The orange elephant in the room: impact on NIH funding?
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caledonia
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I didn't mention the issues with Social Security, Obamacare and Medicaid because they're off topic for this thread. The Republicans want to dismantle or privatize these programs instead of raising taxes to strengthen them.
The proposed changes to these programs could be really bad for ME patients.
You can read more about this in the Republican platform I already linked to.
The proposed changes to these programs could be really bad for ME patients.
You can read more about this in the Republican platform I already linked to.
anciendaze
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Don't expect much unity from that group once they start talking about what will replace the current system. After 8 years spent disagreeing and blocking action, how quickly will those habits change? At this point I can't even say there is coherent Trump plan to articulate. He has run against Washington insiders, and is now in the process of becoming one. Even Republican stalwarts were taken by surprise by the popular response. We live in interesting times.
I don't predict smooth sailing for anyone, but I'm not ready to say the U.S. political system has gone the way of the Weimar Republic.
Nielk
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In general Republicans are for small government and less spending on social services. Trump personally has stated that he wants to trim spending and be fiscally responsible.
It is also I think his job to select the director and secretary of NIH?
The thing is that for the economy overall, it makes sense to spend on research for diseases- especially on a disease like ours which disables so many Americans from work. The loss to the economy is huge from loss of income and disability payments.
Spending on research and FDA approved drugs could possibility bring us back into the workforce and off disability which would be smart spending.
So - I think it's impossible at this time to really know what the future will bring for us. As far as HHS and CDC in my opinion, it can't get worse.
As far as Obamacare, right now, the rates have already increased significantly. It's true that Trump has promised to do away with Obamacare but he promised to replace it with a better plan.
It is also I think his job to select the director and secretary of NIH?
The thing is that for the economy overall, it makes sense to spend on research for diseases- especially on a disease like ours which disables so many Americans from work. The loss to the economy is huge from loss of income and disability payments.
Spending on research and FDA approved drugs could possibility bring us back into the workforce and off disability which would be smart spending.
So - I think it's impossible at this time to really know what the future will bring for us. As far as HHS and CDC in my opinion, it can't get worse.
As far as Obamacare, right now, the rates have already increased significantly. It's true that Trump has promised to do away with Obamacare but he promised to replace it with a better plan.
dreampop
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To get to the topic of this thread. Trumps "eyeing" Bobby Jindal as HHS Secretary, under which both the CDC and the NIH fall. The President also nominates the NIH director who is approved by the senate. Collins has had an unusually long term, so the president may nominate a new director - possibly Carson but I doubt it.
Jindal is an ultra conservative, anti lgbt pro life etc. But you never know - it depends on the person how they will feel about me/cfs rather then party per se. Obama indicated he prevented Ryan from reducing the NIH budget. I suspect Ryan will target it because its not obvious in the public eye and he could probably cut billions.
Jindal is an ultra conservative, anti lgbt pro life etc. But you never know - it depends on the person how they will feel about me/cfs rather then party per se. Obama indicated he prevented Ryan from reducing the NIH budget. I suspect Ryan will target it because its not obvious in the public eye and he could probably cut billions.
@dreampop
That is what I was afraid of. You can pillage the budget for medical research without it causing any obvious impact on the lives of ordinary people. The worst that would happen as a consequence is nothing changes for the outlook of most people (which is obviously a horrendous outcome for us, but not for most).
Does the HHS secretary concern themselves with the minutiae of how much funding goes to each individual disease?
That is what I was afraid of. You can pillage the budget for medical research without it causing any obvious impact on the lives of ordinary people. The worst that would happen as a consequence is nothing changes for the outlook of most people (which is obviously a horrendous outcome for us, but not for most).
Does the HHS secretary concern themselves with the minutiae of how much funding goes to each individual disease?
Nielk
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It's the HHS director and congress who determine that.
anciendaze
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I do not want to get into a general political discussion, or expose my opinions on a wide range of issues where I differ with the President-elect, so far as I can make sense of opinions he has expressed.
What I want people to understand is that, so far, HHS policy has not done much good for people with ME/CFS. What treatments will they recommend or support? Antidepressants, counseling and exercise. If you are hospitalized there is a real chance you will end up in a locked ward. You can have gastroparesis, dysphagia or IBS. This will likely be considered an eating disorder. Here's the conventional wisdom on that subject. Do not expect anyone else to pay for treatment with Ampligen or Rituximab. Don't expect financial assistance to get you out of water-damaged housing. Don't expect government assistance in testing for mycotoxins or unusual autoantibodies (unless you can show you have cancer). Don't expect a hospital to supply any supplements you have been taking, or even allow them.
Note: any M.D. or police officer who suspects you are a danger to yourself, even if not a danger to others, can start involuntary commitment for observation by psychiatrists. There is nothing in current legal restrictions requiring any consideration of the possibility of organic disease precipitating secondary mental illness, though examples of this are well known.
What about research? Well, so far we have the promise that research will ultimately find the cause of something called either CFS or SEID, (which has ambiguous diagnostic criteria that have not been "operationalized" for clinical use,) at some unspecified time in the future. Nothing has been said or done that cannot be walked back.
Yes, we may face open hostility from a new administration. If so, I think we are now better prepared to expose hypocrisy and absurdities. None of our true allies are going to change their opinions because of political pressure.
What I want people to understand is that, so far, HHS policy has not done much good for people with ME/CFS. What treatments will they recommend or support? Antidepressants, counseling and exercise. If you are hospitalized there is a real chance you will end up in a locked ward. You can have gastroparesis, dysphagia or IBS. This will likely be considered an eating disorder. Here's the conventional wisdom on that subject. Do not expect anyone else to pay for treatment with Ampligen or Rituximab. Don't expect financial assistance to get you out of water-damaged housing. Don't expect government assistance in testing for mycotoxins or unusual autoantibodies (unless you can show you have cancer). Don't expect a hospital to supply any supplements you have been taking, or even allow them.
Note: any M.D. or police officer who suspects you are a danger to yourself, even if not a danger to others, can start involuntary commitment for observation by psychiatrists. There is nothing in current legal restrictions requiring any consideration of the possibility of organic disease precipitating secondary mental illness, though examples of this are well known.
What about research? Well, so far we have the promise that research will ultimately find the cause of something called either CFS or SEID, (which has ambiguous diagnostic criteria that have not been "operationalized" for clinical use,) at some unspecified time in the future. Nothing has been said or done that cannot be walked back.
Yes, we may face open hostility from a new administration. If so, I think we are now better prepared to expose hypocrisy and absurdities. None of our true allies are going to change their opinions because of political pressure.
Biarritz13
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