Jerry Lewis points out that the Ford Foundation gave Jonas Salk $500 million, and 18 months later, he had polio beaten.
Unfortunately, most of the research funds for CFS are raised in $2 and $5 increments from patients; the government allocates a minuscule amount for CFS research, and at least twice, has been found to be diverting that money to research other diseases instead. Even when the study purports to do research into CFS, the patient pool is often filled with people who have depression or some other non-CFS source for their fatigue, and thus provides no information which is useful to those of us who have the original, post-viral type of CFS.
By some estimates, CFS costs the US economy $25 BILLION a year in lost productivity; we don’t get even 1% of that in research funding ... if my math is correct, we get one-quarter of one-tenth of one percent of that from the government. And then the patients get blamed because without research finding a treatment or a cure, we can’t go back to work and are forced to apply for Disability benefits. Most health conditions get worse without proper treatment; in the years that I was begging doctors to read the research and give me the pills that would help, I deteriorated steadily. I’ve been improving since getting the right pills, but I’m still a long way from being well enough to work.
Loving and supportive families are shown on the telethon – where are those where the spouse bailed out, leaving the patient to cope alone? The fact is, three-quarters of marriages affected by chronic illness break up; the ones on the telethon are the minority. Most patients don’t have a wife to fuss over us; if we want dinner, we have to cook it ourselves, and if we’re too sick to get to the kitchen, we do without. My ex-husband made it quite clear that he "didn’t get married to cook and clean", and any time he had to do it, he complained to anyone who would listen -- without mentioning that the reason he had to do chores was because after working a full-time job, and walking home from the bus stop because he couldn’t be bothered to drive me home from work, I was exhausted and often collapsed even before making it to the bedroom. He was firmly convinced that I got sick solely to inconvenience him, but stayed married to me because I was working and he was not.
The pitches for funds make it clear that the MD Association provides funds for braces, therapy, etc. This leads people to believe that all associationshelp out financially. Unfortunately, because most of the funding for CFS has always come from the patients, the various CFS associations cannot even fund all the research they want to do, much less provide help directly to the patients. There’s no summer camp for CFS kids; if you need a wheelchair, either you or Medicaid pays for it (or you don’t get it); if you can’t afford the medical bills, you either do without or go bankrupt. Our association can’t spare the money to help out the patients because they don’t have it, either. And almost 100% of our volunteers are patients and their already-overworked caregivers; when a patient reports needing help with housework or building a wheelchair ramp, there is no one physically able to give them that help.
Eons ago, I did a lot of volunteer work for a lung condition that took the life of a friend’s kid sister. Frustrated with raising money in small amounts, a few coins at a time in a collection can, I asked "why can’t we have a telethon?" thinking we could raise big bucks fast, and it was explained that their kids weren’t on crutches or in wheelchairs. It simply wasn’t as compelling to watch their kids sitting on a couch and say "these kids are sitting on the couch because they can’t breathe well enough to run around and play".
And CFS has the same problem: if we’re sitting on a couch, we look healthy and garner no sympathy. Those who are so afflicted that they need wheelchairs are too sick to make the trip to a TV studio. Most days, I could make the trip to the studio, but the exertion would have me falling asleep sitting up the rest of the day; hardly riveting television. The average overworked American would look at us dozing off and think enviously "it must be nice to be able to take a nap in the middle of the day", without understanding that this is not a choice, it’s more like narcolepsy in that you absolutely cannot stay awake when you’re hit with a sudden wave of exhaustion.
Because it’s a virus, it sometimes afflicts entire families. Unlike Muscular Dystrophy, the cute child with CFS can’t count on having a mother who’s well enough to drive them all over the state to be a Goodwill Ambassador – mom could well be a CFS patient herself.
What could our CFS researchers do with $500 million in one fell swoop? That’s more money than has been spent in the US on CFS research intotal over the past 25 years. Maybe they, too, could solve the problem in 18 months. Even just a vaccine to prevent more people from getting the virus would be a step in the right direction. Though we haven’t given up hope that, with enough funding, someone can find a cure to get even the long-term patients back on their feet.
$500 million is just 1/50 of the annual cost to the economy of having a million Americans out of work. If you put it in that perspective, it’s a pittance; less even than one year of income taxes on the lost productivity. And would mean so much to so many who would love to have their lives back.
22 comments:
We get busy with courses starting and don't check your blog for awhile - only to kick back on a Friday night with some beers and find ourselves treated to some great laughs. So thanks.
We don't know if Jerry Lewis actually said that but he was incorrect - not that that would stop you from again throwing them out.
The Ford Foundation did not give J Salk 500 million dollars. If they did I'm sure it is something they would credit themselves with. Tell us if you see it anywhere here, or anywhere else for that matter.
http://www.fordfound.org/about/history.cfm
J Salk had not *beaten* polio in 18 months. Anyone with even 1/10 of a workable brain could not only realize the impossibility of that, but a cursory check of reputable sources would dispute it in 5 minutes. We'll include some examples. Please note the number of years Salk and others actually worked on polio. Quite a bit more than the 18 months you quote. Some here are taking bets that you will now say it was 18 months that was a turning point. Obviously we are learning very well your methods of attempting to pretend you know what you talk about.
Yet this is the very laughable stuff we expect to find from you and so are not disappointed. Have you any idea that when people who actually know about these things see such hilarity it speaks as to all the other crap you put out there?
But again thanks for the laughs.
And we are still waiting for you to verify your "fact" that early AIDS patients were told they were merely depressed. But don't worry we are not holding our breathes for the impossible implausible. Or for you to admit you are ever wrong.
A successful polio vaccine is developed by University of Pittsburgh virologist Jonas Salk, who received funding for his work from Sarah Scaife Foundation and other foundations
In 1947, Salk accepted an appointment to the University of Pittsburgh Medical School. While working there, with the National Foundation for Infantile Paralysis, Salk saw an opportunity to develop a vaccine against polio, and devoted himself to this work for the next eight years.
In 1955 Salk's years of research paid off. Human trials of the polio vaccine effectively protected the subject from the polio virus. When news of the discovery was made public on April 12, 1955, Salk was hailed as a miracle worker. He further endeared himself to the public by refusing to patent the vaccine. He had no desire to profit personally from the discovery, but merely wished to see the vaccine disseminated as widely as possible.
Herald Cox and Hillary Kaprowski began live-virus polio vaccine research in 1946. Five years later the National Foundation paid $14.5 million to test gamma globulin as a possible defense against polio. Unlike the Salk shots, given in the arm, and the Sabin vaccine, given orally, the gamma globulin was given in the buttocks. The shot prevented many communicable diseases in addition to polio.
A year later Dr. Alber Sabin worked on a live-virus polio vaccine. In 1961 the American Medical Association endorsed the use of Sabin's oral vaccine. Upon the adoption of the Sabin vaccine, everyone in America was called back for immunization.
In 1947, he became head of a research laboratory at the University of Pittsburgh and in 1948 was awarded a grant to study the polio virus and develop a possible vaccine. By 1950, he had an early version of his polio vaccine.
A successful polio vaccine is developed by University of Pittsburgh virologist Jonas Salk, who received funding for his work from Sarah Scaife Foundation and other foundations
In 1947, Salk accepted an appointment to the University of Pittsburgh Medical School. While working there, with the National Foundation for Infantile Paralysis, Salk saw an opportunity to develop a vaccine against polio, and devoted himself to this work for the next eight years.
In 1955 Salk's years of research paid off. Human trials of the polio vaccine effectively protected the subject from the polio virus. When news of the discovery was made public on April 12, 1955, Salk was hailed as a miracle worker. He further endeared himself to the public by refusing to patent the vaccine. He had no desire to profit personally from the discovery, but merely wished to see the vaccine disseminated as widely as possible.
Herald Cox and Hillary Kaprowski began live-virus polio vaccine research in 1946. Five years later the National Foundation paid $14.5 million to test gamma globulin as a possible defense against polio. Unlike the Salk shots, given in the arm, and the Sabin vaccine, given orally, the gamma globulin was given in the buttocks. The shot prevented many communicable diseases in addition to polio.
A year later Dr. Alber Sabin worked on a live-virus polio vaccine. In 1961 the American Medical Association endorsed the use of Sabin's oral vaccine. Upon the adoption of the Sabin vaccine, everyone in America was called back for immunization.
In 1947, he became head of a research laboratory at the University of Pittsburgh and in 1948 was awarded a grant to study the polio virus and develop a possible vaccine. By 1950, he had an early version of his polio vaccine.
I apologize for not getting around to doing the UNPAID research you requested. I have been working for pay and have not had a chance to do much of anything else. It is nearly 10 PM on a Friday night and I am still working, and have another rush coming in.
If you would like to go through the boxes and boxes of documents I have which pre-date the internet and therefore are not google-able, just let me know when you want to come over and go through them. Otherwise, you will simply have to wait until I have time to do it. I will not put PAID work on hold to do UNPAID work.
I did not double-check Jerry Lewis' statement for accuracy. I attributed it to him, and if there is a problem with its accuracy, then the blame falls on him, not me.
The inaccuracy of HIS facts does not change the thrust of my own observations that if a decent amount of money were invested in CFS research, we would be much further along in identifying the source of the immune dysfunction, documented brain lesions, etc., which prove it to be a physical and not psychological ailment.
I am almost starting to feel sorry for you. You sound as if you actually believe your own stupidity. Look at what you write once in a while. Try and see at as intelligent people might
You put out facts that are in reality not facts. When asked to prove them you act as if doing so is a favor to those who try and teach you the truth. At least show enough brains to admit when you're wrong. It's probably a good thing this blog seems to have less than 5 readers outside of the ones of us who read it for the jollys. Means less people polluted by your inane unsubstaniated *facts*.
I am almost starting to feel sorry for you. You sound as if you actually believe your own stupidity. Look at what you write once in a while. Try and see at as intelligent people might
You put out facts that are in reality not facts. When asked to prove them you act as if doing so is a favor to those who try and teach you the truth. At least show enough brains to admit when you're wrong. It's probably a good thing this blog seems to have less than 5 readers outside of the ones of us who read it for the jollys. Means less people polluted by your inane unsubstaniated *facts*.
Doing your research for you so that you don't have to trouble yourself with a trip to the library would be "doing you a favor". Giving up my paying job so I can do research for you would be more than "a favor"; it would cost me a lot of money. I'll send my work to someone else next week, and then send you a bill for $25/hour -- my normal research rate -- for doing the research that YOU should be doing to prove your point. I've already provided you with two quotes from people who were there, whom you choose to discredit because they don't agree with you.
Why don't you provide ME with the proof that I'm wrong instead of expecting me to do all the work for you? That in itself proves that you're the one who's too lazy to work, not me.
If I don't find anything that supports your point of view, you'll accuse me of not looking, so why waste my time? I know I have more on the subject somewhere, but while you were out partying last night, I was working for pay. Sounds like you have more free time to research than I do.
I have admitted that I did not double-check Jerry Lewis' facts. If he was wrong, then he needs to be the one who apologizes to you.
Bullshit.
"Why don't you provide ME with the proof that I'm wrong instead of expecting me to do all the work for you? That in itself proves that you're the one who's too lazy to work, not me."
There is no way to disprove your statement that AIDS was first thought to be depression because there is no truth to the statement to verify.
And this - "I've already provided you with two quotes from people who were there, whom you choose to discredit because they don't agree with you" WTF?
They get no credit because their statements have no credibility. Because a person chooses to say something does not make it fact by a long shot. Especially when it is said to those educated in the field who do know the facts. But because you say it it has got to correct. And you say it seriously?
"documents I have which pre-date the internet and therefore are not google-able"
Do you think we are as ridiculous as you? It would be called history and that is all over the internet, and not just at laymen sites such as google that you use. Just last night verifiable history taken off the net was shown to you. And it all pre-dated the internet. There is no information on early AIDS being thought of as depression by competant researchers and physicans because it is merely an idiotic statement you made. If it did have any basis whatsoever even you would be able to find it. But don't bother, because it isn't true.
Jesus lady - you are one whacked out idiot!
Also noted that your researchers Dave, Pat whoever had no answer to back up your lame assed AIDS statement either. You probably embaressed the shit out of them by even trying to drag them into such ridiculous.
"There is no way to disprove your statement that AIDS was first thought to be depression because there is no truth to the statement to verify."
There is no easy way for me to prove my statement because the person who reported it to me can no longer be reached by phone. He died of AIDS nearly 20 years ago.
I know that I have other sources to verify my statement, but I don't have the time to dig them out while I'm working on rush jobs. When I have a few free hours to rummage through all those boxes, I will look for them. But you won't believe them, anyway, just as you didn't believe a DOCTOR who supports my statement.
Not everything published in the 1970s and 1980s is available online. Some may be. Embarrassing articles are not. (I know, because I have tried to find an online source for a CFS article I have here in hard copy, and CDC has successfully sanitized the history so that the only proof of that statement is hard copies in the hands of long-time activists.) While the NYTimes has an online archive going back many decades, other newspapers only keep the past 30 days online, so it would be impossible for me to point you to an article I read in 1988.
Love love love the schoolgirl attitude this one has. So we are lazier than she is? And we went out and hung for a few hours on a fri night?
Who wants to tell her that we all completed med school while from what you guys told me she couldn't ever get through 3 years of law?
Idiot doesn't even come close in describing this one, Rat.
I guess in my laziness I missed this. Where and what doctor did you say stated that AIDS was initially viewed as depression? I saw the bit where one compared AIDS to CFS but not about the AIDS depression angle. Please cue me in.
And how do you know it was "couldn't" get through 3 years of law school, rather than leaving school for personal reasons?
Oh, yes, because you're medical students and know the answers without asking the questions.
Had I stayed healthy, I probably would have gone back and finished up at the school directly across the street from my office. Unfortunately, I got sick before I was in a position to do that, and could no longer work all day and go to school at night. Given the choice of being a homeless law student or having a roof over my head and medical insurance, I made the responsible choice to continue working full-time, and then going home and resting so that I was able to work the next day. My entire life at that point was working and resting, no partying, no drinking, no wasting energy on anything that wasn't directly related to staying employed.
And just to try and help you save some face I suggest this. Instead of stating something as a scientific fact say it the way it is. Someone told you. You will look slightly less foolish than you do keeping up this stupid charade of pretending to know of what you speak when it is so evident to those who have studied and researched the virus that you don't. Period. Your endless jockeying on this when we know you are wrong is getting embaressing for even us to watch.
"There is no easy way for me to prove my statement because the person who reported it to me can no longer be reached by phone. He died of AIDS nearly 20 years ago."
looks like lorraine won the pool on why she couldn't get through law
guess dinner's on us tonight at gilgos
LOL! Like taking candy from a baby. Besides, I was just the first one to yell it out loun enough over the rest of you. But you still have to buy me dinner :)
And Rat - stay away from here for awhile before you blow a coronary in frustration! Take Kash's advice. Go read the 11-27 entry. Trust me when I say you will then clearly see what this one is here. And there is no getting through to her.
Now finish your work so we can all meet up. I'm getting hungry :)
"looks like lorraine won the pool on why she couldn't get through law"
Oh? Lorraine knew that in my last semester at the school I missed a lot of classes dealing with one problem after another, many of them caused by other people's irresponsibility? Or Lorraine thought I couldn't hack it?
I got A's in the two hardest classes at the school, one of them despite missing so many classes, so obviously, I would've done better overall if I had been concentrating on school instead of having constant distractions demanding attention. The semester started with a death in the family; I returned from the funeral to utter chaos created by a new roommate and her flaky friends; and it went downhill from there.
No - Lorriane said you would state "personal reasons" but it looks like we have a split win, cause Samwise bet you would blame anyone but yourself.
So don't go ordering those crab cakes just yet, Lor.
"Samwise bet you would blame anyone but yourself"
The decision was mine entirely. I needed more time to clean up the problems, and it was easier to jettison school than my job in order to get that time.
Someone else might have opted to take days off from work instead of from school. I didn't think that was the right decision for me. Nor did I think it was the right decision for me to be irresponsible and leave the situations unaddressed.
I knew the consequences, that if I skipped that many classes I probably would not get good grades, and I accepted those consequences.
If I had been a different person, I would've skipped out and left the flaky roommate to deal with her unpaid shares of rent and utilities while I moved in with my boyfriend. Again, my decision entirely that I was going to do the responsible thing and not trash my credit rating.
There were plenty of options to choose from, and regardless of who created the problems, I take full responsibility for the decisions I made about how to deal with them.
"Instead of stating something as a scientific fact say it the way it is. Someone told you."
And when I did that in this post, attributing a statement to Jerry Lewis, you nonetheless jumped all over me because his statement was wrong and I didn't double-check his facts.
There's no pleasing some people.
I stand by the things I heard first-hand, regardless of whether you are able to verify them online. I've had similar arguments with other people, one of whom swore up and down that my grandmother "never said that", despite the fact that she had never met my grandmother, she still claimed to know exactly what was said in that conversation because it differed from her personal experience.
If you were in California in the late 70s/early 80s, you know what was going on. If you weren't, you just have to believe those of us who were there and heard things from our gay friends which may or may not have been published.
For the record, since you seem to think that everything printed in the 1980s should be available online, I just checked the San Francisco newspaper's website, and their online archives go back only to 1995. Hardly far enough back for me to use that online source to prove to you that in the 70s/early 80s before a virus was identified, AIDS patients were told there was no biological cause for feeling ill.
Yes, at some point they did step over the line into objective symptoms like Kaposi's sarcoma and pneumonia, at which point their illness could not be denied. But first they had vague symptoms of fatigue and feeling unwell, which were dismissed because "all tests are normal".
Since I was interested in AIDS only as a friend and observer, I didn't keep newspaper articles about AIDS; at the time, I didn't expect to develop the second great plague of the 1980s. I do, however, somewhere, in one of those boxes, have newspaper and magazine articles comparing the early symptoms and attitudes toward AIDS to those experienced by CFS patients a few years later, and a few quotes from experts in books which are not as intensely indexed as Osler's Web.
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