New website that dissects autism/vaccine studies - Page 2

[Deborah]

Unfortunately, he is so abusive that I was unable to make it through.

[carriebft]

I think many of the criticisms written there are very valid. A lot of it has been hashed out before. I think the stuff on the GR phone survey one is particularly telling...people like to throw that one out there and the numbers are horrible and the data conclusions are actually contrary to what they claim. It's all very strange!

[gr8blessings]

Originally Posted by Deborah

Some people substitute abuse for discussion and then wonder why people fail to find their arguments convincing.

Gr8blessings, couldn't you find something with a bit more depth? That doesn't seem to be convincing anyone.

I wasn't trying to convince anyone. You asked for a discussion. This is the only discussion that I have found so I thought I share. You can do with it what you like. If you feel that it is without merit, then it is without merit. File it appropriately. If there are more in-depth discussions, I'd like to see them too.

gr8blessings

[yd66]

Originally Posted by carriebft

I think many of the criticisms written there are very valid. A lot of it has been hashed out before. I think the stuff on the GR phone survey one is particularly telling...people like to throw that one out there and the numbers are horrible and the data conclusions are actually contrary to what they claim. It's all very strange!

agreed..i am on a no vax stance myself but it does seem the article, while being extremely biased to begin with, is also correct. its surprising that, for a group of people who on the whole are so suspicious and critical of pro vaccine folks, i see much praising of this 14 studies website? i know that sounds harsh and insulting but i dont mean for it to at all, i just cant find better words. we just need to have anti-vax websites held to the same standards and scruitiny of pro vax websites.

again though if there are flaws with those criticisms/arguments id still appreciate someone pointing them out

[Deborah]

I did suggest that we actually discuss one of the articles on this thread. No one took me up on it.

Perhaps I should try a different one. The one I nabbed wasn't very interesting.

Why I like the fourteen site:

It has links to the actual articles so I can read and consider them.

If you dig down a little bit (and you do have to go down a layer or two), it has full-text critiques by various people.

So, for anyone who wants to, you can read the full article, you can read the critique and YOU CAN MAKE UP YOUR OWN MIND.

This, to me, is an enormous gift and deserves a lot of credit. But it does require some work to get the benefit.

What I find striking is that the pro-vaxers talk about these studies a lot. They hardly ever offer the actual citations. And the actual studies were hard to get hold of...until now.

So that is why I'm pleased that GR put together this web-site. If the studies are good, people will read them, realize that they really do shoot down the vaccine/autism hypothesis, and back off. If the studies are bad, people will read them, realize that they are not good science and continue to exercise due caution around vaccines for infants.

Once again, making the studies available was a good thing. Read them people! Perhaps one a week?

[an_domhan]

Originally Posted by Deborah

What I find striking is that the pro-vaxers talk about these studies a lot. They hardly ever offer the actual citations. And the actual studies were hard to get hold of...until now

Good point.

[Deborah]

So, is it a good thing that GR put the studies up on the web and made them available for discussion

or a bad thing?

Please explain your answer, thanks!

[nwmamas]

I'll participate in the "book club" article critique. I need someone to nudge me along to read these.

I don't know why it would be problematic to put the full text of the studies up for people to read, especially in a forum where people are interested in the subject. I am constantly having to scrounge college students' and faculty members' passwords to access full text articles that I want. Of course, the database organizers have to cash in on university subscriptions, so I don't see a wonderful depository of articles, and some of us with young children find a trip to the nearest university library a laughable luxury. Not to mention the parking fees. And the fact that most of us don't have a nearby research one library. Or science/medical library.

If us ignorant(irony) non-vaxers are going to draw terrible conclusions from Jenny McCarthy, we might as well draw them from the "good" sources, no?

[Deborah]

Okay, why don't we just run through the articles in order. But there are two categories: MMR and Thimerosal. Which category first?

[rlneub]

Our clinic sees the most damage from MMR so I vote for that. The Hg damage is more muddy as it never seems to be one vax but after a series of vaxes that the regression occurs.

[carriebft]

I Just feel like I've gone through all of these before...more than once...in this fashion (not here all the time, although we have done a few of these in some nice long 16 page threads ) So you can take that as the reason I didn't jump on the study pick apart earlier. Still a good idea though.

[Deborah]

Okay, we'll start with the MMR studies. Anybody want to pick one, post the link here and we can start. If no one else does it, I'll pick one tonight. Work calls!

[Deborah]

Okay. I went to the MMR section of the 14 studies site and this is the first one listed: http://www.fourteenstudies.org/pdf/MMR_1.pdf

There are actually 19 studies on the site, so we'll be at this for 5 months if we do one a week. By the end we should know a lot about reading and analyzing journal articles.

Here is the page with the complete list, scroll down to see the MMR group. http://www.fourteenstudies.org/studies.html

As you read the article, here are some questions to ask yourself:
1) What are the authors trying to figure out?
2) Why are they looking at this question?
3) What means do they use?
4) Would you approach the problem in the same way? Or?

Everyone who is working on this, please feel free to add more discussion questions. I'd like to recommend dropping from your mind any commentary, pro or con, that you have already encountered about a particular study. Just read it as if you had never heard of it before and try to take an objective look.

Should be interesting. We'll take one week, so read ASAP and then jump in with your thoughts.

[luminesce]

This is probably a bit off topic but -- Is it not widely accepted that every vaccination runs the risk of causing neurological disorder in at least a 'susceptible few?' The (literally) first words out of my neurologist's mouth when they found a demyelinating lesion on my cervical cord was, 'Have you been vaccinated recently?' No one is exactly sure what component of vaccines trigger neurological disorders or what makes one person susceptible and another one not. Is it the adjuvant? Something else? The science behind the why and how adjuvants work is only now beginning to be understood. Some of the initial revelations about how adjuvants work are rather interesting and raise a lot of questions about short and long-term immune system effects. So, should we be asking if the increase in the number of vaccinations alone (not just mercury) might be causing a rise in neuro-developmental disorders? Could repeated vaccination cause problems in susceptible individuals? Obviously, we should not use mercury if we can help it; and we can, but I have always thought that focusing on mercury is distracting. The focus should be on gathering more scientific data for analysis. One of the easiest ways to do this would be to fix VAERS. Read what the IOM said about it 14 years ago:

http://books.nap.edu/openbook.php?re...=2138&page=274

All VAERS is now is a red-flag warning system. It alerts health officials to something immediate and big; fires that have to be put out (e.g. intussusception with Rotavirus) but it is not meant to be what it should be - a complete and thorough tracking system of adverse events. Why is it not?

Some quotes from the link above:

The ease and accessibility of the reporting system might be useful in allowing VAERS to cast a large net, bringing attention to any possible adverse event. The negative aspect of this open system is that data may be inaccurate, poorly documented, or incomplete and that records may be duplicated. Although VAERS may be useful as a monitor for detecting adverse events, it is less useful for scientific analysis and assessments of causality (Chen et al., submitted for publication).

There are other problematic aspects of VAERS, most notably, the problem of underreporting. The accessibility of VAERS should encourage reporting, but underreporting of events may still occur. The possible incompleteness of the data hampers any attempt to analyze the data. VAERS is a passive reporting system that could serve as a sentinel for as yet unsuspected adverse events that occur following immunization. If linked to other detailed and accurate information, such a surveillance system could be a database for scientific analysis.

When I read the publication above, I noticed that most of the time:

The evidence is inadequate to accept or reject a causal relation between...[fill in the blank]

How has this changed today? What progress have we made in evaluating these issues scientifically? I don't consider myself an anti-vaccinationist. In fact, I would like nothing more than to safely see all children protected from disease. But, frankly, I don't think adverse events following vaccination are being monitored properly or studied seriously enough. When concerned parents raise a flag (like the mercury-autism connection) people come out of the woodwork and do studies to try to allay fears? Shouldn't the studies have been done before, especially given that the combined dosage exceeded EPA levels? Shouldn't there have been data available to evaluate the issues scientifically?

The issue is trust. If vaccines are used on children even though safety studies have only included small cohorts and there are NO good adverse event systems in place to gather data for future scientific analysis, where is the foundation for trust, especially when it comes to questions about long-term adverse effects?

The link containing criticism of the 14 studies talks about GR's propaganda, but both sides are guilty of that. Propaganda is partially used because the evidence is inadequate and the proper efforts are not being made to gather it. The pro/anti-vaccination battles are fought in social forums, the media, with conventional wisdom, with philosophical arguments, guesswork, instincts... which may all have somewhat of a place in public and personal healthcare decisions - but shouldn't the science be there as a foundation? I think our knowledge of the immune system, how vaccinations work and the possible short and long-term adverse events are not understood well enough - certainly not enough for either side to be proclaiming definitive conclusions.

[nwmamas]

Look how studious I am.

Here's my contribution this week. I'll follow Deborah's first three basics, so we shouldn't need to rehash them, but the "what would I do differently" section is a merely a mass of potential problems I wish were addressed by you all, or by the study.

1. There are 3 Questions at hand here:
Do autism/GI kids (25 = 88% regressive autism) have more measles virus rna in their GI tracts than GI neurotypical (13) kids (“the control group”)?
Does MMR timing relate to onset of autism?
Does MMR timing relate to onset of GI issue?

(Answer = No on all counts)

2. Why ask them? Because no one interested in the MMR/MV connection has addressed ASD kids WITH GI issues, they've simply studied ASD kids.

3. The methodology: Case/Control study: not random, retrospective, and not double–blind (ie can’t technically establish a causal relationship). Same critique as the Gen Rescue study.

Finally, my contribution. I'm a social scientist, so I'll leave the final page of the study to science heads who may care how samples were handled. But most of my problems with the study do comes from that perspective as one who is not schooled in measly (snicker) 7-page studies. Oh my. I need MORE. Much, much more. My questions/problems:

1.TESTING: I have no idea if the method for testing for Measles virus RNA is accurate, conducted by the same people, or if medical training alters the results. That it was reviewed by different labs seems to address only part of my concern about MV samples.
2.SAMPLE: Is this a wildly teeny sample size or is this seriously a-ok in the medical sciences? And this is all at the same hospital in the same city or a bunch under the same corporation? What about race, ethnicity, class, religion, etc., rather than just a discussion of "sex"? And 2 sibling pairs aren’t going to alter results? I'm not sure why not when ASDs may have a genetic component and measles is easy to spread in families (3).
3.MMR VACCINE QUESTIONS: All study members had received “at least” 1 MMR. Were they sick at the time? Any other "coincidences" which might be important in such a small sample, like they all got MMR during cold season, or ate vegetarian, or...?
4.AGE OF PARTICIPANTS: Is 5.3 years young to find measles virus in the guts of ASD kids? What did Wakefield find? Does the level or presence change over time? And isn't there a diagnostic issue about kids so young, like that we're excluding a good population of ASD kids?
5.DIAGNOSIS: Diagnosis of autism is always problematic, esp. in 2008 post-asperger's being added. Oy. No discussion about this other than a DSM lovefest? My gawd. Nothing left to say about this one. It angers me. I'm angry!
6.TIMING OF MMR RESEARCH QUESTIONS There's no discussion of how they determined GI problems or autism relative to MMR timing. Doctor’s records? Parent reporting 4 years after the fact? There's some math mumbo jumbo but no real way to get these numbers reliably.
7.THEY DON'T JUSTIFY THEIR STUDY: There's no discussion of how this study’s findings differ so much from previous ones mentioned. What makes this study better than the other?
8.Ditto with time of onset. Why does this study put the issue to rest when others find the opposite? (5)
9.7 year olds are able to provide consent????? Not in the social sciences, so why on earth regarding medical testing? Ew. This is a good way to skew their sample even more so than relying on parent consent, which is already going to create a problematic sample for this study, esp. when working with the sample size they've got.
10. Subjects all recruited at a gastro clinic. What kinds of ASD GI kids go there? Maybe only specific kinds of ASD GI kids would present there, or have docs who work there. Perhaps the majority go to some regular hospital, or maybe parents of ASD kids may feel more comfortable at a hospital that has more experience with ASD rather than just GI issues. Another sample issue.
11.Did they just say they rediagnosed kids for autism? Again, I have huge problems with diagnosing autism in general. It's a major controversy in a billion fields. So to not address it as problematic is a gaping hole in the transparency of their research. They need to justify this. Other than merely finding one single person to re-test sick kindergartners in a hospital setting before their colonoscopy. I'm sure those results were fabulous.
12.OTHER SUSPICIONS: There is a “well-established” method for measuring regression? (6) I disagree on principle. This should have mentioned parents' reports, OTs if applicable, etc.
13. It’s just plain creepy to not use Wakefield’s first name in his first mention in the body of the work. I’m bothered and hence I distrust their results. It's the Chicago Style Manual under my pillow talking.
14. Finally, the study authors speculate that GI ASD is a “different” kind of autism that bears further study. Given their use of the DSM to rediagnose these kids, are they covertly suggesting that ASDs should be removed from the DSM and considered a physical/biological disorder rather than a neurological one? At least the regressing kids with GI issues?

My conclusions: Not much to this that I didn't get from the abstract.

[Deborah]

Very good discussion! Thank you.

Does anyone want to respond? Do you have a different take on the study? Tell us!

[Deborah]

I'm really hoping for some more comments on this. It is a short study and not too difficult to decipher as long as you don't get bogged down in the technicalities of how they tested for the measles virus. Plus I know there are some folks here who love reading journal articles.

[MissRubyandKen]

I'd like in on this. Going to try to read the first study today when baby naps. Wish me luck!

[MissRubyandKen]

I'd like to make a suggestion too. Possibly starting a new thread with a title that reads as showing you're doing a study along on these 14 studies will generate more interest and participation. I clicked on this thread shortly after it was posted, bookmarked the link for reading in depth later, read the few thumbs up type comments and that was that. Until I noticed today the thread was still alive and got curious. Then I read all the way through it and realized there was an invite to dissect and read along on the studies. Just an idea.

[Deborah]

MissRubyandKen, I think that is a great idea! How would you like to be the one to start the thread? I'm sort of drowning in work right now. I'll do it if I have to, but...

Put in a link to the article, a link to this thread, and ask people to repost their introductory material and comments (I'll do mine if you start the thread).

Thanks in advance!
Deb