Steve Chalmers

Quite relevant, and I applauded it when first published

ME/"CFS" is only one (maybe two) of what I counted one day as two dozen complex chronic illnesses whose mechanisms medicine simply doesn't understand...

or simply cannot occur as patients experience them if current medical theory is correct

PACE seems designed to write into the peer reviewed medical literature conclusions which provide cover for payers of disability income to reject every claim for ME/"CFS" because it can be cured by exercise and a harsh talking to.

Methods were changed when the data did not support that conclusion.

PACE was not just paid for, but assisted in many ways, and had its results amplified, by a set of payers of disability income and their ecosystem of consultants, not just DWP in the UK, but worldwide.

Yes, this was a hard read.

I remain convinced S.W. is a vector for disinformation, not a scientist. A tool, not a principal.

My only question is, is he a prejudiced "true believer" being used by the special interests with $trillions at stake, or knowingly conveying their talking points?

taking the word "Chemical" out of the name stops pointing the blame for what's happening at the chemical industry

In the end, the renaming wasn't of much consequence. Flooding the peer reviewed literature with papers pointing to psych/anxiety causes created illusion of consensus. That was enough.

But think about it: the chemical industry wanted to insulate itself and its customers from lawsuits claiming that injury from chemical industry products had caused Multiple Chemical Sensitivity disability (sometimes total disability) in people

"Idiopathic" means we have no idea what causes it
and

The original members of the session all walked out when they realized they were outnumbered and the session was being hijacked, and history was of course written by the victors.

The influence of the nonprofit was sufficient that IEI was used as a neutral name for a decade or two after that

...hijacked a very small sub session -- a handful of people from around the world in a conference room for a few hours -- at a UN sponsored science conference, to use the name of that session as the origin of renaming "Multiple Chemical Sensitivity" to be "Idiopathic Environmental Intolerance"

A second point:

You are right about names. A set of advocates, working for or more broadly funded by grants or consulting fees from a nominal nonprofit funded by the chemical industry in the 1990s to "make Multiple Chemical Sensitivity go away" for litigation defense purposes, hijacked a...

Erik doesn't think much of my ideas and my own armchair activism. That's OK.

And he's so angry at science for its choice to work from selected facts and political hypotheses, rather than the messy facts on the ground 41 years ago, that he's hard to interact with.

But he's not getting any younger

I also think Erik has in his head a Rosetta Stone for a small set of "controversial" complex chronic illnesses which have baffled medicine and medical research for 50 to 100 years.

Not for the answers. But to learn which pieces of science and medicine consensus need work (frame the problems wrong)

I think there was a special interest, with a lot of money at stake, already manipulating the science during the debate which ultimately named "Chronic Fatigue Syndrome", pushed the "it's just fatigue" narrative to the public and more importantly practicing physicians and research policymakers

If you ever want to get first hand witness data, activist and firebrand Erik Johnson was a member of that cohort for which the name "Chronic Fatigue Syndrome" was coined, and is apoplectic that the physicians/scientists on the scene 41 years ago discarded key facts which did not fit their hypothesis

A couple of observations you should be skeptical of, from a retired computer designer whose family suddenly got a "controversial" complex chronic illness when our sick house hit crisis 29 years ago.

First, the name Myalgic Encephalomyelitis was coined long before the Lake Tahoe cohort 41 years ago

That's enough motivation for a single private disability insurer to put a handful of people to work guiding the medical profession, policymakers, and the general public to disbelieve ME/"CFS" exists, and to disbelieve the lived experience of patients

I think that effort started 40 years ago

If ME/"CFS" were fully recognized, just providing disability income and care worldwide to the truly disabled would have lifetime costs of about US$5 trillion

Long Covid adds another US$10 trillion

Even the national programs simply can't pay. Private disability insurers would all be bankrupted

“It's difficult to get a man to understand something when his salary depends on not understanding it." -Upton Sinclair

There are about two dozen complex chronic conditions medicine simply doesn't understand, and has a history of psychologizing at least as far back as "Neurasthenia" in the 1880s

Once that is done, that same special interest can blanket the medical profession with PR, and focused advocacy can be brought to bear on key policy people (think the emotional reaction to ME/"CFS" so entrenched in NIH and CDC all the way back when Osler's Web was written)

Teach emotional beliefs

Note that it only costs a special interest facing staggering costs (litigation liability, disability income) at stake about US$10 million to carefully design and fund research which, once published, creates the illusion of consensus that a condition medicine doesn't understand is always psych

A pushback on this was one of the sections of the US budget which Elon went nuts at the bird place on (probably because another section impacted his business). The PBM section was not restored in the final deal. Sigh

I've bought CPAP parts open market for 10 years, to avoid fragrance contamination

What this does is cause the patient to spend a great deal more of their deductible than they would at the "free market" price of the drug or device, while the PBM takes a cut and in effect the insurer and pharma co split the extra money the patient paid

There seems to be a game afoot in the US, to move money from the pockets of patients to the pockets of insurers

"Pharmacy Benefit Managers" are the red flag this game is being paid

The game increases the price of some drug by (say) 5x, but then the manufacturer gives the insurer a huge rebate

Good to see you here.

One of the tricks here is there's no algorithm to feed you, so finding some starter packs (just do an auto follow of everyone in the pack) in your areas of interest is a way to jump start your feed

Oh, and the culture here is block at the slightest hint of a troll

Just an observation

People in the red states where there were plantations and slaves were voting against their own interests and for the interests of that era's plutocrats even before the Civil War

It's tradition to entrench the (relative) wealthy, at the expense of everyone else's prosperity

Ummm...I think the best characterization of today's basic AI is a "plausible answer generator"

Where else have we seen those?

Autocomplete

A student making up an essay due tomorrow without having actually done the research

And a certain politician who makes up "facts" in the moment

Not useful.

There were oligarchs in the US 1880-1910 who thought they were above the law and should be running the country, too.

They were brought to heel in two phases: Teddy Roosevelt and the trustbusters, then the New Deal and its taxes

Elon et al don't pay enough taxes. We need legislation to fix that.

Health care is a public good

Extractive capitalism (feral capitalism, predatory capitalism) must never, ever be able to touch a public good. If it does, perverse things happen.

America’s Right-Wing Propaganda Problem Might Be Terminal | Dame Magazine America’s descent into mass delusion isn’t happenstance. The demise of courageous journalism isn’t a happy accident. Its replacement with engagement-chasing infotainment and propaganda isn’t an error....

Over at Dame Magazine I wrote about how America's right wing propaganda problem--and our bipartisan refusal to take media reform seriously--might very well be terminal:

Strikes me that the (expletive deleted) presidential immunity ruling, which Roberts thought was a brilliant solution to a very hard problem - and the rest of us found blatantly contrary to both the intent and the words of the Constitution - could be explained by seeing only through the captors' eyes

IMHO judicial capture of the Supreme Court is so complete, and has been for so long, that the Chief Justice can only see what's happening through the eyes of those who achieved the capture, and not through the eyes of the legal profession or the general public