Behind the Surface

Why, hello there. It’s been awhile. Such a long while that you’re not even here (yet?). It’s been over a decade, after all. A lot has changed on ye old Internet.  Ah, but not Blogger. It’s still here and almost the same as it was when I started blogging in 2004.  But, like, don’t you know all the cool kids are on Substack now (and the even cooler kids are on Ghost and beehiiv)? Yep. I’m aware. My inbox is a daily gauntlet of newsletter posts. And that’s all from just the free tiers.  But, like, don’t you wanna make money from your writing like they do?  Nope. Not unless I can make mountains of the stuff. And we all know that almost no writer is doing that .  Here’s the deal. I’m sick . Like, really sick . Like, so sick I spend all but 3-4 hours a day in bed. Like, so sick I only leave my home a few times a year when I need health care my primary care provider—who makes housecalls —can’t provide. And I’ve been that way for nearly a quarter of a century (though fo...

No, I'm not returning to blogging. At least not yet. I'm still far too ill (though slightly better than I was when last I posted). But I have been doing a little housekeeping off and on over the last year. Several months ago I put every one of the 500+ posts into draft status until I had time to sort through them all and decide what I might want to keep. More recently I chose to return to published status many of my "greatest hits" so that anyone new stopping by had an idea of what this blog -- and me, to some extent -- have been about. A couple of posts were re-published as if I had only just published them rather than simply returned them to the state in which they had already been, perhaps causing some confusion with RSS feeds.  I do apologize.  Most of all, I hope you have been well, dear reader. I have missed you and hope I may return soon.

(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...