New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

Nightsong said:
A guideline that both Jo Daniels and Willy Weir both signed off on is one hell of an achievement
Click to expand...

This! Exactly this!
There were of course some robust discussions, but there was considerable compassion towards patients from all quarters. The new guideline may not be perfect in the eyes of all, but I agree, it is a huge achievement.
 
Last edited:
Nightsong said:
We finally had a guideline that "both sides" were willing to sign up to; a genuine compromise. A guideline that both Jo Daniels and Willy Weir both signed off on is one hell of an achievement.
Click to expand...

Keela Too said:
There were of course some robust discussions, but there was considerable compassion towards patients from all quarters.
Click to expand...

I think that these points need to be acknowledged and communicated more, also the round table discussion moderated by Dame Carol Black. @dave30th

If some people still object to the work done by the NICE guideline committee, they also object to all those members who left the committee after they had signed off on the new guideline, and they also object to the view that the round table was a success.

I wish we could ask the round table's moderator Dame Carol Black what her take on that is.

The Round table minutes are available on the NICE guidelines website:

https://www.nice.org.uk/guidance/ng206/history

Direct link to the minutes:
https://www.nice.org.uk/guidance/ng206/documents/minutes-31

Direct link to the presentation:
https://www.nice.org.uk/guidance/ng206/documents/workshop-notes-4
 
Last edited:
CRG said:
"career development"
Click to expand...

There's a career development strand under EU funding programs - Marie Skłodowska-Curie Actions

I had a look at a few biops and it seemed more about "me" and my career. However, I'm not saying it isn't a useful development route for some research areas. Haven't looked at the UK "career development" stuff - maybe it's similar to the Marie Skłodowska-Curie Actions.
 
Snowdrop said:
Yes, though my thinking on this has developed over time. Especially when thinking about why they keep getting funding. As an aside I just checked recently and Knoop and Bleijenberg and I expect if I go back and check Crawley have all been at this 'research' and writing more research is needed (why? for them to finally get good results?) -- they have all been at it for more than 15 years. Any sensible person would expect that more of these papers are not going to yield real world help for people to get back to their lives.

But they keep being funded by various institutions that give rise to, protect and nurture them. In Canada for example -- McMaster. In the US Columbia. In the UK Bristol. In Scandinavia I'm not clear perhaps Aarhus and U of Oslo? There are other centres of course too. But my point is the money comes in house and the funders, administration all seem to want to protect this academic exercise in futility. They have there supporters in gov't adjacent institutions where politics is thought of interchangeably as science. Call it the science of getting your way.

I'm not sure what it will take for the relevant institutions to distance themselves from their creation. We shall have to see.

I had always viewed tenure as a good thing. But it seems now more a Janus coin where there is a flip side. It all depends on just how many people reject reason for personal prestige and other gains. When that number shifts too high we are left with people in authority behaving not as responsible actors in the public interest with the publics trust but as authority with the right to do whatever they like. No transparency or accountabliity.

This, if left to rot will go badly in so many ways and do harm in larger context far beyond our own problems with BPS.
Click to expand...


Not a big expert on this but I do know that it would be an unusual situation for any academic to be seen as above the usual bars/demands of producing good research and teaching/other committments. I suspect that in many institutions then good research alone can be enough.

HOW that research is judged is an important matter, however, and I know that the REF (preceded by the RAE which was more quality-focused) is the biggie but happens only 6-8yrs. Citations is one measure for papers under the REF - so of course having a set-up where a group cites their own papers is a big help in this. Impact is another that came in with the REF and suspect their news articles and various other things help there.

What I'd be intrigued to find out more is whether there are other interim 'output/quality' measures by which departments just that an academic staff member is up to snuff outside of this REF round. I know that just making sure there is 'enough output' is certainly required, but quality-wise what the criteria are of it being successful I don't know how it is defined.

I think that you are on the right track with looking into this and noting where the structural 'loopholes' are that are perhaps leading to what you see
 
Snowdrop said:
I think you are right. My mistake. I had a brief look at a few studies and there was no inhouse funding. I don't know quite where I got the idea.
Click to expand...


There may not have been in-house funding, but (I'd guess particularly where said research would be taking place at the institution) it may be that the general institutional support system for making said applications is providing help for them to get said funding. Having said that it is quite unusual for the topic itself to make a difference one way or the other on said support (admin-side) - which is likely to be linked to size of the application it would bring to the institution etc - academic freedom and all being a big part of things and if it were then I'd assume it would go through the academic side of department head etc and more likely to be due to viewing something as strategically important rather than about other things etc. I don't know if these result in 'x-funded centres or x-funded research' etc where the prestige and place that the research happens is the institution itself? these things can often comes with studentships or other jobs to go with it etc so it is, I think worth looking at what these things and individual applications actually are to work out how 'involved' the institution might be/see it as beneficial to them ie an institutional win.
 
Michiel Tack said:
I noticed that at the end of the article it says (my bolding):

KGB reports that he is one of the authors of the Cochrane review about CFS/ME and exercise therapy and he is currently involved in the work with a review based on individual patient data that is about CFS/ME and exercise therapy.

HK receives royalties for a treatment manual of CBT for CFS/ME and is currently preparing a review based on individual patient data of the outcomes of CBT for CFS/ME. ​

KGB is Kjetil G Brurberg and HK is Hans Knoop.
Click to expand...

noticed that too...:thumbsdown:: unamused: Cochrane refused to publish the IPD - protocoll. so, outside then, like descibed in the paper
Larun L, Odgaard-Jensen J, Price JR, Brurberg KG. An abridged version of the Cochrane review of exercise therapy for chronic fatigue syndrome. Eur J Phys Rehabil Med. 2016;52(2):244-252.
PubMed [https://pubmed.ncbi.nlm.nih.gov/26375519/]
 
Kalliope said:
Trial by Error by David Tuller: My Letter Responding to Norway Health Leader's Efforts to Denigrate My "Activist" Work

quote:
Since Dr Flottorp invoked my name and work, I figured the situation warranted an intervention on my part. I have sent the following letter to Dr Jong;
Click to expand...
David Tuller on Facebook:

Yesterday I received a thoughtful note from Professor Miek Jong of Norway's NAFKAM agency in response to a recent letter I'd sent her. The letter was about the effort by a leading Norwegian doctor to denigrate my work by calling me an “ME activist.”

Today I sent Professor Jong the following answer:

Dear Miek--
Thanks so much for your gracious response. It's great that you've had experience at Berkeley and UCSF!

I don't mind my work being mentioned in this debate. What I find disturbing is that Dr Flottorp and her colleagues apparently deride anyone opposing their views as an "activist," notwithstanding any professional and academic credentials or the merits of the issues raised. Moreover, they do so as if the word "activist" automatically disqualifies someone from having a legitimate perspective.

When an intervention essentially tells patients that to acknowledge having an illness or symptoms or even negative thoughts represents a failure, it is self-evident that their responses to subjective questions about how they feel are likely to be infused with an unknown amount of bias. This should not be a controversial or confusing concept for experienced investigators to grasp, but apparently it is.

Good luck holding down the fort in this debate!

Best--David
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley

Click to expand...
 
Jonathan Edwards said:
Not by me. I thought it would be more useful to write to the authors personally.
Click to expand...
Also according to their guideline for authors, ”Letters for publication in the print journal must reach us within
2 weeks of publication of the original item and should be no
longer than 250 words.” With so many things in that article which are incorrect, it’s impossible to address that all in 250 words
 
Mark Vink said:
Also according to their guideline for authors, ”Letters for publication in the print journal must reach us within
2 weeks of publication of the original item and should be no
longer than 250 words.” With so many things in that article which are incorrect, it’s impossible to address that all in 250 words
Click to expand...
Possible way round that a group of people to collaborate and each submit a letter covering one point
 
NelliePledge said:
Possible way round that a group of people to collaborate and each submit a letter covering one point
Click to expand...
The problem is that you would need 15 letters or more and they would never publish that many in response to one article, especially if you know that the editor of that journal is a PACE trial supporter who states he is against bad science yet continues to ignore all the problems of that study
 
You must log in or register to reply here.
Back
Top Bottom