"I'd rather have HIV"
From the Q & A in yesterday's New York Times with immunologist Dr. Nancy Times:
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which mpacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."
An AIDS specialist at the Oregon Health Sciences University, Dr. Mark Loveless, who also treated ME/CFS patients before retiring told Congress in 1995 that a CFS patient "feels every day significantly the same as an AIDS patient feels two months before death." Indeed on the Karnofsky fatigue scale, which Loveless administered to both AIDS and CFS patients, he noted that many AIDS patients scored higher in their last week of life than CFS patients.*
____________
*Hillary Johnson, Osler's Web, New York: Penguin Books, 1996, p.364-365.
Labels: CFIDS/ME experience
posted by Michelle @ 3:47 PM
4
comments
links to this post
4 Comments:
There is also the fact that, HIV is a recognised illness and pretty much everyone believes in it.
CFS on the ohter hand, is still met with much doubt even in the medical profession (I'm assuming the US attitude is similar to that in the UK and around the world), in direct opposition to WHO guidelines!
...and as you also stated, there is a HUGE difference between when HIV/AIDS was first discovered and 2009. Back in the 80's when I
got CFS I also had friends that literally DIED
from AIDS... like 5 within a year. They didn't die from suicide cuz they couldn't take it any more.
So when anyone reads your comments, please realize that IN the USA there is a HUGE difference between the 80's and NOW. We also have the benefit of all the research that has been done on their behalf and TRUST me, the decades they also had to suffer and die to get this far were NOT fun , bit they did have Hollywood behind them and we didn't..
just my 2 cents.
I hope I didn't upset anyone. Just wanted to point out the difference in beliefs only. CFS has also been around for years and years- my Nan who is 82 has ME listed in her old nursing book.
I have seen these statements on other sites and, as someone who was very recently diagnosed with ME/CFS, they horrify me. As does the percentage of suicides among ME/CFS patients.
Post a Comment
Links to this post:
Create a Link
<< Home