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How the government bought off the advocacy movement

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Thanks for taking the time to write this. Maybe we should have a new term -- "Wesselyesque".



Claiming something is "revisionist" due to "lack of context" is thoroughly vacuous. It is impossible to provide an account of anything that doesn't exhibit "lack of context" in some form or fashion or from some perspective. Any study of historical documents and accounts places prime importance on reading through a lens of proper context. That you apply this universally applicable attribution ("lack of context") to this account in isolation says far more about your need to debase and undermine the book than any failings of the book itself.

On the subject of revisionism, I should note that it's no surprise that you employ virtually the same methods that the Wessely School does in undermining (revising) the subjective accounts of others in order to shape them around their theories. Wessely and colleagues rewrite and discard the experiences of others by first denying them their own personal agency and ownership over these experiences, then re-branding and re-characterizing these experiences as inherently irrational and unstable to induce feelings of shame, before finally replacing them wholesale with their own (hypocritically, equally subjective) narratives. So the immediately experienced symptoms of patients are not in fact valid symptoms but rewritten as an over-reactive imagination of weak-willed or malingering individuals. This is literally a method of brainwashing used in various cults: undermine one's most immediate perception of reality, associate it with humiliation, then offer your own "correct" alternative as a means of rehabilitation.

In the same way, you first undermine historical reality of the patient community (experiences, memories, accounts, etc) as inherently and uniquely unstable and of unreliable agency (by isolated application of universally applicable cautions and caveats). Then you characterize these collective experiences in unnecessarily derogatory and dismissive terms: "obsessive," "like old warrior's tales of past battles endless refought on the kitchen table," and "remberances of rejected lovers." Ultimately you seem to want us to discard this collective experience and instead adopt the a-historical, authoritarian perspective (which is inexplicably and miraculously not subject to these same instabilities) of those who largely contributed to these experiences in the first place. Having to account for the past is only a requirement for the powerless. The powerful can always extoll the "virtues" of "looking forward, not backward."

Like pastor, like acolyte, I suppose.
 

satoshikasumi

Senior Member
Messages
113
Osler's Web is nicely told journalistic tale, but as history it fails for lack of context, and because of that probably deserves the charge of revisionism. It is something that is unfortunately characteristic of a lot of the patient/carer discourse about M.E/CFS - which read, at best, like old warrior's tales of past battles endless refought on the kitchen table, at worst it comes across as the remberances of rejected lovers. I therefore don't think it's surprising that some of us often want to shout -"for heaven sake it's time to move on".

IVI

I don't think patients universally embrace Osler's Web as our history, but it is one of the only narratives out there. Almost all works of history reflect the cultural bias of the historian. I think the author of Osler's Web did a decent job considering that she is not a historian of science. She was also ill to a degree when she wrote the book.

I see Osler's Web as an American political history of ME/CFS, modeled on the story of the early days of AIDS told in "..And the Band Played On".

The scientific history remains to be written. A collaborative work that accounts for the changes in scientific thought (i.e. the evolution of different paradigms) over the decades would be best. I expect this to be written when some of the major researchers go into semi-retirement.

I understand why professionals might see Osler's Web as somewhat degrading, as it portrays scientists as mere puppets in a political scheme.

In reality, the widespread view that ME/CFS must be psychological has more to do with the fact that it did not fit in with our late 20th century understanding of the human body. Medicine believed it had a fairly complete typology of diseases.

As Alan Light has pointed out in "Translational Pain Research", while scientists have long understood a lot about what caused muscles to fail when exercise, their understanding of the human experience of pain, fatigue, and the feeling of being ill is relatively primitive, and the ability to measure these phenomena even in animals is quite recent.
 
Messages
47
I have to agree with this- nature is inherently complex, making the propensity for problems great, and some of those problems themselves will be exceedingly complex. So because nature itself is not beholden to whatever the current medical/scientific understanding is, it should not be surprising under this context that effective treatments for diseases take as long as they do, and that the inner mechanisms of a disease such as ME/CFS can elude Traditional diagnostic methods as they do. The good news is, these failures reflect a current Scientific understanding of disease that has long been unsustainable for certain diseases such as ME/CFS, and as posted here recently, new understandings are all but inevitable given enough time-- the difficulty has always been, and will be, for those that are forced to endure during these 'interesting' times. The freaking Calvary can't get here soon enough!
 

Jarod

Senior Member
Messages
784
Location
planet earth
We are not talking about Government contracts - we are talking about freedom of expression and qualifications of 'belonging'. When people start to argue that someone has no legitimacy of expression on a particular subject or right of belonging to a particular group, because of who they are married to, I believe reasonable people should be concerned.

IVI
I don't know what the answer is, but allow me to make an observation.

We have a seriously flawed system that has been subverted because of the "belonging" principles you are highlighting. Sure having everybody involved is good in concept, but the reality is much different. Most people form their opinion from TV, Hollywood, or the New York Times.

Most people are very poorly informed and incapable of sorting through the facts. For each good study or piece of news, there is ten pieces of garbage to sort through in todays world. The money and the media hijacks the debate.

Most people don't have the time or inteligence to sort it ll out. We have an open system that is subverted because of this western style open democracy meme sold around the world. Which would be fine if everybody could make good decisions.

So with everybody getting a say, and with Hollywood and TV(or in medical news substitute: Science Media Centre, Wellcome Trust, Lancet, etc) controlling the debate. The end results speak for themselves.

And if you want to argue the results and intentions have be genuine for decades, please provide project management charts(Gant Charts) with goals and milestones to support your view.
 

Jarod

Senior Member
Messages
784
Location
planet earth
Centrist politics is now right wing when compared to the politics prior to 1980 or so.

So much can be traced back to the early 80's. Its quite amazing....

creeping-higher.jpg

prison chart.jpg

health%20spending.jpg
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Jarod, this timeperiod saw the rise of economic rationalism. Money can be saved by slashing waste, but not everything that gets slashed is wasteful. If its just underappreciated then it can get slashed anyway. It also saw the rise of more right wing government and attitudes. Greed is good and all that. I have not really made a study of any of this, its just an observation, but its a concerning one. This timeperiod also saw the rise of psychosomatic medicine. So I am trying to see these things as a backdrop for how psychosomatic medicine suddenly became more appealing after decades of decline. Engel's paper that drives BPS ideology was the late 70s iirc. Bye, Alex

PS I think I need to be clear that my opposition to excessive economic rationalism is not about free markets - its about government trying to act as though it were a business. Government is not a business, its role is different.
 

Jarod

Senior Member
Messages
784
Location
planet earth
Hi Jarod, this timeperiod saw the rise of economic rationalism. Money can be saved by slashing waste, but not everything that gets slashed is wasteful. If its just underappreciated then it can get slashed anyway. It also saw the rise of more right wing government and attitudes. Greed is good and all that. I have not really made a study of any of this, its just an observation, but its a concerning one. This timeperiod also saw the rise of psychosomatic medicine. So I am trying to see these things as a backdrop for how psychosomatic medicine suddenly became more appealing after decades of decline. Engel's paper that drives BPS ideology was the late 70s iirc. Bye, Alex

Thanks Alex,

Back in the 70's the Lewis Powell Memo was written, and outlines a conspiracy between business and government.

“From 1969 to 1972,” as the political scientist David Vogel summarizes in one of the best books on the political role of business, “virtually the entire American business community experienced a series of political setbacks without parallel in the postwar period.” In particular, Washington undertook a vast expansion of its regulatory power, introducing tough and extensive restrictions and requirements on business in areas from the environment to occupational safety to consumer protection.[2]
In corporate circles, this pronounced and sustained shift was met with disbelief and then alarm. By 1971, future Supreme Court justice Lewis Powell felt compelled to assert, in a memo that was to help galvanize business circles, that the “American economic system is under broad attack.” This attack, Powell maintained, required mobilization for political combat: “Business must learn the lesson . . . that political power is necessary; that such power must be assiduously cultivated; and that when necessary, it must be used aggressively and with determination—without embarrassment and without the reluctance which has been so characteristic of American business.” Moreover, Powell stressed, the critical ingredient for success would be organization: “Strength lies in organization, in careful long-range planning and implementation, in consistency of action over an indefinite period of years, in the scale of financing available only through joint effort, and in the political power available only through united action and national organizations.”[3]

Bill Moyers on the Lewis Powell Memo