I finally got around to creating a ‘Fan’ page on Facebook for LBRB as an alternative to the Networked Blog. I do understand theres an unofficial page floating around but please consider this the official LBRB page.
Also please take the time to click the ‘like’ box (below on the right) to add to the number of fans LBRB has (currently…erm…1…me)
This has been reported in a number of places, including the New York Times in their article Lilly Stops Alzheimer’s Drug Trials.
From the NY Times:
Eli Lilly halted two late-stage clinical trials of an experimental Alzheimer’s treatment on Tuesday, representing a setback to one leading theory on treating the degenerative disease and a new blow to Lilly’s business prospects.
One defining feature of Alzheimers disease is the presence of amyloid plaque in the brain. The now-halted clinical trial was for a drug which reduces this plaque.
The basic idea is fairly straightforward: if plaque is present in the brains of those with Alzheimer’s, removing the plaque may help reduce or reverse the symptoms. Instead, researchers were finding that the drug was making symptoms worse. Again from the times:
The company said patients who had taken the drug, intended to reduce plaque in the brain, actually showed worse cognitive functioning and less ability to perform daily living tasks than patients who had taken a placebo.
Why bring this up on an autism blog? Because this trial gives a good example of why I am very concerned about the use of untested therapies on autistics. It isn’t because of some objection to a “cure”. There is no existing autism cure. There is no autism cure proposed or in any stage of a clinical trial. While there is some very good and important discussions about any potential cure, it is for the present a hypothetical discussion. No, it isn’t the cure debate which drives me. It is safety. Plain and simple.
Consider autism therapies (both alternative and off-label) from a viewpoint of safety for the moment with the lessons learned from the Alzheimer’s trial.
Clinical trials are all about safety and efficacy. Is the therapy (drug) safe? Does it work? Before a clinical trial is even started, there has to be some reason to believe that the therapy would be safe and effective. Researchers have to ask the question, “what will this do?” In the Eli Lilly Alzheimer’s trial, they had reason to believe that the drug would reduce amyloid plaque. They had (I assume) some earlier trials to prove the drug reached some level of safety. With that in hand, Eli Lilly went forward to large-scale testing with people and they found that, at least for their test group (people with somewhat advanced Alzheimer’s disease), the drug was harmful.
From the NY Times story:
Lilly’s drug was intended to reduce production of so-called amyloid beta plaques in the brain by inhibiting the activity of an enzyme called gamma secretase.
Dr. Siemers of Lilly said the failed trials might indicate that too much reduction in amyloid beta unexpectedly harms cognitive functions, or it may be that the problems arose from the drug’s effect on some 20 other proteins.
Unintended and unforeseen consequences.
Consider alternative therapies being applied to autistics. For example, consider anti-inflammatory drugs. These are existing drugs used off-label, so some safety data are available. There is evidence of inflammation in the brains for some autistics, so why not treat it?
Because we don’t understand why there is inflammation in the brains of autistics. Because of that, we don’t know if there are any unintended consequences of anti-inflammatory therapies. From a story last year in the Chicago Tribune, this section discussing the team from Johns Hopkins/Kennedy Krieger which first published on neuroinflammation in autistics:
“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the [Johns Hopkins] team wrote.
Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”
There are other classes of alternative therapies used in autism. Therapies which most likely are doing nothing beyond the placebo effect are in one class. For example, homeopathy. I don’t spend a lot of time writing about homeopathy. In fact, I don’t know if I have blogged about it at all. Even though it is bad science, it isn’t really dangerous. Another class of alternative therapies are those based in really bad science and which carry the potential of harm. Lupron comes readily to mind. Lupron therapy is based on two levels of very bad science. First, that autism is caused by mercury poisoning. Second, that reducing testosterone in the body will aid it in eliminating mercury. Lupron has been through clinical trials (not for autism) demostrating some level of safety, there are serious known side effects. Worse, the manner in which it is used in autistic children is very problematic–delaying puberty.
Back to the Alzheimer’s trial–I actually welcome the trial itself. I consider those who undertake clinical trials to be very brave individuals. I for one hope there are effective therapies for Alzheimer’s and other forms of dementia soon. It is a great fear for most, if not all, of us that we spend the last years of our lives with dementia. For the parent of a disabled child, this fear is only compounded. The thought of spending my last years draining resources I would rather leave to my child is one of the worst futures I can imagine.
OK, so not ‘new’ news. I want to look at this story’s opening as a kind of case-study into what binds and separates the autism community.
[researchers have]…found in a new study that autism can be partially explained by abnormalities in certain genes. The group’s results could, in the long run, pave the way for more appropriate treatments for autism.
Now, camp one, to which one could add the Age of Autism anti-vaxxers would snarl at the uselessness of this study. They ‘know’ that genes play little to no part in autism and that the real issue is that of vaccines.
Camp two, to which one could say shades into camp one and who you could add Harold Doherty to would bemoan the fact that yet another gene study had been done, would ignore the successes it has brought in terms of giving us more data and grump about how ‘the environment’ had been ignored.
Camp three, to which you could add Lisa Jo Rudy’s autism.about.com site would acknowledge that this was an interesting study but maybe ask valid questions about the context into which you could place this one single study. Knowing Lisa Jo she would also be interested in what exact therapies might be on offer as a result of this study.
Camp four, to which I would hope you could add LBRB and which possibly shades into camp three a little too, would be interested in the the story behind the science as well as the science itself, would hope to get an interview with one of the authors and would ask them what future science might ‘spin off’ from this study. Depending on the answers we might also editorialise a little on the need to be responsible with the science.
Just an interesting little game, of no import, as to how the community – itself a spectrum – is separated. Some say this is a bad thing and that we need unity. I disagree. I think we need diversity, as I do in most things. We even need an Age of Autism to play the token fool.
OK, so its well known to LBRB readers that I don’t think its ever been scientifically established that there has been such a thing as an autism epidemic but even so, looking at why autism numbers have changed over a certain period of time – the period of time people believe is part of the ‘epidemic’ – should be a good way to determine what contributed to that time periods rise in autism.
So thats what Peter Bearman did. Summed up well in this weeks New Scientist, Bearman’s study offers the first look at what actually did cause the ‘epidemic’.
Better diagnosis
Diagnostic changes are the most important influence. After 1987, the definition of autism used in California was broadened several times. Bearman and his colleague Marissa King examined the medical records of around 7000 Californian children with autism and found that one in ten had initially been diagnosed with mental retardation. Extrapolated to the state as a whole, they estimate that this change in diagnosis created almost 5000 extra cases of autism between 1993 and 2005, or 26 per cent of the increase of recorded over that period.Greater awareness
Social influence accounts for another big chunk of the overall increase. Parents are more aware of the disorder than they used to be, and so those whose children who have mild forms of autism have become more likely to seek out diagnosis.Bearman and his colleague Ka-Yuet Liu quantified this effect. They first estimated how the chances of a child being diagnosed with autism increase if he or she lives close to a child that has already been diagnosed. They then plotted the addresses of children with and without autism in California to calculate the number of children who had grown up close to a child diagnosed with the condition. They were then able to calculate the fraction of extra cases that would have been diagnosed as a result of social interactions. They put this figure at 16 per cent.
Older parents
The final contribution to the rise in diagnoses comes from demographics. Couples in California are having children later in life, as they are in much of the rest of North America and Europe. That is pushing up autism rates, because autism is triggered by genetic mutations that older parents are more likely to pass on to their children.Bearman and King calculated that these older parents are responsible for 11 per cent of the extra autism cases.
So these total 53% of the so-called ‘epidemic’. What about the missing 47%? Well, Professor Roy Grinker says:
Autism used to be highly stigmatised, in part because it was thought to be due to poor parenting. The removal of that stigma has made doctors and parents more willing to recognise the disease, which will have contributed to [some of] the extra cases…This and other social causes, together with uncertainty in the number of cases that can be attributed to the factors already studied by Bearman, could account for much or all of the unexplained half
But note Grinker doesn’t say it definitely does. This is because he knows as a careful scientist it hasn’t been looked at.
So what can we take from Bearman’s work? In my opinion we can take the fact that as soon as the questions regarding non-environmental causes were actually looked at and studied, there were numerical values that could be applied to their contribution. There are other non-environmental causes which Bearman didn’t look at which would probably be found to contribute to the other half.
What about the alleged environmental causes? It would not surprise me in the least if it were found that there were some. But as to what they are, the environmental lobby are still so hung up on vaccines they don’t seem to want to look at other possible environmental issues. Maybe its time they dropped the vaccine nonsense and got involved in some decent research. Just a thought.
Lives lost to autism is a new website with what seems at first glance to have an excellent reason for existence – to record all the non-natural deaths of autistic people.
But the name ‘Lives lost to autism’, the strapline ‘For many, autism can be deadly.’ and most particularly the statement ‘This site tells the story of the precious lives cut short by autism.’ are very misleading. Blaming autism for murder is utterly misleading. Autism didn’t murder any of the children listed as murder victims – or the ones that haven’t been listed either.
The site seems to be set up and run by Ginger Taylor (left) who’s position on autism has grown more and more extreme over the years. It seems now she is happy to denigrate autism itself as a murderous entity.
Should there be a site where victims of murder AND natural deaths are remembered? Of course there should, its a great idea. But to politicise it so graphically and so ham-fistedly is wrong. Its a testament to the ideas of Ginger Taylor and not a lot more right now.
According to study author Christine Ecker in today’s Guardian:
We know already that people with autism have differences in brain anatomy and some regions are just bigger and smaller or just different in shape…[o]ur technique can use this information to identify someone with autism.
The study used 20 non autistic controls and 20 autistic people – all adults – and found ‘significant differences’ in the grey matter areas of the brain which control behaviour and language. This is nothing new in itself, differences in brain structure have long been known about in regards to autism. Whats new in this study is the method – and resultant accuracy – of the detection of autism.
In the experiment, Ecker showed that her imaging technique was able to detect which people in her group had autism, with 90% accuracy. “If we get a new case, we will also hopefully be 90% accurate,” she said. The research, supported by the Medical Research Council, Wellcome Trust and National Institute for Health Research, is published today in the Journal of Neuroscience.
If this is established as a viable method (Carol Povey of NAS states that further testing is still required) then it’ll be the first true objective test for autism ever developed. So far, as everyone knows, autism is diagnosed based on the opinion of a clinician (or team of specialists). Whilst they will probably still play a role, this test offers an objectivity that would be unparalleled. It would also have the interesting effect of making the DSM diagnosis largely obsolete.
A new Cochrane Review looks at the issue of SSRI’s in use for autistic populations.
OBJECTIVES: To determine if treatment with an SSRI: 1. improves the core features of autism (social interaction, communication and behavioural problems); 2. improves other non-core aspects of behaviour or function such as self-injurious behaviour; 3. improves the quality of life of children and their carers; 4. has short and long term effects on outcome; 5. causes harms.
SSRIs (Selective serotonin reuptake inhibitors) do exactly what they say – they combat depression by ‘boosting’ serotonin. They are usually fairly effective in that role, although not all people with depressive tendencies use SSRIs, the majority tolerate them well. The most famous SSRI is Prozac.
The outcome of the study was:
There is no evidence of effect of SSRIs in children and emerging evidence of harm. There is limited evidence of the effectiveness of SSRIs in adults from small studies in which risk of bias is unclear
This is worrying. It indicates to me that autistic people are being treated for autism with SSRIs. Bearing in mind I haven’t read the full paper, it does read to me as though we are verging into the territory of chemical cosh.
A chemical cosh is shorthand for the administration of drugs to people who don;t actually require its benefit but who are kept quiet by its effects or side effects. This isn’t the fault of the drug or even the manufacturer but the prescriber. This is also not a situation unique to autism but is frequently found throughout all areas of mental health.
I just got this announcement:
The Interagency Autism Coordinating Committee (IACC) Services Subcommittee will be holding a conference call on Tuesday, August 10, 2010 from 2:00 PM – 3:30 PM ET. For more information see: http://iacc.hhs.gov/events.
The purpose of this meeting will be to discuss plans for the IACC Services Workshop that will be held on November 8, 2010 in Rockville, Maryland. (More information about the workshop is posted on the IACC website and will continue to be updated.)
To access the conference call:
USA/Canada Phone Number: 800-369-3340
Public access code: 8415008Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.
“Pharma shill!” I get called that fairly often. People claim (incorrectly) that I am paid for what I do here at LeftBrainRightBrain. That I only write what I write because I am a shill.
When this comes up I point out that, no, I am not paid. I find the idea that there are many paid bloggers like that to be a bit of a stretch anyway.
I just found this email in our spam comment queue:
“Hi! We are browsing for potential future writers, would likely you be intrigued? This process is not going to get you rich yet unfortunately there is an alluring pay and if you literally appreciate publishing then now this gig is for you.”
Yes, I could get “alluring pay”.
All I have to do is write for a blog that touts HBOT. Yes, a hyperbaric oxygen therapy blog.
I could be an alt-med-pharma-shill!
I think I’ll pass.
A new study is looking at how messages regarding vaccines are assimilated by the US public.
Immunization rates continue to be high but concerns about vaccine safety are increasing. Current communication methods do not appear to lead to more comfort with vaccines, making it more important than ever that state and territorial public health agencies, charged with promoting, monitoring and tracking vaccine use, understand the growing reluctance among parents and guardians to fully vaccinate their children and identify effective messages about the benefits of vaccines.
According to this report 5% of all respondents mentioned autism-related concerns and above average amount of people designated the statement:
Vaccines can cause serious health problems like…autism
‘convincing’.
and the conclusion states:
…Current communication methods based on scientific research do not appear to lead to more comfort with vaccines…
Reading this blog post one would tend to think it was a bad report for vaccines. Far from it, its wholly positive, which one will gather if one reads the whole thing. However, the aspect of the report I’m particularly concerned with (autism) shows that there is a growing trend of belief and a shrinking trend of science in what leads a parent to make up their mind. And apparently autism plays a relatively large percentage in that decision making process.
So what do we do about that? The science is clear that vaccines don’t cause autism but the US public seem to be ignoring such science. What else is there available that we can use? Because take note, we in the autism community have an obligation to society as much as they do to us. Their obligation is to do right by autistic people. Our obligation is continue to fight the idea that vaccines cause autism. If we do not then the public will believe that *all* parents of autistic people and autistic people themselves believe that vaccines cause autism – thats a very dangerous place to be.
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