4 ms·

> seemingly because politicians don't want to admit they fucked up How did politicians fuck up?

aestetix 3y ago
The two easy areas I can cite are the lackluster results of the RECOVER initiative (https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss https://erictopol.substack.com/p/long-covid-mitochondria-the...), and the complete failure of any government to distribute vaccines well. Another: 19 September 2022, US President Biden declares COVID to be "over" https://www.youtube.com/watch?v=tHT1enFH2sI https://www.youtube.com/watch?v=tHT1enFH2sI Meanwhile, it is easy to get Pfizer and Moderna vaccines (mRNA based), and hard to get Novavax (protein based). By hard I mean impossible. mRNA are not well understood, have nasty side effects for some people (including me), and lose their efficacy after a few months, thus the need for boosters. You can verify this with blood tests that show antibody levels. With Novavax, which is based on technology that's been around for 20 years, it appears (based on studies) that it keeps its efficacy for at least a year after multiple doses, and it has minimal side effects (including my own shot). That said, many governments have relationships with Pfizer and Moderna, and so these vaccines are easily attainable, while no such relationship exists with Novavax, and it is impossible to get it. I say impossible after asking about 50 doctors, contacting pharmacies, and finally contacting Novavax themselves, who told me that it is not possible to get until the new mix comes out. So why would a vaccine that seems to actually work be unavailable, while ones that do not work are easy to get? I realize that this is more a commentary on COVID than ME/CFS, but I'm arguing that they are very similar. Just consider Physics Girl, who contracted COVID a year ago, and is now bed bound: https://www.youtube.com/watch?v=vydgkCCXbTA https://www.youtube.com/watch?v=vydgkCCXbTA
rocqua 3y ago
Probably GP meant they fucked up by downplaying the danger's of COVID and doing the least possible to keep the hospitals from overflowing. Where, instead, they should have done more to prevent people from getting COVID.
- hollerith 3y ago
  Because of how infectious COVID is, preventing people from getting it was never a realistic goal.
PaulKeeble 3y ago
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.
- deleted 3y ago
  [deleted]
- 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.

The two easy areas I can cite are the lackluster results of the RECOVER initiative (https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss https://erictopol.substack.com/p/long-covid-mitochondria-the...), and the complete failure of any government to distribute vaccines well. Another: 19 September 2022, US President Biden declares COVID to be "over" https://www.youtube.com/watch?v=tHT1enFH2sI https://www.youtube.com/watch?v=tHT1enFH2sI Meanwhile, it is easy to get Pfizer and Moderna vaccines (mRNA based), and hard to get Novavax (protein based). By hard I mean impossible. mRNA are not well understood, have nasty side effects for some people (including me), and lose their efficacy after a few months, thus the need for boosters. You can verify this with blood tests that show antibody levels. With Novavax, which is based on technology that's been around for 20 years, it appears (based on studies) that it keeps its efficacy for at least a year after multiple doses, and it has minimal side effects (including my own shot). That said, many governments have relationships with Pfizer and Moderna, and so these vaccines are easily attainable, while no such relationship exists with Novavax, and it is impossible to get it. I say impossible after asking about 50 doctors, contacting pharmacies, and finally contacting Novavax themselves, who told me that it is not possible to get until the new mix comes out. So why would a vaccine that seems to actually work be unavailable, while ones that do not work are easy to get? I realize that this is more a commentary on COVID than ME/CFS, but I'm arguing that they are very similar. Just consider Physics Girl, who contracted COVID a year ago, and is now bed bound: https://www.youtube.com/watch?v=vydgkCCXbTA https://www.youtube.com/watch?v=vydgkCCXbTA

rocqua 3y ago

Probably GP meant they fucked up by downplaying the danger's of COVID and doing the least possible to keep the hospitals from overflowing. Where, instead, they should have done more to prevent people from getting COVID.

hollerith 3y ago
Because of how infectious COVID is, preventing people from getting it was never a realistic goal.

PaulKeeble 3y ago

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.

deleted 3y ago
[deleted]
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.