When a person has a chronic illness, a disabling illness or condition, life becomes very difficult. Energy is limited. For a person who has Chronic Fatigue Syndrome (CFS), lack of energy is the problem. It's very difficult to explain to people why you can do this thing but not that thing. If you can do one thing, surely you can do it all? Well, yes. I can do 'anything', but not 'everything.' The Spoon Theory is a graphic illustration of just how that works. Devised by a woman with lupus, it applies to anyone else struggling with a disability. Abled-bodied people don't have any idea how time consuming and difficult it is to cope with a disability.
I make choices: I'm a terrible housekeeper because I'd rather do things like working as a sailor on a tall ship and read books. I wear the same clothes day after day because it minimizes the amount of laundry and simplifies the complex process of figuring out what to wear today. All my work pants are tan, and all my work shirts are blue or black. It's impossible not to be presentable if the options are eliminated. It's like wearing a uniform; you don't have to think anymore. Of course, self-expression, variety, and fun disappear, but that's a small price to pay for being able to get dressed decently and not have a crisis when I'm supposed to be getting ready for work. There are things more important to me than deciding what shirt to wear.
You can read about The Spoon Theory at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
I have also been listening to the CSFAC meeting on the Internet. Day One presents the science we already know, but having it all together in one place in digestible pieces is very handy. It certainly made an impact on some of the attendees -- the representatives from the CDC seems to finally be tuning in to what's been said for years. The committee also addressed the question of recommending the name be changed to ME/CFS, for myalgic encelphalitis/chronic fatigue syndrome in order to underscore the seriousness of the illness. As it was remarked, people don't take it seriously if you sound like you could have a problem that could be cured by taking a nap.
Also useful was the information on Day Two about how to document disability for a disability claims to the Social Security Administration and private disability insurance. Especially helpful were the exercise physiologists describing their tests and how they correlate to function and the evidence they use to make recommendations about level of activity. They also discussed how the great majority of work tolerance examinations do not follow any standardized procedures and are not based on evidence directly derived from the patient's actual condition. In other words, they are the opinions (or fantasies) of the examiner.
The videos can be viewed at: http://hhs.granicus.com/viewpublisher.php?view_id=5
Day Three has more procedural and political information about funding, etc, that is of less interest to patients, but probably useful to researchers and clinicians seeking resources.