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More like you than not

25 Jan

Newsweek has a piece, Autism Finds Its Voice, which discusses a documentary about autistic adults, Tracy Thresher and Larry Bissonnette, and their travels and advocacy (which are combined for this film).

In the documentary Wretches & Jabberers, Tracy Thresher and his friend Larry Bissonnette, who is also autistic, travel from Vermont to Sri Lanka, Japan, and Finland to meet with other autistic adults. Both men grew up not speaking: Larry spent his childhood in institutions, while Tracy attended special-education classes where he passed his days doing puzzles. As adults they learned to type and acquired some verbal abilities. Today they are advocates for their condition, speaking (with the aid of their keyboards and assistants) at conferences about the myths and realities of autism. The goal of the tour, Tracy types in the film, is to “make a difference in the lives of people who can’t talk but are intelligent.”

http://c.brightcove.com/services/viewer/federated_f8/271557391

A short, related piece in Newsweek, And if Autism Were a Song, It Might Sound Like This, discusses the music used in the movie.

The music for Wretches & Jabberers was written by composer and musician J. Ralph, who scored the Academy Award–winning documentaries The Cove and Man on Wire. After watching the film, Ralph asked his musician friends to collaborate on the soundtrack. The catch was they couldn’t hear the songs first. Ralph wanted to capture the musicians discovering the music in the same way the subjects of the film discover language as they learn to type and communicate. Several of the songs borrow the phrases of the film’s subjects for their lyrics.

This piece ends with the positive note:

“I have friends that are on the spectrum, but for me this film is about basic human rights.” Including the right to be heard, even when the process is killingly hard.

I hope the film lives up to the message.

The tour so far for the movie is listed here, with more video clips here (which I’ll probably embed soon in a new post, but go look anyway).

California regional center on probation

25 Jan

The California Department of Developmental Services (CDDS) has a simple charger: “The California Department of Developmental Services is the agency through which the State of California provides services and supports to individuals with developmental disabilities.” The CDDS works under the framework of the Lanterman Act. Key to the Lanterman Act is the concept that the state would empower local, private agencies to both manage and provide these services. From the management side, this lead to the Regional Center system. Regional Centers are local nonprofits which contract with service providers to serve the clients (developmentally disabled) in their area.

One of these regional centers is IRC–Inland Regional Center, which serves Riverside and San Bernadino counties (inland from Los Angeles).

The Sacramento Bee (the main newspaper for the State’s capital) ran this story earlier this month: California housing for developmentally disabled has high cost.

Now, I got to admit, I read that title and though, “uh-oh. Here comes another of those stories criticizing services for the disabled. But, here are the first few paragraphs of that story:

In 2006, a state-funded center serving developmentally disabled people spent $2.9 million to develop four houses for its clients in Riverside County.

Just months after the houses were completed, the county assessor’s office estimated the properties were worth $1.1 million less than the Inland Regional Center had paid to build them.

Four years later, they’re worth 31 percent of their cost.

The $2 million loss, as documented by tax records and assessor data, wasn’t just the result of a bad real estate bet made with public money by the regional center, which is part of the state’s system of 21 nonprofits charged with arranging care for developmentally disabled people.

I don’t know what is worse, the idea that services for the developmentally disabled cost too much on their own, or that some sort of mismanagement is costing taxpayers extra in their support of the developmentally disabled.

The Sacramento Bee has followed up recently with the story: Southern California center serving disabled put on probation

The state Department of Developmental Services has placed on probation the largest of 21 publicly funded regional centers serving developmentally disabled people, saying it illegally used state money to develop housing, violated the center’s contract with the state and circumvented a statutory freeze placed on rates paid to care providers.

The department sent a letter dated Jan. 19 about its actions to the center’s board in Southern California.

Ouch. Ouch on so many levels. Yes, as a taxpayer, I hate the idea of my money being wasted. On the other hand, this goes to the fact that organizations like the regional centers hold much more than the obvious (supplying support). They hold a large part of the reputation of the community. In times like these, with the economic stresses we are under, we can’t afford stories like those above.

Apply Now for IMFAR Stakeholder Travel Awards

25 Jan

(January 24, 2011-New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it is offering a limited number of grants to parents of children with autism and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in San Diego, May 12-14, 2011. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to offer this program again this year and to give back to the autism community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation. “Last year’s award recipients took what they learned at IMFAR and brought it back to their communities in very creative, effective ways.”

To apply, send a letter to grantsATautismsciencefoundation.org describing why you want to attend IMFAR and explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Grant. Letters must be received by February 28, 2011. Recipients will be announced in late March. Additional application information is available at www.autismsciencefoundation.org/ApplyForaGrant.html

Arc of California Action Alert: people needed to show support in Sacramento

25 Jan

This is a California local issue. At the same time, it is not. Budgets are tight all over in these tough economic times. My guess is that organizations quite near you are looking for people to help support actions to preserve funding for services for the developmentally disabled. The Arc has chapters all over the country. The U.K. has the National Autistic Society and other excellent organizations. Now is a time when they could use your help.

Greg deGiere of the Arc of California sent out the action alert today. The economic situation in California is poor, and Governor Brown has suggested large cuts in addition to those the Department of Developmental Services has already absorbed under Governor Schwarzenegger.

Now is a time when we should show support for developmental services in California. The Arc is calling for people to come to Sacramento on February 3 and February 10 for public hearings on the developmental services budget.

Dear Friends,

Our community is facing its most serious threat in many years.

Governor Brown’s proposed budget cuts would gut the Lanterman Act’s promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.

If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

I’ll tell you more about the threat, but first, here’s what I’m asking you to do:

· Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.

· Call your local state senator and assemblymember this week and give them the same message.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars — real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. The state could eliminate all the regional centers’ operating budgets and still not cut that much.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear.

Here is the best information I have as of today on the committees’ public hearings:

· Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento.
· Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.

And here’s how to call your local state senator and assemblymember, if you don’t know who they or how to call them:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

When you call, get the name of the person you’re talking to. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.

And I hope to see you in Sacramento next week and the week after.
Thank you for your advocacy.

Greg

P.S. Please forward this Action Alert to everyone you know. We need a very strong show of support this time.

Are you a petitioner in the Omnibus Autism Proceeding?

24 Jan

Families who have filed claims as part of the Omnibus Autism Proceeding, OAP, should read the latest update from the Court.

Many families who filed can’t be found, by the court or by their attorneys. They need to contact the court if they wish to keep their cases going. Otherwise they risk the cases being dismissed.

I find this an interesting point. People have moved on, literally. They filed and they haven’t kept in contact to continue their cases.

Also, the Petitioner’s Steering Committee (the group of attorneys working together on the Omnibus) has dissolved.

The Omnibus is over. Petitioners can either exit the vaccine program, go ahead with the theories the petitioners steering committee proposed and tried (and lost), or come up with new theories.

Proposed California budget includes big cut for developmental services

24 Jan

In Governor Brown Proposes Massive Cuts to Social Safety Net, Marty Omoto of the California Disability Community Action Network writes:

$750 Million Reduction For Developmental Services

The Governor’s proposal for a $750 million reduction in state general fund spending for developmental services includes the 21 non-profit regional centers.

The bulk of that cut will most likely come from the 21 non-profit regional centers who coordinate community-based services and supports to over 240,000 children and adults with developmental disabilities. The regional centers contracted under the Department of Developmental Services (DDS) also coordinate the state’s early intervention program – called Early Start – that serves over 25,000 infants.

The proposed $750 million reduction does not include any lost federal matching funds which would like push the total reduction in spending in developmental services to close to $1 billion (all funds). This reduction is on top of 2009’s permanent and on-going $500 million reduction (including federal funds lost) in developmental services (the bulk of it impacting regional center funded services).

The $750 million reduction in State general fund spending proposed by the Governor would include the continuation for at least another year of the existing 4.25% reduction in payments to most regional center providers and to regional center operations which was scheduled to end as of June 30, 2011. That reduction would, under the Governor’s proposal, continue at least through June 30, 2012 – though the savings or reduction amount actually is permanent.

The reduction also would be achieved through several unspecified measures, including imposing new accountability and transparency measures; and implementation of a statewide purchase of services standards – first attempted in 2002 by Governor Gray Davis.

Many readers here will know of the Regional Centers as the source of data used by many to track autism “rates” over time. The Regional Centers (RC) are California’s method of administering support services to developmentally disabled residents. Each RC covers a large territory and is responsible for purchasing services from private vendors. This method would be in place of a system where the state employs the administrators and the service providers directly.

That said, the recent budget proposal includes $750,000,000 in cuts for services for the developmentally disabled. This will incur an estimated $250M in lost matching funds and is in addition to previous cuts already enacted.

Take the numbers and do the math, using just the $750M amount as a start. Use 265,000 people served by the CDDS. That’s about $2,800 per person. These are not small cuts.

And there is no end in site to the economic woes of the State.

Large Network of Private Schools Pays $215,000 to Settle Lawsuit Alleging Discrimination Against Children with Disabilities

22 Jan

Below is a press release from the U.S. Department of Justice. A company that runs a large group of schools (preschool/elementary and secondary) settled a case alleging discrimination of disabled students. Even private schools can not exclude children based on disability, “making reasonable modifications of policies to permit children with disabilities to participate fully in the programs they offer”.

WASHINGTON – The Justice Department today announced the settlement of a lawsuit filed to enforce the Americans with Disabilities Act (ADA) against Nobel Learning Communities, Inc. (NLC), a private, for-profit entity that operates a nationwide network of more than 180 preschools, elementary schools and secondary schools. These entities operate in the District of Columbia and in 15 states (Arizona, California, Florida, Illinois, Maryland, Nevada, New Jersey, North Carolina, Ohio, Oregon, Pennsylvania, South Carolina, Texas, Virginia and Washington) under a variety of names, including Chesterbrook Academy, Merryhill School and Evergreen Academy, among others.

In its lawsuit, filed in April 2009 in the Eastern District of Pennsylvania, the Justice Department alleged that NLC violated Title III of the ADA by excluding from its programs children with disabilities, including some children with autism spectrum disorder, Down Syndrome, Attention Deficit Hyperactivity Disorder, and global developmental delays. NLC denies the allegations.

“It is illegal under the ADA to discriminate against children with disabilities. Just like public schools, private schools must make reasonable modifications of policies to permit children with disabilities to participate fully in the programs they offer,” said Assistant Attorney General Thomas E. Perez. “This agreement ensures that children will not be denied quality preschool and other educational opportunities based upon their disabilities.”

U.S. Attorney for the Eastern District of Pennsylvania, Zane David Memeger, noted, “no child should be discriminated against on the basis of disability. All children should have an equal opportunity to attend any school for which they qualify, and schools must make reasonable modifications to policies, practices or procedures in accordance with the law.”

Key provisions of the Settlement Agreement include the following:

· Disability Non-Discrimination Policy: NLC has adopted and will implement a formal policy to ensure that it will operate its programs, facilities, and services in a non-discriminatory manner to comply with Title III of the ADA.

· Publicity: NLC will publicize the Disability Non-Discrimination Policy to its principals, teachers, and other staff at all facilities in the NLC network. The policy will be posted on NLC’s website and member schools’ websites. Paper copies of the policy will be available to any person upon request.

· Monetary Relief: Upon receipt of appropriate releases, NLC has agreed to pay $215,000.00 collectively to the children referred to in the United States’ First Amended Complaint.

· Commitment to Avoid Unnecessary Inquiries: In accordance with the requirements of the ADA, NLC will not make unnecessary inquiries into the existence of a disability or impose or apply eligibility criteria that screen out or tend to screen out students with disabilities from the full and equal enjoyment of NLC’s goods, services, facilities, privileges, advantages, or accommodations.

· Reasonable Modification Requests: NLC will, among other things, engage in a process to consider requests from a student’s parent(s)/guardian(s) for reasonable modifications of NLC’s programs and services when such modifications are necessary to afford NLC’s programs and services to students with disabilities, unless NLC can demonstrate that making such modifications would fundamentally alter the nature of the goods, services, facilities, privileges, advantages, or accommodations at issue.

· Appointment of an ADA Compliance Officer: NLC will designate a person who is knowledgeable about the ADA and its implementing regulations, and who will communicate with parents/guardians on decisions regarding requests for reasonable modifications. In addition, (s)he will review (for compliance with the Disability Non-Discrimination Policy) all decisions not to enroll a student with a disability, or to disenroll a student with a disability.

· Training: At specified periods during the term of the settlement agreement, NLC will train its regional executives, principals and assistant principals on the content of the Disability Non-Discrimination Policy and the terms and conditions of the settlement agreement. NLC will also require all of its teachers and assistant teachers to read the policy and report requests for reasonable modifications to appropriate NLC personnel.

· Reporting and Tracking: NLC will track and report to the United States, at one year and at 18 months from the effective date of the settlement agreement, information including the number of applicants with disabilities and their ultimate enrollment status, as well as the number of requests received on behalf of applicants and current students for reasonable modifications (and whether the modifications were provided).

Those interested in learning more about federal disability rights statutes can call the Justice Department’s toll-free ADA information line at 800-514-0301, 800-514-0383 (TTY) or access the ADA website at http://www.ada.gov .

NIMH Teams Up to Study ASD Rates in Somali-American Children

21 Jan

There has been a fair amount of discussion in the media and online about the possibility of an autism cluster amongst the Somali-American population in Minneapolis, Minnesota. A report came out last year, Autism Spectrum Disorders Among Preschool Children Participating in the Minneapolis Public Schools Early Childhood Special Education Programs, presenting data on the administrative prevalence of autism in the public schools. They found that, indeed, a higher fraction of Somali-American children were in the autism programs than children of other racial/ethnic backgrounds.

They analyzed the data in a number of ways, but here is one results table:

The administrative prevalence is about 1% in this analysis, which is significantly higher than that for the other subgroups. Many have commented that the Somali-American administrative prevalence is about the same as that for older children in the general population within the Minnesota public school system. This raises the question as to whether the prevalence is actually higher amongst Somali-Americans, or whether it could be that Somali-Americans are identified earlier.

Rather than wait a few years for that question to sort itself out, NIMH, Autism Speaks and the Centers for Disease Control are teaming up to study the situation. They will use the same methodology as used for the CDC’s autism prevalence figures: the Autism and Developmental Disabilities Monitoring (ADDM) Network methods. The ADDM uses a review of medical and educational records, not a direct examination of the children involved. But, this is an established methodology.

Here is the post from the NIMH. (copied in full because, well, it’s the government and therefore public domain):

Members of a Federal Advisory Group on Autism Mobilize in Response to a Mother’s Plea

NIMH, along with three other NIH Institutes, will be supporting a joint effort with the Centers for Disease Control and Prevention (CDC) and Autism Speaks, a private advocacy organization, to investigate reports of elevated prevalence of autism spectrum disorders (ASD) among children born to Somali immigrants living in Minneapolis, Minn.

At the October 2010 meeting of the Interagency Autism Coordinating Committee (IACC), Idil Abdull, a Somali parent and founder of the Somali American Autism Foundation, described the disproportionate numbers of Somali-American children enrolled in preschool ASD special education programs—up to seven times higher than their non-Somali peers, according to a 2009 report by the Minnesota Department of Health. Committee members, which include NIH, CDC, and Autism Speaks, responded immediately by identifying ongoing research that may be expanded to help answer why such a disparity appears to exist, as well as to determine the service needs of children with ASD in Minneapolis and their families.

“This shared effort demonstrates how members of the IACC can respond quickly and cooperatively to an issue brought to the Committee by the public. An increased prevalence of ASD among this specific Somali population would represent both a scientific opportunity and an urgent public health need,” stated Thomas R. Insel, M.D., NIMH Director and chair of the IACC.

With plans to start in early 2011, the three partnering organizations will provide support to the Minnesota Department of Health to collect prevalence data according to the CDC’s established surveillance methods, as used by the Autism and Developmental Disabilities Monitoring (ADDM) Network.

The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning ASD. In addition to NIMH, the NIH Institutes supporting this research initiative are:

* Eunice Kennedy Shriver National Institute of Child Health & Human Development
* National Institute of Environmental Health Sciences
* National Institute on Minority Health and Health Disparities

Harris poll: Slightly More Than Half of Americans Say Vaccines Don’t Cause Autism

20 Jan

I expect this to be taken as a great victory. The vaccine hypothesis is a part of the national psyche, according to a Harris Poll, recently released.

The poll states that:

Just a slim majority of Americans — 52 percent — think vaccines don’t cause autism, a new Harris Interactive/HealthDay poll found.

Conversely, 18 percent are convinced that vaccines, like the measles-mumps-rubella (MMR) vaccine, can cause the disorder, and another 30 percent aren’t sure.

Of the 18%, 2% felt that it was “certainly true” and 16% “probably true”.

Why will this be considered a victory? A while back an article in Pediatrics discussed vaccine fears, and had this quote:

“Our study indicates that a disturbingly high proportion of parents [25%] continue to believe that some vaccines cause autism in otherwise healthy children.”

That report was met with the following statement by the founder of Generation Rescue, JB Handley:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

and he felt those in his “community” were responsible:

Community, prepare to take a bow, America is listening.

The idea that 18% definitely believe in vaccine causation is a big step, demonstrating that the idea has become common.

I will not that this is down from the Pediatrics poll (25%) which caused the “take a bow” blog post. But 18% is a sizable amount of the population, and this may not be a significant difference given different methodologies.

Even people who believe in vaccine causation are still mostly getting vaccinated, which brings up a very interesting question of how strongly they believe in the idea. It is one thing to say, “in some very rare cases, vaccines might cause autism” and “there is an epidemic of autism caused by vaccines”. Those who believe in the vaccine-induced epidemic would be, in my naive view, much less likely to vaccinate.

The poll also found that parents who have lingering doubts about the vaccine were less likely to say that their children were fully vaccinated (86 percent), compared to 98 percent of parents who believe in the safety of vaccines.

About 47% of those polled were aware that the Wakefield Lancet study was retracted and/or that it was declared fraudulent. That is huge. How many people are aware of any research paper that is 12 years old?

But here is a very telling result:

Still, the retraction and allegations of fraud do seem to have influenced public perception. Among those who had been following the news about Wakefield, only 35 percent believed the vaccine-autism theory, compared to 65 percent who had not kept up to date on the latest developments.

Informing the public about the retraction of the Lancet study and about Mr. Wakefield’s ethical lapses is having a big effect on reducing the belief in vaccine-causation.

More detailed information can be found here.

Andrew Wakefield’s “do not re-vaccinate” letter

20 Jan

I keep thinking I’ve left the Wakefield story behind. Believe me, I want to. It isn’t easy being repeatedly reminded of a man who subjected disabled children to invasive tests, many of which were not in the clinical best interests of the children, in order to collect data for a litigation driven study. The letter below keeps sticking in my mind. It was blogged by others years back, but I keep thinking that it is worth putting out in the public’s eye once more.

Why? Two reasons.

First it addresses Mr. Wakefield’s defense that his concerns about the MMR vaccine were based on a 200 plus page report he generated. I’ve never seen this report and would welcome a link if someone could provide it. The letter below is from September 1996. To put this in perspective, the first of the Lancet 12 children was seen at the Royal Free in July of that year. So this goes to the state of mind at the time of the Lancet 12 study.

Second, this letter addresses one of Mr. Wakefield’s current methods of deflecting criticism: by claiming he never told people to not vaccinate. Well, he told a senior health official in the UK to stop a vaccination program. Does that count? He even emphasized it. At the bottom of the letter below, he tells the Chief Medical Officer to abandon the plan to re-vaccinate children before entrance to preschool. “Do not re-vaccinate”

As to his state of mind at the time, it is clear from the letter below that in Mr. Wakefield’s mind, the key issue at hand was his hypothesis that the MMR vaccine caused a persistent measles infection, resulting in bowel disease. Strangely, he wrote this just as his own group had just published a paper showing no evidence for measles virus in blood or tissue samples from patients with IBD. Yet he doesn’t appear to cite his most recent work and, instead, states “Persistent infection following vaccination is, therefore, not only biologically plausible but likely.”

Based on this letter, I’d be willing to bet that a substantial portion of Mr. Wakefield’s 200+ page analysis of measles vaccine safety is an attempt to bolster support for his own ideas of persistent measles infections, comparing single measles vaccines to the combined MMR. It is an idea which failed (e.g. here and here)

The discussion below is from day 26 of the GMC hearing, where the letter was read into evidence (one of a few times). GMC comments are in bold. The letter is in regular text.

Thereafter, I want to take you on to the next correspondence from Dr Wakefield which was in September 1996 and is at page 193. This is a letter from Dr Wakefield directly to Dr Calman, the Chief Medical Officer, and there is a manuscript note at the top indicating that it was handed on to you. I do not propose to read again the whole of it and others may wish to take you to other parts, professor, but may we run through it.

“Dear Dr Calman,

I am writing to you in order to express formally my anxieties over your intention to re-vaccinate all pre-school children prior to school entry. I will not go over the history of our exchanges on this subject; this will emerge at the appropriate time.

I feel sure that your independent expert advisers will have alerted you to the detection of vaccine-strain measles virus in children with autoimmune hepatitis, a disease in which measles has been implicated previously on evidence far, far more tenuous than our own for measles and Crohn’s disease.

Doubtless they have also informed you …”

and he then goes into the characteristics of the measles vaccine that he suggests are relevant.

“Persistent infection following vaccination is, therefore, not only biologically plausible but likely.

You will also have seen our recent paper in the Lancet which provides what many consider to be compelling evidence of a causal association between measles and Crohn’s disease following exposure in utero. No doubt your experts will be able to reassure you on this particular issue.

In the future you may have cause to reflect on the ‘independence’ of your appointed experts. Certainly, Dr Miller from the PHLS and Professor Minor of NIBSC cannot be considered independent. If I and my colleagues are right, then they are wrong. Their scientific and professional standing and credibility is inextricably linked to the success of measles vaccination. You may also wish to consider the value of their advice with respect to the depth of their knowledge about measles virus. I refer specifically to comments made by Dr Miler and yourself in letters to the Lancet following the ’94 revaccination campaign (following which paediatric IBD cases have increased dramatically).

In your letters you quote from a letter to the Lancet provided by Professor Herman-Taylor …”

and we have heard his name of course in relation to his theory about Crohn’s Disease.

“Hermon-Taylor illustrates that the emergence of Crohn’s disease in the 1940-50s in the UK took place before either the disappearance of measles epidemics, or the introduction of measles vaccination. Hermon-Taylor puts this forward as categorical evidence that neither measles nor measles vaccine can possibly be the cause of Crohn’s disease, which you and your experts endorse. This is a superficial and naïve perspective that reflects a profound lack of understanding of either the changing pattern of morbidity and mortality from measles in the UK leading up to the emergence of IBD, or the risk factors for persistent infection and delayed disease that are associated with measles virus infection.”

He then sets out his arguments in relation to the rising incidence of Crohn’s disease in three UK centres plotted against measles notifications in England and Wales with graphs indicating that or purporting to do so and he then says,

“It is my concern that the expert advice that you have received has been deficient, and far from independent. If and when the dam bursts it will be you and your department that is standing in the way. We, for our part, have tried to help, only to have our work denigrated and misrepresented. We went into this with our eyes open and will continue to generate peer-reviewed, published data in the true scientific spirit: there is a vast gulf between this and opinion. You may wish to ask your experts what are the longest prospective safety trials of measles vaccine, MMR, and measles re-vaccination at any time, anywhere in the world. The result may surprise you.

Do not re-vaccinate.”

The emphasis in “Do not re-vaccinate” was his, not mine. He chose to underline (which for some reason doesn’t work for me on this blog).

Again, my guess is that the 200+ page report he created critiquing MMR vaccine safety relied heavily on the now disproven link between IBD and measles infection.

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