Discussion in 'General ME/CFS Discussion' started by unknown virus, Dec 30, 2016.
It's really weird.
I think it is because ME got branded as a somatoform disorder a long time ago by unscientific research and those in charge of funding have stuck to this unquestionably until recently. There are people here that know the history a lot better than me and might give a more detailed history.
Funding in several countries has just started to increase, so I think things are finally on track.
@unknown virus - I am not sure if government you are referring to a particular government.
In terms of the US - you might find 30 Years of Disdain worth reading.
Prior to the outbreaks in the early 80s in the US, ME was considered a rare disorder. In 1970 it was first called hysteria. From the early 80s the movement to call it psychosomatic took off. Through much of the 80s it was also considered uncommon, though the official estimates kept going up.
The short answer is a low regard for value for money in this area of research. As the numbers kept climbing this attitude was hard to crack. There were, if I recall correctly, two Congressional inquiries in the US over CDC misallocation of funds.
From my reading the problem with US Congress etc. has been lack of awareness for the most part. The primary agency involved for much of it, the CDC, has a bad history however. The NIH has failed to step in. There are signs this is turning around though, but we will be more certain about this later next year.
Few governments around the world have spent even like the amount the US has though. If the US funding is very poor, most of the rest of the world has been dismal. I wonder how much funding there has been from the world's top 20 economies? Norway might be at the top right now, on a per capita or per patient basis.
This is a disease or collection of similar diseases, or spectrum, that is arguably costing the world a trillion dollars a decade. It still gets chump change to fix that. Apparently the world losing a trillion dollars is not a major issue, but countries spending money to help their own citizens is.
Much of the reason for this problem, though I cannot say all of it, is extremely poor hypotheses arising from the UK that have been heavily promoted without sound evidence to back them. I call that psychobabble, and most of it is about unproven psychogenic hypotheses being treated as sound theories.
Dogma. Legacy. Profits. Liability.
Because spending money on things that have less of a 'chance' of a resolution are not economic.
Yeah, I find this bizarre, crazy, crazy, crazy.
Add "Lethargy, stupidity, and incredible resistance to move their arses"
Also it's standard problem that any Human "organization", larger, more powerful it gets especially, has severe inertia (1) against change or admitting it screwed up.
I also believe some of this all started back in the 1960s because of workers and others affected by chemical and biological manufacturing and accidents, after which governments (especially the UK) had deliberate policy of using bureaucracy to deny any such claims or help victims.
So when folk started showing up with M.E. and similar-seeming illnesses triggered by exposure to organophosphates, the politicians/bureaucrats slammed the shutters down even harder just in case they were caused by escaped biowarfare agents (which would have catastrophic implications for the venal political parties who only care about re-election and nothing else),
note, the biowarfare possibility is NOT "silly", it's an extreme peril to our entire world. See the two catastrophic accidents Russians had, and insanity of America having over 300 labs working on such things today (those numbers guarantee accidents and many already have happened with anthrax but are hushed up. The media is much more interested in Kardashian's booty than real issues, ugh.)
with organophosphates, exposing this health risk could upset the very cushy and corrupt relationships many politicians had made with the chemical companies. hence they don't care if airliners crash, crew knocked unconscious or paralyzed by organophosphates, farmers and passers-bye gassed by pesticides, etc
that is also another reason for the denial and cover up, if it was ever proven that hundreds died in airliner crashes because of such chemicals and the bureaucrats and politicians and corrupt airliner company bosses had covered it up....
thus, overlapping "conspiracies" and corruption work against us.
(1) damn took about 10 minutes for me to remember the word "Inertia", that is SO annoying! takes "on the tip of the tongue" to ludicrous extremes
Sigh, memory is so wrecked.
As discussed in my Greenwashing blogs, loosely based on the book Skewed.
I read an interesting biography a few years ago about a scientist Alice Stewart titled The Woman Who Knew Too Much. She studied radiation risk in the 50's and was a major witness in court cases defending people damaged by radiation.
So why is so much money spent on Cancer?
Because there have been plenty of breakthroughs & treatments for cancer
Additionally its more of a 'physically observable' disease, so easier for government ministers to understand
Classic case of false economy - saving pennies (that would be spent on solving the problem), while the problem is costing dollars.
Spot on. Additionally, you will be more likely to get false economies under a right wing (conservative) government than left wing (progressive), because of the ideology.
If you want me to justify this by referencing the mountain of peer reviewed science on political ideology, while using a logically constructed argument, I will quite happily do so.
The only thing is, it will upset the right wing voters on here & could derail the topic.
The CIHR (Canadian institutes of health reseach) just recognized ME as a serious disease and allowed two catalysts grants for research on ME. A few weeks ago.
5th paragraph if you open the newsletter.
Under a government that represents the 'left' - is this my confirmation bias.......?
Well, resolution to me would be cures. Maybe some Cancers have been cured?, but still a rather deadly!
Governments have failed us everywhere, whether left, right or centrist. I think both left and right can be appealed to, though the primary arguments to focus on might be a little different. For example I don't think the US Congress failed us much, the problem has been a lack of organized lobbying. The institutions, especially CDC, are a different story. Yet they operate under both left and right governments over time.
I think there are indeed some serious ideological issues, but much of that is outside the scope of traditional left/right discussions. I think some of it is economic, and some social theories, and some about the loss of quality journalism, and so on. There are plenty of things to blame. In certain economic and political climates I do think discussing ME and CFS can be more difficult, but I am not convinced these are along left/right lines.
The insidious merging of unproven economic theory and broad political agendas, which I have seen in both left and right governments, at least in Australia, create the climate that allows bad decisions about ME. Poor and biased journalism compound this.
What is happening now has the power to transcend this kind of politics. Reproducible quality science is changing the story. I think with most governments we should be able to get traction over time. Our problem there is of course made worse by how many of us are so very sick. The issues are massively under-represented in lobbying.
Now social agendas tend to be a little different, such as support of government funded medical and social care. Yet we saw in the UK that this was an issue on all sides of politics. I think we have to address failed politics on these issues. I do however think that financial and other vested interests will oppose the kind of change necessary, but that is another, deeper, story. To deal with that would require focusing on individual politicians, organizations (especially corporations) and their boards and stockholders. Politics is messy.
Misquoting badly - to err is human, to really stuff up is politics.
I did not study politics much until getting sick, pay more attention now. But still hold out more hope from Private sources, maybe more likely to get closer to a "cure", think Gov't would not be as good in that regard. Although it would seem they would have more incentive, if they could get us back to work Full time.
Private interests usually don't spend the millions required until they know enough about the subject to make good investment decisions. Getting to that point is the role of private foundations and government. There is positive expectancy around the idea of pharma getting involved, as of 2016, because the science had advanced enough that they could see an end game.
The role of government is different from pharma, but its not either or, they are better at certain things. I hope to see drug therapies appear in the next few years.
What many research institutions do is patent anything that might be interesting, even before they have the proof. Once they have the proof they often team up with an experience private concern that can bring it to market effectively. Different roles, same tableau.
Where the basic science is weak and underfunded we need government. Once things are understood enough then private organizations get interested. I expect to start seeing more researchers working with pharma, more and more, over the next few years. At least if we make breakthroughs.
I think this is lost in many scientific agendas. The push toward highly focused research, with commercial application, is a stage in the process. Applied science is not the whole process.
Drugs like Rituximab are about out of patent world-wide. Pharma does not have the financial incentive to really deliver it. Yet with one drug demonstrated to be effective (if that happens, ask me this time next year) they will see a market open, and start looking at other things.
You can also try a Google Site Search
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