Montagnier and the Autism Treatment Trust

22 Nov

This summer the Nobel Prizewinner, Luc Montagnier, seemed to lend credibility to homeopathy.

French virologist Luc Montagnier stunned his colleagues at a prestigious international conference when he presented a new method for detecting viral infections that bore close parallels to the basic tenets of homeopathy.

Although fellow Nobel prize winners — who view homeopathy as quackery — were left openly shaking their heads, Montagnier’s comments were rapidly embraced by homeopaths eager for greater credibility.

Montagnier told the conference last week that solutions containing the DNA of pathogenic bacteria and viruses, including HIV, “could emit low frequency radio waves” that induced surrounding water molecules to become arranged into “nanostructures”. These water molecules, he said, could also emit radio waves

He suggested water could retain such properties even after the original solutions were massively diluted, to the point where the original DNA had effectively vanished. In this way, he suggested, water could retain the “memory” of substances with which it had been in contact — and doctors could use the emissions to detect disease.

Luc Montagnier won his Nobel Prize just two years ago, for the discovery of HIV in 1983.

The excellent Gimpy’s blog reports that Montagnier has turned his eye towards autism. He is seeking to use his new found ability to detect infections using “low frequency radiowaves” at the Autism Treatment Trust with a Dr. Skorupka and Dr Amet. Skorupka is described as a DAN! practitioner from Paris; Dr Amet is a neuroscientist, but not a registered medical practitioner. As readers of this blog will be aware DAN! (Defeat Autism Now!) practitioners use non-standard biomedical treatments that have little in the way of supporting evidence. Often “studies” in this area (in the US) will be funded by parents.

The Montagnier study as published at the Autism Treatment Trust, hopes to use Montagnier’s alleged ability to detect viruses and bacteria from the “low frequency radio waves” they emit. Montagnier is of the view that “some abnormalities in autism as well as in a whole range of neurological conditions, such as chronic fatigue and multiple sclerosis may be caused by potential infective agents.”, and has recently received a grant from the Autism Research Institute to study bacterial DNA in autism.

There are three main aims to the study:

1- Investigate the possibility that some cases of autism are associated with a range of bacterial infections, based on laboratory testing and clinical examination conducted by Dr. C. Skorupka in Edinburgh.

2- Assess the ASD children for the presence of nanobacteria following Prof Luc Montagnier’s protocol of investigations. The protocol would require a blood draw conducted at the clinic with the help of our nurse. The blood normally has to be centrifugated immediately and the supernatant extracted, then frozen to -80C and shipped on carboice to France.

3- Evaluate the efficacy of antibiotic intervention as well as behavioural evaluations (ATEC and ADOS). This would involve meeting with Dr Skopurpka and Dr. Amet every 2 months and reviewing progress over the phone in the interim month.

The opportunity to take part in this study is going to cost parents serious money:

Cost of study: £1800 (over 6 months).
Antibiotic treatment: £30-60 a month.

For that, you will get:

1. A scan using Montagnier’s new “resonance” screening system for bacterial and virological material.

2. A “very sensitive PCR assay”

3. A progress review by Dr Skorupka and Dr Amet every two month’s, plus interim phone reviews.

4. A blood test at the start of the treatment, and after 6 months of treatment.

5. Behavioral evaluations at the start, and after 6 months of treatment.

The study is restricted to 12 autistic children, involves PCR, has no controls, and involves blood tests. Any alarm bells ringing yet?

The webpage about the study does not show evidence of authorisation by the MHRA (perhaps surprising given the anti-biotic treatment), or having undergone any ethical review in the UK (perhaps surprising given the blood tests and antibiotic treatment in a vulnerable group of children). I have emailed the Autism Research Institute to ask for clarification on this point, and have yet to receive any confirmation of any authorisation. I have therefore emailed the National Research Ethics Service and the MHRA Clinical Trial unit to see if they are aware of the study being registered.

In 2008, when Montagnier was receiving his Nobel prize, The Daily Mail ran a news story “The Great Autism Rip-Off” about the biomedical industry that feeds on vulnerable families with autistic children. The Autism Treatment Trust and Dr Amet were featured in the article (consultation £120, £480 for tests including urine and hair tests, follow-up £400).

At the time, Richard Mills, a director of Research Autism, stated:

“Many of the practitioners who sell these treatments are no better than snake-oil salesmen. This kind of hard-sell approach is completely immoral. Lack of regulation means anyone can set themselves up and claim to be able to successfully treat autism, without any proof that it’s actually possible,”

Who would have guessed that an industry the Daily Mail exposed, would eventually attract the interest of a Nobel Prize Winner?

See also Gimpy’s blog on this study as well.

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36 Responses to “Montagnier and the Autism Treatment Trust”

  1. Kev November 22, 2010 at 18:12 #

    The study is restricted to 12 autistic children, involves PCR, has no controls, and involves blood tests.

    Sounds oddly familiar!

  2. Sullivan November 23, 2010 at 00:29 #

    Paying to participate in a research project? That rings some loud alarm bells.

  3. Joseph November 23, 2010 at 00:56 #

    I’ve heard of studies where the researchers pay the participants, as an incentive. The opposite sounds like a scam, i.e. a dude taking advantage of his notoriety to make a buck.

    Not to mention that either receiving money or having to pay are conflicts of interest, which is all the more important if there’s no control group.

  4. Niina November 23, 2010 at 01:31 #

    I have to say that if NT parents were just a bit more responsible, intelligent and spent just a hour of their time
    researching autism instead of acting like a idiotic, brainfree animals, they would actually help instead of hinder their children’s quality of life

  5. Lorene Amet, PhD November 23, 2010 at 14:50 #

    For clarification, the work you are referring to is not a research study, it is a screening protocol that aims to identify whether or not children with autism present with evidence of infective agents. The screening undertaken by Prof. Montagnier is based on PCR, a technology that is well established and has been used for decades to detect the genomic material originating from infective agents, even if present in very low amounts. The treatments put in place are derived from the finding of the screen- i.e. based on the type of infective agents detected. The detection of electromagnetic signals, a recently developed technique that may hold some promise with regard to detection of infective agents as a general screen (Montagnier et al. 2009a,b) is peripheral to the work, and will not assist in guiding the treatment.

    As you may be aware from literature, children with autism treated with antibiotics (e.g. Sandler et al. 2000) can respond remarkably well to this type of treatment. Whilst it has been proposed and indeed, there are a number of papers that suggest that this might be related to intestinal clostridia overgrowth, we aim to assist in providing a more general screen of potential pathogens. Anecdotally the outcomes of the antibiotic treatments are good, especially in addressing issue of OCD.

    Children with autism require better support and often intervention and these must be guided by the right investigations. We are very grateful for the Nobel Prize Winner of Medicine to assist us in this goal.

  6. Joseph November 23, 2010 at 15:34 #

    As you may be aware from literature, children with autism treated with antibiotics (e.g. Sandler et al. 2000) can respond remarkably well to this type of treatment.

    Note that Sandler et al. does not have a control group. I think this is key, since there aren’t many non-controlled autism treatment trials reporting negative results.

  7. Science Mom November 23, 2010 at 15:38 #

    Dr. Amet, regardless of what you wish to call this, it’s still a hypothesis under investigation. How do you justify charging people for what is essentially a study? How did you determine your sample size? Is it adequate to detect what you think you may be looking for? How are you justifying treatment by the mere presence of an infectious organism considering many are commensal organisms?

  8. Lorene Amet, PhD November 23, 2010 at 16:26 #

    I was meant to add

    The article in the Mail on Sunday linked above did not cover accurately the work conducted at the trust. It is an organised propaganda of lies and misrepresentation. Regarding the costing, our trust is a non-profit making organisation that relies heavily on donation and funding to survive. The costing that we had initially estimated based on full behavioural evaluation of child before and after aimed at conducting all evaluations as they should be conducted by practitioners. We have to get out of this trap, and receive the support our children deserve and that researchers and clinicians need for a proper evaluation of laboratory findings and treatment outcomes. As it turned out the costing has been significantly reduced. Keep in mind that most parents receive funding for this.

    If you read the literature carefully and actually listen to symptoms and behaviour reported by parents you will see that there are good reasons to suspect for some individuals that there is indeed ongoing infection study.

    This is not a hypothesis, this is screen- plain English- this is not a study and we are not aiming to compare children with autism to controls. If children have evidence of infection they will get treated. If you had a heart and a brain, you would understand that a parent with a sick child must find a way to support that child.

    My son was found to have Lyme disease for example, and I tell you, I will not leave him untreated this would be pure neglect.

    I will not answer any further post.

  9. daedalus2u November 23, 2010 at 16:34 #

    I think that any positive effects on people with autism due to treatment with antibiotics would be due to a Jarisch-Herxheimer reaction. That is when the killed bacteria lyse and spill their cytoplasm and other contents into the organism, those bacterial products are highly immunogenic and cause a very strong immune reaction. The immune reaction results in the activation of NFkB and the expression of iNOS which produces high levels of NO (just as in the fever of fever therapy).

    http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html

    This is especially likely in the Sandler et al study because they used an oral antibiotic (vacnomycin) that is not absorbed from the gut. Any killing of bacteria would only happen in the gut. For systemic effects to occur, something in the gut has to be affecting the brain. Either “toxins” (their hypothesis), or systemic NO from a Jarisch-Herxheimer reaction (my hypothesis). Vancomycin is a broad spectrum antibiotic, which works by inhibiting formation of cell wall in Gram positive bacteria. If the bacterial toxin hypothesis was correct, removal of the bacteria through antibiotic treatment should have resulted in permanent changes in symptoms, but it did not. Since no target organism(s) or target toxin(s) have ever been identified (or suggested) in any other research, and no pathway(s) have been suggested by which such toxin(s) could cause autism-like symptoms, I think a Jarisch-Herxheimer reaction is more likely.

    It is a shame that Luc Montagnier’s intellectual deterioration has been taken advantage of by quacks. I hope that no children are hurt by this and that it doesn’t set research on the real causes and treatments of autism back by too much.

  10. Science Mom November 23, 2010 at 17:13 #

    The article in the Mail on Sunday linked above did not cover accurately the work conducted at the trust. It is an organised propaganda of lies and misrepresentation. Regarding the costing, our trust is a non-profit making organisation that relies heavily on donation and funding to survive. The costing that we had initially estimated based on full behavioural evaluation of child before and after aimed at conducting all evaluations as they should be conducted by practitioners. We have to get out of this trap, and receive the support our children deserve and that researchers and clinicians need for a proper evaluation of laboratory findings and treatment outcomes. As it turned out the costing has been significantly reduced. Keep in mind that most parents receive funding for this.

    You aren’t making much sense here. You are charging parents for an investigation (again, call it what you like) but presenting this as a proven method to ‘screen’ for pathogenic organisms. You get a pilot study funded to determine if your hypothesis is even plausible, not jump to offering ‘treatment’ for a hypothetical illness. This is highly unethical.

    If you read the literature carefully and actually listen to symptoms and behaviour reported by parents you will see that there are good reasons to suspect for some individuals that there is indeed ongoing infection study.

    But you are only acquiring blood samples. Surely even you know (and certainly trust that Dr. Montagnier knows) that this will limit detection of pathogens that aren’t present in blood, serum or plasma.

    This is not a hypothesis, this is screen- plain English- this is not a study and we are not aiming to compare children with autism to controls. If children have evidence of infection they will get treated. If you had a heart and a brain, you would understand that a parent with a sick child must find a way to support that child.

    Is this semantic sleight of hand allowing you to dodge ethical oversight? Why wouldn’t you want to make a proper comparison? Doesn’t this allow you to possibly detect differences? You are already calling this infection but how do you know this? I do have a heart and a brain and why I am calling shenanigans. Shame on you for joining the ranks of sleazy charlatans happily taking advantage of desperate parents. Of course you won’t be back, none of you are ever willing to engage in discussion and respond to criticism.

  11. Kev November 23, 2010 at 17:17 #

    If children have evidence of infection they will get treated. If you had a heart and a brain, you would understand that a parent with a sick child must find a way to support that child.

    Who evaluates that evidence of infection Lorene? You?

  12. Kev November 23, 2010 at 17:23 #

    A progress review by Dr Skorupka and Dr Amet every two month’s, plus interim phone reviews.

    Given you’re not a medical doctor Lorene, isn’t your participation in this at best useless and at worst unethical? What you can you possibly offer by way of ‘review’?

    • Sullivan November 23, 2010 at 22:39 #

      Kev,

      Lorene Amet, Ph.D. is the reason why I stopped using the title “Dr.” on this blog for anyone other than a treating physician. I have much respect for academic degrees, but I find that

      On the page for “new parents”, you will find the following statements:

      “For parents /interested in Bio Medical Intervention/ who are distant from Edinburgh we offer a telephone first consultation with Dr Lorene Amet (1 hour approximately).”

      after a discussion of testing, there is this sentence:

      “After the tests are completed and Dr Amet has studied the results you can then visit the ATT clinic for a second consultation (3 hours) with your child.”

      I think that a reasonable person would read that page and assume that Ms. Amet is, well, something she is not. No where on this page is it made clear that Dr Amet holds a Ph.D., not an M.D.. It is my understanding, and correct me if I am wrong, that she is not licensed to give medical advice or treatment.

  13. Kev November 23, 2010 at 17:37 #

    Lorene, it says on your blog:

    Willing to discuss biomedical intervention and autism research…

    Why claim you’re willing to discuss things when you clearly are not? Is it the minute the discussion gets too uncomfortable for you you bolt?

    You have a blog post up asking

    Question: Why are people and especially the ND group so opposed to investigating autism and treating the abnormalities found?

    Come back and we can debate it – you’re ‘willing to discuss’ it aren’t you?

  14. daedalus2u November 23, 2010 at 18:23 #

    Autism Treatment Trust are a bunch of quacks. They do provoked urine tests with Doctor’s Data, they do urine porphyrin tests, they do hair heavy metals, they are quacks.

    I see this as just another scam to trick parents into treating their children with antibiotics. The use of the Sandler et al study to justify this is disingenuous. The Sandler study used Vancomycin, it could only affect bacteria in the gut. It would be completely ineffective against bacteria in blood. So why are they looking to measure bacteria in blood? Because they can, and if they get a false positive with PCR they can “recommend” (and $ell) antibiotics to treat the “infection”.

    It is a scam just like the Doctor’s Data scam of provoked urine heavy metals. Give a child (with no known symptoms or exposure to heavy metals) a chelating agent, they excrete heavy metals in their urine, proclaim they have heavy metal poisoning and then dose them up with more chelating agents. How long? Until the parents stop paying for it.

    http://daedalus2u.blogspot.com/2010/07/doctors-data-sues-quackwatch.html

    This “study” is a scam just like provoked urine testing is a scam. A pilot program to see what parents will pay if they get a Nobel Prize scientist to declare they have an infection due to nanobacteria. Expect marketing materials to imply a connection between autism and HIV and prey on the fears of parents that if they don’t do these (useless and potentially harmful) things they are neglecting their children.

    Take children with no known symptoms or exposure to any infectious agent, test them using non-clinically validated tests of unknown reliability (the radio wave test is likely completely unreliable), if they test “positive”, declare them to need treatment, then treat them. Charging the parents every step along the way. ChaChing!

    Science Mom, yes you are right, calling it “not a study” is exactly to get around the Declaration of Helsinki. If you are “treating” people, it is not an “experiment” and it is not “research”.

    I guess with mercury removed from vaccines, the market for chelation is going down. No doubt Doctor’s Data is feeling the pinch on their provoked urine testing business. Must be getting harder to make a living marking up supplements that can be gotten anywhere.

  15. daedalus2u November 23, 2010 at 18:40 #

    Sorry to be so harsh, but “treating” children for things which have no clinical indications is not “necessary treatment”, it is child abuse.

    Without knowing what is “normal”, you can’t know what is abnormal. Increased heavy metals in urine following provoked chelation is normal. It is not an indication for heavy metal poisoning or for chelation treatment.

  16. Lorene Amet November 23, 2010 at 19:26 #

    I am very happy to discuss any issue you bring as long as they are brought with an open-mind. I do not see this here. I have detailed already on my blog and on our web site why we do the testing and intervention we do and how we work. Everything you bring I can answer, as long as you do so with a genuine desire to understand.

    How these potential infections are evaluated… simple… by involving a medial doctor and Nobel Prize of medicine. I doubt I could have had a better team. And FYI, I have worked for 15 years in a lab using PCR routinely, I can do PCR and I can analyse the results.

    Herxheimer reaction- we know all of this and we know how to address it. You did not address anything particularly relevant in your post Mr. daefalus2U who does not even have the guts to present his real name, as it is the case of most of you here on this blog.

    And what do you have to propose to help autism and assist with the health issues that can be identified?

    Ari Ne’eman… really useful yes- what a farce!

  17. Calli Arcale November 23, 2010 at 19:27 #

    Dr Amet:

    This is not a hypothesis, this is screen- plain English- this is not a study and we are not aiming to compare children with autism to controls. If children have evidence of infection they will get treated. If you had a heart and a brain, you would understand that a parent with a sick child must find a way to support that child.

    How dare you accuse the parents here of not having hearts or brains merely because they are not suckered to your transparent quackery! I have two children, and I do possess both heart and brain. One of my children is on the autism spectrum. I would never subject her to this costly and completely unstudied “treatment” just to provide blood samples that can subsequently be abused to support whatever hypothesis you finally come up with.

    Your comments make it blindingly clear that you are not interested in studying any connection between pathogens and autism. Not really. You’ve found your N-rays, and now you’re looking for a way to profit from them, rather than studying them to see whether they really exist. (I trust you’ve heard of N-rays. If not, please look it up on Wikipedia; it is an instructive story.) What’s worse, you’re using *children* for your profit. You have admitted you are not studying these children, and that the data you collect from them will be useless. There is only one other reason you could be doing this, and that’s profit. Oh, I’ve no doubt you won’t profit appreciably from this pilot program. The purpose of this program is to determine how best to market it, isn’t it? To work out what price will be borne by the customers? Because you don’t see them as patients, do you? You see them as customers.

    How dare you do that and then try to act as if YOU are the one who cares about sick children. You would subject children to painful blood draws and to lengthy antibiotic regimens with no proven use for this indication for no reason except to treat them for a condition which you haven’t even proven exists. I’m sorry; you do not have the moral high ground here. You are completely uninterested in learning what is really making these children sick, as evidenced by the fact that you are jumping straight to treatment without any kind of study whatsoever.

    And you call yourself a scientist.

    For shame.

  18. Calli Arcale November 23, 2010 at 19:30 #

    Minor correction; I admit that “for study” and “for profit” are not the only possibilities. You could actually be well-intentioned, and believe this is the right thing to do. In which case, Dr Amet, you are *incompetent*.

  19. Science Mom November 23, 2010 at 19:52 #

    I am very happy to discuss any issue you bring as long as they are brought with an open-mind. I do not see this here.

    Translation: “I don’t want to waste my time with critical-thinkers, just those who are willing to embrace my sciency-sounding woo.” I asked you several relevant questions about your study, please answer them directly as I’m not interested in the pre-empted sales pitch on your blog.

    How these potential infections are evaluated… simple… by involving a medial doctor and Nobel Prize of medicine. I doubt I could have had a better team. And FYI, I have worked for 15 years in a lab using PCR routinely, I can do PCR and I can analyse the results.

    An empty appeal to authority. You are making elementary mistakes with your ‘protocol’. So I’m not exactly impressed with credentials or experience when they are not being used wisely.

    Herxheimer reaction- we know all of this and we know how to address it. You did not address anything particularly relevant in your post Mr. daefalus2U who does not even have the guts to present his real name, as it is the case of most of you here on this blog.

    Our pseudonyms are of zero relevance, our questions and assertions are; you just don’t like them. Can you answer them or not?

    And what do you have to propose to help autism and assist with the health issues that can be identified?

    Aww, how sweet, ‘doing it just for the children’ are you? How can you assess health issues when you have already decided to skip that step and use an untested, unvalidated hypothetical protocol? I’d say I’m doing my part by exposing fraud that you are happily perpetuating for profit.

  20. daedalus2u November 23, 2010 at 20:10 #

    Dr Amet, unless you read and understood the post I linked to (doubtful unless you are a fast reader), you don’t understand where I am coming from and don’t understand how I do propose to treat the actual adverse symptoms of autism.

    Your “study” that is not a study isn’t looking at any identified problems in autism. It is a fishing expedition. The heavy metals testing you do isn’t looking at any identified problems in autism, it is a pure scam.

    I do have a proposed treatment for autism, one that does fit with all the physiology that has been described in the literature. I have too much respect for people with autism and those who care about them to try and exploit them or their parents in marketing untested treatments to them. I appreciate that quacks such as yourself can’t understand that mindset.

  21. Lorene Amet November 23, 2010 at 20:27 #

    Are you aware that your flapping about is just empty words?

    You have something to propose for autism, really? : propose it and act on it.

    Evidence of profit? Get real, come to my house and see how I live- get the facts and read the testimonies of how children improve. Simple, the evidence is there, but you are too busy flapping around with empty words.

    None of you have the honesty to look at autism for what it is, none of you has the openness to consider this condition from a different perspective. No, instead, your want to blind yourself in the dogma of the ND movement, you want to refuse seeing that hang on a minute, something can be done to help, and you sit around all day long at your computer, in total boredom, because your life is sadder still.

    Now- if anyone has anything positive and constructive to say, say it. We can expect Autism to make great leap forward with you guys

    • Sullivan November 23, 2010 at 20:39 #

      “No, instead, your want to blind yourself in the dogma of the ND movement, you want to refuse seeing that hang on a minute, something can be done to help, and you sit around all day long at your computer, in total boredom, because your life is sadder still.”

      I’ll turn the offer around on you. Come to my house. If, after even a short time here, you can still say that then it is you who are blinded by dogma.

      If you want to project onto others that by not following your ideology, we are somehow not doing enough for our children, you need to have the openess to see things from a different perspective (to use your own words).

  22. Calli Arcale November 23, 2010 at 21:46 #

    Ah, you came back, Dr Amet! Wonderful. You said you wanted to talk to people with open minds. Let’s see if that’s true, shall we?

    Are you aware that your flapping about is just empty words?

    Erm. Maybe not. Your first response after returning is an insult, plus a dismissal of every pertinent question that has been asked of you. You said you were interested in discussing this with open minds. I’m not so sure that’s true. Do you really want open minds — or just people who believe whatever you say?

    I have an open mind; I am prepared to be convinced. But you have to do the convincing. I do not close myself to possibilities other than what you offer.

    You have something to propose for autism, really? : propose it and act on it.

    But don’t study it? Just propose and act, eh? Some scientist you are.

    If I sound angry, it is because I am. I am angry that you dared to call us all heartless and brainless and imply that we don’t care about children just because we refuse to accept your claims without any examination. I’m sorry, Dr Amet, but it is BECAUSE we care that we ask you the difficult questions. It is the only way to tell if you are both honest and right. I mean seriously; you know there are people who claim autism is demon possession, and recommend whipping (seriously!) to cure it? Surely you don’t think I should just take *their* claims at face value? No! That would be horrible. I know you wouldn’t recommend anything as bad as that, but how do we know you’ve thought about the risks of prolonged antibiotic use? How do we know this will actually work?

    Answer: we don’t, because you haven’t given us that information. In fact, I’m beginning to suspect you don’t have that information either. After all, you think it is the height of nobility to propose a mechanism for autism and then act upon it.

    Many have proposed mechanisms for autism, and then acted upon them without doing any research. Just as you are doing. Like you, they believed their actions to be noble. But their treatments didn’t help. Children were injured. In some cases, children even died.

    The stakes are far too high here for anyone to just take your word that this will work, especially when there is no science to support your claims.

    Do you know what a proper scientist in your boots should be doing? It’s not propose a mechanism and then act on it. You’ve left out quite a few steps.

    1. Propose a mechanism.
    2. Devise a hypothesis to test whether or not the mechanism is plausible.
    3. Test the hypothesis.
    4. If this succeeds, devise a hypothesis to test whether or not there is an actual correlation between the mechanism and autism.
    5. If that succeeds, then you can start to think about treatment. Propose a treatment.
    6. Devise a hypothesis to test the treatment.
    7. Perform a clinical trial to test the hypothesis.
    8. If successful, move to additional trials to get the therapy approved.

    That’s what you do if you want to know that you’re doing the right thing, and if you want the world to be able to share in the knowledge and then build upon it. But it’s tricky. It’s humbling. And it requires an open mind. “Propose then act” is what you do if your mind is closed — in particular, closed to the very real possibility that you are wrong and are actually hurting these children.

    It’s a hard possibility to face, but if your love for these children exceeds your pride, then you owe it to them to face it, test it, and make sure you are doing the right thing.

  23. Calli Arcale November 23, 2010 at 21:47 #

    BTW, what is “ND”? I’m aware of NT standing for neurotypical, but ND is new to me.

  24. Dawn November 23, 2010 at 22:37 #

    ND is for neurodiversity, which is a big fat “no-no” to the AOA and other crowd.

    If I had a sick child, I would take her to a physician to be treated. I would not go to a witch doctor, no matter WHAT his/her degree is, who says they have a cure for a child who is NOT sick, only developmentally delayed. You are aware, Lorene, that autism and PDD are not developmental stasis, but delay, right? And that most children improve without treatment to various extents? And with therapy, more improve. No one says they should not treat a sick child. But you need to give me REAL proof that my child is sick, not just some blood test that has no clinical documentation of proof that it finds what the researcher says it does.

    AND, there is NO freaking way I would ever pay for an unproven treatment protocol. Research studies (admit it, Lorene, that is what you are doing) should NOT be done at the expense of the patient. And where is your IRB review? You are doing unresearched therapies on CHILDREN. Heck no, I wouldn’t let you or your team within miles of me and mine.

  25. Joseph November 23, 2010 at 22:59 #

    You have something to propose for autism, really? : propose it and act on it.

    I propose you stop spreading misinformation, false hope, and groundless fantasies, Lorene. That would be a good start.

    Then, if you’re still interested in the outcome of autistics, why not study autistic adults who’ve had various types of outcomes, and try to find out what predicts said outcomes?

  26. Science Mom November 23, 2010 at 23:02 #

    Are you aware that your flapping about is just empty words?

    Project much? I know I have asked a few questions and others have made remarks about your protocol that does not appear ethical, nor properly framed.

    You have something to propose for autism, really? : propose it and act on it.

    You think too highly of yourself Dr. Amet. You haven’t done anything for autistic children other than to lighten their parents’ wallets.

    Evidence of profit? Get real, come to my house and see how I live- get the facts and read the testimonies of how children improve. Simple, the evidence is there, but you are too busy flapping around with empty words.

    Just because you may live modestly doesn’t mean you aren’t profiting off of others suffering and credulity. Testimonials? Really? Who’s flapping now? I would think that a PhD would know how to put a proper study together to demonstrate your claims. I guess that’s why you are doing what you are doing.

    None of you have the honesty to look at autism for what it is, none of you has the openness to consider this condition from a different perspective. No, instead, your want to blind yourself in the dogma of the ND movement, you want to refuse seeing that hang on a minute, something can be done to help, and you sit around all day long at your computer, in total boredom, because your life is sadder still.

    Blah, blah, blah. How can any of us further assess your study if you refuse to clarify the numerous points that have been raised? You are only interested in addressing those willing to blindly and ignorantly heap praise on your ‘noble’ endeavour. Too bad your ego exceeds your intellect.

    Now- if anyone has anything positive and constructive to say, say it. We can expect Autism to make great leap forward with you guys

    Better yet, how about you shysters step aside and let the professionals do their jobs? You and your ilk are merely an expensive distraction.

  27. dt November 26, 2010 at 18:52 #

    Dr Amet, may I ask a few pertinent questions?

    1. If you use PCR, which organisms will you be screening for?
    2. How will you distinguish whether a positive result indicates the organism is a true commensal or acting as a potential pathogen with respect to autism?
    3. What antibiotics you propose to treat children with?
    4. Will this be determined solely by the results of the PCRs which you perform, identifying various possible pathogens, or will you use any other methods of screening (apart from the bioresonance)?
    5. Who will be doing the medical assessments?
    6. Who will be doing the antibiotic prescribing?

    These are all reasonable questions, and could well be those asked by a potential study patient’s parents, so I am sure you will not have any reticence about replying.

  28. silent observer December 4, 2010 at 01:31 #

    I was waiting for Ms. Amets’ response their but she goes silent again. I believe Ms. Amet will never be able to answer the questions directly. She does not have the answers, never had never will. Never one to be able to answer the most pertinent of questions. She picks at ill thought out theories and miraculously has a solution with no heed of the consequences. She will, for now, continue to hide behind her perceived ‘Dr’ title (Phd in philosophy, dissertation in HIV!), claiming to be an autism expert, and the ATT board who funds her pseudo science.

  29. David N. Andrews M. Ed., C. P. S. E. December 6, 2010 at 10:14 #

    “‘The study is restricted to 12 autistic children, involves PCR, has no controls, and involves blood tests.

    Sounds oddly familiar!”

    And I thought that ringing in my ears was my tinnitus!

  30. David N. Andrews M. Ed., C. P. S. E. December 6, 2010 at 10:39 #

    “She will, for now, continue to hide behind her perceived ‘Dr’ title (Phd in philosophy, dissertation in HIV!), claiming to be an autism expert, and the ATT board who funds her pseudo science.”

    Actually – the title of Doctor is not a ‘perceived’ title (in the derogatory manner in which you use the term ‘perceived’): she holds the degree of Doctor of Philosophy. Since you haven’t thought your attack through, I’ll explain it to you simply: in the wolrd of research, the degree of Ph. D. is a primary research degree. It can be worked for by those who hold a good honours degree or a master’s degree (or – some cases – equivalent knowledge and understanding of the field of research as would be found in someone who had the other two qualifications). It is a supervised course of study, unlike the degree of (for example) Doctor of Science, which is a higher doctorate, awarded on the basis of published work that makes a significant contribution to knowledge. The degree of Doctor of Philosophy is available in all fields, including the sciences.

    As for claiming to be an autism expert, a degree at master’s level is defined as providing:

    * Highly specialised knowledge, some of which is at the forefront of knowledge in a field of work or study, as the basis for original thinking and/or research
    * Critical awareness of knowledge issues in a field and at the interface between different fields

    So, claiming expertise is something that a master’s degree does indeed allow one to do. The problem is the quality of that expertise. And this is where I’m having issues with Dr. Amet.

    “I think that a reasonable person would read that page and assume that Ms. Amet is, well, something she is not. No where on this page is it made clear that Dr Amet holds a Ph.D., not an M.D.. It is my understanding, and correct me if I am wrong, that she is not licensed to give medical advice or treatment.”

    To be fair, the biographies page contains the information needed to know that she is not a medical practitioner, as well as information about people in the organisation who are medical practitioners. But it should be pointed out more clearly that she is not a medical practitioner.

    Dr. Amet: “Get real, come to my house and see how I live- get the facts and read the testimonies of how children improve. Simple, the evidence is there, but you are too busy flapping around with empty words.”

    You have a doctorate, and you completed the M. Ed. at the University of Birmingham. You should therefore know that testimonies/anecdotes do not pass muster to be called data. You should know that they are not evidence. At best, they are equivalent to hearsay. If you are of the opinion that testimonies/anecdotes are of sufficient quality to be called data/evidence, you should not have the degrees that I have mentioned, because – at that level (levels 7 and 8 on the National Qualifications Framework) – we are expected to know that they’re not. And we are expected to know why. And if you cannot accept this, then it is clear that Calli Arcale’s suggestion that you are incompetent is not far off the mark: scientific competence demands understanding that difference.

  31. Aubrey May 2, 2013 at 05:29 #

    WG

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