The WPI, autism and neuro-immune diseases

[indigojo_uk]

Click to view

The WPI are an institute set up at the University of Nevada, Reno, to research into "neuro-immune diseases". The best-known of these is ME, but they also include fibromyalgia, atypical MS, Gulf War Syndrome and ... autism. Yes, autism, which most of those affected who can speak for themselves would say was not a disease.

The WPI put out a video last week, a fund-raising appeal video in which Dr Donnica Moore of said institute said that these conditions could have "debilitating, lifelong consequences for those who suffer from them and those who love them". Autism does not affect people in the same way as any of the other conditions mentioned; it is not inherently a physical illness manifesting in pain, extreme fatigue and sickness and so on. It is a cognitive developmental disorder.

What are the WPI hoping to achieve by this? The ME community in particular puts a great deal of faith in them, as their illness suffers from a serious dearth of high-quality research, which has not been the case with autism. They also risk taking sides in the dispute between autistic self-advocates and major charities, which emphasise the "need for a cure" by portraying autism as a fate worse than death (or severe ME).

Perhaps the purpose is to have a side-line in a well-acknowledged condition so as to avoid being seen as "purely" an ME/fibro research centre, but their background is known to be in ME; they are located in a region known for its association with ME (the Lake Tahoe outbreak in the mid-1980s) and where the illness is taken more seriously than in much of the rest of the world, and was founded by people with a professional or family background in ME, and people with autism are in more need of educational and vocational support, while those who are sick with ME need biomedical research so that effective treatments, or a cure, can be found sooner rather than later.

--

This entry was originally posted at http://indigojo.dreamwidth.org/7503.html and you can also comment there, using your LJ username to log in with OpenID.