Discussion in another thread about got me thinking about the financial burden of having an incapacitating chronic illness. The cost affects the government, the patient's family and supporter, and the patients themselves. Using myself as an example, I'm an American who became disabled in my early 20s while I was in school and I'm 35 now. I worked nights, weekends and summers while I was a student so I qualified for SSDI but I hadn't accumulated savings or ever had disability insurance. I got deferments on a few small federally insured student loans which the government paid off. Though I don't qualify for Medicaid now, I've been on that, and used housing subsidies in the past. Currently I'm in a Medicare Savings Program which pays for the Medicare Premium and prescription drug coverage, an Advantage Plan (another subsidy). Every time I go to the doctor, the government pays. I pay no taxes except sales taxes, and my income on SSDI is below the federal poverty guideline. Right now I live with my parents because of a relapse. My boyfriend and I are planning to get married in a few years if my health permits, but, because of my lack of meaningful income, he's living with his parents to save money to offset our future mortgage. Assuming I would have had a successful career, the government has missed out on over a decade of my federal and state income taxes, FICA, Medicare, etc. I would have probably owned property at some point so there are property taxes I'm not paying. I don't own any securities so I don't pay those nice capital gains or dividend taxes. Hell I don't even have a 401(k) or much in the way of savings. And, since I have a Target budget, I pay Target sales taxes, not Neiman Marcus sales taxes. The bulk of my income goes to non-taxable items: food. Ultimately,the fourteen year duration of my illness, between the actual and opportunity costs, my case of CFS has cost the government hundreds of thousands of dollars. I've missed out on well over a million dollars in wages and (ahem) investments. Even the CDC acknowledges that CFS has a huge cost to the economy. The argument has been made that if XMRV--->CFS, then antiviral treatments would impose a huge cost. But, we were productive and working again, at least some of that would be shifted to private insurance OR offset by your tax return (if you live in the UK). Remember that the NIH spends only $3 million/year on CFS which probably directly costs the government hundreds of millions of dollars, and the economy billions, a year. It's absurd! How much has CFS cost you or your family? How do you get by?