I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates 27,000 parents’ reports on the effects of pharmaceutical and alternative interventions on autistic children. It’s not a clinical trial or a substitute for doctors’ advice. It uses subjective, self-reported measures (which we all know are problematic). It’s also a static snapshot. But for a long time I’ve been experimenting with treatments with much the same philosophy: which treatments are likely to be most effective with the lowest risk of harm?
I would love to try to assemble a similar report for the ME and CFS community. In order to create a survey that represents the most common treatments we have all tried, the first step is to gather a list of as many treatments as possible.
Click below to enter a list of the treatments you have tried. Thank you so much for your participation!
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the