Monday, October 03, 2005

NIDS: cutting-edge or quackery?

I was on a panel at a local autism/aspergers conference this past weekend. I'm glad I went, both to represent parents and people on the spectrum, and to keep an eye on what therapists and parents are being sold as autism treatment.

In the first presentation, a nurse representing the NIDS (Neuro-immune Dysfunction Syndrome) camp, used a great deal of "we think" and "hypothesis" type language, a big improvement from when I met her a few months ago and she was talking about how "we KNOW what causes autism".

But I'm still uncomfortable with a lot of what they say: there's a lot of talk about normalizing the immune system, as though they had already established a causal relationship between immune response and autism (they haven't even attempted any studies AFAIK). To say nothing of any efforts at testing whether or not the NIDS Protocol (dietary mods, antivirals and antifungals and antibiotics) actually does anything useful to help kids with autism (it's always kids, you know). The line is basically get the kids' immune responses "normalized" and then they get therapy.

I guess if the therapy works, it's because of the NIDS protocol. And if it doesn't, it must be the wrong therapy.

I just read this entry on quackery in Prometheus' blog and I think it describes Goldberg's approach very well. His approach takes difficult to diagnose disorders (CFS, Autism) and replaces them with made-up diseases (CFIDS, NIDS), and adds a protocol that requires special expertise to design and administer, tests that take special expertise to interpret, and promises nothing at all.

So I'm going to keep my eye on the NIDS crew. So far they seem to be flying largely under the radar of the mainstream autism establishment.

3 Comments:

Blogger Naecl said...

Not quackery... These guys are teamed up with UCLA and Brain Matter's Inc. Look for soon to be published work on a child's restored temporal lobe on spect with the result being language.
Pretty impressive scans!


Here are some publications for you

· Article ?NeuroSPECT Findings In Children With Chronic Fatigue
Syndrome,? Goldberg, M, Mena, I, Darcourt, J Journal of Chronic Fatigue
Syndrome, Vol 3, Num. 1 1997 61-67
· B.L. Miller, Hou, Goldberg, and Mena. Anterior Temporal Lobes: Social Brain, The Human Frontal Lobes, Functions and Disorders. First in the series The Science and Practice of Neuropsychology. Guilford Publications, Inc
· Goldberg MJ. ADHD: Approaching the New Millennium: New Understandings, New technologies and New Therapeutic Interventions. Understanding Diagnosis and Treating the ADHD Child: An integrative approach edited by James A. Incorvia, Bonnie Mark, Donald Tessmer (spring 1999)
· Goldberg, M. Frontal and Temporal Lobe Dysfunction in autism and Other Related Disorders: ADHD and OCD. Alasbimn Journal1(4): July 1999. http://www.alasbimnjournal.cl/revistas/4/goldberg.htm
· Hou C, Miller BL, Cummings JL, Goldberg M, Mychack P, Bottino V, Benson DF Artistic savants. Department of Neurology, Washington University, St. Louis, Missouri, USA. Neuropsychiatry Neuropsychol Behav Neurol 2000 Jan;13(1):29-38

Hope this helps
Naecl

4/04/2006 7:18 PM  
Blogger P&W said...

The publications look a bit dated.

Anything newer to cite?

Thx.

P&W

9/20/2006 3:38 AM  
Blogger Jennie said...

Unfortunately, there is not enough info about this out there...but its not anymore unproven than DAN Protocols with children.

By the way. My daughter with autism is recovering thanks to this protocol. I have been blogging her progress for 3 months now. It works, but it may not work for everybody.

12/21/2008 7:32 PM  

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