Read What Is Suggested About You and CFS
The idea, some experts say it is “post-infectious” is a serious remark.
I agree with some of the sufferers of CFS I treat.
1. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in Adolescents: Practical Guidance and Management Challenges
Review Adolesc Health Med Ther. 2023 Jan 4:14:13-26. doi: 10.2147/AHMT.S317314. eCollection 2023.
Katherine Rowe
PMID: 36632532 PMCID: PMC9827635 DOI: 10.2147/AHMT.S317314
Abstract
This paper reviews the current understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and whether any treatment strategies have been effective. ME/CFS is a condition of as yet unknown etiology that commonly follows an infective process. It includes a new onset of fatigue (of more than 3-6 month duration and not relieved by rest), post-exertional malaise, cognitive difficulties and unrefreshing sleep, and frequently orthostatic intolerance, somatic symptoms and pain. Long COVID has renewed interest in the condition and stimulated research with findings suggestive of a multisystem neuroimmune disease.
There are no definitively effective treatments. Despite earlier recommendations regarding graded exercise therapy and cognitive behavior therapy, the current recommendations are managing symptoms, with lifestyle management and supportive care.
This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness that impacts their life socially, physically, emotionally, cognitively and educationally. As the illness frequently occurs at a time of rapid developmental changes, reducing these impacts is reported to be as important as managing the physical symptoms.
Young people face a mean duration of 5 years illness (range 1-16 years) with a likely residual 20% having significant restrictions after 10 years. Their feedback has suggested that symptom management, self-management strategies, advocacy and educational liaison have been the most helpful.
They value professionals who will listen and take them seriously, and after excluding alternative diagnoses, they explain the diagnosis, are supportive and assist in monitoring their progress.
Remaining engaged in education was the best predictor of later functioning. This allowed for social connections, as well as potential independence and fulfilling some aspirations. The need to consider the impact of this chronic illness on all aspects of adolescent development, as part of management, is highlighted.
Keywords: chronic fatigue syndrome; chronic illness; interventions; self-management.
© 2023 Rowe.
Conflict of interest statement: The author reports no conflicts of interest in this work.
2. Post-COVID Syndrome
Dtsch Arztebl Int. 2023 Jan 27;120(4):48-55. doi: 10.3238/arztebl.m2022.0409.
Michael Hallek, Kristina Adorjan, Uta Behrends, Georg Ertl, Norbert Suttorp, Clara Lehmann
PMID: 36633452 PMCID: PMC10060997 DOI: 10.3238/arztebl.m2022.0409
Abstract
Background: As defined by the WHO, the term post-COVID syndrome (PCS) embraces a group of symptoms that can occur following the acute phase of a SARS-CoV-2 infection and as a consequence thereof. PCS is found mainly in adults, less frequently in children and adolescents. It can develop both in patients who initially had only mild symptoms or none at all and in those who had a severe course of coronavirus disease 2019 (COVID-19).
Methods: The data presented here were derived from a systematic literature review.
Results: PCS occurs in up to 15% of unvaccinated adults infected with SARS-CoV-2. The prevalence has decreased in the most recent phase of the pandemic and is lower after vaccination. The pathogenesis of PCS has not yet been fully elucidated. Virus-triggered inflammation, autoimmunity, endothelial damage (to blood vessels), and persistence of virus are thought to be causative. Owing to the broad viral tropism, different organs are involved and the symptoms vary. To date, there are hardly any evidence-based recommendations for definitive diagnosis of PCS or its treatment.
Conclusion: The gaps in our knowledge mean that better documentation of the prevalence of PCS is necessary to compile the data on which early detection, diagnosis, and treatment can be based. To ensure the best possible care of patients with PCS, regional PCS centers and networks embracing existing structures from all healthcare system sectors and providers should be set up and structured diagnosis and treatment algorithms should be established. Given the sometimes serious consequences of PCS for those affected, it seems advisable to keep the number of SARS-CoV-2 infections low by protective measures tailored to the prevailing pandemic situation.
3. Small Intestinal Bacterial Overgrowth in Children: An Expert Review by the ESPGHAN Gastroenterology Committee
Review J Pediatr Gastroenterol Nutr. 2025 Oct;81(4):986-999. doi: 10.1002/jpn3.70156. Epub 2025 Jul 29.
Maria Giovanna Puoti, Amit Assa, Marc A Benninga, Ilse Broekaert, Jenej Dolinsek, Matjaž Homan, Javier Martín-deCarpi, Emmanuel Mas, Erasmo Miele, Zrinjka Misak, Caterina Strisciuglio, Christos Tzivinikos, Isabelle Scheers, Sara Sila, Osvaldo Borrelli; Gastrointestinal Committee of ESPGHAN
PMID: 40731137 DOI: 10.1002/jpn3.70156
Abstract
The aim of this review is to summarize the prevalence, etiology, pathogenesis, diagnosis, and treatments currently available for small intestinal bacterial overgrowth (SIBO) in children. SIBO is a clinical entity characterized by the presence of an excessive number of bacteria in the small bowel leading to several nonspecific gastrointestinal symptoms due to malabsorption and malnutrition, such as bloating, flatulence, belching, diarrhea, abdominal pain, nausea, steatorrhea, fatigue and stunted growth.
Initially thought to develop specifically in the context of abnormal or postsurgical gastrointestinal anatomy, it has then been recognized that it can be associated with other nonsurgical conditions, such as gastrointestinal dysmotility, disorders of gut-brain interactions and chronic use of drugs.
The uncertainty regarding the exact cut-off of excessive number of bacteria in the small bowel has led to the absence of a universally accepted definition of SIBO making well-designed research to assess the best diagnostic and therapeutic approaches challenging.
Current available diagnostic tools includes duodenal/jejunal aspirate with culture and hydrogen breath tests, which all have some limitations and pitfalls that prevent accurate sampling.
The treatment goal should be to treat the underlying causes, restore the healthy intestinal microflora, relieve the symptoms and address the associated complications. The use of antibiotics represents the treatment cornerstone. However, they are commonly used despite the scarce published evidence and the absence of agreement on the dose and duration of the treatment.
Currently, data on best diagnostic and therapeutic strategies in children remain lacking. Novel diagnostic approaches for SIBO are emerging and may facilitate further research.
Keywords: children; duodenal/jejunal aspirate; hydrogen breath test.
4. Anomalies in the Review Process and Interpretation of the Evidence in the NICE Guideline for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis
Review J Neurol Neurosurg Psychiatry. 2023 Dec;94(12):1056-1063. doi: 10.1136/jnnp-2022-330463. Epub 2023 Jul 10.
Peter White, Susan Abbey, Brian Angus, Harriet A Ball, Dedra S Buchwald, Christine Burness, Alan J Carson, Trudie Chalder, Daniel J Clauw, Jan Coebergh, Anthony S David, Barbara A Dworetzky, Mark J Edwards, Alberto J Espay, John Etherington, Per Fink, Signe Flottorp, Béatrice Garcin, Paul Garner, Paul Glasziou, Willie Hamilton, Peter Henningsen, Ingrid Hoeritzauer, Mujtaba Husain, Anne-Catherine M L Huys, Hans Knoop, Kurt Kroenke, Alexander Lehn, James L Levenson, Paul Little, Andrew Lloyd, Ira Madan, Jos W M van der Meer, Alastair Miller, Maurice Murphy, Irwin Nazareth, David L Perez, Wendy Phillips, Markus Reuber, Winfried Rief, Alastair Santhouse, Tereza Serranova, Michael Sharpe, Biba Stanton, Donna E Stewart, Jon Stone, Michele Tinazzi, Derick T Wade, Simon C Wessely, Vegard Wyller, Adam Zeman
PMID: 37434321 DOI: 10.1136/jnnp-2022-330463
Abstract
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling long-term condition of unknown cause. The National Institute for Health and Care Excellence (NICE) published a guideline in 2021 that highlighted the seriousness of the condition, but also recommended that graded exercise therapy (GET) should not be used and cognitive-behavioural therapy should only be used to manage symptoms and reduce distress, not to aid recovery.
This U-turn in recommendations from the previous 2007 guideline is controversial. We suggest that the controversy stems from anomalies in both processing and interpretation of the evidence by the NICE committee.
The committee: (1) created a new definition of CFS/ME, which ‘downgraded’ the certainty of trial evidence; (2) omitted data from standard trial end points used to assess efficacy; (3) discounted trial data when assessing treatment harm in favour of lower quality surveys and qualitative studies; (4) minimised the importance of fatigue as an outcome; (5) did not use accepted practices to synthesise trial evidence adequately using GRADE (Grading of Recommendations, Assessment, Development and Evaluations trial evidence); (6) interpreted GET as mandating fixed increments of change when trials defined it as collaborative, negotiated and symptom dependent; (7) deviated from NICE recommendations of rehabilitation for related conditions, such as chronic primary pain and (8) recommended an energy management approach in the absence of supportive research evidence.
We conclude that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.
Keywords: CHRONIC FATIGUE SYNDROME; RANDOMISED TRIALS; REHABILITATION.
5. Comparison of Cognitive Behaviour Therapy Versus Activity Management, Both Delivered Remotely, to Treat Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: The UK FITNET-NHS RCT
Randomized Controlled Trial Health Technol Assess. 2024 Oct;28(70):1-134. doi: 10.3310/VLRW6701.
Esther Crawley, Emma Anderson, Madeleine Cochrane, Beverly A Shirkey, Roxanne Parslow, William Hollingworth, Nicola Mills, Daisy Gaunt, Georgia Treneman-Evans, Manmita Rai, John Macleod, David Kessler, Kieren Pitts, Serena Cooper, Maria Loades, Ammar Annaw, Paul Stallard, Hans Knoop, Elise Van de Putte, Sanne Nijhof, Gijs Bleijenberg, Chris Metcalfe
PMID: 39485730 PMCID: PMC11590115 DOI: 10.3310/VLRW6701
Abstract
Design: Parallel-group randomised controlled trial.
Methods: Adolescents aged 11-17 years, diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome and with no local specialist treatment centre, were referred to a specialist service in South West England.
Interventions: Fatigue In Teenagers on the interNET in the National Health Service is a web-based myalgic encephalomyelitis/chronic fatigue syndrome-focused cognitive-behavioural therapy programme for adolescents, supported by individualised written, asynchronous electronic consultations with a clinical psychologist/cognitive-behavioural therapy practitioner. The comparator was videocall-delivered activity management with a myalgic encephalomyelitis/chronic fatigue syndrome clinician. Both treatments were intended to last 6 months.
Objectives: Estimate the effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management for paediatric myalgic encephalomyelitis/chronic fatigue syndrome. Estimate the effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management for those with mild/moderate comorbid mood disorders. From a National Health Service perspective, estimate the cost-effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management over a 12-month horizon.
Primary outcome: 36-item Short Form Health Survey Physical Function subscale at 6 months post randomisation.
Randomisation: Web-based, using minimisation with a random component to balance allocated groups by age and gender.
Blinding: While the investigators were blinded to group assignment, this was not possible for participants, parents/carers and therapists.
Results: The treatment of 314 adolescents was randomly allocated, 155 to Fatigue In Teenagers on the interNET in the National Health Service. Mean age was 14 years old and 63% were female.
Primary outcome: At 6 months, participants allocated to Fatigue In Teenagers on the interNET in the National Health Service were more likely to have improved physical function (mean 60.5, standard deviation 29.5, n = 127) compared to Activity Management (mean 50.3, standard deviation 26.5, n = 138). The mean difference was 8.2 (95% confidence interval 2.7 to 13.6, p = 0.003). The result was similar for participants meeting the National Institute for Health and Care Excellence 2021 diagnostic criteria.
Secondary outcomes: Fatigue In Teenagers on the interNET in the National Health Service participants attended, on average, half a day more school per week at 6 months than those allocated Activity Management, and this difference was maintained at 12 months. There was no strong evidence that comorbid mood disorder impacted upon the relative effectiveness of the two interventions. Similar improvement was seen in the two groups for pain and the Clinical Global Impression scale, with a mixed picture for fatigue.
Both groups continued to improve, and no clear difference in physical function remained at 12 months [difference in means 4.4 (95% confidence interval -1.7 to 10.5)]. One or more of the pre-defined measures of a worsening condition in participants during treatment, combining therapist and patient reports, were met by 39 (25%) participants in the Fatigue In Teenagers on the interNET in the National Health Service group and 42 (26%) participants in the Activity Management group.
A small gain was observed for the Fatigue In Teenagers on the interNET in the National Health Service group compared to Activity Management in quality-adjusted life-years (0.002, 95% confidence interval -0.041 to 0.045). From an National Health Service perspective, the costs were £1047.51 greater in the Fatigue In Teenagers on the interNET in the National Health Service group (95% confidence interval £624.61 to £1470.41). At a base cost-effectiveness threshold of £20,000 per quality-adjusted life-year, the incremental cost-effectiveness ratio was £457,721 with incremental net benefit of -£1001 (95% confidence interval -£2041 to £38).
Conclusion: At 6 months post randomisation, compared with Activity Management, Fatigue In Teenagers on the interNET in the National Health Service improved physical function and school attendance. The additional cost of Fatigue In Teenagers on the interNET in the National Health Service and limited sustained impact mean it is unlikely to be cost-effective.
Trial registration: This trial is registered as ISRCTN18020851.
Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 14/192/109) and is published in full in Health Technology Assessment; Vol. 28, No. 70. See the NIHR Funding and Awards website for further award information.
Keywords: ADOLESCENT; CAREGIVERS; CHILD; CHRONIC FATIGUE SYNDROME; COGNITIVE BEHAVIORAL THERAPY; E-COUNSELLING; E-THERAPY; EHEALTH; MYALGIC ENCEPHALOMYELITIS; ONLINE SYSTEMS; PARENTS; PEDIATRICS; PILOT PROJECTS; PRAGMATIC CLINICAL TRIAL; QUALITATIVE RESEARCH; RANDOMIZED CONTROLLED TRIAL; YOUNG PERSON.
6. Chronic Fatigue Syndromes: Real Illnesses That People Can Recover From
Scand J Prim Health Care. 2023 Dec;41(4):372-376. doi: 10.1080/02813432.2023.2235609. Epub 2023 Nov 29.
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
PMID: 37740918 PMCID: PMC11001335 DOI: 10.1080/02813432.2023.2235609
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 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 symptoms 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.
Keywords: Chronic fatigue syndrome; Chronic illness narrative; Long Covid; Multidimensional explanations; Myalgic encephalomyelitis; Patient-centered care; Rehabilitation strategies.
7. AWMF Mold Guideline “Medical Clinical Diagnostics for Indoor Mold Exposure” – Update 2023 AWMF Register No. 161/001
Allergol Select. 2024 May 3:8:90-198. doi: 10.5414/ALX02444E. eCollection 2024.
Julia Hurraß, Birger Heinzow, Sandra Walser-Reichenbach, Ute Aurbach, Sven Becker, Romuald Bellmann, Karl-Christian Bergmann, Oliver A Cornely, Steffen Engelhart, Guido Fischer, Thomas Gabrio, Caroline E W Herr, Marcus Joest, Christian Karagiannidis, Ludger Klimek, Martin Köberle, Annette Kolk, Herbert Lichtnecker, Thomas Lob-Corzilius, Norbert Mülleneisen, Dennis Nowak, Uta Rabe, Monika Raulf, Jörg Steinmann, Jens-Oliver Steiß, Jannik Stemler, Ulli Umpfenbach, Kerttu Valtanen, Barbora Werchan, Birgit Willinger, Gerhard A Wiesmüller
PMID: 38756207 PMCID: PMC11097193 DOI: 10.5414/ALX02444E
Abstract
None.
Keywords: dampness; diagnostics; guideline; indoor; mold.
8. The Pivotal Role of Central Sensitization in Long COVID, Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Review Expert Rev Neurother. 2025 Aug;25(8):973-989. doi: 10.1080/14737175.2025.2516097. Epub 2025 Jun 13.
Don L Goldenberg
PMID: 40512228 DOI: 10.1080/14737175.2025.2516097
Abstract
Introduction: Long COVID is a condition characterized by persistent unexplained symptoms following COVID-19 infection. These symptoms are not related to another disease or organ damage and are similar to those in fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Areas covered: The similar clinical and pathophysiological features and management of long COVID, fibromyalgia and ME/CFS are explored from the unifying framework of central sensitivity syndromes. The article is based on a literature search utilizing PubMed for content published between 2021 and 1 May 2025, using search terms: long COVID, long COVID syndrome, post-COVID-19, post-acute SARS-CoV-2, fibromyalgia, ME/CFS, post-exertional malaise and central sensitization.
Expert opinion: Once long COVID is redefined to exclude patients with well-defined organ disease, it fits best as a model of central sensitization. Long COVID is a single syndrome, rather than many distinct diseases. Optimal management of long COVID and similar central sensitivity syndromes should include personalized care with a primary care led-multidisciplinary team.
Keywords: Long COVID; brain imaging; central sensitization; chronic; fibromyalgia; myalgic encephalomyelitis/chronic fatigue syndrome; widespread pain.
9. ‘We Have No Services for You… So You Have to Make the Best Out of It’: A Qualitative Study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients’ Dissatisfaction With Healthcare Services
Health Expect. 2024 Feb;27(1):e13900. doi: 10.1111/hex.13900. Epub 2023 Oct 31.
Line Melby, Roshan das Nair
PMID: 37905602 PMCID: PMC10726260 DOI: 10.1111/hex.13900
Abstract
Introduction: People should have access to healthcare services that are effective, safe and secure, patient-centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.
Methods: We conducted in-depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3-30 years), and severity.
Results: Four main themes were developed: (1) ‘Nonexistent services’ cover patients’ experience that healthcare services had nothing to offer them after receiving their ME/CFS-diagnosis. (2) ‘Nonpersonalised services’ documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient’s need. (3) ‘Slow services’ address patients’ experience of getting services too late (or too little) to be useful. (4) ‘Wrong services’ comprise patients’ experiences of being offered and/or ‘forced’ to accept services that they felt were inappropriate for their health problems.
Conclusions: Providers’ lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers’ belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users’ unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services.
Further research should investigate how patients can be involved in service design, and also providers’ perspectives on caregiving and the barriers they experience for providing high-quality care.
Patient or public contribution: The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.
Keywords: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Norway; dissatisfaction; next of kin; patients; qualitative study; service delivery.
10. The Role of Psychotherapy in the Care of Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Medicina (Kaunas). 2023 Apr 6;59(4):719. doi: 10.3390/medicina59040719.
Tilman Grande, Bettina Grande, Patrick Gerner, Sabine Hammer, Michael Stingl, Mark Vink, Brian M Hughes
PMID: 37109676 PMCID: PMC10145115 DOI: 10.3390/medicina59040719
Abstract
Myalgic encephalomyelitis/chronic fatigue (ME/CFS) is a post-infectious, chronic disease that can lead to severe impairment and, even, total disability. Although the disease has been known for a long time, and has been coded in the ICD since 1969 (G93.3), medical research has not yet been able to reach a consensus regarding its physiological basis and how best to treat it.
Against the background of these shortcomings, psychosomatic disease models have been developed and psychotherapeutic treatments have been derived from them, but their empirical testing has led to sobering results.
According to the current state of research, psychotherapy and psychosomatic rehabilitation have no curative effect in the treatment of ME/CFS. Nevertheless, we see numerous patients in practices and outpatient clinics who suffer severely as a result of their illness and whose mental well-being and coping strategies would benefit from psychotherapeutic help.
In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.
Keywords: chronic fatigue syndrome; cognitive behavioral therapy; exercise; myalgic encephalomyelitis; pacing; post-exertional malaise; psychotherapy.