EmpowHER autism blogger…still failing

14 Oct

I recently wrote about a series of rather unfactual articles on EmpowHER, EmpowHer blogs the autism vaccine story…and fails. I checked back on her discussion. Here’s part of her latest comment:

Actually, most of the transmission of whooping cough to newborns is from their vaccinated parents and siblings. The vaccine has been found to only last 3 years so because people are vaccinated repeatedly through childhood and teens, it wears off at a time they are childbearing. In the past, the majority of people had whooping cough as children so they developed life-long immunity to it so could not infect their own children and in the past, most mother’s who had had whooping cough, also breast fed which meant their babies were protected from whooping cough during the vulnerable newborn phase.

Let’s take a look at this, shall we?

Does a pertussis infection give a person “lifelong” immunity? No. Does a vaccine give only 3 years of immunity? No. A journal article (first one on my search for “immunity from pertussis”) states otherwise:

Duration of immunity against pertussis after natural infection or vaccination.
Wendelboe AM, Van Rie A, Salmaso S, Englund JA.
Source

Department of Epidemiology, University of North Carolina-Chapel Hill, Chapel Hill, NC 27599, USA. awendelboe@unc.edu
Abstract

Despite decades of high vaccination coverage, pertussis has remained endemic and reemerged as a public health problem in many countries in the past 2 decades. Waning of vaccine-induced immunity has been cited as one of the reasons for the observed epidemiologic trend. A review of the published data on duration of immunity reveals estimates that infection-acquired immunity against pertussis disease wanes after 4-20 years and protective immunity after vaccination wanes after 4-12 years. Further research into the rate of waning of vaccine-acquired immunity will help determine the optimal timing and frequency of booster immunizations and their role in pertussis control.

So, if we subject people to an infection rather than a vaccination, they might get roughly double the immunity time. Infection comes at the cost of weeks or months of painful coughing, potential permanent harm or death.

The first website in my simple and quick search was the New York state health department.

Neither vaccination nor natural infection with pertussis guarantees lifelong protective immunity against pertussis. Since immunity decreases after five to ten years from the last pertussis vaccine dose, older children, adolescents and adults are at risk of becoming infected with pertussis and need vaccination.

What about “in the past, most mother’s who had had whooping cough, also breast fed which meant their babies were protected from whooping cough during the vulnerable newborn phase.”

Well, yes and no. Protected, yes. As well as being vaccinated? No. Completely protected? No. Whooping cough resulted in a death rate of 4.5/1000 infants in the U.S. in 1900, a year when I expect breast feeding was near 100%.

EmpowHER claims that:

EmpowHER.com provides credible, evidence-based health content from over 400 world-class health care professionals, experts and providers.

Perhaps they could hire writers who would spend 30 seconds doing a simple web search to back up their unfounded claims. Not much to ask from “world class” “experts”.

Seriously, who allowed this comment to go through “Also, the vaccines don’t technically immunize, they change the presentation of the disease.”

Seriously wrong. EmpowHER can, and should, do much better.

Defending alternative medicine and autism: the charges against Anju Usman

14 Oct

In Illinois charges DAN doctor with unethical behavior, LBRB writer Ken Reibel discussed the case recently brought against alternative medical practitioner Dr. Anju Usman. These charges follow on a civil suit brought by the parent of an autistic child seen by Dr. Usman. This charges in this case will require that Dr. Usman defend many of the common practices in alternative medicine.

The complaint is:

DEPARTMENT OF FINANCIAL AND PROFESSIONAL REGULATION of the State of Illinois,

v.

ANJUM I. USMAN, M.D.

No. 200904994

One short paragraph in the complaint sums up a big piece of where this suit has the possibility to strongly influence how alternative medicine “treats” autism: None of the treatments described above has been proven to influence the course of autism.

Here is a section of count 1:

17. Hair analysis does not provide a basis for the diagnosis of heavy metal toxicity.
18. Provoked urine testing does not provide a basis for the diagnosis of heavy metal toxicity. The American College of Medical Toxicology has determined that provoked testing has not be scientifically validated, has no demonstrated benefit and may be harmful when used for assessing patients for metal poisoning.
19. Porphyrin testing does not provide a reliable basis for the diagnosis of heavy metal toxicity.
20. Although chelation therapy is FDA-approved for treating lead poisoning, it should not be used unless a non-provoked blood (not urine) test shows an extremely high level of lead.
21. Respondent did not obtain a confirmatory blood lead test or record any source of lead exposure.
22. The record contains no basis for concluding that chelation therapy was appropriate.
23. The record does not contain adequate infonlled consent for any of the prescribed nonstandard tests or treatments. The consent fonns used did not accurately present the risks and/or benefits of tests and treatments. Although it mentioned experimental drug use, these were not administered as part of a proper experimental protocol.
24. The informed consent form states that chelation therapy “is considered controversial for the generalized treatment of chronic low or high level lead toxicity, mercury toxicity, or for other heavy metal toxicities, either acute or chronic.” This statement is misleading because there is a clear scientific consensus that it is inappropriate for treating lead toxicity without demonstrating that toxicity exists and that the level is very high.
25. Throughout the treatment period, Respondent made statements to AC’s mother that the prescribed treatments had positive clinical benefits for children with autism, despite the lack of empirical research supporting Respondent’s position.
26. The record does not document any reason why AC should have received unproven treatments.
27. Spironolactone, which is potentially dangerous, was prescribed without justification.
28. Despite a nonnal selenium level, Respondent repeatedly and unnecessarily prescribed selenium supplements and continued to do so even when AC eventually showed a high level.
29. That Respondent abused the physician/patient relationship by taking unfair advantage of a patient’s vulnerability in that Respondent utilized unproven drugs and medicine to treat AC, a pediatric patient diagnosed with autism.
30. That the foregoing acts and/or omissions of Respondent are grounds for revocation or suspension of a Certificate of Registration pursuant to 225 Illinois Compiled Statutes (2002), Section 60122(A)(20), relying on the Rules for the Administration of the Medical Practice Act, Illinois Administrative Code Title 68, Section 1285.240(b)(1 )(C), and (2) (C).

There are many methods by which “heavy metal toxicity” is diagnosed by alternative medical practitioners. These methods are not demonstrated to be accurate, and are not accepted by actual medical toxicologists. These include hair analysis, provoked urine testing and porphyrin testing.

A prime example is provoked urine testing. A thorough discussion can be found here. A provoked urine test involves giving an individual a chelator and then testing the urine for heavy metals. Everyone (every thing, every animal) has some level of mercury. A chelator will force the body to excrete some level of the heavy metals inside, so it is no surprise that the levels obtained are “elevated”. The problem is that there is no standard by which one can compare the provoked urine to determine if the person actually has heavy metal poisoning.

The method is also called “challenge” testing. The American College of Medical Toxicologists have a position statement on this:

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

More quotes from the complaint:

From Count III

That Respondent made false or misleading statements regarding the efficacy or value of the medicine, treatment, or remedy prescribed by Respondent in the treatment of any disease or other condition of the body in that Respondent made false or misleading statements regarding the efficacy of chelation therapy in the treatment of autism.

From Count V

29. That Respondent engaged in a pattern of practice or other behavior that demonstrates incapacity or incompetence to practice in that Respondent:
a. Repeatedly prescribed and administered unproven and medically unnecessary treatments to AC despite the lack of empirical research demonstrating the effectiveness of the prescribed treatment plans; and
b. Demonstrated extreme departure from rational medical judgment in the care and treatment of AC.

This isn’t a criminal complaint. Rather it is an ethics or “professional regulation” complaint. The disciplinary action called for if the case is proven involves Dr. Usman’s license:

WHEREFORE, based on these allegations, the Department of Financial and Professional Regulation of the State of Illinois, by Laura E. Forester, its Chief of Medical Prosecutions, prays that the Physician and Surgeon license of ANJUM I. USMAN, M.D., be revoked, suspended, placed on probation or otherwise disciplined.

Illinois charges DAN doctor with unethical behavior

13 Oct

According to the Chicago Tribune, the Illinois Department of Financial and Professional Regulation has charged a well-known Naperville physician with “unprofessional, unethical and/or dishonorable conduct.”

Dr. Anju Usman, a familiar face at anti-vaccine conferences in the US and abroad,   allegedly lied about or exaggerated the value of treatments, and “demonstrated extreme departure from rational medical judgment” and “abused the patient/physician relationship.” Regulators are moving to have Usman’s medical license revoked or suspended, or otherwise disciplined.

The report, written by science writer Trine Tsouderos, says:

The complaint, filed Wednesday, revolves around Usman’s care of a boy diagnosed with autism whose treatment was described in the Tribune’s series “Dubious Medicine.” The series detailed the many unproven therapies prescribed for the boy and found that many alternative treatments for autism amount to uncontrolled experimentation on children.

According to the complaint, the boy began seeing Usman shortly after he was diagnosed with mild to moderate autism in the spring of 2004. He was not yet two.

Usman allegedly diagnosed the child with a calcium-to-zinc imbalance, yeast, dysbiosis, low zinc, heavy metal toxicity and abnormally high levels of aluminum, antimony, arsenic, cadmium, copper, lead, nickel, silver, tin, titanium, and selenium.

Dr. Anju Usman

Usman is the defendant in a civil suit filed by the boy’s father in 2010. Also named are Dan Rossignol, a Florida DAN doctor; and Doctors Data, a Chicago-based laboratory that performs tests used to convince patients that they have dangerously high levels of lead, mercury, or other heavy metals that require “detoxification” to reduce these levels.

Usman is also associated with the 2005 death-by-chelation of five-year-old Tariq Nadama. According to court records, Usman diagnosed the boy with “high aluminum” and referred him to Roy Kerry, a Pennsylvania physician. Kerry, an ear-nose-and throat surgeon, inexplicably treated the boy for lead poisoning.

According to Kerry’s notes, which were published by the Pennsylvania Medical Board:

“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.

Nadama arrested and died in front of his mother during the third chelation round in August, 2005. A year later, Kerry was certified as a DAN doctor after completing an eight-hour training course. Prosecutors declined to charge Kerry for the death, and the state medical board suspended his license for six months and ordered extra training.

Usman spoke at AutismOne in Chicago last May, a cult-like annual gathering that expels skeptical writers and news reporters. Her topic: Prevention & Raising Healthy Kids in a Toxic World.

EmpowHer blogs the autism vaccine story…and fails

12 Oct

Empowher is a blogging network that bills itself as “Improving Health. Changing Lives”. EmpowHER.com “facts” include this statement:

EmpowHER.com provides credible, evidence-based health content from over 400 world-class health care professionals, experts and providers.

Unfortunately, their recent autism coverage has not been credible nor evidence-based. It is not “improving health”. I am referring to a number of articles by Joanna Karpasea-Jones. Here is a list of some recent articles. Even from the titles you can probably guess the slant these stories have taken:

An Introduction to Autism and its Prevalence
Autism’s Theoretical Causes: Diet and Dietary Deficiency: An Editorial
Autism’s Theoretical Causes: Mercury Amalgam Fillings and Anti-D Injections: An Editorial
Autism’s Theoretical Causes: Diet and Dietary Deficiency: An Editorial
Autism’s Theoretical Causes: Genetics and Metabolism–An Editorial
Autism’s Theoretical Causes, Ultrasound Scans: An Editorial

A short example of the problems that plague Ms. Jones’ analysis can be found on her website, Vaccine Awareness Network, where the top article listed on the main page is “Neurotoxic effects of postnatal thimerosal are mouse strain dependent.”

This was a study by Maddy Hornig, Ian Lipkin and D. Chian from 2004. It was dubbed the “rain mouse” study at the time and was touted as an demonstration that thimerosal might cause autism. A few years later, researchers at the MIND Institute tried to replicate the study. They tried hard. They used 10 times as much thimerosal as Prof. Hornig’s group. They couldn’t recreate the results. They concluded, “Considered together the present results do not indicate pervasive developmental neurotoxicity following vaccine-level thimerosal injections in SJL mice, and provide little if any support for the hypothesis that thimerosal exposure contributes to the etiology of neurodevelopmental disorders. ”

In other words, “Neurotoxic effects of postnatal thimerosal are mouse strain dependent” is a study which has been superseded by a more recent study.

When people give you the Hornig study and don’t mention the MIND Institute study, it’s time to be suspicious.

The articles by Joanna Karpasea-Jones are full of examples like this. Old studies which support her idea are presented. Other studies, old and new, which clearly don’t support the idea of vaccine causation are just not mentioned.

There is another recent article on EmpowHer by Dr. Daemon Jones “Vaccinations: Do They Support or Harm the Health of Our Children?” Dr. Jones is a naturopath, so you likely won’t be surprised that her article is very non-specific and presents statements like “This debate will continue in the medical community until there is more concrete data for one side than the other.”

I have news for Dr. Jones: this isn’t a debate in the medical community. This is a debate amongst bloggers like those on EmpowHER who don’t keep up with current research.

On EmpowHer you can vote for each article. You are given three choices: this article (1) Improved my health (2) changed my life and (3) saved my life. You can’t vote, say, “this article is tired old ideas which were discarded years ago” or, “Doesn’t anyone at EmpowHER check the facts of the articles?”

Sonic the Hedgehog and Autism

11 Oct

A lot of abstracts come out each day in autism research. Some are controversial. A few make big advances. Many make small advances. One can never tell what one will learn by following the flow of abstracts.

For example. Did you know there is a “Sonic Hedgehog” protein? (Sonic the Hedgehog being a character from video games). A researcher in Saudi Arabia proposes that it might be involved in autism etiology:

Relationship Between Sonic Hedgehog Protein, Brain-Derived Neurotrophic Factor and Oxidative Stress in Autism Spectrum Disorders.

This probably isn’t one of the “big advances” papers. But, something new, at least to me.

Who should lead the autism rights movement?

8 Oct

An article up on the Washington Times Communities poses the question: Who should lead the autism rights movement? The article cites an amazing discussion that has been going on at The Thinking Person’s Guide to Autism.

If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

Frankly, I think a leader/follower idea isn’t right anyway. Part of this is my own personal bias. I am always suspicious of people who want to lead. Especially people who are absolutely sure of their positions and never waiver from them. That’s just a recipe for disaster. I shy away from people who don’t understand that just because someone doesn’t want to lead, that doesn’t mean that he/she wants to follow. I run from people who are too enamored with leadership and power.

One comment out of the TPGTA series that has resonated with a number of people came from one of Zoe’s posts: “It goes like this: ‘Some parents just want disabled children to speak and disabled adults to shut up.'”

It pretty well sums up much of the divide, and much of the question of “who should lead”. Autism is a spectrum. There is are divisions between adults and parents, and the degree of challenge the autistic faces. Not all “high functioning” autistics are self-advocates. Not all “low functioning” autistics are not self advocates. (and, yes, I hate those “functioning” terms). We need people to advocate for the rights of all on the spectrum. We need advocates who have experiences relevant to the various parts of the spectrum.

That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

There are many things that parents like myself–parents of young children with great challenges–should realize. This, of course, in my own humble opinion. I’ll list only a few.

It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

A common theme I read is from parents writing, “self-advocates are not as disabled as my kid. They can’t relate.” I really dislike the “more disabled than” idea, but accepting that–we parents aren’t as disabled as our kids either. Self advocates can have an understanding of our kids just as we can. Self advocates may have different priorities than our kids. And that’s where being allies comes into play. We support their priorities, they support those of our kids.

Whatever your goal for your kid, improvement, cure, recovery, education…whatever it is, isn’t “becoming capable of self-advocacy” a laudable goal for any kid, disabled or not?

Being an autistic self-advocate (or an autistic non-self-advocate) doesn’t make someone right, nice, friendly, or likeable. Just like being a parent doesn’t make one right, nice, friendly or likeable. No one is saying you have to accept whatever a self-advocate has to say, just like self-advocates don’t have to accept what parents have to say.

The thing about writing a piece like this is that it is sure to annoy someone. Many someones. As Ari Ne’eman wrote in his piece for TTPGTA: “As far as I’m concerned, if we’re uncomfortable, we’re making progress and we shouldn’t stop.”

Back to the idea of leadership. With the passing of Steve Jobs this week, I’ve heard his address to Stanford Graduates a number of times on the radio. One paragraph keeps standing out in my mind:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

He didn’t say, “find someone to follow” or “be a leader and find some people to follow you”. He said, “Don’t be trapped by dogma — which is living with the results of other people’s thinking.”

We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.

The 2011 “Vaccine Safety Conference” in Jamaica

6 Oct

Earlier this year, a conference was held in Jamaica. The declared subject: vaccine safety. Even from the beginning, it was clear that this was no ordinary scientific conference. It had all the signs of a junket. A meet-and-greet for vaccine “skeptics” and wealthy patrons. Precisely the sort of junket that people complain about “Big Pharma” hosting. Well, not precisely. I suspect even Big Pharma doesn’t put on such a lavish event.

The number of speakers was small (only 19), and didn’t include anyone who is a vaccine researcher. 21 presentations were made in the course of a week, leaving a lot of time for people to enjoy the resort and to network.

Talks included “Rethinking the germ theory”, “Vaccination Programs: Prevention or Corruption?” and “Gardasil: Prophylaxis or Medical Misconduct?”.

Getting a picture of the conference agenda? And by “agenda”, I do not mean the schedule.

The conference received some brief public attention when Anderson Cooper interviewed Andrew Wakefield. Mr. Wakefield (who refused to be on the segment if Seth Mnookin were included) appeared via Skype from that conference in Jamaica. Mr. Wakefield’s talk at the conference: “Autism & Vaccines: a Research Strategy Focused on Cause”.

The event was titled: Vaccine Safety|Evaluating the Science Conference. A nearly one week event (January 3-8) in the Tryall Club in Jamaica.

I’ve been to a lot of scientific conferences. I’ve even helped organize scientific conferences. None of them were ever held in a place remotely similar to the Tryall Club. Heck, when I think of “big pharma” hosting junkets for doctors, it’s in places not nearly as nice as the Tryall Club.

In case you didn’t get a chance to see the website, here’s a picture of the Tryall Club:

Nice, isn’t it? The Tryall Club isn’t a hotel. It is a collection of 86 Villas (including 73 privately owned estate villas) plus 13 “great house” suites.

The property’s 86 villas offer visitors a dazzling array of options, from beachfront bungalows to elegant hillside chalets. Each carefully situated villa offers distinctive architectural elements, a singular style and a unique floor plan. A couple may choose a cozy one-bedroom retreat, while an extended family of several generations may opt for a 7- or 8-bedroom manor.

Consider as an example, the six bedroom “Twin Palms” Villa. Cost for 1 week: $30,000, or $5,000 per bedroom. (Cost is $40K/week if you include the master suite). The Villa comes complete with a staff of 9 and “Dining areas are designed to seat 20 guests or more. Formal dining is in the 80’ dining room under Italian chandeliers at place settings of Lalique crystal, Tiffany china and silver from France.”

As I said, not like any conference I’ve ever attended.

So, who put this conference on? Aside from a stay in Jamaica, were the attendees compensated? I wondered these questions so I emailed the contact address on the website. Here’s the response:

The conference was co-sponsored by the National Vaccine Information Center and private individuals and family foundations who are concerned about the safety of vaccine ingredients, preparations, combinations and schedules. Speakers volunteered to speak as is customary for scientific conferences, and accommodations were provided in private homes donated by or as guests of individuals who are concerned about vaccine safety. No funds exchanged hands except to reimburse for travel expenses, which were funded by donations to the National Vaccine Information Center.

The Vaccine Safety Conference

“No funds exchanged hands except to reimburse for travel expenses, which were funded by donations to the National Vaccine Information Center.” Nice. Reimbursing the speakers directly probably isn’t tax deductible. Donating to NVIC is. And it lets NVIC look like they are pulling more money.

Who put this on? The sponsors are listed clearly on the conference website:

Albert J. and Lisa Claire Dwoskin Family Foundation

Cmdr. Richard and Joan Curtis

Mark and Candace Hart

Daisy and Paul Soros

Danny and Stency Wegman

One name jumps out (to me at least): Soros. Sponsors Paul and Daisy Soros. Paul Soros is the brother of George Soros, but is quite well off in his own right.

We are talking some serious money was backing this conference.

Case in point. First in that list is the Dwoskin family. Claire Dwoskin has worked as a board member of the National Vaccine Information Center.

The Dwoskins have hosted fundraisers for political candidates at their home and been guests at White House dinners.

Apparently, they also set up the “vaccine safety” conference website. Mrs. Dwoskin is listed as the contact for the website:

Administrative Contact:
Dwoskin, Claire novaccine4me@XXXXX.com
Vaccine Safety Conference

No, I did not make that email address up. It really is listed as “novaccine4me”. Pause a moment to consider that choice.

The physical address given for the website contact is that of the McLean, Virginia home of the Dwoskins. It is sizable and valuable. As the domain registration reports, this is also the address for “Vaccine Safety Conference”. It seems reasonable to assume that the Dwoskins are the primary organizers of the conference. The Dwoskins also appear to own other valuable property. Mr. Dwoskin is a real estate developer, so this is no great surprise. But, one property which they (or their business) are associated with: Twin Palms. Yes. the 7 bedroom Villa in Jamaica described above. What leads me to believe this? The website twinpalmsjamaica.com is registered to A.J. Dwoskin & Associates.

Seems reasonable to think that the first tier of presenters at the conference were hosted in Twin Palms.

In case you are curious as to the Dwoskins’ position on vaccines, Mrs. Dwoskin wrote in an email to John Stossel of Fox: “Vaccines are a holocaust of poison on our children’s brains and immune systems.”

Seriously. A holocaust of poison.

There is nothing wrong with wealthy people hosting gatherings of people on a subject they feel strongly about. Anyone who chooses an email address “novaccines4me” and considers vaccines “a holocaust of poison” certainly has strong feelings.

Wealthy people have a right to offer their hospitality to people who may promote their views. People with less means have the right to accept the largess of the wealthy.

I have the right to voice my opinion. This was a junket. Seriously. 6 days to have 19 speakers present? Rooms costing $5,000 a week? I wonder how much time at the “vaccine safety” conference was spent talking about safety and how much was spent talking about the “holocaust of poison” view of vaccines.

Next time I hear or read about Big Pharma buying off doctors with exotic junkets I’ll be thinking of Andrew Wakefield, talking via Skype from the Tryall Club in Jamaica.

A very bad week for the XMRV causes disease idea

5 Oct

I opened a recent article with the statment: “Xenotropic murine leukemia virus-related virus (XMRV) has been suggested as linked to chronic fatigue syndrome and autism. This has been rather controversial in both cases.”

The story gets more tangled. The lead researcher promoting the idea has been fired. The Science Insider blog (affiliated with the journal Science) has an article: Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy. Trine Tsuderous at the Chicago Tribune has an article: High-profile 2009 chronic fatigue syndrome study in dispute: Lead researcher fired as journal, institute investigate alleged figure manipulation.

Yes, Judy Mikovits has been released from her post at WPI. The Institute has released a statement on their facebook page:

The Whittemore Peterson Institute is announcing the departure of Dr. Judy Mikovits from WPI. We wish to thank her for her previous work and commitment. The WPI remains committed to a comprehensive research program. Our research team and program remains active, and our lab open to authorized employees. We will continue the critical work of finding answers to M.E. and related diseases.We will use the opportunity created by the departure of Dr. Mikovits to do a full evaluation of our research lab and current research projects. WPI is dedicated to the highest standards in research and patient care, and to advocating for the patients, families and caregivers we exist to serve.

What happened? One big piece of this can be found on the ERV blog as XMRV and chronic fatigue syndrome: For your enjoyment– A magic trick. It really is worth going over there and reading through the discussion.

I am going to take two pieces of data, from two independent experiments, establishing ‘proof’ of two different concepts, presented in to different formats and to different events…

Yes, two figures were presented at different times–and with different interpretations. But, in the end, they were only one dataset.

As ERV points out in the comments section of her article:

As RRM stated, Im sure there is a TOTALLY REASONABLE explanation for this. Im SURE it wasnt intentional. But even if it were that damn post doc again– what does this say about QC at the WPI? What does this say about their standards? What does this say about how carefully and how critically Mikovits is looking at her own work?

The discovery of the two-figures-which-are-one and the release of researcher Mikovits from WPI comes after a huge blow to the science behind the proposed link between XMRV and Chronic Fatigue syndrome. From Science Insider:

The issue came to a head with the recent publication by Science of the nine-lab study. The so-called Blood Working Group, which included the labs run by Mikovits and Ruscetti, failed to reliably find XMRV or other gammaretroviruses in blinded samples from people who previously had tested positive for these viruses. Both Mikovits and Ruscetti co-authored the paper, which invalidated their own assays for XMRV.

Why bring this up on an autism blog? Because XMRV has been proposed as being linked to autism. More recent studies fail to find a link (e.g. PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism).

How did the XMRV/autism discussion get started? Well, as David Kirby wrote a few years ago:

As Dr. Mikovits explained to a television news program in Nevada, “It is not in the paper and not reported, but we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism. It certainly won’t be all, because there are genetic defects that result in autism. But there are also the environmental effects; there is always the hypothesis that, ‘My child was fine and then they got sick, and then they got autism.'”

So, the XMRV/autism story got started with unpublished data by the now fired Mikovits, who claimed that she found XMRV in the blood of autistic children.

For those who remember David Kirby, the idea of him taking extremely weak evidence and creating a sensationalist story out of it is not surprising. Acting without apparent regard for the harm he could be causing, Mr. Kirby linked XMRV to autism through vaccines. Classic David Kirby:

The discovery raises more questions than it answers. What, exactly, is it about immunization that might switch on XMRV viral expression? Could the effect of heavy metals upon cytokine balances be at play? Where did this retrovirus come from, and how did it apparently become so prevalent in children with autism? Did these children inherit the virus from a parent, or was there some other unexplained route of transmission? Why has the NIH said nothing about XMRV in association with autism, and did Dr. Insel know about these findings without sharing them with the IACC?

Mr. Kirby’s style is well represented in the above paragraphs. Pose sensationalist, unsupported ideas as questions. Gives him the chance to put his ideas out there while keeping himself at a distance from the statements.

Now that the XMRV research by Dr. Mikovits is in serious doubt, will David Kirby retract his article on the subject? Will he at least put out an article which informs his readers of the current state of research? Or will he quietly move on to his new project (Death at SeaWorld – Shamu and the Dark Side of Killer Whales in Captivity) without regard for the harm he has caused to the autism community?

I single out Mr. Kirby as an example of the sort of messenger who has promoted ideas like XMRV and autism or XMRV and chronic fatigue. The mercury-causation idea fell apart, but no word from people who promoted it a great deal (like David Kirby). What will happen now that XMRV and autism and XMRV and chronic fatigue are falling apart?

XMRV: False Positive in chronic fatigue syndrome

4 Oct

Xenotropic murine leukemia virus-related virus (XMRV) has been suggested as linked to chronic fatigue syndrome and autism. This has been rather controversial in both cases.

Before we get to the “false positive” report, Science published one of the papers on XMRV and chronic fatigue syndrome

Murine leukemia viruses (MLV), including xenotropic-MLV-related virus (XMRV), have been controversially linked to chronic fatigue syndrome (CFS). To explore this issue in greater depth, we compiled coded replicate samples of blood from 15 subjects previously reported to be XMRV/MLV-positive (14 with CFS) and from 15 healthy donors previously determined to be negative for the viruses. These samples were distributed in a blinded fashion to nine laboratories which performed assays designed to detect XMRV/MLV nucleic acid, virus replication, and antibody. Only two laboratories reported evidence of XMRV/MLVs; however, replicate sample results showed disagreement and reactivity was similar among CFS subjects and negative controls. These results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted.

Reminds me of the Hornig study trying to find measles RNA in autistic children’s intestinal tissues. Multiple laboratories. No link found.

But, what of the older studies claiming a link? Well, Science also has a short article from some of the authors in an earlier paper. They reexamined samples from their study and found that their samples were contaminated with XMRV plasmid DNA:

Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study.

In our 23 October 2009 Report, “Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome,” two of the coauthors, Silverman and Das Gupta, analyzed DNA samples from chronic fatigue syndrome (CFS) patients and healthy controls. A reexamination by Silverman and Das Gupta of the samples they used shows that some of the CFS peripheral blood mononuclear cell (PBMC) DNA preparations are contaminated with XMRV plasmid DNA.”

Again, this is very reminiscent. In testimony for the Omnibus Autism Proceeding, Stephen Bustin discussed contamination (and other) problems with the laboratory searching for measles virus in the samples provided by Andrew Wakefield’s group.

Science ran another article, False Positive, on the XMRV/chronic fatigue story:

For the past 2 years, a controversy has roiled around the purported link between a mouse retrovirus, XMRV, and chronic fatigue syndrome (CFS), a baffling, debilitating disease with no known origin. An October 2009 paper in Science found XMRV in the blood of two-thirds of the CFS patients examined, but more than a dozen labs have failed to replicate it to date. Millions of dollars have gone into clarifying the question, which has had far-reaching consequences for people with CFS and, if the virus lurked in the blood supply, the public at large. A nine-lab study published online this week by Science found that none of the labs could reproducibly detect XMRV or relatives of the virus in blood samples distributed under a blinded code. Science is also running a partial retraction of the original paper, as a contributing lab found that it in fact had a contamination.

More discussion can be found at the blog A Photon in the Darkness as Mikovits XMRV Study “Partial Retraction” and at ERV as XMRV and chronic fatigue syndrome: For your enjoyment– A magic trick.

Other studies have already looked closely and found no evidence of a link: PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism. The current articles in Science do not directly address autism, but they show the serious difficulties involved with studying XMRV and help us to understand how these potential links were made in the first place.

Combating Autism Reauthorization Act signed by President Obama

3 Oct

The commitment to autism research by the people of the United States will continue at a high level. The Combating Autism Act has been reauthorized following the passage of the Combating Autism Reauthorization Act by the legislature and President Obama’s signing it into law.

From the White House Blog, this post by Micahel Strautmanis:

Every single day, I am proud and awed to be working for our President. But, some days simply take the cake. Just a few short months ago, I had a couple of those days. On April 1st, President Obama issued the first ever Presidential Proclamation to mark World Autism Awareness Day. Later that month, I had another special moment when Valerie Jarrett and Health and Human Services Secretary Kathleen Sebelius announced that the President and his administration fully supported reauthorization of the Combating Autism Act (CAA). As a father of a child on the autism spectrum, these were extraordinarily meaningful moments to me.

Today, President Obama signed into law the reauthorization of the CAA. I was once again reminded of the honor that it is to be working for a President who gets it — he knows that persons on the autism spectrum are at the heart of this issue.

I find the reauthorization and the entire process quite interesting. There wasn’t the testimony involved in the first Combating Autism Act. While there was certainly a push to get the reauthorization passed, there was a lack support from many organizations, from parent-led groups pushing vaccine causation to self-advocate groups. There doesn’t appear to be much, if any, discussion on vaccines. The CAA in 2006 even had some senators mention vaccines in the congressional record while discussing the passing of the act.

And this is something that intrigues me. I’ve always worried that the CAA was passed, at least in part, based on the perception that perhaps vaccines had a role in autism prevalence. Perhaps some legislative guilt at play. I worried that in 2011, with so much more known about the fact that MMR and thimerosal did not cause an autism epidemic, that congress might let autism research drop to a lower priority. The CAA had to stand on what was accomplished and what the prospects looked like for future research. In many ways, that’s a tough sell. Research doesn’t happen overnight. Even in 5 years. But, congress and the president are supporting the effort into the future. In these economic times, and in an election year, this was not a trivial accomplishment.

The Interagency Autism Coordinating Committee (IACC) will continue into the future. Congress is authorized to appropriate funds into the future.

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