(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning.)
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, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.
Now imagine having jet lag every day.
Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.
Now imagine that burning pain for years without end.
Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.
If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.
You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.
You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.
Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.
When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.
When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.
At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).
While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?
$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).
This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...
You would want someone to help you if you had this disease, wouldn’t you?
Thank you for taking a moment to imagine what my life is like.
Sincerely,
Michelle Strausbaugh
(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)
(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)
Tuesday, November 08, 2011
Saturday, October 30, 2010
How sexism gave men a "woman's disease"
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."
Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.
So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.
If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.
Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.
__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.
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 is emasculating.
Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.
So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.
If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.
Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.
__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.
Sunday, October 10, 2010
"All you have is CFS"
When Mary Schweitzer went to her local hospital for an infusion of a drug her doctor had prescribed for her, this is what she was told:
All you have is CFS.
A part of me really wants to punch the guy. But then, how would he know CFS is a potentially fatal, multi-systemic disease that, like AIDS and cancer, damages the immune system? He didn't learn about it at medical school. If he went to the CDC website, it lists "professional counseling" as it's top treatment option. And why would he not believe the CDC?
Head. Table. Bang.
“I’m sorry,” the doctor said, “we can’t give you this. It’s a strong drug, and all you have is CFS.”
But I have cytomegalovirus, and Vistide is approved for cytomegalovirus.
“We know. And if you had something serious, like AIDS, or were on chemo from cancer, we would give it to you. But all you have is CFS.”
But you told my specialist you would administer it to me.
“Yes, but we hadn’t seen your files yet. We didn’t know you have CFS.”
All you have is CFS.
A part of me really wants to punch the guy. But then, how would he know CFS is a potentially fatal, multi-systemic disease that, like AIDS and cancer, damages the immune system? He didn't learn about it at medical school. If he went to the CDC website, it lists "professional counseling" as it's top treatment option. And why would he not believe the CDC?
Head. Table. Bang.
Sunday, August 29, 2010
"When the body is rendered useless..."
From The Sound Of A Wild Snail Eating, as featured on NPR's Weekend Edition. The quote is too long for Twitter or Facebook, but so lovely I just had to post it somewhere. So relate to the mind running "like a bloodhound" or being "flooded with storms of thought, unspeakable sadness, and intolerable loss" as well as the way time is both painstakingly slow and instantaneous at the same time. The discussion at NPR also reminded me of my desire for a terrarium. Some connection to the forest that I miss so much.
When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive. Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss.
Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.
Tuesday, August 24, 2010
Did Alter alter much?
No energy for a thoughtful, analytical post. But here are a few thoughts about yesterday's publication of the long-awaited paper from Harvey Alter and company (the paper that I mentioned had been withheld in my last post), as well as the media coverage which followed:
1. This was a much smaller study than I was expecting. It was only 37 patients and 40 controls. May explain why Big Pharma still sounds so tentative, despite the accompanying commentary [note: PDF] that suggested clinical trials of anti-retrovirals for ME/CFS patients would be appropriate to help answer the question of causation.
2. I was surprised that the angle journalists took (perhaps based on the spin from tele-news conference & CFIDS Association) was "new hope for CFS patients" rather than "11 million people might have a leukemia-causing retrovirus and it's tainted the blood supply!" I would have thought the later would have sold more papers, but that's just me.
3. What I really appreciated about this paper was that it took the whole XMRV discussion beyond "she found it; he didn't" to a whole new level: we might be looking for a family mouse-derived retroviruses. This is what good science does. What has been so frustrating about the research thus far is that because they hadn't been actually replicating the original Lombardi paper in Science, they were simply showing us how NOT to find the virus. It really wasn't moving us forward but it was wasting a lot of time.
4. It sounds like Alter is saying that XMRV is one variant of a family mouse-derived leukemia viruses. Could the DeFreitas virus be among them?
Just a few thoughts after yesterday. Off to rest. Totally crashing after the excitement.
Okay -- just one more question after talking to my boyfriend in the UK, why are papers in the UK not reporting on the Alter paper? Have they all decided that the matter is settled from the earlier negative studies?
1. This was a much smaller study than I was expecting. It was only 37 patients and 40 controls. May explain why Big Pharma still sounds so tentative, despite the accompanying commentary [note: PDF] that suggested clinical trials of anti-retrovirals for ME/CFS patients would be appropriate to help answer the question of causation.
2. I was surprised that the angle journalists took (perhaps based on the spin from tele-news conference & CFIDS Association) was "new hope for CFS patients" rather than "11 million people might have a leukemia-causing retrovirus and it's tainted the blood supply!" I would have thought the later would have sold more papers, but that's just me.
3. What I really appreciated about this paper was that it took the whole XMRV discussion beyond "she found it; he didn't" to a whole new level: we might be looking for a family mouse-derived retroviruses. This is what good science does. What has been so frustrating about the research thus far is that because they hadn't been actually replicating the original Lombardi paper in Science, they were simply showing us how NOT to find the virus. It really wasn't moving us forward but it was wasting a lot of time.
4. It sounds like Alter is saying that XMRV is one variant of a family mouse-derived leukemia viruses. Could the DeFreitas virus be among them?
Just a few thoughts after yesterday. Off to rest. Totally crashing after the excitement.
Okay -- just one more question after talking to my boyfriend in the UK, why are papers in the UK not reporting on the Alter paper? Have they all decided that the matter is settled from the earlier negative studies?
Wednesday, July 21, 2010
Pain and privation
Being sick sucks because of the usual stuff like pain and weakness. But then there are the bureaucratic aspects of being sick that also suck -- and suck hard.
The clinic director at my doctor’s office has changed the narcotic pain management policy, capping the amount of narcotics each person can take at 180mg of morphine a day or equivalent. Since I take 180mg of morphine a day PLUS 60mg of hydrocodone (Vicodin), this will mean a significant decrease in the amount of pain medication I will be prescribed. Indeed I'm already feeling the affect of this new policy with a 15mg/day reduction in my Vicodin. It's only a small amount so I'm not suffering terribly, but it's enough so that I'm not sleeping as well. Which means that I'm back to sleeping over 12 hours a day but waking up feeling like I haven't slept at all.
I only found out about the new policy when Nurse K., who does my anticoagulation therapy, was reviewing my medications during my last INR check and we discovered a discrepancy between how much Vicodin I was taking (as that’s been the dose I’ve taken for well over a year now) and how much had been prescribed when Dr. H. wrote the refill a few days earlier. After consulting with Dr. H., she told me about the policy change and explained that he is now tapering me off the Vicodin. Of course, my pain level has not changed as a result of the new policy (hell if it worked that way, I’d have them change a few more policies!) and I’m at a loss to understand why they would fuck with an established pain management plan. Hopefully when I see Dr. H. on Friday there will be some way of asking for a review of my case so I can go back to the level of pain meds I was on in June.
A week after learning about the change in pain policy, I got a letter telling me my home care worker benefits are being cut because of the massive hole in the state budget. While I imagine my mom and adopted dad will be able to work out some plan to get the laundry done and clean the house (despite the fact that Mom works three jobs and Dad spends 8 hours a day doing heavy construction work in addition to multiple hours commuting), this does present a significant problem when it comes to eating and bathing. I’ve been getting assistance with meals through either a home care worker or Meals on Wheels (which is also being cut) for over five years and I’m much sicker now than I was five years ago. Considering that it often takes me well over 20 minutes just to make a bowl of cereal when I wake up in the afternoon, cooking on a regular basis is not particularly feasible.
So I've called my state representative and state senator. Talked with my case worker. Started writing an op/ed piece for my local newspaper. Considered seeing if friends in the local area might be willing to participate in a "casserole circle" and commit to providing one casserole a month (because, you know, it's not like they don't have busy lives and struggle to feed themselves healthy food on a regular basis too! ::end sarcasm::). And, of course, worried. About getting sicker. About being in more pain. About being even more isolated than I already am.
And then there was the whole XMRV saga, which has hit surreal levels over the last month. In mid-June there was a leak that Harvey Alter (doesn't he look like a nice man in his Wiki pic?), a scientist at the NIH, had replicated the Lombardi paper, finding XMRV in 80% of CFS patients. But just as CFS patients began to celebrate (yay, we do have a retrovirus!), we suddenly heard that the Department of Health and Human Services was withholding Alter's paper (which was already in galley proofs!), along with a CDC study that didn't find XMRV. When the CDC study was then published two days later, it sent conspiracy theorists into a frenzy. Especially when even the uber-conservative CFIDS Association said the CDC study was "a study designed to not detect XMRV using a hodge-podge sample set." Now the word is that Alter's paper is due to be published in a few weeks and that even after completing the additional testing requested, he found the same results. But until the paper is published, no one is really happy.
Normally the CDC finding wouldn't have bothered me. It was certainly the result we all expected in the ME/CFS community. I mean, one of the main authors said he didn't think they would find anything before they even started their study (scientific detachment at its finest!). And new research is always going to be up and down. Different groups are going to find different results as everyone tries to hammer out the scientific consensus.
But with everything else going on, it was hard. Is this what the rest of my life is going to be like? One bureaucrat deciding how much I will suffer, another dickhead at the CDC deciding how valid my suffering is, and the voters/bureaucrats of my state deciding whether they will provide someone to help me bathe and eat?
UPDATE: After seeing a few reports on Google News, I called my case worker today who confirmed that yes, it's looking very likely that tomorrow (Thursday) the state Emergency Board will be restoring the home care workers for Medicaid patients like me, along with a few other important programs (Meals on Wheels, Oregon Project Independence - both programs I used to be in) that were on the chopping block. "It sounds like a done deal...but I can't promise anything for sure. You'll probably get the paperwork before I do." So I'm breathing a bit easier tonight.
Other social services, however, were not so fortunate. Oregon Public Broadcasting radio news is reporting that cuts in funding for homeless shelters will continue as planned. My adopted dad spent much of the last six years homeless due to alcoholism (something I didn't blog about as I couldn't bear subjecting him to the moralistic ignorance of strangers) and it gave me a far too personal view of the special hell that is homelessness and addiction in America. While he just celebrated his one year sobriety date on the 11th and has a place to stay along with a job, I always know he's just one drink, injury or other chronic illness from the streets (seriously, I still get a slight nervous feeling when he doesn't call me back right away). Oregon already has the highest rate of homelessness per capita in the country and ranks 45th in funding for drug and alcohol treatment.
I tear up every time I think about. Like a sort of survivors guilt. If you're a single man, there have been almost no shelter options in Portland for years (it's literally a lottery for the few beds available). These new cuts are hitting families. Children. Sigh. Don't even get me started on the class issues going on here...
So, you know, very bittersweet.
The clinic director at my doctor’s office has changed the narcotic pain management policy, capping the amount of narcotics each person can take at 180mg of morphine a day or equivalent. Since I take 180mg of morphine a day PLUS 60mg of hydrocodone (Vicodin), this will mean a significant decrease in the amount of pain medication I will be prescribed. Indeed I'm already feeling the affect of this new policy with a 15mg/day reduction in my Vicodin. It's only a small amount so I'm not suffering terribly, but it's enough so that I'm not sleeping as well. Which means that I'm back to sleeping over 12 hours a day but waking up feeling like I haven't slept at all.
I only found out about the new policy when Nurse K., who does my anticoagulation therapy, was reviewing my medications during my last INR check and we discovered a discrepancy between how much Vicodin I was taking (as that’s been the dose I’ve taken for well over a year now) and how much had been prescribed when Dr. H. wrote the refill a few days earlier. After consulting with Dr. H., she told me about the policy change and explained that he is now tapering me off the Vicodin. Of course, my pain level has not changed as a result of the new policy (hell if it worked that way, I’d have them change a few more policies!) and I’m at a loss to understand why they would fuck with an established pain management plan. Hopefully when I see Dr. H. on Friday there will be some way of asking for a review of my case so I can go back to the level of pain meds I was on in June.
A week after learning about the change in pain policy, I got a letter telling me my home care worker benefits are being cut because of the massive hole in the state budget. While I imagine my mom and adopted dad will be able to work out some plan to get the laundry done and clean the house (despite the fact that Mom works three jobs and Dad spends 8 hours a day doing heavy construction work in addition to multiple hours commuting), this does present a significant problem when it comes to eating and bathing. I’ve been getting assistance with meals through either a home care worker or Meals on Wheels (which is also being cut) for over five years and I’m much sicker now than I was five years ago. Considering that it often takes me well over 20 minutes just to make a bowl of cereal when I wake up in the afternoon, cooking on a regular basis is not particularly feasible.
So I've called my state representative and state senator. Talked with my case worker. Started writing an op/ed piece for my local newspaper. Considered seeing if friends in the local area might be willing to participate in a "casserole circle" and commit to providing one casserole a month (because, you know, it's not like they don't have busy lives and struggle to feed themselves healthy food on a regular basis too! ::end sarcasm::). And, of course, worried. About getting sicker. About being in more pain. About being even more isolated than I already am.
And then there was the whole XMRV saga, which has hit surreal levels over the last month. In mid-June there was a leak that Harvey Alter (doesn't he look like a nice man in his Wiki pic?), a scientist at the NIH, had replicated the Lombardi paper, finding XMRV in 80% of CFS patients. But just as CFS patients began to celebrate (yay, we do have a retrovirus!), we suddenly heard that the Department of Health and Human Services was withholding Alter's paper (which was already in galley proofs!), along with a CDC study that didn't find XMRV. When the CDC study was then published two days later, it sent conspiracy theorists into a frenzy. Especially when even the uber-conservative CFIDS Association said the CDC study was "a study designed to not detect XMRV using a hodge-podge sample set." Now the word is that Alter's paper is due to be published in a few weeks and that even after completing the additional testing requested, he found the same results. But until the paper is published, no one is really happy.
Normally the CDC finding wouldn't have bothered me. It was certainly the result we all expected in the ME/CFS community. I mean, one of the main authors said he didn't think they would find anything before they even started their study (scientific detachment at its finest!). And new research is always going to be up and down. Different groups are going to find different results as everyone tries to hammer out the scientific consensus.
But with everything else going on, it was hard. Is this what the rest of my life is going to be like? One bureaucrat deciding how much I will suffer, another dickhead at the CDC deciding how valid my suffering is, and the voters/bureaucrats of my state deciding whether they will provide someone to help me bathe and eat?
oOo
UPDATE: After seeing a few reports on Google News, I called my case worker today who confirmed that yes, it's looking very likely that tomorrow (Thursday) the state Emergency Board will be restoring the home care workers for Medicaid patients like me, along with a few other important programs (Meals on Wheels, Oregon Project Independence - both programs I used to be in) that were on the chopping block. "It sounds like a done deal...but I can't promise anything for sure. You'll probably get the paperwork before I do." So I'm breathing a bit easier tonight.
Other social services, however, were not so fortunate. Oregon Public Broadcasting radio news is reporting that cuts in funding for homeless shelters will continue as planned. My adopted dad spent much of the last six years homeless due to alcoholism (something I didn't blog about as I couldn't bear subjecting him to the moralistic ignorance of strangers) and it gave me a far too personal view of the special hell that is homelessness and addiction in America. While he just celebrated his one year sobriety date on the 11th and has a place to stay along with a job, I always know he's just one drink, injury or other chronic illness from the streets (seriously, I still get a slight nervous feeling when he doesn't call me back right away). Oregon already has the highest rate of homelessness per capita in the country and ranks 45th in funding for drug and alcohol treatment.
I tear up every time I think about. Like a sort of survivors guilt. If you're a single man, there have been almost no shelter options in Portland for years (it's literally a lottery for the few beds available). These new cuts are hitting families. Children. Sigh. Don't even get me started on the class issues going on here...
So, you know, very bittersweet.
Wednesday, May 12, 2010
Out of sight, out of mind
ME/CFS Awareness Day: "This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation."
The most depressing moment of my day is when I wake up. I turn over, look at the clock, and see that it’s 1:30 in the afternoon. Despite having been asleep for 12 or more hours, I feel like I’ve barely slept at all. I lay back down for a few more winks like a thirsty man in the desert shaking the last few drops out of his canteen. A half hour to an hour later I finally acknowledge there is no more sleep to be had and drag my weak, achy body out of bed.
After taking my morning meds I head to the bathroom. Once I’ve finished taking a puff of my inhaler, brush my teeth and wash my face, it’s time to lay down again because I’m already starting to feel a bit spent.
By the time I get up to make myself some breakfast, it’s 3:30 pm. I walk into the kitchen, but forget what I’m doing by the time I get there. I pause and within 15 seconds or so, remember I’m supposed to make breakfast. But I’m not sure what needs to be done first to make breakfast. I pause again to ponder the chronology of making breakfast and while doing so I get distracted -- the plants need to be watered, a can on the counter needs to be recycled, [insert other random distraction of your choice]. Once I’m done with that distraction, I’m back to square one, namely, why did I come into the kitchen? Oh right, to make breakfast. So, what do I need to do to make breakfast? Lather, rinse, repeat.
If I’m good, I rest after breakfast. Most of the time I’m not. I push myself through the constant miasma of exhaustion and open my laptop to check my email and the day’s news.
Soon my boyfriend will call -- the highlight of my day. He lives in the UK and since I am too ill to get on a plane and the US government will only allow so many visits a year, this is how we have a relationship. In addition to the tremendous barriers to immigration our government has erected, I -- like millions of others on SSI -- would lose my disability benefits if I married. Using a headset as I cannot hold the receiver for more than a few minutes, we chat for an hour or so. After saying our good-byes, it’s time to rest for an hour - or three.
Dinner is often a repeat of breakfast, except longer. After a hard day of sleeping and disorientation my bewilderment relocates to the bathroom as I get ready for bed. However, even though I’m ready to crash by midnight I won’t be able to sleep for another hour or two -- despite the many narcotics and sleep medicines.
This is the daily life that awaits you should you ever get ME/CFS -- along with the burning pain, constant flu-like state, and never-ending pseudo-hangover. Oh and don’t forget the ridicule, isolation, and constant battles with insurance companies and/or Social Security to prove that you really are sick. Losing your friends and family because they can’t understand why you just don’t get your act together. Having doctors tell you that you just need to exercise and/or see a psychiatrist. Being forgotten about because nobody can see the housebound. Left in bed to rot away the rest of your life because your government can’t be bothered to spend money figuring out what’s wrong with you and the little bit of money they do spend is on studies about how you surely must have been abused as a child, thus developing poor coping skills to deal with stress. Or if you’re in the UK or the Netherlands, they spend it on clinics to brainwash you about your “false illness beliefs”.
And yes, I say you because it could very well be you. There has long been evidence that this is an infectious disease and the recent research linking ME/CFS to the third human retrovirus, XMRV, (the other two are HIV and HTLV) makes this all the more likely. Indeed you might even have it already since as many as 3-4% of the healthy population may be carrying the virus, making you just one flu-bug away from a lifetime of spending a half hour each day trying to figure out how to make breakfast (and a lifetime that might well be cut short by cancer at that). The governments of Canada and New Zealand decided recently to ban anybody who has ever been diagnosed with ME/CFS from donating blood, lest the spread of XMRV continue unchecked (Australia is apparently soon to follow). The US, UK, and other countries have not yet chosen to protect their populations. As a fellow ME/CFS patient asked the other day, “Which country do you want to be in for your next car accident requiring a blood transfusion?”
Today is ME/CFS Awareness Day. It was intended to make people aware of the suffering of those of us who have had the bad luck to get this disease and to ask for your help in getting government attention and research funding. But this day is also to make you aware that you too could get this disease and lose much of the life you hold dear. It’s to make you aware that insurance companies have used a small group of psychiatrists (who have lined their pockets with insurance money) to make sure that if you do get this disease, you will be labeled “depressed” and refused the benefits you need to live on (and which you were paying for while you were working). And it’s to make you aware that for more than 25 years your government has not been particularly interested in protecting you and those you love from this disease.
This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation. Your government needs to know it should be spending your tax dollars to protect you from a cancer-causing neuro-immune disease. Yes, we patients need your help. We are desperately ill and need proper, effective treatment. But please realize that by helping us, you may well be helping yourself.
The most depressing moment of my day is when I wake up. I turn over, look at the clock, and see that it’s 1:30 in the afternoon. Despite having been asleep for 12 or more hours, I feel like I’ve barely slept at all. I lay back down for a few more winks like a thirsty man in the desert shaking the last few drops out of his canteen. A half hour to an hour later I finally acknowledge there is no more sleep to be had and drag my weak, achy body out of bed.
After taking my morning meds I head to the bathroom. Once I’ve finished taking a puff of my inhaler, brush my teeth and wash my face, it’s time to lay down again because I’m already starting to feel a bit spent.
By the time I get up to make myself some breakfast, it’s 3:30 pm. I walk into the kitchen, but forget what I’m doing by the time I get there. I pause and within 15 seconds or so, remember I’m supposed to make breakfast. But I’m not sure what needs to be done first to make breakfast. I pause again to ponder the chronology of making breakfast and while doing so I get distracted -- the plants need to be watered, a can on the counter needs to be recycled, [insert other random distraction of your choice]. Once I’m done with that distraction, I’m back to square one, namely, why did I come into the kitchen? Oh right, to make breakfast. So, what do I need to do to make breakfast? Lather, rinse, repeat.
If I’m good, I rest after breakfast. Most of the time I’m not. I push myself through the constant miasma of exhaustion and open my laptop to check my email and the day’s news.
Soon my boyfriend will call -- the highlight of my day. He lives in the UK and since I am too ill to get on a plane and the US government will only allow so many visits a year, this is how we have a relationship. In addition to the tremendous barriers to immigration our government has erected, I -- like millions of others on SSI -- would lose my disability benefits if I married. Using a headset as I cannot hold the receiver for more than a few minutes, we chat for an hour or so. After saying our good-byes, it’s time to rest for an hour - or three.
Dinner is often a repeat of breakfast, except longer. After a hard day of sleeping and disorientation my bewilderment relocates to the bathroom as I get ready for bed. However, even though I’m ready to crash by midnight I won’t be able to sleep for another hour or two -- despite the many narcotics and sleep medicines.
This is the daily life that awaits you should you ever get ME/CFS -- along with the burning pain, constant flu-like state, and never-ending pseudo-hangover. Oh and don’t forget the ridicule, isolation, and constant battles with insurance companies and/or Social Security to prove that you really are sick. Losing your friends and family because they can’t understand why you just don’t get your act together. Having doctors tell you that you just need to exercise and/or see a psychiatrist. Being forgotten about because nobody can see the housebound. Left in bed to rot away the rest of your life because your government can’t be bothered to spend money figuring out what’s wrong with you and the little bit of money they do spend is on studies about how you surely must have been abused as a child, thus developing poor coping skills to deal with stress. Or if you’re in the UK or the Netherlands, they spend it on clinics to brainwash you about your “false illness beliefs”.
And yes, I say you because it could very well be you. There has long been evidence that this is an infectious disease and the recent research linking ME/CFS to the third human retrovirus, XMRV, (the other two are HIV and HTLV) makes this all the more likely. Indeed you might even have it already since as many as 3-4% of the healthy population may be carrying the virus, making you just one flu-bug away from a lifetime of spending a half hour each day trying to figure out how to make breakfast (and a lifetime that might well be cut short by cancer at that). The governments of Canada and New Zealand decided recently to ban anybody who has ever been diagnosed with ME/CFS from donating blood, lest the spread of XMRV continue unchecked (Australia is apparently soon to follow). The US, UK, and other countries have not yet chosen to protect their populations. As a fellow ME/CFS patient asked the other day, “Which country do you want to be in for your next car accident requiring a blood transfusion?”
Today is ME/CFS Awareness Day. It was intended to make people aware of the suffering of those of us who have had the bad luck to get this disease and to ask for your help in getting government attention and research funding. But this day is also to make you aware that you too could get this disease and lose much of the life you hold dear. It’s to make you aware that insurance companies have used a small group of psychiatrists (who have lined their pockets with insurance money) to make sure that if you do get this disease, you will be labeled “depressed” and refused the benefits you need to live on (and which you were paying for while you were working). And it’s to make you aware that for more than 25 years your government has not been particularly interested in protecting you and those you love from this disease.
This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation. Your government needs to know it should be spending your tax dollars to protect you from a cancer-causing neuro-immune disease. Yes, we patients need your help. We are desperately ill and need proper, effective treatment. But please realize that by helping us, you may well be helping yourself.
Monday, March 22, 2010
Behind the Window: A Room with a View
So now that the stomach flu that had me throwing up so much I broke a bunch of blood vessels in my neck is over, and whooping cough (or mycoplasma pneumonia - my doctor wasn't sure but it responded to the second antibiotic he put me on) is over, and moving into my new ginormous one bedroom, brilliant-view apartment (but not the unpacking) is over, and the crashing from the Prednisone I was on for the chest pain during the whooping cough/mycoplasma pneumonia is over, and the nearly two-month battle with Qwest regarding my transfer of service is (hopefully) over, it's time for me to do some blogging already.
While I hope to start doing some proper writing soon, I thought I'd start off sharing a few pictures of that view from my bed. Yes, you read that right -- my bed. With my new apartment, I've got a comfy new (i.e. pre-owned) adjustable bed, so I can sit/lay in ease and watch the world outside my window. Note, however, that my Canon died several months back and all of the pictures that follow were taken with my cell phone -- with mixed results.
The view at sunset while actually laying down in bed. You can see Mount Saint Helens and the Fremont Bridge (my favorite bridge in Portland!) through the railing of my balcony. Though as I've simply moved to a new, roomier cell, the bars seem appropriate.
The view on a sunny day. The cell phone really can't do it justice as I can actually see the tip of Mt. Rainier just behind Mt. Saint Helens. To the east I also get the tip of Mt. Adams.
A view of Northwest Portland on cloudy day.
I took this one this afternoon. It was the most amazing rainbow I'd ever seen. While this turned into a very nice picture, it just wasn't able to capture how truly stunning this rainbow was. Not only was it so panoramic, but it was so bright. I could actually see every last color in it.
There is definitely far more view for the imagination, as Anne Shirley would put it, in this apartment. Though it can taunt me a bit with all the shops and restaurants below, reminding me of what I cannot still do -- leave the damn apartment. The few times I've given into temptation and ventured forth, I have had to pay the painful, icky price that ME/CFS always demands. So for the time being I'll stick to the patio, like I have the last three mornings during breakfast. The view still takes my breath a bit whenever I see it. And when I get a view like today, with the rainbow and the cloudburst over Gresham that followed, I remember that illness, at least, forces me to simply sit and watch. And because of that, I see a lot that I would have missed otherwise.
While I hope to start doing some proper writing soon, I thought I'd start off sharing a few pictures of that view from my bed. Yes, you read that right -- my bed. With my new apartment, I've got a comfy new (i.e. pre-owned) adjustable bed, so I can sit/lay in ease and watch the world outside my window. Note, however, that my Canon died several months back and all of the pictures that follow were taken with my cell phone -- with mixed results.
The view at sunset while actually laying down in bed. You can see Mount Saint Helens and the Fremont Bridge (my favorite bridge in Portland!) through the railing of my balcony. Though as I've simply moved to a new, roomier cell, the bars seem appropriate.
The view on a sunny day. The cell phone really can't do it justice as I can actually see the tip of Mt. Rainier just behind Mt. Saint Helens. To the east I also get the tip of Mt. Adams.
A view of Northwest Portland on cloudy day.
I took this one this afternoon. It was the most amazing rainbow I'd ever seen. While this turned into a very nice picture, it just wasn't able to capture how truly stunning this rainbow was. Not only was it so panoramic, but it was so bright. I could actually see every last color in it.
There is definitely far more view for the imagination, as Anne Shirley would put it, in this apartment. Though it can taunt me a bit with all the shops and restaurants below, reminding me of what I cannot still do -- leave the damn apartment. The few times I've given into temptation and ventured forth, I have had to pay the painful, icky price that ME/CFS always demands. So for the time being I'll stick to the patio, like I have the last three mornings during breakfast. The view still takes my breath a bit whenever I see it. And when I get a view like today, with the rainbow and the cloudburst over Gresham that followed, I remember that illness, at least, forces me to simply sit and watch. And because of that, I see a lot that I would have missed otherwise.
Thursday, December 17, 2009
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.
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.
Thursday, December 10, 2009
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.
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.
Wednesday, November 11, 2009
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.
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.
Saturday, October 17, 2009
"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.
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.*
____________
*Hillary Johnson, Osler's Web, New York: Penguin Books, 1996, p.364-365.
"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.*
____________
*Hillary Johnson, Osler's Web, New York: Penguin Books, 1996, p.364-365.
Saturday, October 10, 2009
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 two other known human retroviruses, HIV, which causes AIDS, HTLV, which causes types of leukemia and lymphoma. That retroviruses integrate themselves into the host's genome by inserting itself into DNA, 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:
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.
_________________________
*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.
"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 two other known human retroviruses, HIV, which causes AIDS, HTLV, which causes types of leukemia and lymphoma. That retroviruses integrate themselves into the host's genome by inserting itself into DNA, 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.
_________________________
*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.
Wednesday, September 23, 2009
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.
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.
Subscribe to:
Posts (Atom)