Cognitive Behavioral Therapy Improves Physical Function & Fatigue in Mild & Moderate CFS: A Consecutive RCT, 2021, Gotaas et al

I don't blame Saugstad, I blame the media but we have been accidentally thrown under the bus so many times and for reasons that are because our advocates are pleasant, polite, considerate and reasonable people where the media treat this like a gladiator arena.

It's like we need advocates who've passed a media boot camp before they go out and speak.

It's all political.

 

Except, when we do turn to the media boot camp style of advocacy, we are called militant and dangerous. The BPS people own the narrative in Norway, and it takes a really huge effort from several sides at once to get the truth out.

Perhaps the decision by the national research ethics committee to reject the LP study proposal could be a stepping stone. But, unfortunately, there is not any associations big enough to take this on atm.

 

Actually, you bring up a point I hadn't considered. Although I see how you got there. I tend toward brief responses.

My thought was that boot camp would teach advocates how their words are used and to uh here I'm stuck for a word, to UNnaive them of how the media works. I didn't mean to join the gladiator fight, I'm quite frankly horrified by that form of journalistic click-bait.

But I think that many especially older people still think of media as reasonable and looking to here out both sides as opposed to framing something for either controversy or to support where their bread is buttered.

 

I wholeheartedly agree with your wishes. Perhaps what we need is a small organization or someone who that trains ME associations and other advocates in "how to reach the media with your stories", "how to gain the trust of journalists" and "how to change the media created narrative about ME"?

I really liked the ME Action video on youtube "How to turn your MP into an ally".

https://www.youtube.com/watch?v=gUg3q-kGwHs

Something like that one, just based on media and social media theory instead, could be a really helpful tool for all of us.

This is out of my turf, though, as my specialty is in science and innovation. So I could perhaps be a part of the group setting this up, but need a whole lot of media experienced people to stay in the project to make it work.

(Suddenly the topic of the thread derailed, though - might be time to continue this on another, more appropriate thread)

 

Maybe #MEAction would consider producing a video to help advocates who speak to the media.

@Gecko

 

I'll deffo take the idea back to #MEAction @Snowdrop and @tomnext.

Can't make any promises as capacity is low atm, but I do see this as an important area.

 

Thanks a bunch, @Gecko

Just getting the idea out there might mean someone will take hold of it and create something useful. Worth a go!

 

The research news site forskningno also had an article based on this Dagbladet article. This was once again shared via another news outlet ABC Nyheter. ABC Nyheter shared the article on their Facebook page and a patient who says she was enrolled in the trial commented:


When I see this, I get furious! I was in this test group, and was the one who received 15 treatments. My condition worsened significantly after each appointment, and in addition, the psychologist in charge of the treatment insisted that I undergo psychological "interviews" on quite a few A4 pages, twice during the treatment, to find out if there were mental disorders causing it. Here there was zero result on it both times, to the psychologist's great disappointment. During and after the 15 treatments, the agreement was to send in papers for another "interview", which was to be sent to ntnu in a pre-stamped envelope. Here should reveal whether we had improvement or worsening. I am amazed at the results shown here, when my answers showed worsening after treatment. In addition, the psychologist in his medical records could conclude with residual work ability, after performing something that made my condition worse. Fortunately, I have a bright doctor and network in health and municipality who knew better than this psychologist and the rubbish piece of work

...

..When I went there, this was the only approved treatment in Norway, I was told, but still under trial. I considered myself lucky, because it was free. After all the conversations and appointments, I was actually shocked when I saw the journal, and what he had gotten out of the sessions. The assessment, which was in the same place, gave full credit for all points / criteria as close as one, which was also not typical. The specialist was in no doubt, and finally I had come to the right place. It was concluded with, no doubt ME / CFS. It is strange then that a psychologist who works in the same department as the specialist can come to such a conclusion and create such damage. With this, you lose confidence in research, unfortunately

(google translated)

 

A paywalled article about the study in the Swedish newspaper Expressen today.

Ny studie visar: Detta kan hjälpa patienter med ME ("New study shows: this can help patients with ME")
https://www.expressen.se/premium/halsa/ny-studie-visar-detta-kan-hjalpa-patienter-med-me/

It is a rewrite of the Norwegian Dagbladet article. Helland, Saugstad and Bergquist are quoted.

I found this bit quite funny:

"Previous studies have ?? that cognitive behavioural therapy has a positive effect on ME patients"
The bolded word isn't even a proper word in Swedish It sounds like a made-up word meant to mean "show, indicate, imply"? Is this the journalists' version of weasel words, or maybe an intern writing her first article..? (Sorry.)

(Edited to clarify that it's a rewrite of the Norwegian Aftonbladet article.)

 

Did you do this?

 

I found it at the bottom of the article

 

Merged thread

Has some sort of full-scale attack started or are these just coincidences? Very problematic article:

The National Institute for Health and Care Excellence (NICE) in the UK published a new chronic fatigue syndrome guideline.

The previous NICE 2007 guideline recommended cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for people with mild or moderate chronic fatigue syndrome based on evidence from randomised trials.

Since then, more randomised trials and systematic reviews have provided additional evidence supporting these recommendations.​

In full: https://www.express.co.uk/life-styl...symptoms-cbt-dizziness-sore-throat-joint-pain

 

I think this is the study the article talks about, it is Norwegian, hm...

Cognitive Behavioral Therapy Improves Physical Function & Fatigue in Mild & Moderate CFS: A Consecutive RCT, 2021, Gotaas et al

 

I can’t believe that anyone launching a serious lobbying campaign would rope in the Daily Express. Probably just a function of a very small news desk’s stochastic selection process for published papers to fill in the space between Diana, meteorological scares, and Brexiteering.

 

I disagree. Both the Lancet piece and this piece focus on recent studies that purportedly add to evidence for CBT (not to mention the fact the study is from Norway...). I don't think this is a coincidence. Yes, this article is sort of dressed up a standard 'information' piece on 'CFS', but the salient part is introducing this new CBT study from Norway, which isn't even linked! There is no reason why any UK paper would cover a CFS-CBT paper.

 

Once is happenstance, twice is coincidence and thrice is enemy action, as a Bond villain once said. If Trudie Chalder gets a guest opinion slot in tomorrow’s Grauniad, I’ll start to worry.

 

Literally all of their health and science coverage does just that. Not sure if the copy is written up by interns or AI these days.

 

They may be writing a lot but at this point I begin to wonder who and how many are bothering to read their self-serving musings. It never possible to see the whole picture but the milk may have soured on their opinions without science and we won't know until further on in time. It does seem that they are concerned though.

And they have adjusted their long campaign tactics over and over -- they are back to shouting our words back at us. BPS is a political ideology. Now it's us who are and so on with other observations that belong to them.

And I think some of us might not be completely comfortable with this Us and Them dichotomy. However it is not us who created the problem and it is us who suffer from it.

 

List of the churnalism from Ms Knibbs keyboard: https://muckrack.com/jessica-knibbs/articles

Today's title before the subeditors got at it: Chronic fatigue syndrome: "CBT could reduce symptoms including fatigue and sore throat" . Yes folks forget the strepsils just get a psych to CBT you and your laryngitis will be gone in 8 easy session.

There maybe a media release that's prompted the Express article (which maybe online only) but nothing shows on the SMC board and search doesn't show anything from the other newswires