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Onward Through the Fog
By Erica Verrillo
Wednesday, February 26, 2016
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By Erica Verrillo
Wednesday, February 26, 2016
After listening to the IOM public meeting, after reading about what is happening to Karina Hansen and Justina Pelletier, and after poring over comments on blogs, forums, and news articles, there is no doubt in my mind that we are at war.
It is a war being waged against ill children, and against their mothers and fathers, who have been slapped with unverifiable, and outmoded, psychiatric diagnoses in order to strip them of their civil rights.
It is a war against people who suffer from complex, debilitating, expensive illnesses.
It is a war in which our enemies are ignorance, laziness, vested interests, venality, disinterest, and lockstep thinking that places institutional welfare above the needs of individuals.
It is a war against the weak, waged by the strong.
This war has been instigated, and is being perpetuated, by our most powerful health institutions:
- The continued refusal by NIH to fund meaningful research into ME, which essentially hamstrings our ability to initiate trials for treatments,
- The CDC’s 30-year perpetuation of a ridiculous name that allows doctors to dismiss us (as well as anyone else who presents with “fatigue”),
- The DSM’s expansion of “somatoform disorders,” which provides the justification for labeling us as neurotics,
- The possible inclusion of “Bodily Distress Syndrome” in the WHO ICD -11, a move which would effectively reclassify CFS, FM, IBS and other complex illnesses as psychiatric disorders,
In the context of war, these can only be considered onslaughts....
- The creation of panels – the IOM and P2P – which are given the unlimited authority to create and disseminate information across the entire spectrum of health care, but which have no expertise, no experience, and no knowledge of the illness they are charged with defining.
There is no institution, here or abroad, that is unaware of the power of public outcry.
So, let’s fight back on all fronts. Together.
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