Norwegian guidelines in development: help with a literature search

What a great forum this is! This is my very first post here and a bit scary, but I have a question for you:

The Norwegian health authorities are in the process of making brand new guidelines for ME/CFS and chronic fatigue with unexplained background.

They will soon start a literature search with focus on possible medical interventions/treatments for ME/CFS and the same for dietary supplements. As part of their work, they ask us, - the user organisations, for possible search terms. They also need a list of possible outcomes in connection to this. They also appreciate links to relevant articles covering this topics.

All ideas or directions to relevant resources are most welcome!

 

Welcome to the forum! .

 

Welcome @Lena Kjempengren!

I hope you enjoy it here.

The TL;DR is that:

1)

...are very different things and it'd be useful for the ME organisations to point this out. It can never be repeated too many times.

2)

There's no evidence that any treatment works, other than fake evidence from badly-executed biopsychosocial studies.

However, health authorities have a habit of liking these approaches because they're cheap; it doesn't seem to matter that they don't work and can be positively harmful. So another useful task for patient groups is to anticipate this, and collect up evidence pointing out the flaws. There's a very good deconstruction of some of it in Brian Hughes' video lecture (link below), but all of his writing on ME/CFS is worth reading.

https://thesciencebit.net/2021/03/29/off-the-pace-and-not-nice/

As is David Tuller's excellent work—link here:

https://virology.ws/category/david-tuller/

3)

And the same result. No evidence that stands up to any rigour.


I'm really glad you're here, I'm sure people will be very helpful.

 

From what you say, @Lena Kjempengren , either these authorities don't have a very clear idea of what they are doing or are asking these questions as a 'politically correct' inclusion of users.

Are you part of an organisation dealing with ME/CFS?

The answers to pretty much all their questions are of course given by the UK NICE Guideline documents, including an exhaustive literature search of the evidence.

 

The "search strategies" document from the history of the NICE guideline may be of use:

https://www.nice.org.uk/guidance/ng206/documents/search-strategies

There are long lists of the ProQuest, MEDLINE etc search terms & keywords that NICE used for their literature search.

 

Let’s rephrase slightly. There are no RCT phase 3 trials for an intervention or drug, published or not, that have demonstrated a significant effect on improving the core symptoms of MECFS.

 

I think it is simpler than that.
There is no reliable evidence that any treatment works of ME/CFS.

 

@Lena Kjempengren - you may do well to make contact with Nina E Steinkopf

https://x.com/Nina_Steinkopf

https://melivet.com/


.

 

Jonathan explains these things much better than I do (see above) but perhaps look at PACE - subjective outcomes indicated that people improved post intervention [CBT & GET]. However, an analysis of the other outcomes (objective) indicators showed that there was no change i.e. re hours worked or participation in education. So you can basically say that subjective outcome indicators [self reported outcomes/questionnaires'] are unreliable - they show you've improved when the reality is you're still stuck in a darkened room etc. Then just take the NICE evidence summary table(s) and say as per NICE these studies used unreliable outcome indicators - therefore they are discounted as unreliable.
Doing a study, with unreliable indicators, "n" times doesn't make the outcome reliable!
EDIT - Oh you could highlight that the Fluge et al rituximab (Norwegian) study used actimetry - Fitbit type devices to monitor outcome - so it is doable!

 

So I am a bit confused. Lena said the focus was on medical interventions and supplements.
It would be good to have some insight into what this actually is and whether it is being run by people who understand the problem.

In the UK we have had government working groups discussing innovations, rather than guidelines, and although some good people have been invited I am not very confident that the people in charge understand the problems involved.

 

"directions to relevant resources" - obviously the NICE review is a place to start* I've been surprised that it includes a review of "pharmacological-interventions"** and there's e.g. 1 reference to carnitine. The nonpharmacological management*** includes the Lightning Process. The information on the NICE review may include how they identified relevant material e.g. search for "ME/CFS & ---". If you can't find the methods NICE used then drop them an email and ask where that's detailed.

*https://www.nice.org.uk/guidance/ng...-reviews-october-2021-9265183021?tab=evidence
**https://www.nice.org.uk/guidance/ng206/evidence/f-pharmacological-interventions-pdf-9265183027
***https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028

 

This looks pretty enlightened.

I guess that the wording of requests e.g. 'need a list of outcomes, appreciate links' is a reasonable way to encourage everyone to suggest sources of information. In the NICE exercise, though, the initial phase of asking everyone what they thought was largely superseded by a systematic technical search exercise I think. Nonetheless, the asking around exercise may have primed people going on to the committee to see things in a broad perspective.

I worry about the mention of some treatments being good for some and some for others - that is repeatedly flagged up as a way of legitimising treatments that don't actually have any reliable evidence. And it is usually mentioned as part of a politically correct spiel. But at least with NICE it got buried largely, with the possible exception of CBT.

 

The system now in the Northern Ireland (devolved/regional Assembly) is that the relevant scrutiny Assembly committee [scrutinises the Department] posts the Department's proposals --- to implement X, --- and asks for comment.
So basically it's similar to the system Jonathan outlined i.e. the (Department's) technical folks do a literature search etc. --- but the Department's homework gets checked!
Obviously better if you get in [input into the system] early!