Norwegian guidelines in development: help with a literature search

L

Lena Kjempengren

New Member
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 @Lena Kjempengren!

I hope you enjoy it here.

The TL;DR is that:

1)
Lena Kjempengren said:
ME/CFS and chronic fatigue with unexplained background...
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...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)
Lena Kjempengren said:
possible medical interventions/treatments for ME/CFS
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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)
Lena Kjempengren said:
the same for dietary supplements
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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. :thumbsup:
 
Lena Kjempengren said:
The Norwegian health authorities are in the process of making brand new guidelines for ME/CFS and chronic fatigue with unexplained background.
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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.
 
Welcome to the forum, it's great to have you here.
Lena Kjempengren said:
The Norwegian health authorities are in the process of making brand new guidelines for ME/CFS and chronic fatigue with unexplained background.
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That's exciting news and good that the user organisations have a seat at the table.

Kitty said:
[ME/CFS and unexplained chronic fatigue]...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.
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Yes. Although, I worked with a regional health authority that made guidance to doctors when they were faced with a person complaining of exhaustion/tiredness. It can be a good thing to have guidance for methodically working through evaluations ensuring that all reasonable possibilities are considered, rather than just having guidance for diagnosing different conditions.

They also need a list of possible outcomes in connection to this.
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Lena, what do they mean by this?
 
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!
 
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Hutan said:
That's exciting news and good that the user organisations have a seat at the table.
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Based on the name this is the one where Recovery Norway has been given two positions since they, as recovered, are vulnerable when meeting still-sick patient representatives or carers. ME-Foreldrene/ME-parents was not allowed to join since our national ME Association already had a seat, and these two organisations were believed to have the same ideas/position on the topic. The ME-Foreldrene have complained about this since they are their own organization, but been fobbed off (they have written about it in Norwegian on their website here)

@Lena Kjempengren When you say "guidelines" are you referring to something else than the new pasientforløp/care pathway? Welcome to the forum by the way! :) Fellow Norwegian here.
 
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Midnattsol said:
The stated goal of the new pasientforløp/care pathway is to increase focus on quality of life and coping in the patient population.
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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.
 
Jonathan Edwards said:
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.
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It seems like I've missed something. I hadn't seen there has been a meeting about the new guideline work in mid-april this year (there is reorganization of tasks in our official institutions including the Health Department, National Institute of Public Health and "electronic health" which may explain why there is no information to be found on the official websites).

The organisation ME-Foreldrene (ME-Parents) has written a short recap of the meeting held the 15th of april, that can be read in full in Norwegian on their site here.

The new guideline is to include "chronic fatigue" of all causes as it is supposed to be used in primary care, and primary care doctors encounter patients with fatigue and need to know what to do with them.

@Hutan In the recap from ME-Foreldrene, they've included a PICO-scheme (for those unfamiliar, PICO is a way to organise a litterature search by listing search terms in the columns "Population", "Intervention", "Comparison" and "Outcome" to aid the process and increase reproducibility by others), so I'm guessing the outcome Lene asks for is an outcome that can be included in PICO.

A quick translation of the Interventions listed in the PICO scheme for CFS/ME to be included in the search (a PICO should include synonyms for the same term, I am not translating all the synonyms listed for say GET):
- Course in how to live with the illness (*this has a specific name/term in Norwegian)
- CBT
- Psychoeducation
- GET
- Pacing
- (Interdisciplinary) Rehabilitation
- Lightning Process
- Hypnosis
- Mindfulness
- Meditation
- Empowerement
- Awareness
- Amygdala and Insula retraining program
- ACT
- Psychomotoric physiotherapy
- Symptomatic treatment (pain, sleep, nausea)
- Pain reprocessing therapy
- B12/B1/B3 (*I'm guessing this referes to the vitamins)
- Diet
- Immunoglobulins
- LDN
- Abilify
- ADHD medication
- Blood thinners
- Methylene blue
- Antibiotics
- Antivirals
- Q10
- Carnitine
- D-Ribose
- Cancer treatment tested at Haukeland (*University hospital)
- Practical help/tools

Edit: To be clear: These are interventions that can/will be looked up in the litterature search, not interventions the department think is useful.
 
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Thanks very much @Midnattsol - that list of interventions ... so much time and effort wasted, and it continues

Here's the detail on PICO for those, like me, not familiar with it:

PICO is a mnemomic device used to identify and define the scope of your research question.

P is for Patient, Population, or Problem (i.e. a disease or condition)

I is for Intervention (e.g. therapy, procedure, drug, exposure, test, strategy)

C is for Comparison (i.e. compared to an alternative intervention or an experimental control)

O is for Outcome (i.e. the consequence, effect or improvement of interest and the measurement thereof)
 
Lena Kjempengren said:
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!
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"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
 
Midnattsol said:
The organisation ME-Foreldrene (ME-Parents) has written a short recap of the meeting held the 15th of april, that can be read in full in Norwegian on their site here.
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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.
 
Jonathan Edwards said:
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.
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I just hope they stick to the open process they want. Currently it is all but impossible to find anything about this process except for information from the patient organisations.
 
Midnattsol said:
I just hope they stick to the open process they want. Currently it is all but impossible to find anything about this process except for information from the patient organisations.
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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!
 

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