Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I really think all ME societies and patients need to put out AIDS like scare campaigns on this disease. People need to know what it is, that it's very serious, mostly lifelong and it is killing thousands and thousands of us. And it can happen to anyone. I'm sick of the sugar coated campaigns that come out every year, no one gives a stuff because they think it's "just" chronic fatigue.
I don't think I can handle anymore abuse or medical neglect from doctors, after 19yrs of being sick i'm at the end of my tether. Things must change.
Far more, we should fear the government tool media. Unfortunately, that's most of it. The media inanely repeats CDC press releases, etc. without bothering to check the accuracy or how it jives with other research (is CDC actually doing a good job, or does it fail?). Media in general has no sense of history, no sense of economics... just runs with the current story. And blindly trusts certain institutions, especially the health authorities.
I don't understand why we think pharmaceutical companies are potential bad guys here (unless you think some of them are complicit in some conspiracy scheme). If WPI is right, they get to trade no treatment, minimal treatment, perhaps old-hat boring generic depression meds and NSAIDS for us... for more expensive ARV's for us. Injection twice a week? Even if it's more of a myasthenia gravis/multiple sclerosis model, that would be multiple expensive medications.
Pharmaceutical companies have every reason to go along with the biomedical model in general and the retroviral model in particular.