Behind the surface

(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning on the occasion of a letter-writing campaign to NIH Director Francis Collins to increase funding for ME/CFS research.) Dear Dr Collins, I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse. Now imagine that flu never goes away. Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room. Now imagine you have that hangover all the time. Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed,...

There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too . And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments section to this post by Cort Johnson. In his post, Johnson details the connection between disorders predominately/exclusively affecting women and the remarkable chance it’s a disorder at the bottom of the NIH research funding barrel -- ME/CFS included. A number of men took offense at Johnson labeling their illness a "woman's disease." Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label i...

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate. However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction. Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS...

Campaign to recognise dangers of mental illness - Independent Online Edition > Health Annotated Stigma also played a part in denying mental patients treatment for physical illness. An Australian study found mental patients with heart disease were less than half as likely to receive surgery for their condition and were 80 per cent more likely to die from it than unaffected patients. "We have missed these links [between mental and physical health]. Without them we fail to capture the full impact of mental illness," Professor Prince said. Um, ya think? Actually, those figures from the Australian study are horrifying for someone with ME/CFIDS, a disease that some still consider to be a psychiatric illness. Like this bastard (who you will note I mentioned with some derision in the post on the Georgia prevalence figures), who heads the primary care clinic for ME/CFIDS in the UK and believes that wheelchairs and handicapped parking permits shouldn't be given to people wi...

It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association ). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick. My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet. An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cra...

So the US and its puppet in Baghdad are celebrating a twisted form of Eid al-Adha today by sacrificing that most flawed and defective animal, Saddam Hussein , to the god of whatever the hell Bush et al. are trying to do in Iraq (securing oil revenues? a Pax Americana Empire?). I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit. So then, why do I feel like crying? A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I. No, it's not sympathy for him that has me here on the brin...