I can’t tell you how amazing this documentary is. Ja has CFS (Chronic Fatigue Syndrome), my mom has FM (fibromyalgia) and so do I. And if I’m not mistaken those two are related, so I wanted to see this when I found it on Netflix earlier.
There is so much information on there that I found fascinating, and I wish I’d been posting this as I was watching it, to share some of the things I found out. One of the things that is so interesting is that not only does it just affect people randomly, but there are recorded outbreaks of CFS. Many of them. The best recorded was in Florida in the… 1950’s I believe is what they said. And I find it heartbreaking (partially because I can relate so well to having heard this) that the CDC basically said “it’s all in their heads”… but the worst part of it… the CDC never even let the doctor’s know the conclusions they came to, the woman (who is a CFS patient) who made this documentary took the reports to the doctors and patients involved in the outbreaks. I also found it heartbreaking that the women from t he outbreak in Florida expressed how they wished they’d had a name for it, so they could say “see I am sick, it’s not just in my head”, and also in order to be able to grieve for it all. I know how that is, that’s one reason that although, yes the lupus and everything else is difficult to deal with, I’m grateful to have all of the illnesses diagnosed, because I can say “I know what it is, I can grieve, and also I can start getting it all under control.” At the same time, with most of my illnesses, so little is actually known, that it’s one of those “ok, I’ve got a name… is there even anything we can do?” and that’s difficult. My lupus is what I seem to have the best chance with… as it’s been pretty studied over the years… but there are still so many more questions than answers. There are estimates that only 4 – 12% of CFS patients actually fully recover… that number is waaaaaay too low… word needs to get out about CFS, and other illnesses, like the ones I have, so that we have a chance of actually raising the numbers of people who recover from all these illnesses, and hopefully eventually we can actually prevent all of this.
Anyway, all of this to say PLEASE watch that documentary and get an idea of how it affects people, and get information out there for all of the patients with CFS, and other similar illnesses.