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Chronic fatigue syndromes: real illnesses that people can recover from

September 2023

DOI:10.1080/02813432.2023.2235609

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Authors:

Tomas Alme

Norwegian University of Science and Technology

Tarjei Tørre Asprusten

Anne Karen Bakken

VID Specialized University

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The ‘Oslo Chronic Fatigue Consortium’ consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases. Instead, we propose an alternative view, based on research, which offers more hope to patients. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain’s response to a range of biological, psychological, and social factors, rather than a specific disease process. Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation. Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symp toms and are supported in a gradual return to normal activities. Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.

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Scandinavian Journal of Primary Health Care

ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/ipri20

Chronic fatigue syndromes: real illnesses that

people can recover from

The Oslo Chronic Fatigue Consortium, Tomas Nordheim Alme, Anna

Andreasson, Tarjei Tørre Asprusten, Anne Karen Bakken, Michael BJ

Beadsworth, Birgitte Boye, Per Alf Brodal, Elias Myrstad Brodwall, Kjetil

Gundro Brurberg, Ingrid Bugge, Trudie Chalder, Reidar Due, Hege Randi

Eriksen, Per Klausen Fink, Signe Agnes Flottorp, Egil Andreas Fors, Bård

Fossli Jensen, Hans Petter Fundingsrud, Paul Garner, Lise Beier Havdal,

Helene Helgeland, Henrik Børsting Jacobsen, Georg Espolin Johnson,

Martin Jonsjö, Hans Knoop, Live Landmark, Gunvor Launes, Mats Lekander,

Hannah Linnros, Elin Lindsäter, Helena Liira, Lina Linnestad, Jon Håvard

Loge, Peter Solvoll Lyby, Sadaf Malik, Ulrik Fredrik Malt, Trygve Moe, Anna-

Karin Norlin, Maria Pedersen, Siv Elin Pignatiello, Charlotte Ulrikka Rask,

Silje Endresen Reme, Gisle Roksund, Markku Sainio, Michael Sharpe, Ruth

Foseide Thorkildsen, Betty van Roy, Per Olav Vandvik, Henrik Vogt, Hedda

Bratholm Wyller & Vegard Bruun Bratholm Wyller

To cite this article: The Oslo Chronic Fatigue Consortium, Tomas Nordheim Alme, Anna

Andreasson, Tarjei Tørre Asprusten, Anne Karen Bakken, Michael BJ Beadsworth, Birgitte Boye,

Per Alf Brodal, Elias Myrstad Brodwall, Kjetil Gundro Brurberg, Ingrid Bugge, Trudie Chalder,

Reidar Due, Hege Randi Eriksen, Per Klausen Fink, Signe Agnes Flottorp, Egil Andreas Fors,

Bård Fossli Jensen, Hans Petter Fundingsrud, Paul Garner, Lise Beier Havdal, Helene Helgeland,

Henrik Børsting Jacobsen, Georg Espolin Johnson, Martin Jonsjö, Hans Knoop, Live Landmark,

Gunvor Launes, Mats Lekander, Hannah Linnros, Elin Lindsäter, Helena Liira, Lina Linnestad,

Jon Håvard Loge, Peter Solvoll Lyby, Sadaf Malik, Ulrik Fredrik Malt, Trygve Moe, Anna-Karin

Norlin, Maria Pedersen, Siv Elin Pignatiello, Charlotte Ulrikka Rask, Silje Endresen Reme, Gisle

Roksund, Markku Sainio, Michael Sharpe, Ruth Foseide Thorkildsen, Betty van Roy, Per Olav

Vandvik, Henrik Vogt, Hedda Bratholm Wyller & Vegard Bruun Bratholm Wyller (23 Sep 2023):

Chronic fatigue syndromes: real illnesses that people can recover from, Scandinavian Journal

of Primary Health Care, DOI: 10.1080/02813432.2023.2235609

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RESEARCH ARTICLE

Chronic fatigue syndromes: real illnesses that people can recover from

The Oslo Chronic Fatigue Consortium, Tomas Nordheim Alme

, Anna Andreasson

, Tarjei Tørre

Asprusten

, Anne Karen Bakken

d,ba

, Michael BJ Beadsworth

, Birgitte Boye

f,an

, Per Alf Brodal

, Elias

Myrstad Brodwall

h,a

, Kjetil Gundro Brurberg

, Ingrid Bugge

, Trudie Chalder

, Reidar Due

, Hege Randi

Eriksen

, Per Klausen Fink

, Signe Agnes Flottorp

o,bb

, Egil Andreas Fors

, Bård Fossli Jensen

, Hans Petter

Fundingsrud

, Paul Garner

, Lise Beier Havdal

, Helene Helgeland

, Henrik Børsting Jacobsen

v,ap

, Georg

Espolin Johnson

, Martin Jonsjö

t,x

, Hans Knoop

, Live Landmark

z,ap

, Gunvor Launes

, Mats Lekander

Hannah Linnros

, Elin Lindsäter

, Helena Liira

, Lina Linnestad

, Jon Håvard Loge

, Peter Solvoll Lyby

Sadaf Malik

, Ulrik Fredrik Malt

, Trygve Moe

, Anna-Karin Norlin

, Maria Pedersen

a,h

, Siv Elin

Pignatiello

, Charlotte Ulrikka Rask

, Silje Endresen Reme

v,ap

, Gisle Roksund

, Markku Sainio

Michael Sharpe

, Ruth Foseide Thorkildsen

, Betty van Roy

, Per Olav Vandvik

, Henrik Vogt

, Hedda

Bratholm Wyller

and Vegard Bruun Bratholm Wyller

h,a

Department of Paediatrics and Adolescent Medicine, Akershus University Hospital, Lørenskog, Norway;

Department of Clinical

Epidemiology, Karolinska Institutet, Stockholm, Sweden;

General Practitioner, Hjelmeland, Norway;

VID Specialized University, Oslo,

Norway;

St. Olavs Hospital, Trondheim, Norway;

Tropical and infectious Disease Unit, Royal Liverpool University Hospital. Liverpool

University Hospitals Foundation Trust, Liverpool, UK;

Department of Behavioral Medicine, University of Oslo, Oslo, Norway;

Institute

of Basic Medical Sciences, University of Oslo, Oslo, Norway;

Institute of Clinical Medicine, University of Oslo, Oslo, Norway;

Division

for Health Services, Norwegian Institute of Public Health, Oslo, Norway;

Department of Child and Adolescent Mental Health in

Hospitals, Oslo University Hospital, Oslo, Norway;

Department of Psychological Medicine, Institute of Psychiatry, Psychology and

Neuroscience, King’s College London, London, England;

Department of Sport, Food and Natural Sciences, Western Norway

University of Applied Sciences, Bergen, Norway;

Research Clinic for Functional Disorders and Psychosomatics. Aarhus University

Hospital, Aarhus, Denmark;

Centre for Epidemic Interventions Research, Norwegian Institute of Public Health, Oslo, Norway;

Department of General Practice, University of Oslo, Oslo, Norway;

Faculty of Medicine and Health Sciences, Department of Public

Health and Nursing, General Practitioner Research Unit, Norwegian University of Science and Technology (NTNU), Trondheim,

Norway;

Nydalen Helsehus, Oslo, Norway;

The Child & Adolescent Health Services, University Hospital of North Norway, Tromsø,

Norway;

Department of Clinical Sciences, Liverpool School of Tropical Medicine, Liverpool, England;

Department of Behavior

Medicine, Karolinskal University Hospital, Stockholm, Sweden;

National Advisory Unit on Psychosomatic Disorders in Children and

Adolescents. Department of Child and Adolescent Mental Health in Hospitals, Oslo University Hospital, Oslo, Norway;

Department of

Pain management and research, Oslo University Hospital, Oslo, Norway;

CatoSenteret Rehabilitation Center, Son, Norway;

University of Oslo, Oslo, Norway;

Department of Clinical Neuroscience, Karolinska Institutet Stockholm, Sweden;

Department of

Medical Psychology, Amsterdam University Medical Centres, Location University of Amsterdam, Amsterdam, The Netherlands;

Department of Psychology, NTNU, Trondheim, Norway;

University of Bergen, Bergen, Norway;

Stress Research Institute,

Department of psychology, Stockholm University, Division of Psychology/Osher Center for Integrative Health, Department of Clinical

Neuroscience, Karolinska Institutet, Stockholm, Sweden;

Department of Health, Medicine, and Caring Sciences Pain and

Rehabilitation Center, Linköping University Hospital, Linköping, Sweden;

Center for Psychiatry Research, Department of Clinical

Neuroscience, Karolinska Institutet, Stockholm, Sweden;

Helsinki University Hospital, Helsinki, Finland;

Saglia medical center,

Vestby, Norway;

Division of Clinical Neuroscience. Institute of Clinical Medicine, University of Oslo, Oslo, Norway;

Chief Physician,

Falck Norge, Oslo, Norway;

Unit Psychosomatic medicine and CL psychiatry, Rikshospitalet, Oslo University Hospital, Oslo, Norway;

Department of Child and Adolescent Psychiatry, Aarhus University Hospital, Aarhus, Denmark;

The Mind Body Lab, Department of

Psychology, University of Oslo;

General Practitioner, Klosterhagen Legesenter, Norway;

Outpatient Clinic for Functional Disorders,

Helsinki University Hospital, Helsinki, Finland;

Psychological Medicine, University of Oxford, Oxford, UK;

Department of Medicine,

Diakonhjemmet Hospital, Oslo, Norway;

Department of Medicine, Lovisenberg Diaconal Hospital, Oslo, Norway;

Department of

Community Medicine and Global Health, Institute for Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway;

Clinical Psychologist, Oslo, Norway

ABSTRACT

The ‘Oslo Chronic Fatigue Consortium’consists of researchers and clinicians who question the

current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable

diseases. Instead, we propose an alternative view, based on research, which offers more hope to

patients. Whilst we regard the symptoms of these conditions as real, we propose that they are

more likely to reflect the brain’s response to a range of biological, psychological, and social

ARTICLE HISTORY

Received 17 February 2023

Accepted 7 July 2023

KEYWORDS

Chronic fatigue syndrome;

Myalgic encephalomyelitis;

CONTACT Silje Endresen Reme siljerem@uio.no;s.e.reme@psykologi.uio.no Department of Psychology, University of Oslo, Oslo, Norway

#LIST of authors and institutions in alphabetical order. Authors who are also ex-patients are marked with a star ().

ß2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits

unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the

posting of the Accepted Manuscript in a repository by the author(s) or with their consent.

SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE

https://doi.org/10.1080/02813432.2023.2235609

factors, rather than a specific disease process. Possible causes include persistent activation of

the neurobiological stress response, accompanied by associated changes in immunological, hor-

monal, cognitive and behavioural domains. We further propose that the symptoms are more

likely to persist if they are perceived as threatening, and all activities that are perceived to wor-

sen them are avoided. We also question the idea that the best way to cope with the illness is

by prolonged rest, social isolation, and sensory deprivation. Instead, we propose that recovery is

often possible if patients are helped to adopt a less threatening understanding of their symp-

toms and are supported in a gradual return to normal activities. Finally, we call for a much

more open and constructive dialogue about these conditions. This dialogue should include a

wider range of views, including those of patients who have recovered from them.

Long Covid; Chronic illness

narrative; Multidimensional

explanations; Rehabilitation

strategies; Patient-centered

care

The current public narrative

Severe, persistent fatigue conditions are a pressing

public health issue commonly encountered in primary

care settings. There is an increasingly dominant public

narrative that these fatigue conditions are best under-

stood as chronic and incurable multisystem diseases,

often coupled with the prediction that patients cannot

recover and that activity is harmful [1–3]. This narra-

tive is most commonly expressed by campaigners con-

cerned with chronic fatigue syndrome (CFS)/myalgic

encephalomyelitis (ME) [4], but more recently by those

writing about post-covid-19 condition [5], often

referred to as Long Covid. As a Consortium of

researchers, academics, and clinicians interested in the

causes and treatments of fatigue and fatigue related

conditions, as well as representatives of patients who

have suffered from these illnesses themselves, we pro-

pose that a different narrative also needs to be heard.

This alternative narrative is based on scientific evi-

dence and offers patients a realistic hope of improve-

ment and recovery.

Current diagnostic labels are of limited value

Diagnoses guide treatment. However, although many

of the diagnoses given to patients with these fatigue

related conditions, such as CFS/ME, post-covid-19 con-

ditions and burnout, have questionable validity and

reliability [1,6–8], and indeed overlap [9], they imply

quite different treatments. Persistent fatigue also

occurs in many other illnesses [7,10–12] and is there-

fore unlikely to indicate a distinct illness with specific

pathology [13]. Furthermore, post-exertional malaise

(PEM), thought by some to be specific to CFS/ME, also

occurs in patients with other diagnoses [1]. Given this

lack of evidence for the specificity of the diagnosis of

CFS/ME [14], it is surprising that it has often been por-

trayed as a distinct disease requiring treatment differ-

ent to that from other similar conditions (for

example [1,2]).

It is time for another perspective

After 40 years of research into CFS/ME [15] neither a

specific biological defect or pathology, nor a specific

biomarker, has been identified. Whilst many patho-

physiological abnormalities have been reported, these

remain as non-specific associations. Similar abnormal-

ities have also been found in patients with other ill-

nesses including chronic pain and fibromyalgia [16,17],

as well as in illnesses conventionally referred to as

‘psychological’[18–20]. We therefore think it is time to

explore alternative perspectives that include psycho-

logical, social as well as biological factors [21].

Symptoms are both real and generated by the

brain

This new perspective views the symptoms of these fatigue

related conditions as real. These symptoms, like all percep-

tions, arise from synchronized activity of complex neural

networks in the brain. Whilst such activity may be driven

by signals arising in the tissues of the body, it may occur

without such signals [22].Theexperienceofpain,for

example, can arise from expectations based on prior

experience, without any neuronal input from peripheral

sense organs and influenced by the interplay of biological,

psychological, and social factors [23–26].

These conditions can be explained

Research from several fields including neuroscience,

evolutionary biology, and physiology provides promis-

ing explanations for understanding symptom onset,

development, and persistence. Faced by perceived

threats to our wellbeing, our brain networks generate

alarms in the form of symptoms, such as fatigue and

pain, to warn us and shut us down. These alarms may

be seen as crucial processes selected through evolu-

tion to keep us safe. More specifically, pain signals tis-

sue damage, and fatigue signals a disbalance between

effort needed, expected reward and available resour-

ces [27], but they are also regulated and influenced by

context. These perceived threats to our safety can

2 T. ALME ET AL.

evoke a stress response of automated bodily defense

mechanisms consisting of interlinked immunological,

hormonal, cognitive, and behavioral adjustments. This

response is initially temporary and adaptive, but may

become persistent and maladaptive chronically affect-

ing sleep and cognitive functioning [28,29]. A high

level of neuroplasticity in this alarm system risks asso-

ciative learning, whereby the alarms are reactivated by

innocent cues (by classical conditioning). The way we

experience a situation is strongly influenced by our

previous experience and expectations [22,30,31]. Other

processes that contribute to symptom persistence

include unconscious bias in attention and interpret-

ation, sensitization to stimuli and changes in percep-

tion effort [32].

Activity as well as rest is needed for

rehabilitation

Building on this understanding, the presence of

fatigue and other symptoms after activity does not

necessarily mean that such activity is dangerous or

that there is ‘lack of energy in the body’. Rest is bene-

ficial after acute stressors, such as an infection, but a

gradual and controlled approach to increasing activity

is crucial for rehabilitation. Patients should feel secure

and in control throughout the process. Such rehabilita-

tion can reduce symptoms by allowing the systems

described above to readapt to activity [33], and can

be readily delivered in primary care. By contrast, the

approach often recommended by the public narrative

of inactivity, isolation, and sensory deprivation, risks

worsening symptoms and associated disability [34–36].

Patients do recover and get back to work [37,38],

and patients can get help that improves their chances

of recovery [39]. Giving them credible and positive

explanations of their symptoms gives them hope that

they will be able to return to valued activities [40,41].

Individualized rehabilitative treatments such as cogni-

tive behavioral therapy (CBT) and graded exercise

therapy (GET), based on this understanding and given

within a supportive therapeutic relationship, help

patients to gain control of their illness [42]. When

given correctly by appropriately trained therapists

these treatments can offer useful improvement for

many and recovery for some [43].

We need to explore all avenues that may lead

to effective treatments

We are well aware that some patients have met mis-

trust and even dismissal of their suffering and may

also feel that their illness is stigmatized. These experi-

ences are regrettable, should not have happened and

can result in patients feeling scared and angry. We are

also aware that some feel that this dismissal justifies a

defensive narrative that decries the involvement of

psychological and social factors and promotes the

idea of an ‘incurable physical disease’. In order to

maintain the dominance of this narrative any patients,

clinicians, and researchers who question it may be

attacked, harassed and unfairly charged with conspir-

ing against vulnerable patients [44]. We believe such

actions to be unethical and incompatible with good

science and properly informed patient care.

The patient voice is important and must

include the recovered

We do believe that the patientsvoice is important

and that this voice must include those who improved

or recovered from the illness, and not just those who

remain ill [45,46]. Those who have improved or recov-

ered through cognitive, behavioural, and stress-reduc-

ing strategies can offer special insight into both the

experience of illness and the ways out of it.

Unfortunately, their personal stories are rarely pro-

moted or represented by advocacy groups as they do

not match the ‘incurable physical disease’narrative.

The unproven narrative of a disease with no

cure can be harmful

The narrative of CFS/ME as an incomprehensible and

incurable disease without any available treatment is

likely to increase fear, helplessness, and loss of hope.

The associated advice to rest whilst awaiting a medical

cure both discourages patients from gaining control of

their symptoms and creates a barrier to seeking

potentially effective treatments, as well as risking wor-

sening of symptoms and reduced quality of life.

Unfortunately, this narrative is now being promoted

for post-covid-19 conditions, risking a further major

negative impact on public health.

What is needed now?

We call for change. Specifically, we propose that doc-

tors and health professionals should feel free to dis-

cuss and express different understandings of these

illnesses. They should also be free to recommend any

evidence-based treatments that offer a realistic hope

of improvement and even recovery. In summary, we

need a broader more constructive and better-informed

SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE 3

public narrative about these disabling illnesses, if we

are to make real progress in helping those who are

suffering from them.

Disclosure statement

Trudie Chalder has received royalties for self-help books on

chronic fatigue and ad hoc payments for workshops on

long-term conditions and travel expenses and accommoda-

tion costs of attending conferences. She is on the Expert

Advisory Panel for Covid-19 Rapid Guidelines and is in

receipt of research grants from Guy’s and St Thomas’

Charity, NIHR and UKRI. Hege Eriksen is cofounder and part

owner of Stressprofessorene, giving paid lectures on stress

and coping. Henrik B Jacobsen receives honorariums for lec-

tures and workshops about stress and health. Hans Knoop

receives royalties for a published manual of cognitive behav-

ior therapy for ME/CFS. Live Landmark receives honorarium

for lectures about stress and coping and payment as an

instructor in the Lightning Process. Helena Liira is the former

Editor in Chief of the Scandinavian Journal of Primary Health

Care. Silje E Reme receives honorariums for lectures and

workshops about stress and health. Michael Sharpe is

President of the European Association of Psychosomatic

medicine and receives royalties for academic publications.

Henrik Vogt initiated and was the former leader of Recovery

Norway which is an organization consisting of people who

have experienced recovery from conditions such as post-viral

illness like PACS and CFS/ME from 2017 until March 2022

and is still a member of this organization. He discloses this

as an intellectual and personal COI but declares no financial

or economic conflicts of interest. The remaining authors

declare no conflicts of interest relating to this manuscript.

ORCID

Silje Endresen Reme http://orcid.org/0000-0001-5870-4906

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SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE 5

Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al.

Preprint

Full-text available

Jun 2025

Multidisciplinary, tailored approaches based on a biopsychosocial understanding do not lead to objective improvement in very severe ME/CFS. Abstract The narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studies and has been found to be ineffective and harmful, as concluded by for example NICE in 2021. Additionally, it does not lead to objective improvement and it has a negative instead of a positive effect on work and disability status. What has happened over the last 35 years is that severely ill patients have been ridiculed, gaslit and ignored by the medical profession. These patients have lost hope in the part of the medical profession which has been instrumental in doing and promoting that. They have not lost hope to recover and they are all hoping to get effective pharmacological treatments sooner rather than later as changing their mindset does not lead to recovery. And if it does, then the diagnosis of ME/CFS was simply wrong.

Functioning of post-COVID-19 patients: a cross-sectional study at the outpatient clinic for long-term effects

Article

Full-text available

Oct 2024
SCAND J PRIM HEALTH

Background: After COVID-19 infection, long-term impacts on functioning may occur. We studied the functioning of patients with post-COVID-19 condition (PCC) and compared them to controls without PCC. Methods: This cross-sectional study consisted of 442 patients with PCC referred to rehabilitation at the Helsinki University Hospital (HUS) Outpatient Clinic for the Long-Term Effects of COVID-19, and 198 controls without PCC. Functioning was assessed with a questionnaire including WHODAS 2.0. Patients underwent physical testing including a hand grip strength test (HGST) and a 6-minute walking test (6MWT). Lifestyle was assessed by questionnaire and comorbidities were collected as ICD-10 codes from the HUS Data Lake on the HUS Acamedic platform. Results: The WHODAS 2.0 average total score was 34 (SD 18) (moderate functional limitation) for patients with PCC and 6 (SD 8) (normal or mild limitation) for the controls. The disability was higher in all aspects of WHODAS 2.0 in patients with PCC. Bivariate binomial and multivariable regression analyses showed that the presence of comorbidities, anxiety, depression, and smoking predicted a WHODAS 2.0 score of 24 (moderate functional limitation) or above in the PCC group. The average 6MWT distance was 435 m (SD 98 m) in patients with PCC and 627 m (SD 70 m) in controls. HGST measurements showed no significant differences from controls. Conclusions: In conclusion, patients with PCC had significantly reduced functioning based on WHODAS 2.0 scores and the 6MWT results. Comorbidities, anxiety, depression, and smoking were associated with moderate or severe limitations in functioning. Findings support that PCC is multifactorial and requires a holistic approach to rehabilitation.

Physicians’ experiences of assessing and supporting fatigued patients in primary care: a focus group study

Article

Full-text available

Jun 2025

Background Fatigue is a common symptom in primary healthcare, affecting 10–30% of patients, and is associated with increased healthcare consumption and functional disability. There is a lack of standardised guidelines to assess and treat patients with fatigue, and little is known about how patients are currently managed in primary healthcare. This study aimed to explore physicians' experiences of managing patients with fatigue in Swedish primary care to inform development of evidence-based care procedures. Method Six semi-structured focus group interviews were conducted, including a total of 39 primary care physicians from three primary care centres in Stockholm. Data was analysed using thematic analysis. Results The analysis generated the overarching theme "Frustration in the role as physician," consisting of two main themes: (1) “Time pressure and an empty toolbox”, highlighting the perceived lack of standardised assessment procedures, effective interventions, and sufficient time for care; and (2) “Challenges in the patient-physician relationship”, highlighting role ambivalence, ambivalence regarding sick leave, and the importance of reaching mutual understanding with the patient. Conclusion Physicians often feel frustrated, ill-equipped, and time-pressured when managing patients with fatigue. There is a pressing need to develop evidence-based assessment procedures and treatments in the primary care context.

Effectiveness of mindfulness-based online therapy or internet-delivered cognitive behavioral therapy compared with treatment as usual among patients with persistent somatic symptoms: Protocol for a randomized controlled trial

Article

Full-text available

Feb 2025
PLOS ONE

Background Persistent somatic symptoms unexplained by a defined medical or psychiatric condition often include a component of central sensitization. Many treatment options are based on cognitive behavioral therapy. Effective widely available therapies are scarce. There are self-management programs and e-therapies that aim at overcoming the central sensitization by modifying interoceptive neural networks in the brain. Objectives This study aims to investigate the effect of a mindfulness-based amygdala and insula retraining (AIR) online program and an internet delivered therapist assisted therapy offered by Helsinki University Hospital (HUS iCBTpss) compared to treatment as usual (TAU) in the treatment of conditions causing persistent somatic symptoms. Methods We will perform a randomized controlled trial aiming at 360 patients. Consenting patients will be randomized to three study arms: online AIR program, HUS iCBTpss (both interventions as add-ons to TAU); and TAU. Functional ability and quality of life surveys will be collected from participants at baseline and at 3, 6, and 12 months after entering the study. Conclusions This study is one of the first to explore non-drug based online interventions developed to overcome the brain’s central sensitization and are available and accessible to patients both in primary and secondary care. The results will develop the management of the common, often debilitating persistent somatic symptoms related to many conditions unexplained by a defined somatic or psychiatric illness. Trial registration number NCT05212467.

Assessment of psychosocial aspects in adults in post-COVID-19 condition: the EURONET-SOMA recommendations on core outcome domains for clinical and research use

Article

Full-text available

Feb 2025
BMC MED

Background Harmonizing core outcome domains allows for pooling data, comparing interventions, and streamlining research evaluation. At the same time clinicians require concise and feasible measures for routine practice. Considering the heterogeneity of post-COVID-19 condition, a biopsychosocial approach requires sufficient coverage of the psychosocial dimension with assessments. Previous recommendations for core outcome sets have serious limitations regarding the psychosocial aspects of post-COVID-19 condition. This paper specifically focuses on psychosocial outcomes for adults with post-COVID-19 condition, providing both a comprehensive set of outcome domains for research and a streamlined clinical core set tailored for routine clinical use. Methods In a structured Consensus Development Approach, the European Network to improve diagnostic, treatment, and healthcare for patients with persistent somatic symptoms (EURONET-SOMA) developed psychosocial core outcome domains and assessments regarding post-COVID-19 condition. The experts identified variables and instruments which should be considered in studies on adults suffering from post-COVID-19 condition, and which are feasible in the clinical setting and relevant for research. Results We identified three higher-order dimensions with each encompassing several domains: The first higher-order dimension, “outcomes”, encompasses (1) the classification/ diagnostics of post-COVID-19 condition, (2) somatic symptoms (including fatigue), (3) the psychopathological status and mental comorbidities, (4) the physical status and somatic comorbidities, (5) neurocognitive symptoms, and (6) illness consequences. The second higher-order domain “mechanisms” encompasses (7) cognitive components, (8) affective components, (9) behavioral components, (10) social components, and (11) psychobiological bridge markers (e.g., neuroimmunological and psychoneuroendocrinological variables). The third higher-order domain, “risk factors”, includes factors such as (12) socioeconomic status and sociocultural factors, (13) pre-existing mental and somatic health issues, (14) personality factors (e.g., neuroticism), (15) adverse childhood experiences, (16) ongoing disability or pension claim, and (17) social media use. For each domain, specific instruments are suggested for research purposes and clinical use. Conclusions The recommended core domains help to increase consistency in a biopsychosocial approach to post-COVID-19 condition across investigations, improve synergies, and facilitate decision-making when comparing different interventional approaches. It allows to better identify relevant subgroups in heterogeneous post-COVID-19 condition populations offering practical tools for routine clinical practice through the clinical core set.

Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care

Article

Jun 2025

Patients with severe ME/CFS need hope and expert multidisciplinary care

Article

May 2025
Br Med J

Impact of COVID-19 and the 2021 NICE Guideline on Public Perspectives towards Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Twitter Thematic and Sentiment Analysis (Preprint)

Article

Aug 2024
J MED INTERNET RES

Background Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a complex illness that typically presents with disabling fatigue and cognitive and functional impairment. The etiology and management of ME/CFS remain contentious and patients often describe their experiences through social media. Objective We explored public discourse on Twitter (rebranded as X) to understand the concerns and priorities of individuals living with ME/CFS, with a focus on (1) the COVID-19 pandemic and (2) publication of the 2021 UK National Institute for Health and Care Excellence (NICE) guidelines on the diagnosis and management of ME/CFS. Methods We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1, 2010, and January 30, 2024. Tweets were sorted into 3 chronological periods (pre–COVID-19 pandemic, post–COVID-19 pandemic, and post-UK 2021 NICE Guidelines publication). A Robustly Optimized Bidirectional Embedding Representations from Transformers Pretraining Approach (RoBERTa) language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We identified tweets that mentioned COVID-19, the UK NICE guidelines, and key themes identified through latent Dirichlet allocation (ie, fibromyalgia, research, and treatment). We sampled 1000 random tweets from each theme to identify subthemes and representative quotes. Results We retrieved 906,404 tweets, of which 427,824 (47.2%) were neutral, 369,371 (40.75%) were negative, and 109,209 (12.05%) were positive. Over time, both the proportion of negative and positive tweets increased, and the proportion of neutral tweets decreased (P<.001 for all changes). Tweets mentioning fibromyalgia acknowledged similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Treatment-related tweets often described frustration with ME/CFS labeled as mental illness, dismissal of concerns by health care providers, and the need to seek out “good physicians” who viewed ME/CFS as a physical disorder. Tweets on research typically praised studies of biomarkers and biomedical therapies, called for greater investment in biomedical research, and expressed frustration with studies suggesting a biopsychosocial etiology for ME/CFS or supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy and graded exercise therapy, and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed high acceptance of the 2021 UK NICE guidelines, which were seen to validate ME/CFS as a biomedical disease and recommended against graded exercise therapy. Tweets about COVID-19 often noted overlaps between post–COVID-19 condition and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition. Conclusions Our findings suggest research is needed to inform how best to support patients’ engagement with evidence-based care. Furthermore, while patient involvement with ME/CFS research is critical, unmanaged intellectual conflicts of interest may threaten the trustworthiness of research efforts.

An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms

Article

Full-text available

Feb 2025
JFMPC

A BSTRACT To audit the outcomes of patients with long COVID after the lightning process intervention. Retrospective cross-sectional audit. Patients with long COVID were interviewed through telephone regarding their experience and response to the lightning process. Physical, emotional, and overall quality of life; perceived harms of the intervention. None of the 12 participants reported harm from the intervention. 11/12 participants reported being 85% back to normal or more; 8/12 described achieving 85% or greater satisfaction with their emotional, physical, and overall quality of life. 10/12 of the participants reported having heard negative comments about the lightning process but had nonetheless gone ahead with the treatment. This study suggests that the lightning process is a promising and safe intervention for symptoms of long COVID. Primary care clinicians can refer patients for treatment with a high chance of benefit without fear of harm. Randomized, controlled trials are indicated.

Muscle abnormalities in Long COVID

Article

Full-text available

Feb 2025

A systematic literature review of randomized controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome

Article

Full-text available

Sep 2022
PSYCHOL MED

This systematic review investigated randomized controlled trials evaluating cognitive behav-ioral therapy (CBT) and graded exercise therapy (GET) for adults with chronic fatigue syndrome (CFS). The objective was to determine prognosis following treatment. Studies were eligible if they were peer-reviewed and investigated treatment at least 12 weeks in duration. Studies were excluded if they used co-morbid diagnoses as entry criteria or if they did not measure fatigue, disability, or functioning. Literature published between 1988 and 2021 was searched using MEDLINE, EMBASE, PsycINFO, and Web of Science. Study quality was assessed using the Effective Public Health Practice Project assessment tool. Outcomes were synthesized when three or more studies reported outcomes obtained from the same validated measurement tool. The review included 15 publications comprising 1990 participants. Following CBT, and at short-term to medium-term follow-up, 44% considered themselves better and 11% considered themselves worse. Following GET, and at post-treatment to short-term follow-up, 43% considered themselves better and 14% considered themselves worse. These outcomes were 8-26% more favorable compared to control conditions. Two-thirds of studies were of moderate quality and the remainder were of weak quality. Limitations of this review relate to the clinical heterogeneity of studies and that most outcomes were self-reported. Results suggest some support for the positive effects of CBT and GET at short-term to medium-term follow-up although this requires further investigation given the inconsistent findings of previous reviews. Findings may not be generalizable to severe CFS. This review was registered with PROSPERO (CRD42018086002).

An online breathing and wellbeing programme (ENO Breathe) for people with persistent symptoms following COVID-19: a parallel-group, single-blind, randomised controlled trial

Article

Full-text available

Apr 2022

Background There are few evidence-based interventions for long COVID; however, holistic approaches supporting recovery are advocated. We assessed whether an online breathing and wellbeing programme improves health related quality-of-life (HRQoL) in people with persisting breathlessness following COVID-19. Methods We conducted a parallel-group, single-blind, randomised controlled trial in patients who had been referred from one of 51 UK-based collaborating long COVID clinics. Eligible participants were aged 18 years or older; were recovering from COVID-19 with ongoing breathlessness, with or without anxiety, at least 4 weeks after symptom onset; had internet access with an appropriate device; and were deemed clinically suitable for participation by one of the collaborating COVID-19 clinics. Following clinical assessment, potential participants were given a unique online portal code. Participants were randomly assigned (1:1) to either immediate participation in the English National Opera (ENO) Breathe programme or to usual care. Randomisation was done by the research team using computer-generated block randomisation lists, with block size 10. The researcher responsible for randomisation was masked to responses. Participants in the ENO Breathe group participated in a 6-week online breathing and wellbeing programme, developed for people with long COVID experiencing breathlessness, focusing on breathing retraining using singing techniques. Those in the deferred group received usual care until they exited the trial. The primary outcome, assessed in the intention-to-treat population, was change in HRQoL, assessed using the RAND 36-item short form survey instrument mental health composite (MHC) and physical health composite (PHC) scores. Secondary outcome measures were the chronic obstructive pulmonary disease assessment test score, visual analogue scales (VAS) for breathlessness, and scores on the dyspnoea-12, the generalised anxiety disorder 7-item scale, and the short form-6D. A thematic analysis exploring participant experience was also conducted using qualitative data from focus groups, survey responses, and email correspondence. This trial is registered with ClinicalTrials.gov, NCT04830033. Findings Between April 22 and May 25, 2021, 158 participants were recruited and randomly assigned. Of these, eight (5%) individuals were excluded and 150 participants were allocated to a treatment group (74 in the ENO Breathe group and 76 in the usual care group). Compared with usual care, ENO Breathe was associated with an improvement in MHC score (regression coefficient 2·42 [95% CI 0·03 to 4·80]; p=0·047), but not PHC score (0·60 [–1·33 to 2·52]; p=0·54). VAS for breathlessness (running) favoured ENO Breathe participation (−10·48 [–17·23 to –3·73]; p=0·0026). No other statistically significant between-group differences in secondary outcomes were observed. One minor self-limiting adverse event was reported by a participant in the ENO Breathe group who felt dizzy using a computer for extended periods. Thematic analysis of ENO Breathe participant experience identified three key themes: (1) improvements in symptoms; (2) feeling that the programme was complementary to standard care; and (3) the particular suitability of singing and music to address their needs. Interpretation Our findings suggest that an online breathing and wellbeing programme can improve the mental component of HRQoL and elements of breathlessness in people with persisting symptoms after COVID-19. Mind–body and music-based approaches, including practical, enjoyable, symptom-management techniques might have a role supporting recovery. Funding Imperial College London.

Inspiratory Muscle Training Enhances Recovery Post COVID-19: A Randomised Controlled Trial

Article

Full-text available

Feb 2022
EUR RESPIR J

Background: Many people recovering from COVID-19 experience prolonged symptoms, particularly breathlessness. We urgently need to identify safe and effective COVID-19 rehabilitative strategies. The aim of the current study was to investigate the potential rehabilitative role of inspiratory muscle training (IMT). Methods: 281 adults (46.6±12.2 years; 88% female) recovering from self-reported COVID-19 (9.0±4.2 months post-acute infection) were randomised 4:1 to an 8-week IMT or a "usual care" wait list control arm. Health-related quality of life and breathlessness questionnaires (King's Brief Interstitial Lung Disease (KBILD) and Transition Dyspnoea Index (TDI)), respiratory muscle strength and fitness (Chester Step Test) were assessed pre- and post-intervention. The primary endpoint was KBILD total score, with the KBILD subdomains and TDI being key secondary outcomes. Results: According to intention to treat (ITT), there was no difference between groups in KBILD total score post-intervention (Control: 59.5±12.4; IMT: 58.2±12.3; p<0.05) but IMT elicited clinically meaningful improvements in the KBILD subdomains of breathlessness (Control: 59.8±12.6; IMT: 62.2±16.2; p<0.05) and chest symptoms (Control: 59.2±18.7; IMT: 64.5±18.2; p<0.05), along with clinically meaningful improvements in breathlessness according to TDI (Control: 0.9±1.7 versus 2.0±2.0; p<0.05). IMT also improved respiratory muscle strength and estimated aerobic fitness. Conclusions: IMT may represent an important home-based rehabilitation strategy for wider implementation as part of COVID-19 rehabilitative strategies. Given the diverse nature of long-COVID, further research is warranted on the individual responses to rehabilitation - the withdrawal rate herein highlights that no one strategy is likely to be appropriate for all.

Fatigue in patients with chronic disease: results from the population-based Lifelines Cohort Study

Article

Full-text available

Oct 2021

(1) To evaluate the prevalence of severe and chronic fatigue in subjects with and without chronic disease; (2) to assess to which extent multi-morbidity contributes to severe and chronic fatigue; and (3) to identify predisposing and associated factors for severe and chronic fatigue and whether these are disease-specific, trans-diagnostic, or generic. The Dutch Lifelines cohort was used, including 78,363 subjects with (n = 31,039, 53 ± 12 years, 33% male) and without (n = 47,324, 48 ± 12 years, 46% male) ≥ 1 of 23 chronic diseases. Fatigue was assessed with the Checklist Individual Strength-Fatigue. Compared to participants without a chronic disease, a higher proportion of participants with ≥ 1 chronic disease were severely (23% versus 15%, p < 0.001) and chronically (17% versus 10%, p < 0.001) fatigued. The odds of having severe fatigue (OR [95% CI]) increased from 1.6 [1.5–1.7] with one chronic disease to 5.5 [4.5–6.7] with four chronic diseases; for chronic fatigue from 1.5 [1.5–1.6] to 4.9 [3.9–6.1]. Multiple trans-diagnostic predisposing and associated factors of fatigue were found, explaining 26% of variance in fatigue in chronic disease. Severe and chronic fatigue are highly prevalent in chronic diseases. Multi-morbidity increases the odds of having severe and chronic fatigue. Several trans-diagnostic factors were associated with fatigue, providing a rationale for a trans-diagnostic approach.

Biological Markers in Anxiety Disorders

Article

Full-text available

Apr 2021

Anxiety disorders are one of the most commonly reported disorders in psychiatry, causing a high medical and socio-economic burden. Recently, there has been a soaring interest in the biological basis of anxiety disorders, which is reflected in an increasing number of articles related to the topic. Due to the ambiguity of the diagnosis and a large number of underdiagnosed patients, researchers are looking for laboratory tests that could facilitate the diagnosis of anxiety disorders in clinical practice and would allow for the earliest possible implementation of appropriate treatment. Such potential biomarkers may also be useable in monitoring the efficacy of pharmacological therapy for anxiety disorders. Therefore this article reviews the literature of potential biomarkers such as components of saliva, peripheral blood, cerebrospinal fluid (CSF), and neuroimaging studies. There are promising publications in the literature that can be useful. The most valuable and promising markers of saliva are cortisol, lysozyme, and α-amylase (sAA). In the blood, in turn, we can distinguish serotonin, brain-derived serum neurotrophic factor (BDNF), cortisol, and microRNA. Structural changes in the amygdala and hippocampus are promising neuroimaging markers, while in CSF, potential markers include oxytocin and 5-Hydroxyindoleacetic acid (5-HIAA). Unfortunately, research in the field of biomarkers is hampered by insufficient knowledge about the etiopathogenesis of anxiety disorders, the significant heterogeneity of anxiety disorders, frequent comorbidities, and low specificity of biomarkers. The development of appropriate biomarker panels and their assessment using new approaches may have the prospective to overcome the above-mentioned obstacles.

Fibromyalgia: Pathogenesis, Mechanisms, Diagnosis and Treatment Options Update

Article

Full-text available

Apr 2021
INT J MOL SCI

Fibromyalgia is a syndrome characterized by chronic and widespread musculoskeletal pain, often accompanied by other symptoms, such as fatigue, intestinal disorders and alterations in sleep and mood. It is estimated that two to eight percent of the world population is affected by fibromyalgia. From a medical point of view, this pathology still presents inexplicable aspects. It is known that fibromyalgia is caused by a central sensitization phenomenon characterized by the dysfunction of neuro-circuits, which involves the perception, transmission and processing of afferent nociceptive stimuli, with the prevalent manifestation of pain at the level of the locomotor system. In recent years, the pathogenesis of fibromyalgia has also been linked to other factors, such as inflammatory, immune, endocrine, genetic and psychosocial factors. A rheumatologist typically makes a diagnosis of fibromyalgia when the patient describes a history of pain spreading in all quadrants of the body for at least three months and when pain is caused by digital pressure in at least 11 out of 18 allogenic points, called tender points. Fibromyalgia does not involve organic damage, and several diagnostic approaches have been developed in recent years, including the analysis of genetic, epigenetic and serological biomarkers. Symptoms often begin after physical or emotional trauma, but in many cases, there appears to be no obvious trigger. Women are more prone to developing the disease than men. Unfortunately, the conventional medical therapies that target this pathology produce limited benefits. They remain largely pharmacological in nature and tend to treat the symptomatic aspects of various disorders reported by the patient. The statistics, however, highlight the fact that 90% of people with fibromyalgia also turn to complementary medicine to manage their symptoms.

Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched

Article

Full-text available

Dec 2020
J TRANSL MED

Background Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is understood as a complex condition, likely triggered and sustained by an interplay of biological, psychological, and social factors. Little oversight exists of the field of causal research. This systematic scoping review explores potential causal factors of CFS/ME as researched by primary studies. Methods We searched eight databases for primary studies that examined potential causal factors of CFS/ME. Based on title/abstract review, two researchers independently sorted each study’s factors into nine main categories and 71 subordinate categories, using a system developed with input given during a 2018 ME conference, specialists and representatives from a ME patient advocacy group, and using BMJ Best Practice’s description of CFS/ME etiology. We also extracted data related to study design, size, diagnostic criteria and comparison groups. Results We included 1161 primary studies published between January 1979 and June 2019. Based on title/abstract analysis, no single causal factor dominated in these studies, and studies reported a mean of 2.73 factors. The four most common factors were: immunological (297 studies), psychological (243), infections (198), and neuroendocrinal (198). The most frequent study designs were case–control studies (894 studies) comparing CFS/ME patients with healthy participants. More than half of the studies (that reported study size in the title/abstract) included 100 or fewer participants. Conclusion The field of causal hypotheses of CFS/ME is diverse, and we found that the studies examined all the main categories of possible factors that we had defined a priori. Most studies were not designed to adequately explore causality, rather to establish hypotheses. We need larger studies with stronger study designs to gain better knowledge of causal factors of CFS/ME.

A new paradigm is needed to explain long COVID

Article

Jan 2023

Online harassment: a toolkit for protecting yourself from abuse

Article

Aug 2022

Bianca Nogrady

Scientists can take practical steps to prevent or pre-empt problems on social media. Scientists can take practical steps to prevent or pre-empt problems on social media.

Evidence-Based Care for People with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Article

Nov 2021

Chronic fatigue syndrome (CFS), sometimes referred to as myalgic encephalomyelitis (ME) and often as CFS/ME, is an illness characterized by disabling fatigue and other symptoms, typically worsened by activity. The main evidence-based treatments are rehabilitative in nature and include specific types of cognitive behavior therapy (CBT) and graded exercise therapy (GET). In this article, we briefly review the evidence for their safety and effectiveness and propose that much of the controversy about them arises from misunderstandings about their nature and delivery. In particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real. We recommend that rehabilitative treatment always be preceded by a thorough clinical assessment and delivered by appropriately trained therapists working in close collaboration with the patient. We conclude that properly applied rehabilitative treatments offer the best hope of safely improving fatigue and function for patients with CFS/ME. However, we also recognize the need for more research into the treatment of this neglected condition, especially for those most severely disabled by it.