Single-payer health care is great on paper, and probably great for a majority of people. Great for governments, maybe, in terms of providing good care for a majority of citizens while reining in costs. Sounds great. There may be reasons why it wouldn't work so well in differing societies given different forms of government, but it's an intriguing debate.
But when I hear ME patients talking about how great it is, I wonder if they've thought it through. The first thing that comes to my mind is that pretty much every government has tried to promote CBT & GET, somewhere between suggestion and imposition; while at the same time refusing to commit any funding towards actual research. The second thing that comes to mind is the struggle I observe as to how ME patients are treated in societies that have single-payer health care, or something close to it. Especially the UK & Western Europe. Unless I'm horribly wrong about what single-payer is, it means that the government picks up the tab. It also means that the government decides what's best--or what's appropriate.
I've seen Michael Moore put out work extolling the virtues of this system, and I've seen Sarah Palin try to knock it down. There seems to be truth in some of what both are saying, but each view was quite narrow-minded and tended to miss the overall point. We can't afford that. And the more time passes, even as we do tend to make more progress, the more I have to wonder how any ME patient could seriously support this. Because the reality of living with this disease should force people to reevaluate a lot of things, including their politics.
I don't know how many patients there are in the US with ME, but I never trust the official numbers. Everyone says 1 million; I don't trust that number. I think it's more like half that, but it's certainly growing, so let's say 1 million for the sake of argument. Right now the government doesn't spend much on ME/CFS. Whatever they spend for the CDC's CFS program, and the funding at the NIH research program. What does that come to? Until this year, less than $15 million a year, most likely. Plus whatever costs are incurred by the 1 million currently stricken, whatever meager government benefits we have qualified for, and that's certainly not all of us, just to get by. Like Medicare or Social Security Disability. Medicare isn't paying for anything experimental, I wouldn't think--no Ampligen or Rituximab. No moves by the government to take the disease seriously, no approvals from the FDA for Ampligen or anything else, so no private insurance companies have to pay for what they see as foolishness and waste. They're saving a LOT of money on us.
What would any government see in the way of benefit by legitimizing this disease. What's in it for them?
Why have they resisted as hard and for as long as they have?
Money, period. Now, as bad as it is in the US, those of us who are able, which isn't a lot of us, can try to get to one of the very few experts out there, who are remote and expensive to many. If we do have money, we at least can avail ourselves of things you just can't get in other countries. That really sucks, but think about that--if you have ME in most of Western Europe, you don't even have access to what you can do in the US. I'm sure there are exceptions, but for the most part it's just not possible, and that's largely because the amount of money that people like Wessely & Fink have saved governments has been the reason they have been given power, which has translated into healthcare policy. And it sure looks like 'single-payer' to me. And using their rationale, looking at it from their point of view, CBT & GET are 'the only evidence-based treatments,' and therefore those are the only treatments the government has made available.
Say what you want about the US, but that looks scary to me. Yes, scarier than the way it is in the US. Anything I've tried over the years that's been even remotely helpful is simply forbidden to ME patients in this part of the world. You know that thread Dolphin has from way back when where Peter White insisted that all of the items that might be helpful should be denied us because it might impede our recovery? That's what I'm afraid of when I think about single-payer healthcare. And that's not coming from any sort of ideological place where that places me somewhere in particular on the political spectrum. I know some people might see it that way, but it's not true.
If I were still healthy I might think universal health care is a great idea. I once did. I never considered people like us, but then I never would have thought that people like Per Fink were throwing people like Karina Hansen in psychiatric hospitals, either. He did this because he could, because the government has given him that power. If I've got this all wrong and that's not a component of the single-payer health care some people seem to think is s great idea, please explain it to me.
I would like to think that in most cases I'm in favor of whatever is going to benefit society as a whole, but in some cases that means that a minority will suffer. We don't always consider that. In this case it seems to me that our lives are at stake, and maybe single-payer would be great if there were proper ME research, and treatments. I may be wrong about this, but I'm just not convinced that any government is going to decide that allotting the money to properly research this disease and come up with treatments for 1 million people is going to be seen as a worthwhile expenditure when the foremost experts in the world--that would be Wessely, not Ron Davis, sorry--characterize it as a condition best treated with CBT & GET. Remember, Wessely's probably the most-published researcher on CFS, while Ron Davis is the guy who couldn't even get an NIH grant because not enough people there believe it's worth funding. And while I'd say Wessely is most likely a strong proponent of single-payer healthcare, or at least whatever flavor of that the NHS happens to be, I'm not sure the same is true for the NIH officials who hate us so. Who knows what they think; it's likely nonpartisan. They just don't like us & never did.
So, yes, we're making progress, and that's great, but we're also not beholden to CMRC, or NICE, or the GMC. I have heard stories about how doctors in the Midwest are afraid to deviate from unofficial attitudes that emanate from Mayo Clinic, but that doesn't stop the OMF from growing, doesn't stop Columbia. Fluge & Mella have opened new doors, but then they stumbled upon a finding that was absolutely shocking--but even so, they faced resistance from people who did their best to see the Norwegian government deny them funding. In Norway even 'skeptics' prefer the Lightning Process.
I don't know what the answer is. I do think that single-payer health care is a system that relies upon the government finding the most affordable ways to bring healthcare to as many citizens as possible. That leaves us out in the cold with nothing but CBT & GET, as it can be argued to any government body that these are the only things that it makes any sense to spend money on. That argument will lead governments to find any reason to stick with those, and they'll be able to justify it so long as PACE stands, I would think. So maybe someone else here has a better answer. In the meantime, I'd ask people to think about it, if they really think this is the best option for us. I know it's probably the best option for a lot of people, most people, but we're not 'most people.' We're in a very special, very small, and very, very potentially expensive category that nobody wants to deal with. In my view that makes us worse losers in a single-payer scenario than just about anybody. And I'm glad to have the few options I have in the US than I'd have if I were in the Netherlands or Belgium or the UK, or Germany, or France, or Spain...