Kati
Patient in training
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http://thedoctorweighsin.com/millions-with-autoimmune-disease-need-better-solutions/
I ran across this article on Twitter. Many passages are worthy of mentioning ( but I suggest you to read the whole article) , here is one or 2:
Being statistically invisible for ME is similar, for different reasons. We do not belong to a medical specialty. We do not generally occupy beds in a hospital. The cause of death is rarely due to ME, and death certificate usually do not mention ME. There are no FDA-approved treatments. in fact the Cochrane review says we should get CBT and GET. And lastly, we are the very last disease to be funded at NIH.
I ran across this article on Twitter. Many passages are worthy of mentioning ( but I suggest you to read the whole article) , here is one or 2:
So, why is our healthcare system missing these diseases?
First, autoimmune diseases are statistically invisible. The Center for Disease Control (CDC), the most respected source of public health data, doesn’t aggregate these hundred or so diseases like they do with cancer, but scatter them over many categories and count them with non-autoimmune diseases by body parts (e.g., GI, CNS, skin, joints). So the public health data obscures the size of the epidemic. Furthermore, historically, autoimmune diseases are researched and treated by different specialties that generally do not communicate with each other. For example, psoriasis is treated by dermatologists, MS by neurologists, Crohn’s disease by gastroenterologists and Psoriatic Arthritis and Rheumatoid
During the workshop, we sorted the survey responses (plus the experiences of workshop participants) into the following problem categories.
It was obvious from the survey and workshop that autoimmune patients are more than willing to participate in improving their care.
- Diagnosis Purgatory
- Uncoordinated Care
- Root Causes not understood nor pursued
Being statistically invisible for ME is similar, for different reasons. We do not belong to a medical specialty. We do not generally occupy beds in a hospital. The cause of death is rarely due to ME, and death certificate usually do not mention ME. There are no FDA-approved treatments. in fact the Cochrane review says we should get CBT and GET. And lastly, we are the very last disease to be funded at NIH.
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