I wish it was all in my head

I wish Simon Wessely was right. I wish this illness really was just psychologically perpetuated. I wish that the more I pushed myself Monday to make cookies and candies for friends and family this Christmas, the more that constant icky, flu-like feeling would have receded into the background and I’d have seen how great it was to enjoy life again instead of making me too sick to make cookies and candies on Tuesday.

I wish Peter White was right and I could let go of my attachment to this bed. Get out of this stifling apartment and roam the streets of downtown like I used to. It’s so pretty this time of year with all the lights and evergreens. I wish that the more I had pushed myself yesterday to get out and do some errands -- go to the store and the post office like a normal person -- the more it would have made me forget I have a debilitating illness instead of leaving me weak, nauseous and listless today.

I wish Trudie Chalder was right. I wish that letting go of my aberrant illness beliefs last winter and taking the baby step of joining a writing class once a week at the church next door would have provided the courage to take even more classes and return to graduate school instead of making me crash so badly that I’m still trying to recover 10 months later.

Every time I have a good day, there’s always that little voice in my head that says maybe they’re right: this illness is just some construct I must break out of. I just need to push myself a bit and eventually I can get the life back that I let slip away with my weak will.

But after 11 years of wishing it was all in my head, of thinking that those silly rules about “energy envelopes” and “aggressive rest therapy” don’t apply to me because they just make me pay too much attention to what are normal somatic sensations. Of using all sorts of tricks to distract myself from that horrible pain and weariness so I can bull my way through using sheer force of will to do what I want. After all the stubborn, wanton disregard for whatever my body tells me (It’s normal to feel tired, right? But everybody else keeps going...), I end every year sicker than I was when I started it. My functional capacity decreases. I spend more time in bed (can that be possible?). I’m on more medication.

It’s just...I just so want them to be right.

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Hang on

A few days ago I was reading the blog of a fellow Portlander with the title "Hanging Blog Syndrome." I immediately recognized the malady. Despite having my shiny new Macbook for almost a month now (thank you again, dear friends who donated it!), you can almost hear the creaking of this poor blog as it hangs forlornly in cyberspace.

My blogging is always rather meager when A. is here -- as is his productivity also. Two people sharing a 400sq foot studio for two and a half months without pause except for my doctors appointments or his trips to the store is not particularly conducive to introspective pursuits.

Neither is chronic illness blogging-friendly. Good days have been rare for a few years now, even if I always think they are close at hand. Instead there are horrible days and less horrible days. Most of the time my brain is cream of wheat and I'm too weak to sit up in bed, drag my fingers across a keyboard and input all the thoughts I've had during the hour upon hour of laying in bed. You have no idea how jealous I am of those of you who can blog every day or even every week. And even more jealous of those of you who get to read blogs regularly or interact incessantly on forums like the Phoenix Rising board (which I've grown fond of).

If I could write via mere thought, my hanging blog syndrome would be a thing of the past. The brevity and immediacy of Twitter has made composing my thoughts less onerous than blogging, though admittedly more banal. I suspect you will continue to find me Twittering more than I blog.

But A. is about to return home to the UK. Bad for cuddles and companionship, yet more promising for blogging, as is the recent return of my writing head. Like so many things, it's "use it or lose it" with writing. Blogging is one way I hang on.

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A jolly good time

And here I thought I'd be blogging like crazy over the last month...

My absence has been mostly Microsoft's fault. On October 14th I downloaded the ginormous security updates from Microsoft and haven't been able to open Windows on my laptop since. My adopted dad spent two days last week working on a system restore to no avail. As you can imagine, I've been cursing Microsoft with the crudest expletives I can think of since.

It had to happen just after the most amazing research development in ME/CFS history. Not only have I been wanting to read obsessively about it and can't, but the local ME/CFS group I hand-moderate went crazy. Instead of spending a combined total of 10 minutes a month moderating in the comfort of my bed, I've been sitting up in the kitchen on the broken down Averatec I'm sharing with A. for a half-hour to an hour a day approving posts and trying to keep everyone in line (with mixed results).

Unfortunately I can only handle sitting up in the kitchen for a maximum of a half-hour to an hour most days. So, you know, there wasn't much energy for anything else like, oh say, reading any of my other email. Twittering and/or blogging, of course, came to a screeching halt.

Moreover A. and I have been passing a cold of some sort back and forth. It's meant a stuffy nose and chest for him and vertigo for me as it affected my inner ear. For the last month we've been in a cycle where I'd start to feel better on Friday. We'd fool around on Saturday. I'd crash on Monday and be so sick for the rest of the week that I didn't really care that I was jonesing for Twitter and didn't have a laptop with which to get online.

Last week the vertigo finally settled down, but then I started having problems again with my sacroiliac joint and left hip slipping out of place. Sitting at the computer in the kitchen was excruciating.

Yep. It's been a jolly good time.

But things are starting to look up. I'm sitting and walking fairly comfortably now and the world is no longer spinning, though I think we both still have a bit of stuffiness in our lungs and noses. My moderation duties have quieted back down as our group returns to its usual tepid level of discussion.

Alas, however, blogging will have to wait for a bit. Some incredibly generous friends are donating a used MacBook but it will be another week or two before it will be in bed with me (hehe that sounds so kinky).

Usually such breaks from the computer mean I have a lot to write when I finally come back. And this break, I suspect, will be no exception. So, I'll see you all in a couple of weeks with, hopefully, some thoughtful writing.

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"I'd rather have HIV"

From the Q & A in yesterday's New York Times with immunologist Dr. Nancy Times:

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which mpacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

An AIDS specialist at the Oregon Health Sciences University, Dr. Mark Loveless, who also treated ME/CFS patients before retiring told Congress in 1995 that a CFS patient "feels every day significantly the same as an AIDS patient feels two months before death." Indeed on the Karnofsky fatigue scale, which Loveless administered to both AIDS and CFS patients, he noted that many AIDS patients scored higher in their last week of life than CFS patients.*

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*Hillary Johnson, Osler's Web, New York: Penguin Books, 1996, p.364-365.

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It's the virus, stupid

Since A. arrived a week and a half ago, I have awakened each morning to his succinct report of the most interesting news story of the day such as the latest creepy cop video on Reddit or the most recent Obama capitulation to the Republicans or the insurance industry.* But Thursday when I woke up he said that there was no news, nothing at all interesting to report.

"So today, October 8, 2009 will be the day forever known as the day of no news," I joked.

But alas, it was a huge news day for ME/CFS patients. As I turned on my laptop and read that Dr. Judy Mikovits, the hero of this post, had found the retrovirus that may well cause ME/CFS, I teared up. From relief that the retrovirus was finally found. From hope that maybe I might soon get my life back. From anger that I might have a virus I could be passing to my boyfriend and the government agency charged with understanding and informing us about communicable diseases -- the Centers for Disease Control -- has spent the last quarter of a century doing little to figure out what exactly has been making us so sick.

For the last few weeks I've been plodding through Hillary Johnson's tome, Osler's Web, which details the history of ME/CFS, what the Whittemore-Peterson Institute is now calling X-Associated Neuro-immune Disease (XAND) or more informally I.T.V.S -- It's The Virus Stupid. From the very beginning of Johnson's narrative an unknown retrovirus plays a prominent role. Indeed two weeks ago I spent my Saturday night reading about retroviruses on Wikipedia and whatever else I could find on Google, so I was actually rather prepared for Thursday's announcement. I already knew that there were only three other known human retroviruses, HIV, which causes AIDS, HTLV 1, which causes a type of leukemia, and HTLV 2, which causes a type of lymphoma. That retroviruses integrate themselves into the host's genome and are contained in RNA which then inserts itself into DNA -- rather than the other way around as is the case with other viruses -- making them impossible for the immune system to clear and wreaking havoc in the process.

True, we can't yet say that XMRV is the cause. A part of me is still afraid to celebrate as there have been so many possible breakthroughs in the past that have turned out to be, at best, anemic. But then, we've never had a study with someone like Frank Ruscetti among the study authors, one of the nation's top cancer researchers who used to work with Robert Gallo, a co-discoverer of HIV. We've never had a journal as prestigious as Science treating ME/CFS like the serious, debilitating illness that it is. We haven't had skeptics like molecular biologist John Coffin go from doubtful to proclaiming “they will be celebrating in the clinics where these people [with CFS] are being treated.” And while the Science study may be small (101 patients), Dr. Judy's group developed even more sensitive tests after submitting that paper that have found XMRV in 95% of 300 ME/CFS patients as well as 500 patients in the UK.

Not that it has impressed the guy at the CDC who should have found this virus, as this paragraph from NatureNews suggests:

William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS".

An illness like CFS? That psychosomatic, "mind-body condition" Reeves has been studying by looking at whether patients were abused as children and were making themselves sick by feeling too much? Yes, I can see how these findings were "unexpected and surprising." I mean, it's not like the man who heads the Chronic Viral Diseases Branch at CDC should have actually thought an illness like CFS would be viral in nature.

But like a cruel, corrupt, and ultimately inept warden who is suddenly caught out by the authorities and the inmates turned over to more competent hands, one can only hope that William Reeves and his pals Peter White and Simon Wessely will fade into the shameful history of ME/CFS/XAND as Dr. Judy and her lab find what patients and a handful of doctors have suspected all along: it's the virus, stupid.

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*It took me several minutes to believe him when he told me Obama won the Nobel Peace Prize as I was sure it was a joke. But that's a subject for another post.

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Hard struck

I was reading an excellent piece yesterday in Harper's Magazine where the author insisted, despite the assertion of technocrats who worship the bottom-line, the humanities are as indispensable to a free society as the sciences are supposed to be to a strong economy. As someone who has always been a humanities sort of gal, I found it to be an elegant and timely credo. And for a moment it felt like 2001 again.

Though illness was increasingly frustrating my ability to do so, that year found me spending my time reading about pedagogy and interdisciplinarity and the history of liberal education. I was working on a paper about the potential of interdisciplinarity to save liberal education after a conference on higher education accepted my proposal. The acceptance letter even addressed me -- gloriously mistaken -- as "Dr."

And then the flashback ended. I remembered that I was here. In 2009. Listless in my pajamas. Using my bed table to hold the weight of the magazine as I am too weak to do so. Arguments about the value of the humanities and the state of American education were suddenly vague and remote. That's when it struck me and struck me hard: I'm no longer a teacher.

When I was seven and spending a week with my grandparents in their smokey cavern on the Coastal Range while my mother had ear surgery, I can remember asking my grandma under a brilliantly bright sky what a teacher does. I can't quite remember her answer now -- funny that I can remember the smells and sensations but not the substance of the memory -- but I then replied that I wanted to be a teacher. Over the years the type of teacher I wanted to be changed (elementary, secondary, missionary, college), but teaching was the consistent core of my vocational aspirations.

Will I ever see a classroom again?

Friday will mark the eighth anniversary of the day I handed in my resignation as a graduate assistant in our university's general education program, University Studies -- well short of my ultimate career objective of being a tenured professor. To be sure, I did a lot of teaching, if not about my subject of research (but then, who ever really does teach about their research?). Just as my fingers were starting to brush against the prize, the illness swooped in and dragged me away to its hellish lair.

Yes, I know. I am not unique in watching my dream drop off the horizon along with the daylight. And it's not even like I haven't cried over this loss before. Grief is funny that way. Or rather, capricious and arbitrary that way. Smacking you like a two-by-four across the head when you're not expecting it.

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The ME/CFS advocacy conundrum

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 patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.

____________________

*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.

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Found

I woke up Tuesday with a sticky despondency I have not felt in a very long time. It was early -- that is, in Michelle-world, 1 pm -- as I had an appointment with my primary care provider to discuss the lower right abdominal pain I've been having for five years. Except I knew there was little chance of resolution given that my doctor has been chipping away at it all these years with MRIs, CT scans, ultrasounds, physical therapy, a urologist, a gynecologist, and two uro-gynecologists. "That's it. We need to get in there," he declared almost two years ago. "You need a laproscopy." However since I'm on Coumadin, it's not like surgeons are lining up to cut into me. And to be honest, I'm not exactly eager to have them cut into me.

After a few pleasantries where we talked about how he can't remember the last time he actually took a lunch given the workload that twenty-two – "twenty-three, today," he corrected – patients a day creates, we went through the whole thing again. How this pain was left over after a urinary tract infection that presented as pain at the base of my spine traveling down the back of both legs and a fever of 104. Since then a mostly dull, pressure sensation has remained just below and to the right of my belly button that is hot and sharp when pressure is applied. Since starting morphine a year and a half ago (which is why 1 pm is early), the pain is fairly tolerable except the ten days or so leading up to my period when it really interferes with sleep, physical therapy exercises, standing, etc. The unusual and mysterious urinary tract infections I had for a year and a half (summer 2004-winter 2006) are now part of our unspoken collective memory.

"Maybe a hernia. Sometimes there are hernias that aren't very visible," he said with furrowed brows.

"Funny you should say that..." I began. The week before I'd developed pain in my groin/thigh after straining congruent with a hernia and was sent to the ER by his nurse. The ER nurse and doctor both thought it sounded like a straight forward hernia but, alas, the CT scan came back negative. My doctor tempered his frustration by looking for the ER report that had, apparently, not yet arrived.

We moved to a discussion of my unstable sacro-iliac joint and how I seem to be having a similar problem with my hips. He had me do some range-of-motion exercises, which I did with ease.

"The only problem with range-of-motion I ever have," I tried to remind him, "is that I have too much of it." For someone who is used to dealing with a never-ending stream of arthritic people who can barely move, the idea of "too much range-of-motion" is completely lost on him.

"I suppose – theoretically -- if there is some nerve compression in the sacrum then it might refer to that area in the abdomen," he pondered. "Let's do an MRI of the sacrum. If nothing shows up, my instinct is still that it's a genitourinary issue and to send you back to Dr. C." The second uro-gynecologist.

So Tuesday I'm to have the third MRI of my lumbar-sacrum in five years, though I'm sorely tempted to just forgo it and save the taxpayers of the fine State of Oregon the money, not to mention my body the radiation as I'm 99.99999999% sure it will show the exact same thing it did the last two times (2004, 2007): minor arthritis of the spine.

I returned home via the medical transportation cab, gazing out the window to see people living life – life that I miss terribly. Walking in the Park Blocks under the brilliant blue Portland summer sky, sitting in cafes, riding buses, driving, biking, talking to friends, grocery shopping, working, reading books...Returned home to my studio apartment, the cell to which I've been sentenced for the past eight years (well, this particular cell for the last four).

The pain arrived not long after the symptoms of my illness, Chronic Fatigue Syndrome (the most ridiculously name disease ever), began to get markedly worse, and I have been hoping that if we could figure out what was causing that pain maybe I could get better. Sure I wasn't going to get ALL better. But it would be nice to wake up before noon and see the sun again. Be able to read a book again. Be able to write more. Maybe go to Divine Liturgy or Mass again. And maybe, just maybe, get on a plane and visit my boyfriend in the UK.

I woke up Wednesday with the same despair as Tuesday. Brushed it off initially as PMS but wondered if it might be related to the increase in Promethazine a few weeks back and decided to cut it from my bedtime meds. Especially as lately I wake up feeling even more groggy than I usually do. How can one not feel at least a little despair to sleep 12-15 hours a day but never wake feeling refreshed? To wake up everyday feeling like you desperately need more sleep but being so achy from being in bed you just have to get up?

Ted Kennedy had died the night before. Charlie Rose was re-airing two recent interviews with him and I found one of the points he was making about all the doomsayers regarding Social Security and Medicare entitlement spending a very important one.

Kennedy: "If you have a breakthrough in Alzheimer's, you empty 2/3rds of the nursing home beds in my state of Massachusetts...

Rose: "So you're saying, let's fund the NIH, let's fund the research..."

Kennedy: "This idea that it's a zero-sum game is crazy. The Republicans believe it. They think it. They're wrong."

If more ME/CFS research were funded and adequate treatments developed, not only would US taxpayers not be paying to support me on SSI, but I would be paying taxes as a middle-class academic.

Considering the state of NIH or CDC research of ME/CFS is about the last thing a depressed person should ponder. Reading through the most recent threads among the ME/CFS patient community about whether or not the CFIDS Association has or has not been an effective advocate over the last 17 years is also rather bleak, if still somewhat enlightening. I've found myself writing about that too in order to make sense of my thoughts, though I haven't made enough sense of it yet to post anything.

Perhaps it's because I've also been distracted by ongoing thoughts about how being housebound cuts me off from the Church. I have not been able to go to Divine Liturgy for four years now. When Father F. came here two and a half years ago to do a truncated version of the Divine Liturgy for me, I crashed badly and he ended up in the hospital due to a C. difficile infection. He is not the healthiest man, and I hate to bother him because of that, not to mention having the Divine Liturgy here is clearly hard on me (I stood with him last time; I have since moved my icons next to my bed). I never hear from anybody at Saint Irene's. I'm certain I've been long since forgotten by everybody besides Father F. And he only remembers me because I speak Arabic.

I've tried to find some sort of spiritual connection with the Journey-Koinonia community up the street as it's close enough to come home early if I get too ill, not to mention it's not as sensory-intensive as the Divine Liturgy. Theologically and politically there is a lot I have in common with them, even if I dislike their liturgy. But I've only been well enough to celebrate Mass with them once since last November – Palm Sunday – and nobody there has been particularly eager to spend time with a shut-in. I'm on the email list so I get the weekly homily and announcements. But that's not the same as human contact.

Yes I feel abandoned by the Church. Not welcome to participate in the life of the Church because I'm housebound. Most people think installing a wheelchair ramp is about all you need to do to be friendly to the disabled. By the very fact that the housebound are, well, housebound means the community cannot possibly be obligated to include them, despite all that the housebound have to offer. Meals-on-Wheels – that 30-second transaction of handing over a less-than palatable meal – is all they need, right?

I woke up Thursday with less melancholy, though still ruminating about the ME/CFS community and feeling forgotten by the world outside my apartment. Read more in the ongoing thread about the CFIDS Association. Found the litany of people who had been sick for 20 or more years terribly disheartening. Is that what I have to look forward to? Another ten more years staring at the same damn four walls? I really wanted a good cry, but no tears were forthcoming.

There were a few tears during massage therapy on Friday afternoon. Most of the time it's my right hip that hurts, but as my massage therapist began massaging my left hip and buttock, I was reminded that it, too, is also in pain but usually forgotten about amidst the roar of pain on my right side. The gentle rubbing and kneading felt almost sacred.

My mind was scattered Saturday. Not depressed, but not exactly jovial. Mostly just...tired. That word I must use a zillion times a day. Yet a tired I have no idea how to explain to someone who has never felt it before. Like someone slowly sucking all of the very life out of you. I had enough energy to fry up some frozen hash browns, a sausage and a strawberry-ricotta cheese omelet. It was nice but not nice enough to match the amount of energy I used up making it.

After my daily chat with A., I kept trying to decide if I should watch a movie or take a bath or check my email. Eventually "check my email" won out, among which was a link to a post on Hillary Johnson's blog that I thought maybe I'd already read. I never know half the time because my memory is so poor (but it does make re-runs so much more interesting!). She was talking about the Invest in ME conference in London last May and eventually I decided that no, I hadn't read this post, even if much of the material was familiar to me. There was a lot about the new Whittemore-Peterson Institute and Annette Whittemore talking about the backward, apathetic, and slothful pace of research contrasted with Judy Mikovits's exciting research I've been hearing so much about over the last several months. Research about the immune system she's been able to do within a mere year that the CDC and NIH haven't managed to do in the past quarter of a century. I could feel the spark of hope lighting up again. If maybe my doctor could get access to that Virochip...

“It’s a very, very powerful tool to have a research scientist sit in the same room with a patient who is so ill, and listen to their story…" Annette Whittemore told the London crowd.

"In fact, we have to tell our young students to go home, take a break. It’s no wonder they’re so loyal and enthusiastic. Their mentor outworks all of them...”

“...Dr. Judy, as she tells patients to call her, has taken this field by storm…Her expert, broad training in Frank Ruscetti’s (NIH) cancer lab, and drug development in southern California taught her to realize when something is so terribly wrong. She answered a plea to come to Reno.”

I could feel the tears coming from that place in the center of my chest. Somebody has finally found us. Somebody who could actually help us IS actually helping us. Somebody with the knowledge and the technology and the contacts is using all of that to help us. Us. The "chronic fatigue" patients that nobody will touch with a ten-foot pole lest it damage their careers and precious funding.

But it was the postscript that got me. "Dr. Judy Mikovits has asked me to post her cell phone number and e-mail addresses to this blog. 'These patients mean everything to me,' she wrote. 'I have never done anything with my private life but serve patients...we encourage each other.'"

What a sweet but crazy woman, I thought to myself. She's going to be engulfed with thousands of desperate patients like me and worse sucking her dry for help! And indeed in the comments section was an anguished plea from a mother who was sick along with her son and had lost her home and income.

This remarkably reckless act of kindness is what finally produced the cathartic cry I had been needing. In the history of our illness there have been a handful of doctors who too have provided their remarkably reckless acts of kindness, even if all they could really offer was just comfort and symptom management. There have been those like my doctor, who keeps laboring away each day with little to help him find his way. But from far too many we have faced derision, apathy, doubt, rejection, and abandonment. Children have been ripped from their parents. Patients have been committed to mental hospitals against their will. A few have even died – and are dying from the rare lymphomas that first drew Dr. Mikovits to Reno in the first place. Most of us are simply left alone to watch the lives and the people who were in those lives float away never managing to ever quite touch them again.

I woke up today feeling like, if not refreshed, like I'd actually slept for the first time in awhile. No, I still wasn't able to go to Divine Liturgy or Mass. Again. But I had my own solitary liturgy with more faith that someday – perhaps soon – I'll be well enough to sing the Cherubic Hymn with live people and not just a CD. And of course, I said a prayer for Dr. Mikovits, Annette Whittemore, Dr. Peterson, and all the unnamed patients of this insidious disease who are, at last, being found.

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Potty mouths for pain

The word fuck never crossed my lips until I got sick. Until I got vertigo, to be exact. I had just started my first grown-up (i.e. non academic) job. I even had my own cubicle and business cards. Then I woke up one day with everything spinning. When the doctor diagnosed me with labyrinthitis, telling me there was nothing that he could do and I just had to wait up 6 weeks for it to leave on its own, I walked to the bus stop across the street from my clinic and let out a torrent of fuck.

Turns out, it may have been a good coping mechanism. Indeed, this study shows that swearing actually can help reduce the intensity of pain -- something else that increased a great deal once I got sick. And needless to say, I swear like a sailor now. Though, according to the psychologist who did the study, the more you swear, the less effective it may be.

A new, more substantive post is forthcoming. Illness and other events have conspired to limit my blogging of late, but not my thinking. Hopefully I'll be sharing some of those thoughts in the next week or so.

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"Will you please call me Cordelia?"

"Will you please call me Cordelia?" she said eagerly.

"Call you Cordelia! Is that your name?"

"No-o-o, it's not exactly my name, but I would love to be called Cordelia. It's such a perfectly elegant name..."

"...Unromantic fiddlesticks!" said the unsympathetic Marilla.

oOo

"Do you never imagine things different from what they really are? asked Anne wide-eyed.

"No."

"Oh!" Anne drew a long breath. "Oh, Miss -- Marilla, how much you miss!"

"I don't believe in imagining things different from what they really are," retorted Marilla. "When the Lord puts us in certain circumstances He doesn't mean for us to imagine them away."

Anne Shirley has been a kindred spirit ever since I first watched the Kevin Sullivan production of the classic book by L.M. Montgomery. The first time I heard her talk about "so much view for the imagination," I remember thinking, someone else thinks like that too? followed quickly by oh but you're not supposed to say that out loud! Like Anne I spend a lot of time in my imagination. And when you spend the overwhelming majority of your time alone (and in bed to boot) the imagination can become your permanent place of residency.

For the last four years now I have required an in-home caregiver. I don't know why, but I always imagined she'd be a thick Germanic sort of woman. Probably based on a character in a cartoon or TV show that I've long since forgotten. She'd be no nonsense. A bit like Marilla, though more affectionate. Or maybe Thelma Ritter in Rear Window -- a caring but bossy nurse scolding me when I didn't rest enough or spent too much time on the computer. She'd be discerning, dependable, and devoted. A sort of second mother.

The reality, of course, is completely different. It's having a total stranger come into your home when you've just waken up and every dish you own is scattered about the kitchen counters and the laundry is a smelly mound Sir Edmund Hillary would have found a thrilling climb. It's having a total stranger who doesn't understand that while you may look perfectly healthy because you're young, not paralyzed on one side, and still have most of your wits about you, you're not. It's having a total stranger handle your belongings both precious and intimate.

Indeed the very first day with my very first caregiver ended with laundry soap all over the bathroom, the hardwood floor stripped with dark grime after being mopped, and the LCD screen on my laptop sporting a giant crack after she tripped over the cord and sent it flying (to be fair, that last one was mostly my fault for leaving my laptop in a precarious position). I burst into tears upon her departure. The agency actually fired her a couple of months later after she repeatedly failed to show up for work. I felt badly for her because she had no telephone but did have a child with a father who wasn't particularly helpful with childcare. Yet she was obviously in the wrong line of work.

It got better after that. Her replacement, J., was as perfect a caregiver as I could want. Her first day she simply went about tidying up the disarray of my home without needing a great deal of instruction. Over the months I learned about her kids and grandkids. Even about her own childhood. When my building's vacuum cleaner broke, J. picked up a used one for me at a local thrift store and never charged me for it. Indeed when I gave her a Christmas gift, she was visibly uncomfortable being on the receiving end of generosity. I was heartbroken a year and a half later when the agency she worked for dumped all of us county-paid clients. The county then moved us all to the only other agency they were contracted with and J. wouldn't work for them. I didn't blame her. The pay was shit and they effectively didn't provide health insurance. Which meant that her replacement wasn't nearly as good.

This last January I was switched to a different program which doubled my monthly allotment of caregiving hours. But with this new program, I have to hire my caregiver. And I hate calling strangers on the phone. With the old program, the agency just sent me someone. If I didn't like the person, I could ask for a new one but the agency was really the boss. Now I am and it feels...weird.

The first woman I hired, G., had the potential to be another J. But she had to quit after three months when she got a job that provided health insurance. I quickly hired S. as she worked for a woman just across the hall. S. could sense my natural passivity and promptly decided to take charge herself, which, on her second day, included replacing my old laundry baskets and handing me the bill. I hate conflict and since it was only $4.50, decided that was cheaper than mustering the energy to say no. Later that day she decried the clutter in my apartment and, after asking me if it was because of my illness that I'd "let the place go," notified me that she wanted to completely reorganize everything. Yes, there is clutter in my apartment though, while not nice to look at, it is neatly piled on shelves and out of the way.

This was not exactly the sort of bossy I was looking for.

So I mustered the energy to sit her down the next day and explain that I appreciated her ambition but I needed to channel that ambition based on my priorities, not hers. In addition, if she made me feel self-conscious about everything, she was not going to work out. She apologized, acknowledged that I was the boss, and agreed to follow my agenda. I thought it was going to work out after that. But, alas, she switched to a more passive-aggressive approach, telling me how I needed to replace this or that, including my vacuum as it hurt her shoulder. When she emailed me a few days later to tell me she was quitting because her shoulder hurt and her doctor told her to cut back on work, I was relieved. Fake excuses do make the world a happier place, no?

But that left me needing to hire yet another new Home Care Worker. And calling more strangers from among a list of names. It took me almost a week before I even looked at the HCW list and a few more days before I started calling potential caregivers. While my phone phobia could explain some of my procrastination, there was clearly more to my dawdling.

As I sat and thought about my feelings, I realized that, along with my continuing resentment over not being able to do my own cooking and cleaning, was fear and vulnerability. Will the new HCW understand that I really am sick, despite my seemingly healthy exterior? Will I have to prove I'm truly deserving of in-home care? Being fat makes me particularly paranoid about being seen as lazy. And breaking in a new caregiver can be tiresome with having to show where everything is, what needs to be done, and how to do it. I'm tired of putting together task lists and care plans (I haven't ever even bothered with creating a job application or seeking/checking references as apparently I'm supposed to). Being my own HR person is exhausting. I just want someone to simply take care of me already.

In the end, here alone all the time, it's so easy to slip into my imaginary world with my imaginary caregiver who already understands how ME/CFS works and will make me rest. Who doesn't need me to list every last thing that needs to be done but just...knows.

While I don't know if it was God, karma, fate, or whatever that put me in the circumstances that I'm in, Marilla's point that I'm not meant to imagine them away has a great deal of merit. Once I awake from my reverie, the real world is still here requiring my action. I can whine all I want about how hard it is. And like Anne begging to be called Cordelia, I can beg for life to be like it is in my imagination, but at the end of the day she was still Anne -- with an "e" -- and I still need to hire somebody to come do my laundry.

Eventually I got around to hiring another home care worker, P. And she was great. Not very Marilla-like, but she cleaned even better than J. She cooked the unusual Chinese medicinal recipes I gave her with ease. She even agreed to work my dream schedule. However after a wonderful first month, her attendance became erratic. During her first absence I was just so worried about her I didn't think about being upset. Her excuse, that her basement along with her cell phone had flooded, seemed a bit shaky. But I was so relieved she was okay, I let it slide. Then she slept through an alarm one day. Or forgot to show up on another. When she didn't show up last week, with a heavy heart I finally had to let her go.

So tonight I hired my newest HCW, SL. I'm sure she won't be the caregiver of my imagination, even if she does kind of look like her. I don't even know if she'll be as perfect as J. was. But she's had years of experience working with the Department of Human Services Home Care Worker program. And when I explained how ME/CFS works, that even though I can walk around the apartment unaided (though sometimes with a cane...or two) and may not look sick I really am, she immediately responded, "I know you've got to be really sick because they don't just give anybody a Home Care Worker."

But when she starts next Monday, I'll still have to explain where the dumpster room is, how I use vinegar for fabric softener, and that it takes $1 to wash and seventy-five cents to dry. I'll still be the employer who needs to articulate employee responsibilities and evaluate her performance. Ours will be a business relationship with her providing a service that the state pays for on my behalf.

Though I can always imagine it's an all-knowing and kindly if bossy nurse...

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Other peoples' revolutions

For the last week I've watched friends on Facebook decry the brutality of the crackdown on protesters in Iran. "Contact the UN about what's going on in Iran!!! (and it's always with multiple exclamation marks)" Because that will accomplish...what exactly? And on Twitter, half my friends have tinted their avatars green to show support for the Iranian supporters of Mir Hossein Mosavi, whose green face is often seen waving above the heads of fashionably-dressed Iranian youth like a cartoon character about to throw up.

To be honest, the whole thing makes me feel rather nauseous too.

Now I have a great deal of respect for anybody who is willing to stand up and risk being shot for what he or she believes in, regardless of the cause. It takes some balls – or gall, depending on your gender – to brave live ammunition.

What's loathsome is the way Americans respond to other peoples' revolutions. We are (for some reason) shocked and disturbed that they're using live ammunition, not realizing that this is how revolutions work. People march, tear gas is released, some get shot, but hopefully (though unfortunately less often than not) things change for the better.

We tint our Twitter avatars green because the cool kids twittering in Iran are waving green banners, not knowing that green is the color of Islam – the same color that gets waved and worn at Hamas rallies. Nor has anybody bothered to read anything about Mir Hossein Mousavi, assuming he's Nelson Mandela or Robert F. Kennedy, rather than a man who was involved in the Marine barracks bombing in Beirut in 1982, was known for crushing dissent when he was the Iranian prime minister during the 1980s, and ran on a platform of returning to the teachings of Khomeini and catering to business interests in addition to moderating a few of Iran's repressive social rules. Ahmadinejad may crush dissent too, but at least he redistributed oil money to the poor -- the ones cleaning up after the "Gucci crowd" when they've finished protesting for the day.

And, of course, the support provided to the kids in Iran is remarkably selective. There is no twittering about the Palestinian kids in Bil'in who every week utilize the teachings of Ghandi and King and stand up to and get shot by live ammunition because their homes are being stolen, their education is cut off, and their youth is often spent in jail because they had the audacity to be born in a land someone else wants. There is no indignation over the fact that the gas flowing into our cars comes at the expense of some other Shi'ite kids - but in Saudi Arabia - who can't even practice their religion and nor dream of protesting because they would be immediately shot or worse.

But the thing about Americans and other peoples' revolutions that really makes me sick is that it's like we live vicariously through them rather than get off our asses and march in the streets ourselves. At this very moment a handful of rich white guys on the Senate Finance Committee are about to hand the insurance companies – the very entities that keep us from the getting the health care we need – a trillion dollars worth of our taxes without even giving us the choice to buy cheaper, better insurance from the government. And Americans aren't going to do a damn thing about it.

Nor is the "cool" American president young people voted for because all their friends on MySpace said they just had to vote for him. Indeed about the only campaign promise he is keeping is escalating the war next door to Iran in Afghanistan and its neighbor Pakistan. He sat by and let Congress vote down a bill to help people being kicked out of their homes. True, he is closing Guantanamo Bay, but only by indefinitely holding people elsewhere for crimes they might commit. And now with health insurance reform (and that's what it is, not health care reform), the only thing he's told Congress he's firm about is that he wants a bill on his desk by October.

In the meantime, 18,000 people a year are dying for lack of health care. Thousands more are going bankrupt despite having health insurance. Hundreds of thousands of people are losing their homes (not to mention another hundred thousand were homeless before the foreclosure crisis ever started). Millions are out of work. Millions -- who are disproportionately African-American – are in jail in our supposedly free, democratic society (more than China, Russia, and Iran combined). Millions are living in third-world conditions inside our very borders (and again are disproportionately African-American). Over a hundred thousand bridges are "structurally deficient or functionally obsolete." Our educational system is churning out students who cannot write, calculate, or think critically. And, of course, the planet is burning up, the weather is changing, and the one major city already drowned as a possible result has been largely forgotten.

If you're fine with all that, then by all means, keep updating your Facebook page with pics from that party last Saturday. Keep reporting what you had for breakfast on Twitter. Keep watching cat videos on YouTube and noting your occasional outrage on Reddit.

But if you want access to decent, affordable health care, might I suggest you get off your ass and into the streets because Washington is not going to change just because you elected that cool guy you secretly wish was your dad/lover who promised it. Washington is only going to change by the people taking seriously the job that the Founding Fathers gave us in the first place: government. "We the people..." – remember? We are the government, not Pfizer, Lockheed Martin, Citibank, Blue Cross Blue Shield, or Clear Channel. But they are the ones running this country, not you or me. And they aren't going to give up the power they've got until we rip it out of their cold, dead hands.

So quit prattling on about a revolution ten time zones away without doing something here. Quit delegating the job of changing the world to somebody else. The coolest revolution of all is the one you twitter about from the streets, not your living room.

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Instability

My ass has been so sore the last several days that it hurts to sit much, even on my bed (aka The World's Softest Bed), hence the paucity of posting. I've had a couple of posts I've wanted to write for weeks now rattling around in my brain, but between some nasty crashes and the events described below, blogging has dropped way down the priority list.

On May 29th, I woke up feeling as if someone had driven a railroad spike through the base of my spine. I couldn't walk, sit, stand, or turn over in bed without excruciating pain. A week later at 6:30pm, it abruptly stopped, allowing me to sit again and walk a bit (aided by a cane...or two), though it still hurts quite a lot to stand or turn over in bed.

This has happened once before, also right before my period and also during a month when I'd gotten an extra dose of estrogen (that time I had gone off the progesterone-only pill but this time God only knows why I got the extra dose of hormones). However unlike last time, I had a good idea this time around what was causing the pain because my physical therapist had recently identified weakness in my right sacroiliac joint (where the sacrum at the base of the spine attaches to the pelvis) and given me exercises to strengthen the muscles surrounding the area (which I have been doing religiously, especially as I can do them laying in bed). That extra batch of estrogen made my ligaments even more lax than they already are, leaving my sacroiliac joint even more unstable.

In normal human beings, this is a very, very stable joint with super thick, strong ligaments to keep it in place. In me, it slips and slides around like a kid on wet plastic in the hot summer sun. It's not my only joint that does this. I've had two surgeries to correct unstable joints (right ankle and knee). My fingers, elbows, hips -- all pop in and out of place. And since junior high I haven't been able throw a ball over hand using either arm without the shoulder coming completely out of joint and then popping back in.

And yes, it feels just as icky as it sounds.

After talking with my physical therapist, she's recommending I start using a walker until it heals up (though my insurance company at the moment won't approve said walker). I also have a brace to help it stay in place, but the brace presses down on an already pinched lateral femoral cutaneous nerve in my right thigh.

Sigh. I'm a real piece of work alright.

But -- at least today! -- I have a bit more energy. Fingers crossed, I'll get to those posts that have been floating around in my head and bring some stability to my blogging.

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Come to bed with ME

(I love tag line, but I wish the poster were a bit more kinky)

Today is International Neuroendocrineimmune Disorders Awareness Day -- including ME/CFS -- during a week dedicated to ME/CFS Awareness. I've commemorated the day in years past by listing what I've lost due to this illness, as well as what I've gained from the experience of illness. This year I thought I'd describe what it's like to have ME/CFS, in addition to the example of an X-Files phenomena I used a few years back.

Here in bed with ME/CFS, you feel like you have the flu. Your throat hurts. Your joints burn. Your heart beats like mad. You feel chilled, profoundly weak, slightly nauseous, light-headed, mushy-brained, and just...icky. I wish I knew a more specific and/or scientific word to replace icky. It's almost like your blood has been replaced with poison. You feel dreadful. Vile. Horrible. Nasty.

And on top of that...

You've got a hangover. Everything smells so strong. The lights are so bright. Loud noise grates on your last nerve, as well as that throbbing in your head just behind your eyes and at the base of your skull. And you might still be a bit tipsy because your spatial perception is off (if I try to do that test where you close your eyes and touch your finger to your nose, I hit my cheek or my eye), not to mention you can't walk a straight line. Sometimes the room just spins.

And on top of that...

Someone is giving you low-grade electric shock torture and doing voodoo on you with a knitting needle. Most of the time it's a constant burning sensation throughout your whole body punctuated by arbitrary 5-30 second jolts of sharp sharp pain in completely random places -- your ear, your belly, your right arm, your left heel. (The burning sensation and the arbitrary jolts get markedly worse whenever I have an acute infection, especially if I have a fever.) And you have this weird buzzing sensation in random places too. As if a bumblebee or hummingbird were just beneath your skin. It doesn't hurt, but it's...weird.

And on top of that...

If you also have fibromyalgia (which up to 70% of ME/CFS patients do), you feel like you just had your first day on a chain gang breaking rocks in a quarry. Or that you went to the gym yesterday and worked out harder than you ever have in your entire life by far. Every muscle in your body burns and aches and is so stiff you can hardly move. You want to curl up in bed and sleep, but the kicker is you can't. You just lay there, though eventually you get up just to move a bit because your muscles have petrified and the stiffness is agonizing. You wish you could go to bed at a normal time and get up at a normal time, but your body runs on its own clock that, unfortunately, is not during normal business hours.

All of that. All the time. That's what it feels like in this bed. That's what it's like to have ME/CFS.

One million Americans have it -- more than have MS or breast cancer -- but it's among the bottom in diseases funded by the National Institutes for Health. The main reason for that is because most people don't take a disease named "chronic fatigue syndrome" seriously. However, as you can see, it's not just being tired. It's as/or more debilitating than congestive heart disease, multiple sclerosis, lupus, or end-stage renal disease.

So what can you do?

1. Donate money to fund research into what's causing this disease and how to treat it. Organizations include:

• CFIDS Association of America - great advocates who have funded great research
• Whittemore-Peterson Institute - first clinic devoted exclusively to research and treatment
• IASCFSME - the main professional organization of ME/CFS clinicians and researchers
  
• ME Research UK - a UK organization doing superb advocacy and research
• CFS Research Foundation - UK group doing cutting-edge genetic research

2. Let your elected officials know you want them to fund more biomedical research into the causes and treatments of ME/CFS. The CFIDS Association has a great "Virtual Lobby Day" page to make this as easy as possible.

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CDC has lost its mojo -- if it ever had it

The swine flu is not the only thing making life uncomfortable for the Centers for Disease Control at the moment. A week ago many of us in the ME/CFS community were abruptly given notice that the CDC wanted "stakeholder" input on their new 5-year strategic research plan per the suggestion of a peer-review study last November.

CDC is seeking input from interested parties on issues that CDC will consider as it develops this research plan...The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS.

My first input would be to say that CFS is not merely a "medically unexplained chronically fatiguing illness" and if the CDC was reading current research by anybody but themselves they would know that. But I digress. The catch to this input was that one, "stakeholders" had about a week to prepare their "input" and two, CDC was only asking for input on five specific areas:

1. Studies of Defined Populations
2. Provider-based Patient Registries
3. In-hospital Clinical Studies
4. Laboratory Studies
5. Provider and Public Educational Intervention Research

Among the ways that we "stakeholders" could provide input were the traditional mail and/or email, as well as a fancy, technologically-advanced telephone conference on the afternoon of April 27th in which "stakeholders" could call in and provide comments. And boy oh boy did ME/CFS patients, researchers, and advocates call in!

The CFIDS Association posted remarks from among their comments on their Facebook page (also posted at Co-Cure - hopefully one of those links will work if you're not on FB or CC) and here are some highlights:

Katrina Berne, Board of Directors of The CFIDS Association:

The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, misappropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology. The CDC has not had a meaningful or significant impact on our understanding of the illness or how to treat it...

...It is my understanding that no one in the CDC attended the March, 2009 symposium presented by the International Association for ME/CFS in Reno, Nevada. This is a strong indicator of the CDC’s lack of desire to keep abreast of recent research developments, hardly a good sign of interest in moving forward by building on existing knowledge. (This was a truly appalling lack of professionalism on the part of CDC - M).

...Efforts to date have merely compounded the loud and clear message that the CDC does not take CFS seriously and has no organized approach to investigating this complex and devastating disorder.

From Jennie Spotila, Chairman of the Board of Directors for the CFIDS Association:

...Your "Draft Strategic Research Plan General Outline" was made available for stakeholder review only five days ago. This outline is so devoid of specifics that the only input I can offer is to point out what is missing...

...Your general outline could have been written two years ago, or ten. "Refine understanding of the etiologic pathways," "improve clinical management," "move CFS into the mainstream.”" Yes, yes, of course. There is nothing new in this list of objectives. There is no specificity, no measurable commitments, and no accountability. There is no acknowledgement of the many problems in the CFS program, and no plan to fix them...

Kim McCleary, President and CEO of CFIDS Association:

...But the CFS research group has lost its mojo.The CDC’s CFS research group receives half of the (meager amount of) money that the U.S. spends on CFS. Half. CDC has provided extensive financial information on its CFS spending between FY2005-2008, during which time expenditures totaled about $23 million. Since 2000, CDC has spent about $71 million on CFS and it has published 115 peer-reviewed articles in the same time. I doubt most academics could survive with that record...

...Goal 2 of the research plan, clearly an education-related activity, appears much better suited to either the National Center for Health Marketing or the National Center for Chronic Disease Prevention and Health Promotion.

...This group named the “Chronic Viral Diseases Branch” is currently doing little if any research on viral (or other biological triggers) of CFS...Instead, the group is focused on early life psychological stressors, a risk factor in most chronic illness, and proposes to study whether the economic crisis will result in a higher rate of CFS among respondents in the next phase of the Georgia surveillance study...So much opportunity has been lost to study the rates of CFS occurring in the wake of outbreaks of West Nile Virus, avian flu and now swine flu, and other acute infections or chronic exposures like toxins and molds. There is great opportunity cost to the choices that branch leadership has already made in an apparent vacuum within its own center...

That figure of $71 million dollars blows my mind. They've spent $71 million dollars in the last nine years and we don't even have a fucking biomarker much less decent treatment?! What the hell have they been doing with All. That. Money.?

I did not call in. I've spent the five days from the time I got the email to the day of the teleconference wondering what on earth I could say that would respond specifically to their five criteria. But Jennie Spotilla articulated what I haven't been able to, namely, that the five criteria were irrelevant and what needed to be addressed was what was missing from their list of priorities. Of course, part of the insidiousness of this disease, at least in my case, is that it slows the time it takes for me to process information substantially. The short-term memory problems and inability to concentrate don't help.

But members of the CFIDS Association were not the only "stakeholders" who phoned in, as this wonderful summary from Hillary Johnson, who wrote the book, Osler's Web, chronicling the history of ME/CFS, so poignantly details.

As it turned out, the all-afternoon call-in fest was remarkable in myriad ways. I hadn’t expected to be so profoundly affected by it.

In my long memory, it was the first time I have seen agency staff leave themselves quite so vulnerable. There was no filter between government staff and the public, some members of whom arrived in person to participate in the four hour session in Auditorium B2 of the CDC’s Global Communications Center. One couple flew all the way from Texas to make their brief comments, for instance; the wife, ill, the husband, healthy.

I cannot possibly do justice to her review so just go, go read. And grab a tissue on your way over because you'll need it.

In another plug for Twitter, Marly Silverman of P.A.N.D.O.R.A tweeted the conference so that those of us who were, say, not awake for the conference (like me) or otherwise engaged could read her real-time description of what was going on. You can go to her Twitter profile and read her tweets.

I don't know if the serious verbal lashing the CDC received on Monday will do anything to change its approach to ME/CFS. And the passion unleashed in the teleconference would be great to also unleash upon the National Institute for Health where the big research bucks are but CFS is among in the five least-funded diseases. But just maybe this will be a chance for ME/CFS patients (myself included) to push through the apathy that has befallen our community in recent years and fight for the research and treatment we so desperately need.

Two things you can do with little effort:

• Sign Tom Kindlon's petition asking the CDC to dump its ridiculous "Emperical Definition." The only tiny bit of criticism I have with regard to the petition is that I would like such a petition to ask specifically that the Canadian Consensus Document replace the fairly universally despised Emerical Definition. But dumping the ED is imparitive as it's a contagion that could potentially infect more ME/CFS research. Think of it as the research equivelent of the swine flu...
  

• Sign up for the Blue Ribbon campaign to raise awareness of ME/CFS, particularly on May 12, ME/CFS Awareness Day.

UPDATE: I forgot to add a letter that Craig Maupin sent to the CDC with his assessment of their CFS program, along with detailed suggestions for improvement. And patient and advocate Mary Schweitzer, as always, gave her articulate and candid appraisal of CDC policy on ME/CFS. There are a handful of other reviews and letters floating around the interwebs as well. The listserve at Co-Cure is a great place to read them all.

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