Mention of ME in "Fear of Progress" article on CleanTechnica site

[ScottTriGuy]

"This is also a facet in medical science — diseases are often considered psychosomatic by default until a diagnostic test or mechanism is discovered and proven, over and over again. From heart disease to ulcers to multiple sclerosis to myalgic encephalomyelitis and more, new ideas took years and even generations to gain acceptance, yet the discredited BS from beforehand persists to this day in the minds of many."


https://cleantechnica.com/2019/11/25/fear-of-progress/


It may be helpful to all to click through to the article so that it stays prominent on their site.

 

[Cheshire]

Phew... Reading the title, I thought that was going to be yet another article accusing us of being science deniers!

 

[Snowdrop]

In the comments the author considers the possibility that commentary 'trolls' are some of the people who fear progress.

Well, thanks to this Dave Barry guy for the ME mention. Much appreciated.

 

[rvallee]

Phew... Reading the title, I thought that was going to be yet another article accusing us of being science deniers!

Yeah I was literally preparing a retort in my head. Pleasantly surprised, especially as it was framed perfectly as the exact same mistake as done with peptic ulcers and MS.

There are many comments already so it will probably get lost in the mix but I wanted to give a nod to the nod:

Pleasantly surprised that you mentioned myalgic encephalomyelitis, aptly framed as pretty much the same mistake as what was done with peptic ulcers and MS just a few decades ago. It's in fact so blatant that research into the psychosomatic model of peptic ulcers from the middle of the 20th century read almost identically to recent research into psychosomatic models of ME. It's the exact same mistake with the exact same flawed gaps in logic and basic common sense using the same circular reasoning and pre-science rhetoric of "we have shown" and "may be" and "likely", on and on for decades.

The ME patient community has been begging for research funding for decades. It is literally our #1 ask and has remained consistently so for 3 decades, since the disease became impossible to ignore (though no progress has been made since). Patient advocates are behind every single bit of progress made in this disease and are funding high-quality research despite most of us living in poverty. We have raised over $20M in the last few years to build an incredible collaborative research network with scientists sharing and working together all over the world.

And yet somehow the researchers who derailed progress in this disease have successfully managed to paint us as anti-science, without evidence, that it is us who are opposed to progress even though their ideas are straight from the early 20th century and have not changed one bit since their early days of being applied to ME in the late 80's. We are constantly asking for research funding, to establish centers of excellence, for epidemiological surveys that consistently report the same findings: the problem is enormous and everything is yet to be done. The problem is so big that several national legislative assemblies have passed motions demanding more action from medical institutions and recently the Canadian government did as well.

There is currently a social media campaign (#NotEnough4ME) from ME sufferers, and allies, demanding the NIH and NINDS directors to invest more, to expand research, to bring new researchers into the field, to kickstart the field because it is held back by politics and past failures. And yet because of a malicious PR campaign, we are maligned as anti-science even as we expose the many flaws in research that have "impaired progress and caused harm" (the literal words of a NIH report built on the largest literature review of the disease) for decades.

The default psychosomatic explanation in medicine may be the most bizarre anachronistic failure in all of science, as if physics and cosmology still accepted the god of the gaps, the belief that divine intervention is the default explanation for everything we don't understand. It fails every single time and is still doing so, even in trials and somehow that never stops the default magical explanation, usually built on turtles-all-the-way-down hand-wavy explanations, from keeping hold despite disastrous outcomes in practice.

Anyway, it's hard not to appreciate someone who can see through obvious bullshit, especially that it's the same mistake as before, always with disastrous impact. It's sadly still a rare thing.

 

[rvallee]

The author replied to my comment and learned about ME from Unrest. Advocacy works. A little. But it does.

Pleasantly surprised that you mentioned myalgic encephalomyelitis​

My pleasure

And thanks for this detailed description of whats going on in the ME world, its not a well known disease and hopefully other commenters will have learned a fair bit from your description of current events.

MS just a few decades ago​

I learned about this from the movie Unrest.

Ulcers and heart disease i have known about being discredited for years, yet people are still wedded to low fat diets and reducing stress despite their ineffectiveness.

The interesting is how other diseases are similarly maligned or poorly investigated, i had read a piece about chronic pain some years ago and in more then a few cases doctors gave up too easily, they missed a fracture or nerve damage that took years to be found by a better doctor, sometimes after permanent damage was done. There are actually a NYTimes and Washington Post sections on mysterious illnesses, usually they solve them but some are rare, others are missed by many doctors, many are misdiagnosed and many are blamed on patients.
The DSM has been a flawed publication because for many years it listed things as "diseases" that were not from Hysteria to LGBT orientations and more.

Science is moving forward but many can't escape the par adigm of progress fixing mistakes. The quote by Max Planck seems to be especially relevant here, i imagine it took generations to escape the 4 humors theory even after it was debunked.

 

[Sean]

The author replied to my comment and learned about ME from Unrest. Advocacy works. A little. But it does.

This is important.

You can never know for sure which bits of scientific critique and broader advocacy will be the important ones. Just have to keep trying and improving them, and eventually some connections will be made and a trigger point reached.