Yom Kippur is made up? I knew nobody was atoning for all the shit they did to me.
CFS is a disease that disproportionately affects women, along with similar conditions like fibromylagia and migraines. All of these conditions, along with almost all women's reproductive ailments (e.g. endometriosis, PCOS), have been woefully understudied, in large part because they've been written off as women being difficult/delicate. As I said in a different thread, the stunning lack of interest in taking women's health beyond breast cancer seriously is one of the most glaring areas of sexism today.
And if the people at the NIH who decide on funding are Jewish, they can't even atone for their sexism.
2: and cervical cancer? Screening for that has been kind of a big effort.
And mental illness is (with the exception of depression) disproportionately a male problem, which must explain why treatment for mental illness is such a model of medical practice.
My Mom has CFS. She can only really do about two or maybe three hours of anything a day and then needs to lie down. It's horribly debilitating but she manages to get a lot done anyway.
Four or five of the women in my online breast cancer support group were initially diagnosed with DCIS, chose to have bilateral mastectomies, and turned out to have invasive breast cancers that imaging had missed. While that's only anecdotal, I suspect that women with DCIS hear stories like that, and, especially if they know anyone who has died from breast cancer, aren't willing to take the risk.
Sounds like NIH needs to spend way more money on hay fever. $5 million a year is like one Benadryl for every sufferer. I understand maybe they can't be spending at the Zyrtec level here, but they could at least be shelling out Claratin money.
I think hay fever might be something the private sector can handle. Also, plenty of research into the immune system and the like is probably both done by the NIH and at least of some use to somebody trying to develop a cure for hay fever.
9: Could still require more basic research than is cost-effective, and not just immune system research generally.
We went camping this weekend. A little girl got bit by a water mocassin and was rushed to the hospital. (She'd been playing with my friend's kids. They were literally a foot or two away.) She survived.
The friend told us that she'd researched coral snake antidotes one time, after finding a few on her property. Apparently no one makes coral snake antidotes anymore, because people aren't bit very often, even though it's still pretty deadly when they are bit.
Is this one of those things where that's the real post? Because that sounds very much like a bigger deal.
I've finally starting to try to address my fatigue problems. So far found low B12 and sleep apnea. Hoping fixing those will make me a new person.
I think it's terrible that so many women have mammograms harmed.
No, maybe it should have been! I mentioned it on LiveJournal.
13: A facebook friend is documenting her husband's daily activities after he started using a CPAP last week, and the change has been impressive and close to immediate. I hope you're able to get the relief you need!
My dad says a CPAP works great. Also, we've switched to talked about men's health and snakes. Just like the NIH.
If it helps, RWM and I refer to my fatigue and IBS problems as my "lady diseases."
Nothing is more masculine that vigorous pooping.
I think hay fever might be something the private sector can handle.
Not once my plan for nationalization of the pharmaceutical industry goes through.
Not living near corn fields has really done wonders for my hay fever.
CPAP is hard. I have one and didn't use it much, and it was hard to clean. When it works well, it's great, but I ripped it off a lot.
The doctor I had at the time would only use one company, and they were a pain in the ass.
The insurance at my new job steers me to different, more expensive hospitals for my specialty care, so I'm switching sleep docs and want to readdress it. I want to see if I can get a machine which works better. The old one was rented and then sold to me without asking me, so I couldn't switch it.
I'm hoping to get a doctor who will go over the data with me.
On mammograms -
The hospital I work at now has a target for its primary care physicians (based, I believe, on AHRQ guidelines) to have their patients screened every other year between aged 50 and 74. The radiologists still mail out letters to women when they turn 40 telling them that they should get an annual mammogram.
What's your sense of the recommendations on the ground? What are your doctors or the doctors of your friends and acquaintances saying?
I think all discussion of what NIH spends on a particular syndrome or collection of symptoms is a cheap shot. A lot of NIH's budget is based on what people have ideas about, a question they can answer. Sometimes focus on a disease can jumpstart those ideas (and a number of patient advocacy groups have helped there).
But a big driver of whether money will be spent n CFS (or FM or whatever we're calling it) is whether someone has an idea about a question -- is CFS about B12, energy metabolism? an autoimmune dysfunction? a neurological dysfunction? I'm biased by my own scientific interests, but several of the descriptions of CFS (Laura Hillenbrand's, comes to mind, because it is particularly vivid) seem like a neurological dysfunction. Her description of the onset of her disease sounds like it might have been a stroke to me. So, research has to be motivated by a hypothesis about a root cause.
For something relatively uncommon, you do need a hypothesis or something. But for very common conditions, they will spend many millions on very broad lines of inquiry (e.g. Let's follow a bunch of people with the disease or likely to get the disease and see what happens).
Unfortunately, chronic ankle pain is rarely studied.
I felt inappropriately pressured into a surgical biopsy for suspected dcis, and sure enough that's all they found. I put up a hard fight against surgery. At the first sign of resistance every single medical professional launched shamelessly into "if you were my mother/sister/wife/daughter ..." I found this patronizing (matronizing?) and beside the point when what I was specifically asking for was an intelligent discussion of the reports I found that this was all an overreaction.
mother/sister/wife/daughter
Even we never got to the point where any woman was more than three of the four.
I apparently have sleep apnea but I dread getting a CPAP machine. Having something on my face when I sleep sounds like a recipe for nightmares. Also I gather that one side effect of the machines can be lots of farting due to swallowing air. Whether or not this is a negative depends on the person I guess.
CFS seems to be like celiac disease in one respect. There are a lot of people who claim to have gluten intolerance who don't have "true celiac" disease, and I don't think it's helpful to lump them all together.
My aunt spent years talking about her chronic fatigue syndrome, but I think that for her it was largely psychological. For a lot of reasons, it was convenient for her to be disabled, to be unable to take care of other people and to need her husband to take care of her, and because her sister is severely mentally ill, the idea of having a mental health problem -as opposed to a physical one- scared her.
Having said that, I'm know that there are people who have a really serious problem that's not mainly psychological (though all illness has some kind of psychological aspect to it). I wish that they could find a better way to break out the population to study. I've heard that Alzheimer's drug research faces a similar problem, and it may explain why the treatments have not been shown to be effective. You need to be sure that the dementia of the population you are studying is actually caused by Alzheimer's, and in the past they had a lot of trouble separating out the patients whose dementia wasn't Alzheimer's.
28: Less invasive treatments would really be a boon to a lot of people.
There's probably a whole different set of problems to wearing a CPAP when you aren't in your 80s, but it's not really invasive as far as modern medicine goes.
That's a misstatement. They aren't invasive, because it's not surgery, but they're a total pain in the ass.
My special's CPAP has been life-changing for him (and not incidentally, me). He was previously awakening roughly every minute. With the CPAP, he's:
- Sleeping for much longer periods of time without jerking awake
- Getting better rest when he does sleep
- Seen a massive drop in sinus infections (which he used to get like clockwork)
- More energetic during the day
When he first started using it, he also went through an incredible fertile creative period (ideas, inventions, cogent observations) which we both jokingly attributed to the CPAP. I don't actually think there's a direct-line cause, but good sleep is pretty darn important.
Having seen such good effects, he's very diligent about using it. The doctor was blown away by how diligent (I think 99% compliance) when he looked at the data.
At the first sign of resistance every single medical professional launched shamelessly into "if you were my mother/sister/wife/daughter ..." I found this patronizing (matronizing?)
It really is a ridiculous formulation. It borders on "I know you are a regular person, but step out of your comfort zone and imagine if you were a woman like these three covert women lurking in your everyday family!"
I was writing 32 before 31 got posted.
Actually, 34 isn't quite right in this case. But a lot of times, "Imagine if it were your sister or mother!" is used that way.
CPAP is the gold standard. Mouthpieces are the silver. But compliance with CPAP is notoriously a challenge.
"if you were my mother/sister/wife/daughter ..."
My senile back surgeon dude used this repeatedly. I found it a very weird persuasion attempt- "look, I would be saying this even if you were someone I actually cared about, and not just some dumb patient! That's how you can tell it's the right advice."
Well, I didn't really discover that he was actually senile until the follow-up visit after the surgery. Then he retired like 6 months later.
You go to run a mini-mental on them before they cut you open.
For laparoscopic surgery, don't worry about it.
I don't think they need to even wash their hands for that.
Eh, I assume muscle memory took care of whatever his regular brain forgot. It wasn't a very complicated back surgery.
Still, if you were his wife/mother/sister/daughter, he'd want you to go to a non-senile doctor.
My grandma had a hip replacement and ended up with one leg 1.5" longer than it used to be. She had a non-senile doctor, but he didn't apparently learn the basic rule: "Measure twice, cut once."
If you weren't his wife/mother/sister/daughter, maybe see if he's single.
Wait. He cut twice and the leg still got 1.5" longer? That's some fancy cutting.
I have sleep problems, which are a real bastard, tbh. I am tired a lot, even allowing for having a toddler, and a stupid commute.
Not apnoea, though. I've been checked for that, and no problems. Instead I have a chronic nasal allergy [like hay fever] to something they can't identify, which means about 80% of the time my nostrils are like the eyes of a needle, and I don't get quite enough air. I also breath noisily at night, but not actual snoring, just like someone breathing with a bad cold. Steroid sprays and histamines help, but the docs are currently advising against surgery, as much of the time, it makes it worse.
If you wound up with your nose 1.5" longer, it might help.
Did they fix it?
For reasons I don't totally understand, fixing it is either not possible or it's going to be complicated enough that she hasn't had it done yet. So for now, we call her Eileen.
She could kill you and nobody would ever convict her.
I say this only because I found it life-changing, but neti pot? I could not breathe through my nose for most of my life in the winters, and then after Stanley talked me into trying a neti pot, I pretty much always can. (But you've probably tried it and it hasn't worked for you. I have vague memories of this being a repeated conversation.
Yep. Lots of stuff about shoving pottery up your nose.
The main thing I remember is to never use untreated pond water in your neti pot.
re: 57
Yeah, I've been advised to use a different flushing method, which is basically a marginally higher tech squeezy neti-pot. I have tried it. The nasal specialist said I had to do it regularly for a long time to get the benefits, and I've been inconsistent.
It also, now and again, gives me the worse headaches ever. Like someone has attacked my forehead with a nail gun. Similar level of pain to when I've broken minor bones. Worse, even.
I need to start doing it more regularly again.
Hey, I've been having some headaches like that! Sudafed was the missing piece in my personal drug cocktail, or else I just got lucky and it stopped hurting so much for no reason. (I was actually going to say that my exhaustion has really subsided since Selah started sleeping through the night more regularly, except their return from Lee's house last night left me totally wiped out. At any rate, I blame the youth of America. But then you had to go and mention the sinus pain and headaches!)
5, where on earth are you getting that? I have a hypothesis that you're ajay, because ajay has said very confused things about gender and psychiatric epidemiology in the past. All of the mood and anxiety disorders are disproportionately suffered by women, with the exception of bipolar disorder and social anxiety disorder (which don't differ between men and women), at least in the U.S. (and I imagine other Western, developed nations, but I'm sure culture has a large effect on psychiatric epidemiology, so in very different cultures, who knows). Substance abuse, ADHD, and autism (which some people would quarrel with calling "mental illness") are disproportionately suffered by men. Schizophrenia is equal. Women have higher rates of eating disorders. Personality disorders differ by the diagnosis.
To really evaluate this claim, we'd have to know rates of mood and anxiety disorders, rates of substance disorders, gender differences in prevalence and rates of comorbidity, and how rates of comorbidity differed by gender (and that's assuming, which I think is fair, that the extremely common mood, anxiety, and substance disorders are swamping the effects of the others). However, on first pass, given a 10.3% lifetime prevalence rate for a substance use disorder (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3144502/), a 15% lifetime prevalence rate of any anxiety disorder (http://www.cdc.gov/mentalhealth/basics/burden.htm), a lifetime prevalence rate for just MDD of 9ish percent (same source as the last, averaging between women and men), which, while admittedly probably highly comorbid with the anxiety disorders is not counting kinds of depression that fall short of MDD, I think we can pronounce this claim false. Women suffer from mental illness at greater rates than men. (I think this is a stupid way to carve things up -- I'm just rebutting an incorrect claim.)
The nailgun headache is a thing, but it clears if you stop and blow your nose. And I completely believe the do it regularly for a long time thing. I did it pretty much daily for a couple of winters, and then I dropped back to only when I'm sniffly for some reason, which is probably less than once a month. But the long period of doing it steadily seems to have changed the baseline dysfunctionality of my nasal/sinus structure.
63: I had similar thoughts but neglected to write out because it looked like work and Wikipedia wasn't giving me a clean cite. So thanks.
I suppose, if you are ajay, that it's possible that in the harder drinking British Isles substance disorder rates are higher, which might pull men into parity with women, although probably not beyond them unless your womenfolk are very relaxed.
I suppose, if you are ajay, that it's possible that in the harder drinking British Isles substance disorder rates are higher, which might pull men into parity with women, although probably not beyond them unless your womenfolk are very relaxed.
Also having only occasionally functional nostrils, flushing with salt water is helpful (although I used a squeeze bulb; it felt more medically). More recently I've found that if I make a really dedicated effort at breathing in through my nose I can maintain a useable airway. I end up swallowing a lot of mucous, but I'm okay with this as that for, it seems to me, much like eating locally grown honey this should help with allergies.
We have a squeeze bulb we used to de-snot the baby. Now that he's older, we just listen to him sniff while periodically trying to get him to blow his nose.
Back in the day, science was allowed to move quickly. Today I'd like to see the IRB submission for feeding a guy four pounds of udder and some candles.
I have had a similar problem to ttaM's and LB's, but thankfully somewhat less severe, since I was a teenager. If I sleep on my back I snore, otherwise mostly not, but my nasal passages are somewhat constricted and clogged more than not.
I've had tests to see what I'm allergic to, and the answer is "slight allergy to grass pollen." For a long time I took any allergy med that I could find to counteract it (anyone remember Seldane?), but none of them worked more than slightly. Steroids helped a bit more but gave me nose bleeds.
I have a strong fear that if I am ever kidnapped and they put duct tape over my mouth to shut me up, I will die.