3 ms·

On ME/CFS they failed to fund any research for 70 years, on many occasions saying things that led to patients being abused and not believed by their families or

On ME/CFS they failed to fund any research for 70 years, on many occasions saying things that led to patients being abused and not believed by their families or doctors. This led to an attitude in the NIH that it wasn't worth funding research which persists still to this day. There has been no real funding for research out of the NIH since a brief spurt in the 1980s, even now what funding its allocated has mostly ended up on Cancer. That is all a political failure that has led to no progress on the disease and widespread abuse of patients.

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acegopher 3y ago
That's not really a failure of politicians, because politicians don't have medical expertise. They rely on the guidance of experts in the medical profession to steer funding. So it was a human failure perhaps, and as all allocation of limited resources has winners and losers. So blame the system, and human biases, but not the government specifically.
azinman2 3y ago
Politicians don’t allocate funding into specific diseases. They allocate large blocks to places like the NIH, which then have scientists determine where to allocate funds.
nradov 3y ago
The NIH puts significant funding into CFS. You can attend their public webinars to find out more. https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-co...
peterfirefly 3y ago
Would it have worked to spend lots of money on this kind of research 50 years ago? Were our tools -- scanners, DNA/RNA chips, etc -- and our knowledge anywhere near good enough to make it likely it would have paid off? To me it sounds like trying to do rocket research in the hope of reaching the moon back in 1900. Doing it once the time is ripe is a completely different matter. I hope it is ripe now.
anonuser123456 3y ago
> on many occasions saying things that led to patients being abused and not believed by their families or doctors. Yes, but what part of “a gentleman’s hands are always clean” do you not understand?

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acegopher 3y ago

That's not really a failure of politicians, because politicians don't have medical expertise. They rely on the guidance of experts in the medical profession to steer funding. So it was a human failure perhaps, and as all allocation of limited resources has winners and losers. So blame the system, and human biases, but not the government specifically.

azinman2 3y ago

Politicians don’t allocate funding into specific diseases. They allocate large blocks to places like the NIH, which then have scientists determine where to allocate funds.

nradov 3y ago

The NIH puts significant funding into CFS. You can attend their public webinars to find out more. https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-co...

peterfirefly 3y ago

Would it have worked to spend lots of money on this kind of research 50 years ago? Were our tools -- scanners, DNA/RNA chips, etc -- and our knowledge anywhere near good enough to make it likely it would have paid off? To me it sounds like trying to do rocket research in the hope of reaching the moon back in 1900. Doing it once the time is ripe is a completely different matter. I hope it is ripe now.

anonuser123456 3y ago

> on many occasions saying things that led to patients being abused and not believed by their families or doctors. Yes, but what part of “a gentleman’s hands are always clean” do you not understand?