MElivet - Blog posts by Nina E. Steinkopf

I thought Garner had seen the light, according to his own blog, following talking to psychotherapist friend in the USA. Maybe they put him on to Norway but that could have been epiphenomenal.

 

Nina E. Steinkopf: Recovery Norway; a PR agency for researchers?

quote:

Both NICE and the CDC are clear that GET can be harmful for ME patients. In other words, we are in the middle of a paradigm shift in the ME field. Strong forces try to counteract this though, in order to maintain professional prestige and financial interests.

Do we have an organization similar to the SMC in Norway?

 

Steinkopf finds a lot of interesting information and I feel like I learn a lot from her blogs, but I also think that she can go too far sometimes or be insufficiently clear with her provisos. Possibly some of that's because of google's translations though.

 

New blog post from Nina E. Steinkopf titled:

Silence from Frontiers on financial conflict of interest in publications

She has sent letters to Frontiers making them aware of publications from authors with undeclared financial conflicts of interest. No action was taken from Frontiers.

https://melivet.com/2022/08/03/sile...nancial-conflict-of-interest-in-publications/

 

As always a clear and incisive piece by Nina Steinkopf.

It is so disheartening how science journals and academic institutions seem to be very reluctant to deal with lapses in standards and in ethics even when they are repeatedly pointed out.

Is it laziness, the old boy network giving special treatment to preferred authors/researchers or is it corruption? I suspect a combination of the first two, but given how resistant journals are to addressing the problems one can not but wonder over time if this is more than just taking the easy option and over reliance on perceived prestige.

 

There is a risk of misunderstanding the purpose of academic publication. It is not the dissemination of the results of properly conducted scientific enquiry. It is making money for publishers.

 

"In an era of speed and accessibility, building on the sound platform of Frontiers is like standing on the shoulders of giants. Scholars can see farther and publish with even greater impact."

"I joined Frontiers because it is transforming research publishing. The team works tirelessly with editors to streamline article management using state-of-the-art tools. This translates to high-quality research delivered, free and open, to the world."

“Frontiers is on your side when promoting new scientific areas and is a proactive partner in exploring new forms of science dissemination and discussion."

On the one hand it is on ‘your side’ and on the other 1.9 billion views and downloads means big business (see https://www.frontiersin.org/ )

 

@cfs_research is a long standing Wikipedia editor. You'll find refs to this individual in other forum threads.

 

Nina E. Steinkopf has collected numbers on how many Norwegian ME patients who actually appear to have benefitted from Lightning Process
(Spoiler: not a very impressive amount..)

Lightning Process as treatment for ME - what are the figures?

 

They used a survey of their clients, who signed a contract saying they can only say that it helped. Oh, and the data were collected by a company where Landmark works. Hell even by the standards of the tobacco industry and their lies this is excessively corrupt because it's happening with public money and institutions. This isn't a private industry, this is the damn medical profession.

In itself this is pathetic, but there are medical institutions marketing this stuff who don't mind any of this. And what it says about the whole of medicine is terrifying. Some of the same institutions who insist there's nothing to do for either ME or LC since most recover anyway. And they genuinely don't care that it makes their boasts fraudulent. They gleefully point out that 90% recover with, or without. Or whatever. Basically they don't care.

It's simply not believable for there to be such an excessive level of corruption and malfeasance here, basically not just us but all chronic health issues, without impacting everything else. It has to affect the whole, and it explains a lot about why so little is actually delivered. This is a pattern found everywhere.

 

Nina E. Steinkopf has made a compilation of ME studies of bad quality and about how they are used to influence treatment offers. This made my blood boil.

Poor quality of ME research

Quote:
Science on ME is misused. Research affects how ME patients are treated. Poor quality research leads to stigma and harmful treatment. It is time politicians and health authorities make demands for solid research methods, ethical approval and information about financial conflicts of interest.

ETA: Steinkopf's sharing of blog post on Twitter:

 

Leaving a small comment does a lot for the algorithm to push this up btw. If anyone's able to. Apparently about 50x more helpful than leaving just a like and about 25 more helpful than a retweet.