Norwegian guidelines in development: help with a literature search

Oh you need to highlight that subjective outcome indicators are unreliable - Google something like "measuring activity levels Actimetry versus self reported outcomes" - also check out the PACE results-
"According to these results − 354 m after CBT – patients would still be ill enough to be put on the waiting list for a lung transplant (⩽ 400 m) (Vink, 2016). No one in the trial achieved actual recovery, where symptoms are eliminated and patients return to pre-morbid levels of functioning (Kennedy, 2002), which is the general public’s understanding of the meaning of recovery (Vink, 2017a). "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/

 

Why bundle other kinds of "chronic fatigue" into the guidance for ME? Why not into MS or some other condition? Rhetorical...
I worry that bundling "chronic fatigue" into the guidance for ME could at best confuses doctors by conflating ME as chronic fatigue and could harm pwME with inappropriate recs

UpToDate, used by US doctors, has separate guidance for ME as does NICE. Any chance of getting them to develop separate guidance for ME based just on the evidence that actually assessed ME cohorts?

 

So this is (Norwegian) guidance on fatigue i.e. rather than ME/CFS?
@Medfeb
@Lena Kjempengren might be a good idea to check the outcomes from the Aberdeen University study on fatigue - (again?) this relates to fatigue generally?
https://www.abdn.ac.uk/news/16714/#:~:text=Innovative research using AI led,simply because of modern lifestyle.

 

@Lena Kjempengren it occurs to me that this* could be a useful way to rebut CBT i.e. if the outcome is this poor then how could it be justified to fund it using public money/tax?
Also, check out the thread on this site re this** "ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who also has ME) to develop a clinical assessment toolkit in collaboration with people with ME (PwME)". I recall that Tyson had some phrase about a "meaningful" indicator - actually it's subjective & misleading! Jonathan's highlighted [thread on this site] that arthritis has a combined indicator (subjective & objective components) so perhaps get that reference and weave it into your response?

*"According to these results − 354 m after CBT – patients would still be ill enough to be put on the waiting list for a lung transplant (⩽ 400 m) (Vink, 2016). No one in the trial achieved actual recovery, where symptoms are eliminated and patients return to pre-morbid levels of functioning (Kennedy, 2002), which is the general public’s understanding of the meaning of recovery (Vink, 2017a). "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/
https://www.s4me.info/threads/norwe...-a-literature-search.38929/page-2#post-538508

**https://meassociation.org.uk/research-clinical-assessment-toolkit/

 

@Lena Kjempengren you could highlight the rituximab trial methodology (all clinical trials are registered). Specifically highlight that the trial used actimetry (Fitbit type devices) to measure activity levels pre&post intervention (rituximab). That trial is roughly 10 years old - so if Norwegian researchers could do this 10 years ago then why can't the psychological folks do that 10 years later +++ technology has improved, cost is lower ---
The psychological folks have used the argument that they aren't real scientists like medical doctors --- should be subject to a lower threshold/burden of proof. Actually folks on this site (like Graham & Jonathan) have highlighted that these psychological "treatments" can cause harm -- sure someone here could give you a link to Grahams (published) research.

 

@Lena Kjempengren re the harms that the psychological approach can bring this quote (from a nurse) comes to mind- "The bastards don't want to get better"...*
Could you imagine the outcry if cancer patients were sent to CBT --- penalty is to stop their social security benefits --- and the take home message was "if you want to get better then you will"!
Professor (Psychology) Brian Hughes has published on this & he's on this forum/website.

*https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132

 

America has some good guidance written 2023 by clinicians with experience with m.e , that is not so much relying on 100% gold standard evidence because we don’t have that for m.e because there hasn’t been the research or funding but they do have small studies, clinical experience and anecdotal reports, which have to have some weight given the only alternative is to tell Very sick patientS to go away with nothing At all but pacing , ADS & pain relief. https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext in the UK we have a state funded health service which puts extra limits on what could be recommended et cetera and is why we have essentially nothing recommended over here in our the NICE guidelines, but that doesn’t mean the other countries with a more open health service can’t use a more different way of devising best practice.

 

@Lena Kjempengren , re potential harms, @Tom Kindlon has published on this.

 

I have to say I’m a bit worried about this review. Specifically, I’m worried that it’s going to be used as an argument to provide relatively meaningless treatments just because some patients in mostly flawed studies said that they liked it.

There’s a summary in English in the full report, but it’s too long to post. The conclusion is below, where they seemingly assume that the interventions should be used, and that the challenge is more about figuring out how to best provide them for different groups. Despite the fact that the review didn’t look at the efficacy at all, only the patient’s experiences.

I hope my interpretation is wrong, but I’m not holding my breath..

 

Reme already has a study on hypnosis of breast cancer patients before their surgery. With funding from Kreftforeningen! I would assume they would be opposed to BPS BS, but that’s apparently not the case.

 

I doubt it is wrong - same old paternalistic stuff.

 

After reading the conclusion again, I noticed that the only said there’s a need to figure out how to best deliver interventions to different groups, not how to best deliver these interventions. Not that the BPS lobby has a good track record of honest interpretation of statements..

 

It seems rather generous, in fact. This is obviously a fixed process, with no intention of looking into anything of relevance.

Even the Spanish Inquisition was far more... inquisitive. And the biopsychosocial Inquisition is always expected to stick to its dogma.

 

My impression from listening to the patient representatives that actually sit in the room with the people involved in the new guidelines, some of them are genuinely trying to do good and neutral work.

I don’t think we should jump to conclusions of things being rigged on purpose just because the outcome turns out wonky. It might have been incompetence or a bad instruction.

Don’t get me wrong, plenty of BPS studies are rigged.

 

Source: Norwegian Institute of Public Health (NIPH, FIH)
Date: March 25, 2025
Authors: Hval G, Vist GE, Giske L.
URL: https://www.fhi.no/en/publ/2025/Map...-of-chronic-fatigue-without-a-known-etiology/

Patient experiences with treatment of chronic fatigue without a known etiology: An evidence and gap map -------------------------------------------------------------

On commission from the Norwegian Directorate of Health, we identified and present an evidence and gap map of qualitative research on patients' experiences with treatment of long-term fatigue without a known etiology.

Download: 'Pasienters erfaringer med behandling av langvarig utmattelse av uklar arsak: Forskningskart' [Patients' experiences with treatment of long-term fatigue of unclear cause: Research map], https://www.fhi.no/contentassets/82...v-uklar-arsak-forskningskart-rapport-2025.pdf

Key message

On commission from the Norwegian Directorate of Health, we identified and present an evidence and gap map of qualitative research on patients' experiences with treatment of long-term fatigue without a known etiology, including CFS/ME, long-covid and fibromyalgia when fatigue is a main symptom.

We conducted a literature search in seven sources in July and August 2024. We assessed titles and abstracts for 6,035 identified publications against our inclusion and exclusion criteria. 269 were considered potentially relevant and were reviewed in full text. Thirty-five studies and six protocols were included and coded according to a predefined framework. Some studies included multiple patient groups and assessed multiple treatments, those are counted multiple times. Divided into patient population we found: CFS/ME in 28 studies, long COVID in nine studies, other persistent fatigue in seven studies and fibromyalgia where fatigue is a main symptom in three studies.

Long-term fatigue without a known etiology that does not fall under CFS/ME, fibromyalgia or long-covid is described in a small proportion of the studies considering that it is the largest part of the relevant population.

The predefined treatments that patients have shared their experiences with are divided into the following four main categories: activity-based interventions (21 studies), psychological approaches (20 studies), learning and coping centers/training (ten studies) and rehabilitation (seven studies).

This research map does not present results, nor does it assess the risk of systematic bias in the included studies, their results, or their reliability.

 

Source: Norwegian Institute of Public Health (NIPH, FIH)
Date: March 25, 2025
Authors: Hestevik CH, Langoien LJ, Bergsund HB.
URL: https://www.fhi.no/en/publ/2025/Pat...atment-of-long-term-fatigue-of-unclear-cause/

Patients' experiences with the treatment of long-term fatigue of unclear cause: a qualitative evidence synthesis
----------------------------------------------------------------

The objective of this QES was to explore patients' experiences with treatment interventions for prolonged fatigue of unclear cause.

Download Pasienters erfaringer med behandling av langvarig utmattelse av uklar arsak: en systematisk oversikt over kvalitative studier. [Patients' experiences with the treatment of long-term fatigue of unclear cause: a qualitative evidence synthesis] https://www.fhi.no/contentassets/9e...ig-utmattelse-av-uklar-arsak-rapport-2025.pdf

Key message

We have summarized qualitative research on patients' experiences with interventions for long-term fatigue of unclear cause including CFS/ME, fibromyalgia, post-COVID-19 syndrome, and other prolonged fatigue conditions. The interventions included psychological, learning, coping strategies, and activity-based approaches.

Key findings across interventions show that:

* Many valued a holistic approach addressing both physical and psychological aspects and sought recognition of long-term fatigue as a chronic illness. * Family involvement provided support and security, with many wanting relatives to receive more information. * Group therapies offered support and understanding, though large groups sometimes hindered sharing of experiences. * Tailored and realistic information improved patients’ understanding and coping. * Practical tools and coping strategies were seen as useful. * Symptoms, time constraints and life circumstances made it difficult to apply new skills * The therapist's knowledge, empathy, and relational skills were crucial for positive experiences. * Combining treatment methods was appreciated but sometimes experienced as challenging.

There is limited research on specific interventions and patient populations. Further research is urgently needed to explore how interventions can be tailored to meet the needs of different groups.

Summary

Introduction

Chronic fatigue is prevalent in the population and can occur after infections such as COVID-19 or mononucleosis, other life stressors, or without a known cause. Treating this condition is challenging, and there is limited knowledge about patients' own experiences and preferences regarding different treatment approaches. This qualitative evidence synthesis (QES) aims to contribute to the revision of the Norwegian Directorate of Health's guideline for the assessment, diagnosis, treatment, and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The revised guideline will address prolonged fatigue of unclear cause, including CFS/ME, fibromyalgia with fatigue as the main symptom, fatigue resulting from post-COVID-19 syndrome, and other fatigue conditions with unclear cause. Fatigue associated with known conditions (such as stroke, rheumatic disorders, depression, etc.) or as a consequence of treatment (e.g., cancer treatment) is managed within diagnosis-specific pathways and is therefore not part of these guidelines or this review.

Objective

The objective of this QES was to explore patients' experiences with treatment interventions for prolonged fatigue of unclear cause. The relevant interventions include activity-based therapies, rehabilitation measures, psychological approaches, and learning and coping interventions.

Method

The assignment consisted of two deliverables. Deliverable I was an evidence gap map of existing studies in the field. Deliverable II is this QES of patients' experiences with treatment interventions for chronic fatigue. A systematic search for relevant studies and screening of title and abstract were conducted as part of Deliverable I, with the methodology described therein.

We conducted independent full-text screening of studies identified in the research map against our inclusion criteria. Subsequently, we evaluated the methodological limitations of the included studies using a design-specific checklist. Data were extracted from the studies, and the results were synthesized thematically. Finally, we assessed the confidence of our findings using the Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach to evaluate how likely the findings are to represent reality concerning the topic and context in which they are to be applied.

Results

The research map included 35 studies. These were screened against our inclusion criteria, resulting in the inclusion of 17 studies in total. The studies involved 306 participants aged 12–74 years and were conducted in the United Kingdom, Norway, the United States, Finland, and Australia. Most studies focused on patients with CFS/ME, while a minority involved long COVID, and one study included patients with various diagnoses, most of whom reported prolonged fatigue. We identified no studies with patients with fibromyalgia, and very few studies on children and adolescents. We identified some research on the experiences of cognitive behavioral therapy (CBT) for people with CFS/ME, but the evidence base for the other interventions was very limited. The findings for most interventions were therefore fragmented and uncertain. For some interventions, no studies were found. However, there were some recurring themes across interventions and patient populations that appear central and important to highlight.

Findings Across Interventions and Diagnoses

Patients valued a holistic approach that acknowledged both the psychological and physical aspects of prolonged fatigue. It was important that the condition was recognized as a real chronic illness (moderate confidence). Many felt that treatments overly focused on anxiety and depression, especially in contexts where stigma around mental health was prominent. Involvement of family and friends in therapy was considered valuable, providing emotional support and better understanding of the patients’ situation (high confidence). Group therapies offered social support and improved understanding of the condition, but large groups could hinder the sharing of personal experiences (moderate confidence).

Tailored and easy-to-understand information about the condition and treatment options was emphasized as crucial, and many appreciated practical tools such as breathing techniques, activity logs, and mindfulness (high confidence). These tools were useful in daily life, although severe symptoms and external factors like work and time constraints often posed challenges. The therapist's knowledge, empathy, and ability to build a supportive relationship were critical for a positive treatment experience (moderate confidence), and realistic expectations of treatment were highlighted as important for engagement. Complementary therapies contributed to coping and improvement for several participants but combining different treatment methods could be challenging. For some, long travel distances to treatment posed a barrier, leading to fatigue and limited participation (low confidence).

Discussion

This review of research on interventions for long-term fatigue revealed a limited and fragmented evidence base. Most studies addressed CFS/ME, while only two studies investigated post-viral fatigue (late effects of COVID-19).

The best-covered interventions were CBT for individuals with CFS/ME, while there were very few studies on the other therapeutic approaches we sought. Studies on experiences with pain reprocessing therapy, amygdala and insula retraining (AIR), hypnosis, meditation, and mind-body processing were missing entirely. We found only one relevant study on pacing, but it had only been published as a preprint and was not included in this review. Many interventions were relatively short-term (ranging from a few sessions to a few months), while the disease course for prolonged fatigue often spans several years, which may limit knowledge on the long-term utility of the interventions.

It is also likely that the most severely ill patients may often be excluded from such studies. Participants included must have a certain level of functioning to take part, making it difficult to generalize findings to bedridden or severely disabled patients. Post-exertional malaise (PEM), a central factor in many patients’ illness experience, is rarely addressed in the studies. This represents a knowledge gap that must be addressed in future research.

The confidence in findings for specific interventions was varied. We had, for instance, moderate confidence in most findings on CBT, while findings on ACT, online coping strategies, and digital consultations had lower confidence due to methodological limitations and insufficient data. For the Lightning Process, we generally had high confidence in the findings, but the evidence was based on a limited number of studies.

A strength of this review is the systematic approach to searching and analyzing the literature, as well as collaboration with experts and stakeholders. However, there are weaknesses, such as the lack of representation of disease severity, socioeconomic status, and cultural factors among the patients, as well as well as the fact that many of the treatments were of short duration.

There is a great need for more research that includes diverse patient groups, addresses PEM, and examines how treatments are experienced over longer treatment periods. To meet patients' needs, it is crucial to prioritize individually tailored approaches, where treatment and support are customized based on the patient’s symptoms, functional level, and response over time. Frequent evaluations throughout the treatment process are necessary to ensure that interventions have the desired effect and do not worsen the condition.

Conclusion

Our findings highlight the need for holistic and interdisciplinary approaches that recognize both the physical and psychological aspects of prolonged fatigue. Support from therapists, family, and peers, as well as access to practical tools, contribute to coping. At the same time, the need for flexible and tailored solutions, including digital alternatives, is emphasized due to challenges such as disease severity, cognitive difficulties, and practical barriers. The evidence base is fragmented, with limited research on the different interventions and few studies including post-viral fatigue, and children and adolescents. There is a significant need for further research exploring how interventions can be adapted to meet the needs of different patient groups.

 

So, 100% useless. Masterful gambit, sirs and madams.