? The book has plenty of pictures (in color in the free ebook). Have a look and see what you think!”

        A chemist has posted that sodium chlorite/Chlorine Dioxide (which is MMS) actually does work and she was attacked by a group against MMS: https://www.postwaves.com/posts/group/4092516432

        http://www.realrawfood.com/fda-data-proves-mms-kills-diseases

        https://www.facebook.com/FirstImmune/ and https://gcmaf.se/quality/test-of-our-gcmaf/

        https://gcmaf.se/immuno-biotechs-40-papers/

        http://www.mvariety.com/special-features/health-matters/80407-health-in-the-cnmi-cures-blocked-by-the-fda

        Just for some wider reading.

        • Matt Carey

          “Look into the Red Cross cover-up of MMS curing malaria.”

          I have. The claims made by MMS proponents are a hoax.
          http://www.ifrc.org/en/news-and-media/opinions-and-positions/opinion-pieces/2013/ifrc-strongly-dissociates-from-the-claim-of-a-miracle-solution-to-defeat-malaria/

          ” that the descriptors of MMS as a bleach is not only deliberate scaremongering”

          My Ph.D. is in materials physics. MMS is a bleach. Substances used to remove color (bleach) fabrics are bleach. Calling it “scaremongering” doesn’t change that.

          One can find many anecdotes about MMS “curing” autism. The main proponent of it says that she has “personally” seen over 100 such cases.

          Someone tested her claim. Sent her a fake anecdote. Which became one of her “personally” observed examples of cure.

          I’ve done not only wider reading, but more critical reading than you. I too have an open mind. Open enough to challenge false claims made by people selling fake cures.

          • Planet Autism

            Your arrogance amazes me. You have no idea of how much or which reading I have done based on a handful of links I have suggested for you. I thought Spectrum would be more discerning that allowing article contributors with such personal bias.

            Scaremongering is scaremongering, whatever the name of the product is. That is unscientific.

            If someone sent her a fake case history, she would only have acted in good faith I would imagine in believing someone to be genuine, (why would someone do such a thing) and without seeing the source of your claim, I cannot comment further on that. Sometimes people (especially if they are not professional writers) can unintentionally word things to read one way when that is not what they intended. Sometimes they have people writing things for them and things are lost in translation. You condemn people incredibly quickly.

            Natural lemon can be used as a bleach, but it’s non-toxic.

            You say you have an open mind, but show the entire opposite.

          • Matt Carey

            Calling a bleach a bleach is not scaremongering.

            If you feel I have mischaracterized the level of effort you have put into reading on MMS, I apologize. I will also point out that you stated “You condemn people incredibly quickly.” I do not condemn people nor do I reach my conclusions quickly. I do disagree strongly that one should be promoting a clearly fake “cure” like MMS using science-like arguments, as is being done. I do speak out against the use of this “cure” as it’s application is not only not beneficial, but harmful.

            Chlorine dioxide is used in industry as a bleach. It doesn’t get more simple than that. Calling a bleach a bleach is not scaremongering.

            “If someone sent her a fake case history, she would only have acted in good faith I would imagine”

            In one of her presentations, on the power point slide, she states “”Here to share with you what I have witnessed 93 times in the past 2.5 years. ”

            She “witnessed”. She doesn’t say “I received emails and accepted them without checking”. She says she “witnessed”.

            That is not good faith. That is misleading and removes informed choice from the parents being sold this “cure”.

            My “personal bias” is to protect autistic people from being harmed by treatments that are not proven and, in this case, clearly wrong and harmful. Do you not share that personal bias?

          • Planet Autism

            I didn’t mean you personally as regards calling it bleach, I was referring to those articles by people stridently stating people are pouring bleach into their children as if it’s neat household bleach. Those same people are labelling well-meaning parents as child abusers. Those and anybody else hiding the truth and misinforming people are the scaremongerers. The truth should be out there, not biased accounts that mislead or miss things out. And I mean that warts and all.

            From what I have read, from a variety of sources, MMS is highly diluted into water, it is not administered neat. A bit like the homeopathic basis. I would have grave doubts about any enemas on children, precisely because they are children and especially when they are vulnerable, they have the right to decide whether they want to go through that as adults and nobody should be making that decision on their behalf before that time (I suspect there are no life or death medical indications for enemas). But drinking this product provided that is made in the recommended safe solution, is produced hygienically and not being misused (and is not a fake version from someone jumping on the bandwagon) should not be an issue from what I have read.

            Without evidence and a source I cannot comment further on your claims about the woman you quote.

            As an autistic person with two autistic children, of course I would want only non-harmful treatments that people might seek, to be used. As to efficaciousness, so long as it’s not harmful, that is less important (some people are comforted by feeling they are doing something). There are ineffective vaccines that cause vaccine injury, where is the outcry over that?

            I have no bias. I seek only the truth and to allow all sides of a story to be aired, where I see some providing a one-sided and misleading account. Even where I may not agree with the principle or issue at heart.

          • Matt Carey

            If it’s diluted to the level of being homeopathy, then it’s homeopathy and it’s useless.

            It’s a bleach solution. It has strength enough to cause adverse reactions–such as the removal of the intestinal lining when used repeatedly as an enema.

            “But drinking this product provided that is made in the recommended safe solution,”

            Based on what research? Where and how can I do a risk/benefit calculation on this “treatment”? Answer is I can’t.

            “Until someone proves that neither MMS or GcMAF work and they dangerous, my mind will remain open.”

            The question is why you don’t take the stance that until they are proven safe and effective, you will base your

            The question is why would anyone do a safety/efficacy test on these “treatments”. It would be unethical to subject people (or even animals) to these “treatments”, even as an experiment, until a sound basis can be provided to anticipate benefit. Such is not the case for either MMS or GcMAF.

            “I have no bias”

            Everyone does. As demonstrated by this statement:

            “There are ineffective vaccines that cause vaccine injury, where is the outcry over that?”

            That is worded so imprecisely as to be misleading. Or ironically, you have a bias in this regard.

            There are vaccines that are not 100% effective (actually none are 100% effective), and have very rare serious side effects. There is no outcry because one can actually do a risk/benefit analysis and thus achieve informed consent. One can not do so with MMS or GcMAF.

          • Planet Autism

            How do you explain the videos of Red Cross staff in Africa verifying the malaria cure? I’m genuinely interested to know how such a hoax could have been accomplished.

          • Matt Carey

            First off, what relevance does the Red Cross claim by MMS promoters have on this discussion? None.

            Second, when the International Red Cross (as I have linked) state clearly that this is not a real claim and the Uganda Red Cross (which I have not linked) is reported to have also distanced themselves strongly from this, it is on the people putting forth the claim to back it up.

            Here is one lengthy discussion of the Red Cross claim by a science blogger.

            http://www.pepijnvanerp.nl/2013/05/fake-and-unethical-trial-video-claims-miracle-mineral-solution-cures-malaria/

            If you discount the discussion by that blogger, you should at least wish to address the question he poses: if this were a real trial, why were there no ethical approval for a human subjects research project to be conducted?

            While not discussed above, this is another issue that has arisen in the world of alternative medicine and autism “cures”. Consider the situation of the “Lupron Protocol”. IRB approval was obtained, in a sense. The IRB included the researchers themselves, the wife/mother of the father/son research team, and the mother of the first test subject.

          • Planet Autism

            How does a question regarding efficaciousness on MMS, not have bearing on a discussion about an article on treatments, including MMS?

            You strike me as someone too quick to believe authority, just because it’s authority. Have you seen this? http://www.naturalnews.com/041392_master_mineral_solution_malaria_cure_red_cross.html As you can see it was not a clinical trial, it was a field test.

            Have you never heard of corruption in Governments, corporations and organisations? They are run by people you know, fallible human beings and in all cases a lot of money is involved. Even supposedly benevolent organisations can have ulterior motives and the people within them, surprising and unpublicised connections. You appear to be discounting a lot more than you appear to think I am.

          • Matt Carey

            “How does a question regarding efficaciousness on MMS”

            Because you are talking about MMS as a claimed treatment for malaria, and this is a discussion of autism. Even if MMS were a treatment for malaria (it isn’t) that would have no bearing on whether it is a treatment for autism.

            I gave a quite lengthy response to you after I made my comment on how the Red Cross claim was irrelevant, so your claim that somehow I sidestepped answering your question fails.

            “You strike me as someone too quick to believe authority, just because it’s authority. ”

            By which you show your bias, which you claimed you do not have. You present no evidence to back up your claim, other than you disagree with my arguments. Given that I back up my arguments with facts, it is unreasonable to attribute them to belief in authority for authority sake. Unless you believe that facts are part of authority.

            “You appear to be discounting a lot more than you appear to think I am.”

            Discounting would imply I do not research my positions nor do I back up my arguments with facts. I do research and I do back up my positions. So I do not discount.

            You cite Natural News. It would be good for researchers to peruse that site, as it is one of the great examples of harmful misinformation that is pushed on the autism communities. Many of the articles on Natural News promote the failed idea that vaccines are a primary cause of autism. More germane to the discussion at hand, Natural News is also a source of misinformation on autism treatments. For example “Battle Autism with Bentonite Clay”.
            http://www.naturalnews.com/026508_clay_autism_toxins.html

            Which claims that “Calcium Bentonite clay is used both internally and externally to detoxify the body.”, playing on the autism caused by toxins, largely from vaccines, idea.

            Aside from the clearly bad idea that bathing in clay will remove mercury and other toxins from one’s tissues, ingesting clay is also potentially harmful:

            http://www.beveragedaily.com/Regulation-Safety/Shun-dangerous-clay-based-detox-drinks-FSA-warns-UK-consumers

        • skybluskyblue

          Parents that subject their child to an enema without very established reasons to [like constipation] are in fact abusers! I am an autistic adult that would have screamed bloody murder and retreated further into my fantasy world because such “treatments”! Parents need to stop it! They do not own their child. Their children are autonomous people in their own right. If an autistic person requests a treatment, fine, just fully inform them. BTW MMS is not ever a “treatment”.

    • Matt Carey

      Now, as to GcMAF.

      The site producing it and selling it was the subject of a raid last year.

      “Investigators from MHRA carried out an unannounced inspection of a production site in Milton, Cambridgeshire, after the medicines regulator in Guernsey raised concerns in relation to the product. The blood plasma starting material being used to make this drug stated “Not to be administered to humans or used in any drug products”. It was concluded that the production site does not meet Good Manufacturing Practice (GMP) standards and there are concerns over the sterility of the medicine being produced and the equipment being used. There are concerns that the product may be contaminated.”

      https://www.gov.uk/government/news/regulator-warns-against-gcmaf-made-in-unlicensed-facility-in-cambridgeshire

      It is one of the classic “miracle cures” being sold. Not only is it claimed to cure autism, but cancer, HIV, depression, MS, Parkinsons…

      It’s a major red flag when a “treatment” is touted to cure so many diverse conditions.

      • Planet Autism

        I’m pretty sure that one of the links on GcMAF I supplied you contained a link to the company statement, in which they stated the raid wasn’t even on the correct lab. However you clearly did not read the links, whilst claiming to be so well-read and accusing myself of not being. So here is a copy and paste of their statement:

        “First Immune Gcmaf Company Statement: The MHRA investigation is still at the incompetent stage. 10 of them arrived, 4 in bulletproof
        vests, to terrorise the two female scientists who were there. And
        threaten and terrorise is exactly what they did.They raided the wrong
        lab, a new one we are building, in which we have never made GcMAF. They
        thought our chief scientist has a degree in Real Ale brewing, when he’s a
        PhD biochemical scientist at the top of his profession. 180 scientists
        from 8 nations have written scientific research papers on GcMAF. They
        said we do no research at the lab, when we’ve published 31 research
        papers from there, more than any other group. They had clearly never
        read a GcMAF research paper, and probably never will. They sent some of
        our GcMAF off to two government laboratories to test for sterility, not
        knowing that we already use the governments HPA laboratory to test and
        confirm for sterility. They don’t know we do 9 tests on our batches.
        They will find, as the Dutch government did, that the sterility is
        excellent. Unlike the Dutch government, they will not tell us that, as a
        result, it is safe for people to use.They made a number of false
        statements on their website about us. There have never been concerns
        that the product is contaminated. We test for sterility internally and
        externally. The University of Florence was astonished that, after four
        years of experiments, the sterility was always intact, there had never
        been any contamination, and every batch was active. (The MHRA won’t be
        sufficiently competent to test for activity.)Rather surprisingly the
        MHRA stated, “we have received no reports to date of side effects caused
        by this product.” They’ve never licensed a drug without side effects,
        so our protein is a first for them. The drugs they license are full of
        side effects, and are the number 4 killer of mankind according to the
        American regulator, the FDA, on their website (see http://www.chemokills.info
        for a link)Bad law kills, and the UK has the worst medicines laws in
        Europe. 160,000 die of cancer unnecessarily every year as a result, and
        tens of thousands from dangerous drugs that the MHRA license.The MHRA
        block the public’s access to modern science, and protect the old
        monopolies of the billion dollar pharmaceutical companies, who fund
        them. Hundreds of thousands of British lives would be saved every year
        if the MHRA were closed down. The MHRA are about absolute power and
        control. They won’t even allow people to have a few billionths of a gram
        of GcMAF, our own protein that we make ourselves. So they even want
        human body parts to be subject to their licensing.The MHRA’s
        jurisdiction covers the UK only, and doesn’t cover Guernsey; Guernsey
        elects to follow the MHRA by choice.GcMAF is the best treatment
        currently known for about 50 diseases including cancer, and over 9,000
        people have taken it.” 24 September at 09:43

        They state their purification is better than that of the blood products used within the NHS to treat thousands (I’m sure you are aware of people contracting diseases from NHS supplied blood products, such as people with haemophilia).

        To be the open-minded person you would like to think you are, you really need to stop believing the party line and delve a bit deeper.

        • Matt Carey

          They state and they claim, and they sell and make a profit by producing a blood based medicine direct to consumers without prescription and without oversight.

          And I don’t accept their stated claims without proof.

          The question is not why I take this stance, but why you do not.

          “GcMAF is the best treatment currently known for about 50 diseases including cancer”

          I can (and likely will) bring in the discussion of a cancer surgeon/researcher on those claims. But, again, extraordinary claims require extraordinary evidence.

          And they provide no evidence.

          • Planet Autism

            So you think that just because they are running a business that makes them charlatans? On that basis you may as well condemn all of big pharma (oops, forgot VAXXED is already doing that, alongside current court cases against one of the big boys).

            Proof? There are multiple worldwide studies on GcMAF and they are easy to find, including on Immune First’s website, at least 40 peer reviewed studies – I probably linked to that page somewhere above.

            You’re doing it again, claiming to speak for me. I have not said I have accepted their claims, but the point is, I have not been given any reason yet not to. Come up with such reason that trumps their claims and you might sway me. Until then, I will keep my open and unbiased mind.

            Why is it so extraordinary to believe that a natural substance in the human body, which is present in a healthy immune system, destroys conditions caused by dysfunctioning immune systems? The evidence is in the studies! Not to mention lots of anecdotal evidence from people who have recovered of course.

          • Matt Carey

            You claim no bias, yet you cite Vaxxed (a film by Andrew Wakefield).

            “Proof? There are multiple worldwide studies on GcMAF and they are easy to find”

            There is one study on GcMAF and autism in pubmed. It is coauthored by the major proponent of GcMAF in the US. Said doctor also promoted stem cell transplants (travelling to Ukraine to do so), chelation and other dangerous untested therapies. His office was raided by the FBI at least in part due to his involvement with GcMAF.

            “You’re doing it again, claiming to speak for me”

            I am not. If you wish to quote specific language you feel does this, I will address it and apologize if the wording comes across that way. But the comment you responded to in no way makes claims to speak for you.
            https://spectrumnews.org/opinion/viewpoint/scientists-must-curb-tendency-to-try-untested-treatments/#comment-2674138828

            Ironically, you are the one trying to put words into another’s mouth. “So you think that just because they are running a business that makes them charlatans? ”

            I believe people promoting fake therapies are charlatans, especially when they misuse science to back up their claims. Whether they run a business or not does not impact that definition.

            “The evidence is in the studies!”

            Which says that there is no evidence.

            Here is the study on GcMAF (singular, study, not plural, studies)
            https://www.ncbi.nlm.nih.gov/pubmed/?term=gcmaf+autism

            Can you point me to a trial that shows efficacy and/or safety in the autistic population? The answer is you can not. None exists.

          • Matt Carey

            Here is how the manufacturer describes the mechanism for GcMAF and autism:

            “Autism is usually a viral disease to a greater or lesser extent, with viruses in the brain and the stomach. In 15% of children viruses are negligible, and GcMAF probably will not help. In 85% viruses are involved, and they will respond to GcMAF. In 15% of children autism is mainly a viral disease, and these children make full recoveries.”

            There is no evidence that autism is a viral disease. There is no reason to try GcMAF, nor to trial it in autistics.

            One has to “register to buy” GcMAF. You have to sign a disclaimer:

            “I understand I will be taking part in a pre clinical trial and I guarantee to provide progress reports every 2 months, from which Immuno Biotech will extract data to publish statistics and research papers while protecting my identity as we always have. I have done my own research into GcMAF elsewhere without relying on you, and my decision to take it is mine alone”

            Which I imagine raises numerous red flags with legitimate researchers. First, a “preclinical” trial? Second, no information about ethical approval. Third, the customer is paying to participate. Fourth, the data is collected by progress reports from customers, lastly the requirement to indemnify the manufacturer.

  • Simon Baron-Cohen

    This is an important commentary, Matt. Thanks for writing it.

    Just a historical footnote about your claim that we only warned the autism community in 2015 about the dangers of jumping to unevaluated hormone treatments and that this was “too little, too late”:

    It is true that in our 2015 paper we flagged up the dangers of doctors like Geier and Geier using testosterone blockers to treat autism because that 2015 paper was the first to report prenatal testosterone and related steroids were elevated in autism.

    But 6 years before this (in 2009), we had published a paper showed prenatal testosterone levels were correlated with the number of autistic traits in typical kids, and even at that point we were concerned that Geier and Geier were inappropriately promoting testosterone blockers as a treatment for autism. We wanted to warn the autism community of this and so published a commentary in 2009 stating the following:

    “the fT [fetal testosterone] theory of autism could have treatment implications… indeed testosterone blockers already exist so that medically it is also possible in practice. However, we would discourage research or clinical practice from attempting such treatment until it is known what the unwanted side-effects of such hormonal treatments might be. It concerns us that Geier and Geier (2007) for example are using testosterone-blockers on already diagnosed children with autism (blocking current testosterone) as we are not aware that this has passed through the relevant safety checks and the drug they are using (Lupron) is a form of chemical castration, usually used for treating adult sex offenders. As such it seems wholly inappropriate to use it on children with developmental disabilities.”

    Readers can find the 2009 commentary here: http://docs.autismresearchcentre.com/papers/2009_BC_etal_BritJPsycholCommentaries.pdf

    This is just one of many places where we have signalled our concerns about this unethical treatment on the web. For example, prior to our 2015 paper we advised the charity Research Autism (a autism-treatment-watch-dog) about testosterone regulation (see http://researchautism.net/interventions/24/testosterone-regulation-and-autism/Introduction).

    And in 2012 we ensured this message was also included in the NICE (National Institute for Health and Care Excellence) Guidelines for autism that is sent to every General Practitioner (family physician) in the UK, and which influences best practice guidelines world-wide.

    Matt, you are absolutely right that the scientists have a responsibility not just to do the basic science but also to communicate the implications of the science – including the risks and ethical implications – to the wider public. Thank you for your excellent commentary.

    • Matt Carey

      Prof. Baron-Cohen,

      Thank you for responding–and more for taking an active role in countering the misinformation.

      I’ll check with the editor if a note can be made in the above.

  • Ethyl

    “Hope is a very seductive thing to those who have lost it.”

    That you ended with this gives me hope. The thing many parents don’t understand is quacks sell false hope, but science in some ways is no better. They use fear and lies, too.

    “Fourty seven percent of children become indistinguishable from their peers.”

    I can’t understand how parents can take a chance with their children’s bowels with MMS…but the medical answers for autism can be equally harsh…amphetamines and antipsychotics are no walk in the park, either, and they are suggested with no idea of long term consequence.

    I have waited 20 years for science to listen to parents and autistics, and autistic parents….and it is just beginning. It’s not just the quacks who need to grow up. With $2billion being spent, we should be far, far, far farther along than we are. Hey…I had to grow up to learn to love my son unconditionally, and to leave the fear that science implanted behind, too. (The necessity of early intervention/recognition, advice on diminishing “autisms” (stims), modeling NT behavior, …to say nothing of all science coming from a NT viewpoint, without regard to the fact that they are just wired different, and seeing things _from their eyes_ limits the negative stereotyping–a type of empathy science seems to be particularly lacking in.)

    Sometimes I think we’d be much farther along in autistic understanding without the quacks, but “science” gets no big scores, either. There are breakthrough things happening in spite of “autism experts”. What they all have in common is empathy for the autistic ~as they are~. SIB’s as a reaction to pain, Alternative Augmentative Communication, addressing and treating comorbidities…and as much as I know you are going to hate me saying this, my greatest hope is that we look at the immune reactions kids have and instead of ignoring them, using them as a clue to etiology.

    If we never gave our kids another treatment, therapy, or anything else (other than medically necessary ones)–they might be better off if we just treated them like humans and guided their lives as best we can in love.

  • Elizabeth B Torres

    Great article Matt! Will share as well.
    I wonder if you would be willing to contribute to our forthcoming book “Autism: The Movement Approach”. We have a section on parents. Below is a link to a sample chapter I posted on ResearchGate

    https://www.researchgate.net/publication/303102973_Turning_the_Tables_Autism_Shows_the_Social_Deficit_of_Our_Society

    would love to hear your opinion on this chapter and include your thoughts about the treatments issue in the forthcoming book.

  • Hi Matt,

    This is well said, and I am glad Spectrum offered you this forum in which to say it. I agree with you that use of therapies for which there is little rational basis in the medical literature is misguided. In addition I agree with you that more color about risk is important in any discussion regarding treatments and that research can and in many cases has been misused.

    Having said this, I do feel that there is a tendency to consider any treatment involving supplementation with an over-the-counter compound in autism as quackery, and it seems to me such a view is unjustified. To be clear undoubtedly the use of many supplements in autism is misguided and for others doses typically used may be too high, but for some supplements there is at least one double-blind trial in autism showing efficacy with statistical significance and in a few cases there are multiple double-blind trials showing efficacy. Admittedly it would be wonderful if there were more trials, especially if there were trials of longer duration, but we cannot control what research has been done to date.

    In any case for me there is enough evidence to support use of some of supplements in many cases of autism based on existing evidence in the medical literature. I guess what I am wondering is what evidence is required in your view before doctors should start using a supplement with some of their patients with autism? Relatedly what evidence is required in your view before parents perhaps in consultation with their doctors should start using a supplement in their children with autism?

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