Osler's Web and And The Band Played On

[joshualevy]

Has anyone read both Osler's Web and And The Band Played On and compared them? I'm in the middle of reading Osler's Web and it seems like comparing the events in the two books would be interesting. They both describe the CDC's response to a disease outbreak, just a few years apart. However the response to one was relatively successful, the other relatively unsuccessful from the scientific point of view of understanding the diseases.

 

[lenora]

Hi @joshualevy. I came along right in the middle of these diseases. AIDS was not getting the attention it deserved and, as a result, the govt. really wasn't interested in dealing with our problem. AIDS had wonderful, healthy volunteers that helped in commanding the research money it now receives.

While I don't begrudge them the research money, I do begrudge that none of that research filtered down to our rather small group....extremely small then and with little power. Yes, I've read both books, actually most books that I know about concerning immune problems and I'm glad that you're informing yourself.

OSLER'S WEB is a wonderful book, old now by definition, but packed with info about the beginning of what we now consider "our" problem. It was never given the recognition it deserved and I'm glad you're reading it. I try to keep up on as much of this topic as I can. Anyway, it was a good book to start with....rather lengthy but inclusive of what was occurring and the government's behavior at that time.

To be honest I wish we had the AIDS group on our side at that time and even now. Anyway, we now have Long Haul Syndrome and hopefully we'll get their research. MS was finally recognized as a disease during this time. While they receive a windfall of money compared to us, once again their research didn't filter down. I wonder what the AIDS group is doing with the incredible sums of money now being paid to it. Yes, new drugs and research are done, but how can you account for so much money? Anyway, I'll leave that for people far younger than I am now.

Thanks for writing. It's good to know that people are informing themselves and are going back to the origins of the illness. Yours, Lenora.

 

[vision blue]

Does the book give the history of CFS before 1980s? My recollection is that it’s been pointed out what are used to be a illness that pre-dated that called Raggedy Ann syndrome.

It makes sense to me that aids got money while CFS did not because AIDS killed people relatively quickly and CFS took much longer if at all and/or kills people in a way that makes it harder to trace to this disease like increased rate of dying of heart disease. Note I’m not defending that at all just pointing out the public health is only interested in things that cannot be denied in the moment. like death of young people; Longer death and debility are of no consequence. Anotheer Example of this is CMV. Having CMV has been shown to decrease the lifespan but the medical system just does not care.

 

[vision blue]

Ps forgot to say if there was an explosion of cases in the 80s compared to before, One thing that was different is that was when they started to be many more chemicals. That would support MCAS type theories. Or If they are viraly caused, that would implicate new viruses and not ones like EBV and other herpes viruses that I’ve been around as long as humanity

 

[lenora]

Hi @vision blue.....I had forgotten that Raggedy Ann Syndrome was actually the Yuppie Flu, the latter name winning b/c well, it's what the press liked. But yes, CFS/FM & in the UK, ME were all the same illness. It was also called Lyme Disease along with anything that didn't fit a particular mold of the time. I think Yuppie Flu was favored b/c it caught the public eye as something people had control over and was really just another form of laziness. In the end, who knows? I don't and I was there from the beginning.

No, I never resented the funds AIDS received, I did resent that the immune research wasn't passed on to us. Those people suffered and really, it wasn't until I saw PHILADELPHIA that I finally burst into tears because I could so relate to the suffering of those on the screen. That and the music from that movie...especially the song by Bruce Springsteen (as I recall).

No, it's just that now AIDS still receives, or let me rephrase that as saying it now receives, huge amounts of money for research and new drugs. The people with AIDS back then, were prejudiced against, couldn't receive proper medical care....and there was intense fear surrounding the whole disease. Then we came along...for a long time I thought I had AIDS b/c I'd had surgery and a transfusion at that time.

I later read a book written by a physician whose job it was to track how AIDS went from large cities to small town America....what caused the arrival of it in the smaller places. You may be surprised to know that he found it was transferred at truck stops....lots of homosexual activity in these places, hitchiking and one could get AIDS in return for hitching a ride. No moral highground, just good investigation and a sympathetic doctor who treated many of these patients himself.

It was one of the books written by Abraham Verghese, M.D., and I'm thinking it was his first book, but I'm not sure.

But yes, we were also the Raggedy Ann's of those years, had quite forgotten that term. Used b/c the doll is floppy and can't sit on its own. We faced prejudice too, trust me.

Chemicals? I think many of the original people with this illness grew up in the late 1950's and 1960s when chemicals were used in great abundance. DDT was used for many things...liberally, I may add. You could just be sitting along a trail and before you knew it, some crew was spraying DDT to prevent weeds. Also used for lice and so many other problems. So I expect that by the 1980's chemicals were in full force in our country. Just walk past a candle shop to get an idea of what chemicals have done to our world, open a bottle of most shampoos and anything that smells good. Even something with a lavender odor is often chemically concocted. None of it helps even if it wasn't the cause in the first instance. People are becoming more aware, but it has certainly taken a long time. We certainly smell good....we just don't feel that way. Yours, Lenora.