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**Approved by Forum Admin** Parents and Carers Needed to Participate in Research Study! Do you have a child aged between 5 and 12 years with a PANS/ PANDAS diagnosis and currently live in either Australia, UK, USA, Canada, Ireland or New Zealand? Researchers at the University of Newcastle, Australia, are researching the impact that PANS/ PANDAS flares has on a child’s participation in daily life activities. If you are interested in finding out more or participating, please click on the following link: https://is.gd/PANS_Study. We encourage you to invite other families you know, who may also be interested in participating in the study, by sharing this flyer or the above link. This research is being coordinated by Michelle Newby, PhD Candidate (michelle.newby@uon.edu.au); Shelly J Lane, PhD, OTR (Shelly.Lane@colostate.edu); Kirsti Haracz, PhD (kirsti.haracz@newcastle.edu.au); and Janice Tona, PhD, OTR (tona@buffalo.edu). This project has been approved by the University of Newcastle, Human Research Ethics Committee, Approval No. H-2019-0284
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This just came across my FB feed today, and I thought it was interesting: http://medicures.org/british-researchers-may-have-just-found-the-cure-for-multiple-sclerosis/ By synthesizing proteins from the sheaths in a lab and then injecting them into the blood stream at increasing doses, the body begins to learn that they are safe and no longer attacks them. This type of therapy has already been used in treating some allergies, a treatment that is called allgergic desensitisation, but its only recently that scientists have thought it had potential to be used elsewhere. In autoimmune diseases the immune systems sees little protein fragments in your own tissue as foreign invaders and starts attacking them. What we have found is that by synthesizing those proteins in a soluble form we can desensitize the immune system by giving an escalating dose. These findings have important implications for the many patients suffering from autoimmune conditions that are currently difficult to treat, he added. Another option for PANDAs treatment in the offing, perhaps?- 8 replies
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My DS actually found this via one of his favorite web sites. Fascinating, and hopefully will bring something additional to the table for those of us who already live in a world in which the relationship between the brain and inflammation is well-accepted rather than "controversial." http://mentalfloss.com/article/65435/scientists-discover-new-part-human-body This find is the neuroimmunological version of stumbling across a unicorn. Not only had the system gone undiscovered until now, but textbooks argued against its very existence. As a result, neuroimmunologists have struggled to understand the mechanisms of brain drainage and inflammation. When all other tissues in the body become inflamed, molecules or pathogens are drained into the local lymph cells, where immune cells get activated to continue the fight. “In the brain, we thought this system didn’t exist. When we first saw those vessels, I completely freaked out," Kipnis tells mental_floss. "This discovery is as exciting as it gets.”
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Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
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I'm noticing a lot more postings of research articles and papers recently. I think this is a good sign that the medical community is starting to 'loosen up'. Here's one about narcolepsy but with lots of references to what we all talk about all the time on these boards... http://protomag.com/articles/betrayal-within
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Really good read! http://thewalrus.ca/a-feverish-debate/