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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample. These findings indicate that whether or not individuals are recruited from a community or tertiary sample, ME/CFS imposes substantial economic costs.
I don't think there is a "they". As you say, it does not make you better. I've never tried drugs for CFS but i don't think it makes sense if you feel good but are getting worse and worse, because you do more than is good for you. At some point you will have to face reality or crash.I wonder if they are trying to change the mood of patients. (And because I know journalists are reading these threads - we don't all have mood problems, and they have tried it before, it doesn't affect the underlying disease)
I agree and i think that's the point we have to make. Back that up with numbers of as good as possible quality and communicate it to people so that everybody knows about it. And in a clear and simple enough way.The lack of funding, despite the relatively large numbers of sufferers and the massive drain on society, is not only disgusting but also irrational. There needs to be a huge increase in funding for all areas of ME/CFS research.