EpiGate: when blogging under one’s own name can be used against you

23 Aug

Some of the best early advice I received when I started online discussions about autism came from Autism Diva. In an exchange online, she told me that I was giving out too much private information and eventually it would be used against me or my family.

She would know. She had people show up at her home one time. Parents angry at what she wrote who wanted her to know that they knew where she lived.

The blogger Orac at Respectful Insolence has had repeated attempts to silence or hurt him. Most notable of these was an attempt last year by the Age of Autism blog to get Orac fired from his real-life job (discussed here and here). Luckily (a) Orac’s employers respect freedom of speech and academic freedom and (b) Orac’s employers can see through the false accusations that AoA fabricated. (sadly, many of the readers of AoA were unable to parse the confused logic of the post and bought into the story, resulting in them sending calls and emails to Orac’s employers).

Perhaps the most spectacular attempt to silence a blogger was levied against Kathleen Seidel. Ms. Seidel is probably the premiere blogger (in any field) that I am aware of. Her series have exposed some very unhealthy activity in the autism communities. Her work is scrupulously researched and referenced. She raised the ire of some people to the point that she was actually subpoenaed by Cliff Shoemaker (vaccine injury attorney) in a fishing expedition attempting to link her to being supported by pharmaceutical companies and/or political groups. It was the last desperate act of litigation that was about to close, and the subpoena was quashed.

Over the past few days, another story has played out. Liz Ditz discusses it in detail in A Public Servant, Blogging and Tweeting Under His Own Name, Has Been Silenced By His Employers. Orac has covered it in: The consequences of blogging under one’s own name.

Basically the story is this: EpiRen (blogger, tweeter, commenter, etc.) got into a disagreement with another person online. The other person ended up taking his opinion to EpiRen’s real-life employers. EpiRen’s employers have asked him to cease online discussions related to public health.

The Bully wins. It’s quite unfortunate. EpiRen has brought much good information to the online discussion. I must say I am disappointed in EpiRen’s employers. They have stated that EpiRen’s efforts reflect on them. I wonder if EpiRen were to face legal action for his online activities, would his employers aid in his defense? Would they do so for other employees? If not, perhaps they might reconsider what is free, individual, speech.

Controversial issues in hyperbaric oxygen therapy: a European Committee for Hyperbaric Medicine Workshop

22 Aug

After writing the post on the University of California HBOT paper (Brief Report: Hyperbaric Oxygen Therapy (HBOT) in Children with Autism Spectrum Disorder: A Clinical Trial) this new abstract came out: Controversial issues in hyperbaric oxygen therapy: a European Committee for Hyperbaric Medicine Workshop.

It covers a discussion of applications of HBOT which were not yet considered in their previous workshop. This includes autism as a condition to treat with HBOT. Their conclusion: rate HBOT for autism as “not-accepted”.

Every few years, the European Committee for Hyperbaric Medicine (ECHM) publishes its recommendations concerning the clinical indications for hyperbaric oxygen therapy (HBOT). The last recommendations were issued during the 7th European Consensus Conference on Hyperbaric Medicine in 2004. Since then, several publications have reported on the use of HBOT in some indications in which it has not yet been recommended routinely, namely aseptic bone necrosis, global brain ischaemia and autism. Patients or their families push physicians and staff of hyperbaric facilities to use hyperbaric treatment regardless of the quality of the scientific evidence. Therefore, the ECHM Workshop “Controversial issues in hyperbaric oxygen therapy” was convened as a satellite meeting of the 2010 European Underwater and Baromedical Society Annual Scientific Meeting in Istanbul, Turkey in 2010. For each topic, a set procedure was used: first came a general report by specialists in the topic, incorporating a review of current pathophysiological, experimental and clinical evidence. Then, there were reports from hyperbaric facilities that had gained clinical experience in that condition, followed by a general discussion with specialists present in the audience. Finally, statements regarding each topic were proposed and voted on by the audience and these were presented to the ECHM Executive Board for consideration and possible approval. In conclusion, the use of HBOT in femoral head necrosis will be proposed during the next ECHM Consensus Conference to become an ‘accepted’ indication; whilst the use of HBOT in global brain ischaemia and autism should retain its current ECHM recommendations, that it should be ‘optional’ and ‘non-accepted’ respectively.

Brief Report: Hyperbaric Oxygen Therapy (HBOT) in Children with Autism Spectrum Disorder: A Clinical Trial

22 Aug

Hyperbaric Oxygen Therapy (HBOT) is a popular offering in the alternative medical community. It is a therapy that has proven and approved uses (most notably treatment for decompression sickness or carbon monoxide poisoning). It has been proposed as a therapy for autism, and there is already a mixed body of literature on the subject, most with small and/or uncontrolled studies. The most recent study found no benefit.

Another study has now been released, this time from the University of California (UC San Francisco and UC Davis). Brief Report: Hyperbaric Oxygen Therapy (HBOT) in Children with Autism Spectrum Disorder: A Clinical Trial is a small, uncontrolled study. The measure of benefit, at least by the abstract, is the CGI-I (Clinical Global Impression, Improvement scale), which is not particularly objective. Measures of cytokine levels were made, and no changes were observed. So, if any behavioral changes were derived from the HBOT, they were not correlated with cytokine levels.

We sought to determine whether HBOT leads to parental reported behavioral changes and alterations in cytokines in children with ASD. Ten children completed 80 sessions of HBOT and all improved by 2 points on the clinician-rated CGI-I scale (much improved) as well as several parent-completed measures of behavior. The lack of a control group limits the ability to determine if improvements were related to HBOT. Enrolled children did not exhibit abnormal cytokine levels at baseline and no significant changes in mean cytokine levels were observed. Although this study was limited by the small sample size and by the variable nature of cytokines, we found no evidence that HBOT affects cytokine levels or that cytokine levels were associated with behavioral changes.

In general, not a particularly strong study. I’ll note that UCSF’s recent MB12 study put a rather positive spin on a negative result. The fact that these researchers rated the children as improved is not really impressive to me. We don’t need more weak studies on alternative medicine. Those will never really answer any questions.

Teaching Medical Students About Disability: The Use of Standardized Patients.

20 Aug

If you haven’t heard about “standardized patients” before, they are an interesting (and important) part of medical training. Basically think of an actor (often literally an actor looking for some extra money) who portrays a patient with a given malady. He may or may not give all the information needed to the doctor in training. As in, “I’m coughing a lot lately” without saying “I smoke three packs a day”.

How can a doctor learn about the special needs of patients with disabilities? Especially those which may not be obvious, or those which make it difficult to obtain information from the patient? In Teaching Medical Students About Disability: The Use of Standardized Patients the authors consider programs which use standardized patients (SP’s) with disabilities and those portraying disabled subjects.

Standardized patients (SPs), now a mainstay of the undergraduate medical education experience, are beginning to play larger roles in helping students build competencies to better serve patients who have disabilities, in educating students about the lived experiences of persons with disabilities, and in testing students’ understanding of disability-related issues. In this article, the authors discuss several U.S. training programs that involve SPs who have disabilities or SPs who do not have disabilities but who portray patients who do. The authors review the goals of each program (e.g., to provide students with opportunities to gain experience with patients with disabilities), describe their commonalities (enhancing students’ interview skills) and differences (some programs are educational; some are evaluative), and summarize the evaluative data of each. The authors also explore the benefits and challenges of working with SPs with disabilities and of working with SPs without disabilities. Finally, they consider the practical issues (e.g., recruiting SPs) of developing and implementing such programs.

Honestly, I haven’t read the full paper. I’ve been putting off writing about this until I find the time, but that hasn’t happened and I find the subject too interesting to let it just fall by the wayside. I am encouraged to think that training programs include disability in their SP’s, and hope that is is more the rule than the exception.

Loving Lampposts: now on Netflix

19 Aug

Been putting of watching Loving Lamposts, Todd Drezner’s film? Well, it’s now available for streaming on Netflix (possibly for DVD delivery too, I can’t tell for sure).

I discussed the film a number of times when it was released (Loving lampposts, Loving Lampposts: synopsis and director’s statement, Loving Lampposts video clips, and, after I was provided with a review DVD, Loving Lampposts, a review.)

Here are a couple of clips from the film:

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

In his recent Huffington Post article,Labeling Autism And Creating Community, Mr. Drezner takes on some of the questions posed by the proposed DSMV criteria for autism. Specifically, will some people lose their autism labels, and what does this mean.

Alleged Cases of Vaccine Encephalopathy Rediagnosed Years Later as Dravet Syndrome

19 Aug

A case study released this week looks at 5 children who were considered to have vaccine encephalopathy caused by pertussis vaccinations. In this case study, all five children were found to have Dravet Syndrome, a genetic condition involving how the brain uses sodium.

The phrasing of “alleged cases” will likely draw some critique. Parents are very sensitive to the accusation that they didn’t see what happened, in this case seizures and regression following vaccination. Alleged in this case doesn’t challenge what the parents saw, but what it means. It appears that individuals with Dravert syndrome don’t get through childhood without regression (there don’t appear to be cases with the mutation and no syndrome in adults). In the words of the vaccine court, these individuals would have Dravert’s syndrome in any event, making it impossible to show that vaccines are the causation in fact.

Dr. Vincent Ianelli reports over at pediatrics.about.com that the cases include:

14-year-old mentally retarded boy with autistic features, who was a healthy infant until he got his vaccines when he was 7 months old
20-year-old with delayed development and autistic-like features who began having seizures right after getting vaccines at 2 months
2-year-old with a mild expressive speech delay who developed seizures after getting vaccines at age 4 months
4-year-old with “slowing development” who began having seizures after the six month vaccines
3-year-old regressed development and autistic-like features who began having seizures after getting vaccines at age 4 months

In these five case, genetic testing resulted in a diagnosis of Dravet Syndrome.

From Dr. Ianelli:

Dravet syndrome is a rare, genetic cause of encephalopathy that causes seizures that are hard to control and developmental delays.

Since fever is the usual trigger of the first seizure and subsequent seizures, it is important that children with Dravet syndrome get all of their vaccines, since natural infections will cause more fever and put them at risk for more seizures. In another study, “A retrospective study of the relation between vaccination and occurrence of seizures in Dravet syndrome,” only 16% of patients with Dravet syndrome had a vaccine related seizure as their first manifestation.

The researchers also state “that although vaccination might trigger an earlier onset of the presenting symptoms of Dravet syndrome, there is no evidence that the outcomes, in terms of subsequent seizure types or intellect, are any different between those patients with Dravet syndrome whose symptoms started within 2 days of vaccination and those whose symptom onset was not related temporally to vaccination.”

Here is the abstract:

Dravet syndrome is a rare epileptic encephalopathy linked to mutations in SCN1A (neuronal sodium channel ?1 subunit) and characterized by an onset in infancy with polymorphous seizure types and developmental decline. It was reported recently that a proportion of patients previously diagnosed with alleged vaccine encephalopathy might possess SCN1A mutations and clinical histories that enabled a diagnosis of Dravet syndrome, but these results have not been replicated. We present here the cases of 5 children who presented for epilepsy care with presumed parental diagnoses of alleged vaccine encephalopathy caused by pertussis vaccinations in infancy. Their conditions were all rediagnosed years later, with the support of genetic testing, as Dravet syndrome. We hope that these cases will raise awareness of Dravet syndrome among health care providers who care for children and adolescents and aid in earlier recognition and diagnosis.

This isn’t the first work linking alleged vaccine encephalopathy with Dravet syndrome in some cases. Last year a study in The Lancet, Effects of vaccination on onset and outcome of Dravet syndrome: a retrospective study (also summarized in Pertussis Vaccination Triggers Dravet Syndrome in Predisposed Children) came to the conclusion:

Vaccination might trigger earlier onset of Dravet syndrome in children who, because of an SCN1A mutation, are destined to develop the disease. However, vaccination should not be withheld from children with SCN1A mutations because we found no evidence that vaccinations before or after disease onset affect outcome.

The anchor author on that study has a previous study, De-novo mutations of the sodium channel gene SCN1A in alleged vaccine encephalopathy: a retrospective study. They found 11 of 14 patients with alleged vaccine encephalopathy had Dravet syndrome (SMEI). Here is the abstract:

BACKGROUND:
Vaccination, particularly for pertussis, has been implicated as a direct cause of an encephalopathy with refractory seizures and intellectual impairment. We postulated that cases of so-called vaccine encephalopathy could have mutations in the neuronal sodium channel alpha1 subunit gene (SCN1A) because of a clinical resemblance to severe myoclonic epilepsy of infancy (SMEI) for which such mutations have been identified.

METHODS:
We retrospectively studied 14 patients with alleged vaccine encephalopathy in whom the first seizure occurred within 72 h of vaccination. We reviewed the relation to vaccination from source records and assessed the specific epilepsy phenotype. Mutations in SCN1A were identified by PCR amplification and denaturing high performance liquid chromatography analysis, with subsequent sequencing. Parental DNA was examined to ascertain the origin of the mutation.

FINDINGS:
SCN1A mutations were identified in 11 of 14 patients with alleged vaccine encephalopathy; a diagnosis of a specific epilepsy syndrome was made in all 14 cases. Five mutations predicted truncation of the protein and six were missense in conserved regions of the molecule. In all nine cases where parental DNA was available the mutations arose de novo. Clinical-molecular correlation showed mutations in eight of eight cases with phenotypes of SMEI, in three of four cases with borderline SMEI, but not in two cases with Lennox-Gastaut syndrome.

INTERPRETATION:
Cases of alleged vaccine encephalopathy could in fact be a genetically determined epileptic encephalopathy that arose de novo. These findings have important clinical implications for diagnosis and management of encephalopathy and, if confirmed in other cohorts, major societal implications for the general acceptance of vaccination.

A recent study out of Germany took a bit more cautious interpretation: A retrospective study of the relation between vaccination and occurrence of seizures in Dravet syndrome. But the abstract does not address the question of whether outcome depends upon whether the first seizure is possibly vaccine related or not.

At least two cases of have been heard in the vaccine court claiming vaccine injury in children with Dravet syndrome. Both cases (here and here) were denied compensation.

More information about Dravet syndrome can be found at the NIH website, and dravet.org

Autism Science Foundation issues new request for scientific grant proposals

18 Aug

The Autism Science Foundation funds research. They have funded predoctoral and postdoctoral researchers and are seeking proposals for this year’s round of grants. Personally, I like this focus. I like the idea of bringing good new people into autism research.

Here is the press release:

AUTISM SCIENCE FOUNDATION ISSUES NEW REQUEST FOR SCIENTIFIC GRANT PROPOSALS
Grants will fund pre- and postdoctoral autism research fellowships

(August 18, 2011—New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it had issued a new request for scientific proposals. ASF is inviting applications for Pre- and Postdoctoral Training Awards from graduate students, medical students and postdoctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders. In the past two years, ASF has funded over $400,000 in pre and postdoctoral grants.

“This is one of our most important funding mechanisms” said Alison Singer, president of the Autism Science Foundation. “The pre- and postdoctoral fellowships not only build our knowledge about what causes autism and how best to treat it, but also build our future by encouraging outstanding young investigators to dedicate their careers to autism research.”

“Outstanding research is the greatest gift we can offer our families” said Karen London, ASF co-founder. “We are so grateful to all our donors and volunteers who have come together to support autism research and who make these grants possible.”

The proposed training must be scientifically linked to autism. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, studies employing model organisms and systems, and studies of treatment and service delivery. Applications must be received by November 18, 2011.

Additional information about the RFA can be found at www.autismsciencefoundation.org/ApplyForaGrant.html
The Autism Science Foundation is a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to
the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
Grant applications will be reviewed by members of ASF’s Scientific Advisory Board (SAB) and other highly qualified reviewers. Current SAB members include Dr. Joseph Buxbaum (Mt. Sinai School of Medicine); Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School); Dr. Sharon Humiston (University of Rochester); Dr. Bryan King (University of Washington, Seattle); Dr. Ami Klin (Emory University); Dr. Harold Koplewicz (The Child Mind Institute); Dr. Eric London (New York Institute for Basic Research); Dr. Catherine Lord (New York Institute for Brain Development); Dr. David Mandell (University of Pennsylvania/CHOP); and Dr. Matthew State (Yale Medical School).

To learn more about the Autism Science Foundation’s grant programs, and to read about projects funded through this mechanism in prior years, visit www.autismsciencefoundation.org/ApplyForaGrant.html

Media Contact Info:

Dawn Crawford
Autism Science Foundation
dcrawford@autismsciencefoundation.org

The Autism Science Foundation has posted this to their blog: ASF Issues New Request for Scientific Grant Proposals: Grants will fund pre- and postdoctoral autism research fellowships

Why is Autism Speaks sponsoring a conference featuring Andrew Wakefield?

18 Aug

It’s no secret that the National Autism Association is a staunch supporter of Andrew Wakefield. Mr. Wakefield, of course, is the researcher whose work on MMR and autistic children promoted the vaccine/autism link. Mr. Wakefield’s work was fraught with ethical lapses and research fraud. In short, from my perspective, Mr. Wakefield may rank as the person who has caused the most harm within the autism communities in recent decades.

Check the speaker list for the upcoming NAA conference. I’ll draw your attention to two points. First, Andrew Wakefield is scheduled to speak. Second, Autism Speaks is listed as a sponsor of the conference, sharing space with an HBOT company and a mail-order medical laboratory.

Mr. Wakefield is scheduled to speak about his next book. He has been involved with a family in Arizona who are battling child protective services. Here is the blurb on his upcoming talk:

Hoping for Perpetual Sunshine

This presentation is the subject of a new book coming out the spring of 2012. It deals with the hazards of pursuing a diagnosis of Munchausen Syndrome by Proxy (MSBP) in children with an Autistic Spectrum Disorder (ASD), particularly those with gastrointestinal (GI) disease and/or dysfunction. Specifically, it reviews the symptomatic presentation of GI disorders and, the frequency and nature of GI disease in affected children. It discusses the history of MSBP and briefly reviews alleged cases involving “factitious” GI symptoms. The main part of the talk will describe the experience of one family, deconstructing the evidence against the parents and their alleged fabrication of their children’s health issues, in order to identify not only the shortcomings of the diagnosis itself, but also the systematic problems that arise out of institutionalized ignorance. Deficiencies on the part of Social Services, Child Protective Services, the judiciary, and the medical profession, are identified and analyzed in respect of the published science on the presentation, pathogenesis, and treatment of autism.

Autism Speaks has a choice in where to spend their money and where to spend their reputation. Sponsoring a conference which brings Andrew Wakefield to speak to a segment of the autism community is not a wise choice, in my opinion.

Study Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

16 Aug

It is known that the chances of having an autistic child are higher for families who already have an autistic child. This is the “recurrence risk”. In the past, the recurrence risk has been estimated at between 3 and 10%. A study just out (and discussed somewhat yesterday) puts the risk at something closer to 20% (18.7%). This is a fairly large study, where they monitored the baby siblings in families with an autistic child. They were watching these baby sibs and testing them to see which ones had an autism spectrum disorder (ASD). This makes this study much more powerful in that they are much less likely to miss any ASD baby sibs.

Here is the abstract:

OBJECTIVE: The recurrence risk of autism spectrum disorders (ASD) is estimated to be between 3% and 10%, but previous research was limited by small sample sizes and biases related to ascertainment, reporting, and stoppage factors. This study used prospective methods to obtain an updated estimate of sibling recurrence risk for ASD.
METHODS: A prospective longitudinal study of infants at risk for ASD was conducted by a multisite international network, the Baby Siblings Research Consortium. Infants (n=664) with an older biological sibling with ASD were followed from early in life to 36 months, when they were classified as having or not having ASD. An ASD classification required surpassing the cutoff of the Autism Diagnostic Observation Schedule and receiving a clinical diagnosis from an expert clinician.
RESULTS: A total of 18.7% of the infants developed ASD. Infant gender and the presence of >1 older affected sibling were significant predictors of ASD outcome, and there was an almost threefold increase in risk for male subjects and an additional twofold increase in risk if there was >1 older affected sibling. The age of the infant at study enrollment, the gender and functioning level of the infant’s older sibling, and other demographic factors did not predict ASD outcome.
CONCLUSIONS: The sibling recurrence rate of ASD is higher than suggested by previous estimates. The size of the current sample and prospective nature of data collection minimized many limitations of previous studies of sibling recurrence. Clinical implications, including genetic counseling, are discussed.

The full paper is free online.

Since this was already presented here and elsewhere, I’ll point out a few findings that I found interesting:

1) 41% of the baby sibs received autistic disorder diagnoses. The remaining 59% received PDD-NOS diagnoses.
2) The recurrence risk did not depend on the “functioning status” or “severity” of the autism for the first child. They used ADOS and IQ scores to measure “severity”.
3) the gender of the first autistic child does not increase the recurrence risk. So, if a family has an autistic daughter, the recurrence risk is the same as if the autistic child is a son. My recollection is that previous studies indicated a high recurrence risk if the older sibling was a daughter.

Autism Baby Siblings Study: recurrence risk 19%

15 Aug

Results of the MIND Institute’s baby sibling study have been published in the journal Pediatrics. The study puts the recurrence risk of autism at 19%. In other words, a family with one autistic child has, on average, a 19% chance that a subsequent child will be autistic. The study authors stress that the risk may be higher in some families and lower in others.

More discussion can be found in various news outlets carrying the story, including

http://m.heraldextra.com/news/science/health-med-fit/article_a90c6549-3444-5b6a-800a-85aba7234914.html

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