Jørn Tore Haugen: "ME and relevant science"

[Andy]

With today’s available knowledge, if someone still wants to argue that ME is something that is all in your mind and/or something you can exercise yourself out of, that point of view is not based on scientific consensus. Rather, it must be understood as ignorance, ideology or belief, probably including commercial interest or professional prestige at stake.

Following the sometimes-heated debate about ME, it may seem like there are two models; one biomedical and one biopsychosocial, and that these models stand out equal against each other. Reading scientific publications on the topic, one realises that that’s not true.

Both Norwegian and English versions available at https://melivet.com/2019/09/24/me-og-relevant-vitenskap/

 

[DokaGirl]

This is an excellent article. I hope forum members of the NICE committee have seen this.

It would be great to see this article re-published elsewhere.

For example on this website, Canada's National Observer: https://www.nationalobserver.com/about



"Canada's National Observer publishes investigative reporting, in-depth analysis, solutions journalism, multi-media features, opinion and daily news coverage.

We vigorously pursue stories that seek to identify and explore problems in society. We also aggressively pursue stories about success and innovation to ensure that decision makers and members of the public are empowered to make informed choices.

We have a special focus on highlighting how governments and industry make decisions as well as the factors that influence their policies. We also strive to pursue coverage about human rights, democracy and justice, by shining a light on stories that are not always told.

CNO strives to be a leader in reporting on the new economy to deliver stories that can be used to protect public health, rights, the environment and hold governments to account on addressing and mitigating the threat of climate change.

Founded in March 2015, CNO strives to meet a high standard of ethics and to build trust and a loyal, engaged audience through transparency, accountability and evidence-based reporting.


We are committed to producing journalism that is accurate, fair and complete, and our journalists strive to act with honesty, transparency and independence, including from conflicts of interest. We correct errors and provide significant clarifications quickly and prominently. You can find our ethics policy here." (bolding mine)



I found the author of this ME article on Twitter;I am not on Twitter, so cannot contact him about re-publication.


Also, @dave30th, are you aware of this Canadian online publication? It might be right up your alley.

 

[Barry]

The researchers behind some of the most criticised studies have also, surprisingly, argued for why the definition of «healthy» has been altered and impaired during some of their studies; «-For the results to better match clinical experience». The results have been adjusted to what was expected in advance. That is not research, but an exercise in confirming one’s own beliefs. The statement has been massively criticised.

In a nutshell.

 

[DokaGirl]

Dr. Ron Davis said on this thread, one tries to disprove their hypothesis - that's what science is (paraphrasing): https://www.s4me.info/threads/youtu...date-on-me-cfs-research-september-2019.11468/

 

[rvallee]

In a nutshell.

Literally the equivalent of "it works on my machine" in software development.

Client comes up with a blocker bug, makes it impossible to use the software as intended. Developer chooses to dismiss bug because it works in their dev environment and so can only be a PEBKAC (problem exists between keyboard and chair).

Normally: developer gets fired for gross incompetence if they just keep insisting the bug cannot possibly exist and refuse to fix it. The worst developers out there have a negative effective RoI, typically creating more work than they achieve. Looks to be the same in medicine.

The software development industry is renowned for failure, overruns and poor understanding of client demands. Turns out it still is 100x more mature, professional and capable than medicine despite being much younger. That's a very sobering realization. VERY sobering.

It's also been a harsh lesson to learn that it's not enough to ask developers to test their own software because they will only test potential problems they know can occur and anticipated. It has to be independently tested and certified by QA staff. Bias is a universal problem. To ignore it in medicine is serious malpractice.