ME Association February Summary of ME/CFS Published Research | 06 March 2019

March 6, 2019


Charlotte Stephens, Research Correspondent, ME Association.

ME Association Index of Published ME/CFS Research

The Index of Published ME/CFS Research has now been updated to take account of the research that has been published during the month of February 2019.

The Index is a useful way to locate and then read all relevant research on ME/CFS. It’s free to download and comes with an interactive contents table.

This is an A-Z list of all the most important ME/CFS research studies (and selected key documents and articles), listed by subject matter and author, with links to PubMed or to the Journal it was published in.

You can also find the index in the Research section of our website.

ME/CFS research abstracts from studies published in February 2019

1.  Almenar-Perez, et al. (2019)
miRNA profiling of circulating EVs in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Journal of Extracellular Vesicles 7: 139.

Background: ME/CFS (ICD-10; G93.3) is a complex multisystem disease of unknown origin with characteristic clinical features that include postexertional malaise, cognitive dysfunction, orthostatic intolerance, ongoing flu-like symptoms and unrefreshing sleep in conjunction with other. Its worldwide prevalence is 0.4%–1% with a female to male ratio of 6:1. Current treatments rely on the management of symptoms due to a lack of understanding of the underlying mechanisms of disease onset and progression. The aim of this work was to identify biomarkers of ME/CFS by analysing miRNA profiles of patient plasma EVs and comparing them to those of their PBMCs. This information should improve our knowledge of ME/CFS and allow the development of unbiased quantitative diagnostic methods.

Methods: miRNA profiles of PBMCs or EVs isolated from plasma (Invitrogen cat.4484450) of ME/CFS patients and population, sex, age and BMI-matched healthy participants (N = 15 per group) from the ME UK Biobank (London, UK) were determined using Nanostring technology (nCounter Human v3 miRNA Expression Assay Kit). Gene ontology (GO) and the Kyoto encyclopedia of genes and genomes (KEGG) were used to determine disrupted cellular functions in ME/CFS. The study was approved by the DGSP-CSISP CEIC (ref. UCV201701), Spain. Signed informed consent was required for inclusion of samples.

Results: miRNA profiles evidenced a global trend for miRNA downregulation in patients with respect to healthy controls (76% and 64% of the miRNAs presented inhibition, by at least 50%, in PBMCs and EVs respectively; while only one miRNA in PBMCs and 6% of them in EVs showed upregulation to this level). Qualitatively, miRNA profiles in PBMCs did not match those obtained from EVs indicating active packaging of miRNAs in EVs. The functions to be affected by the deregulated miRNAs support a model of immune, mitochondrial and neural defects for this disorder.

Conclusion: This is the first report of paired PBMCs and EV miRNA profiles of ME/CFS patients by enzyme-free array technology. The results confirm previous proposals that this epigenetic mechanism is linked to the pathophysiology of ME/CFS. Validation studies with expanded cohorts are needed before particular miRNA profiles can be used as biomarkers of ME/CFS in a clinical setting.

2. Chandan JS, et al. (2019)
Association between child maltreatment and central sensitivity syndromes: a systematic review protocol.
BMJ Open 9 (2).

A growing body of evidence is identifying the link between a history of child maltreatment and a variety of adverse health outcomes ultimately leading to significant social and healthcare burden. Initial work has identified a potential association between child maltreatment and the development of a selection of somatic and visceral central sensitivity syndromes: fibromyalgia, chronic fatigue syndrome, temporomandibular joint disorder, chroniclower back pain, chronic neck pain, chronic pelvic pain, interstitial cystitis, vulvodynia, chronicprostatitis, tension-type headache, migraine, myofascial pain syndrome, irritable bowel syndrome and restless legs syndrome.

Primary electronic searches will be performed in the Embase, MEDLINE, PubMed, Scopus, PyscINFO, CINAHL and Cochrane Library databases and a number of Grey Literature sources including child protection and paediatric conference proceedings. Following independent screening of studies by two review authors, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses template will be used to aid extraction. A meta-analysis will be conducted on the included case-control and cohort studies. The Newcastle-Ottawa grading system will be used to assess the quality of included studies. Results will be expressed as pooled ORs for binary data and mean differences for continuous data.

Ethics approval will not be required. The final results of the review and meta-analysis will be submitted for peer-review publication and also disseminated at relevant conference presentations.

3. Fatt S, et al. (2019)
The Invisible Burdon of Chronic Fatugue Syndrome in the Community: a Narrative Review.
Current Rheumatology Reports 21: 5.

Unexplained fatigue is commonly reported in the general population, with varying severity. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sits at the extreme of the fatigue continuum, yet more individuals experience unexplained prolonged fatigue (1–6-month duration) or chronic fatigue (> 6 months) that, although debilitating, does not fulfil ME/CFS criteria. This review examines the empirical literature comparing symptoms for those with prolonged fatigue, chronic fatigue and ME/CFS.

Substantial overlap of self-reported psychological, physical and functional impairments exists between chronic fatigue and ME/CFS. The conversion rate from prolonged or chronic fatigue to ME/CFS is not understood. Current research has failed to uncover factors accounting for differences in fatigue trajectories, nor incorporate comprehensive, longitudinal assessments extending beyond self-reported symptoms.

Distinguishing factors between prolonged fatigue, chronic fatigue and ME/CFS remain poorly understood, highlighting a need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.

4. Geraghty K and Adeniji C(2019)
The ‘Cognitive Behavioural Model' of Chronic Fatigue Syndrome: Critique of a Flawed Model 
Health Psychology Open [Epub ahead of print].

Chronic fatigue syndrome/myalgic encephalomyelitis is a debilitating illness that greatly impacts the lives of sufferers. A cognitive behavioural model attempts to explain illness onset and continuance with a hypothesis that the illness is perpetuated by patients' irrational beliefs and avoidance behaviours.

This theory underpins the promotion of cognitive behavioural therapy, a treatment that aims to change beliefs and behaviours. This paper reports on a detailed review of the cognitive behavioural model.

Our review finds that the model lacks high-quality evidential support, conflicts with accounts given by most patients, and fails to account for accumulating biological evidence of pathological and physiological abnormalities found in patients. There is little scientific credibility in the claim that psycho-behavioural therapies are a primary treatment for this illness.

5. Haines C, Loades M and Davis C (2019)
Illness perceptions in adolescents with chronic fatigue syndrome and other physical health conditions: Application of the common sense model
Clinical Child Psychology and Psychiatry [Epub ahead of print].

Background: The common sense model (CSM) proposes that illness perceptions guide coping and illness management, which subsequently affects outcomes. Chronic fatigue syndrome (CFS) is associated with severe functional impairment. CFS is distinct from other physical health conditions in that individuals can experience high levels of uncertainty, stigma and disbelief from others. This study aimed to compare illness perceptions in adolescents with CFS with other physical health conditions, using a cross-sectional, between-groups design.

Methods: Adolescents (aged 11-18) with CFS ( n = 49), type 1 diabetes ( n = 52) and juvenile idiopathic arthritis ( n = 42) were recruited through National Health Service (NHS) clinics and online, and completed a series of questionnaires.

Results: Adolescents with CFS differed on the perceived consequences, timeline, personal control, treatment control, identity and understanding dimensions of illness perceptions. Except for identity, these dimensions were predicted by health condition even when accounting for age, gender, fatigue, physical functioning, anxiety and depression.

Conclusions: Results offer preliminary evidence for the applicability of the CSM in adolescents, with implications for supporting adolescents with physical health conditions. Results suggest that psychological interventions targeting perceived control, understanding and identity may have particular utility for adolescents with CFS.

6. Kerr JR. (2019)
Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis.
Frontiers in Pediatrics [Epub ahead of print].

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) is a chronic multisystem disease characterised by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognised but to date are difficult to identify objectively. The disease may be triggered by infection with a variety of micro-organisms, including Epstein-Barr virus (EBV).

A subset of CFS/ME patients exhibit up regulation of EBV virus induced gene 2 (EBI2) mRNA in peripheral blood mononuclear cells (PBMC), and these patients appear to have a more severe disease phenotype and lower levels of EBNA1 IgG. EBI2 is induced by EBV infection and has been found to be upregulated in a variety of autoimmune diseases. EBI2 is a critical gene in immunity and central nervous system function; it is a negative regulator of the innate immune response in monocytes. Its heterogeneous expression in CFS/ME could explain the variable occurrence of a variety of immune and neurological abnormalities which are encountered in patients with CFS/ME. The EBI2 subtype occurred in 38-55% CFS/ME patients in our studies.

Further work is required to confirm the role of EBV and of EBI2 and its oxysterol ligands in CFS/ME, and to identify the most practical means to identify patients of the EBI subtype. There are two EBI2 antagonists currently in development, and these may hold promise for the treatment of CFS/ME patients of the EBI subtype.

7. Khoo T, Proudman S and Limaye V (2019)
Silicone breast implants and depression, fibromyalgia and chronic fatigue syndrome in a rheumatology clinic population.
Clinical Rheumatology [Epub ahead of print].

Introduction: Silicone breast implants (SBI) may induce systemic autoimmune disease as part of autoimmune syndrome induced by adjuvants (ASIA). This syndrome bears similarities to fibromyalgia and chronic fatigue syndrome (CFS). We sought to determine whether there are any associations between SBI and depression, fibromyalgia and CFS in a rheumatology clinic population.

Methods: The electronic files of rheumatology clinic patients at the Royal Adelaide Hospital between 2000 and 2017 were searched for patients who had received SBI prior to rheumatological diagnosis. Demographics, diagnosis, implant history and whether the patient had depression, fibromyalgia or CFS were recorded. Controls were rheumatology clinic patients, half of whom had systemic sclerosis (SSc) and the other half had systemic lupus erythematosus (SLE). They were matched to cases 3:1 for age (within 2 years) and gender.

Results: Thirty patients had received SBI (mean age 47.9, 100% female). Twelve had a diagnosis of depression, 6 of fibromyalgia and 3 of CFS. Implant rupture was not associated with any of these (p = 1). There was no difference in the incidence of depression (p = 1), fibromyalgia (p = 0.76) or CFS (p = 0.3) between cases and SLE controls. When compared with SSc controls, there were significantly more patients with fibromyalgia and/or CFS in the case group (20.0% of cases vs 2.2% of SSc controls, p = 0.01) but no difference in depression (p = 0.12).

Conclusion: Fibromyalgia and CFS are more common in patients with silicone implants than SSc controls but not SLE controls. Prospective study of development of depression, fibromyalgia and CFS in recipients of SBI is required.

8. Knight S, et al. (2019)
Epidemiology of paediatric chronic fatigue syndrome in Australia.
Archives of Disease in Childhood [Epub ahead of print].

Objective: To estimate the paediatrician-diagnosed incidence of chronic fatigue syndrome(CFS) in Australia, and describe demographic and clinical features, as well as approaches to diagnosis and management.

Methods: The Australian Paediatric Surveillance Unit facilitates monthly national surveillance of uncommon conditions seen by paediatricians. Data from young people aged <18 years diagnosed with CFS were collected. Incidence was estimated based on new cases reported from April 2015 to April 2016.

Results: A total of 164 cases of newly diagnosed CFS in young people aged 4-17 years were identified for inclusion. The estimated national incidence for children aged 4-9 years was 0.25 per 100 000 per annum. In children aged 10-17 years, the estimated incidence of paediatrician-diagnosed cases for Victoria (17.48 per 100 000) was substantially greater than other Australian states (range 1.31-5.51 per 100 000). Most cases were female and Caucasian, most commonly presenting after an infectious illness with symptoms gradual in onset. The majority were diagnosed at least 13 months after symptom onset. Symptoms, associations, investigations and management strategies were highly variable.

Conclusions: Current findings suggest that, consistent with other countries, the Australian incidence of CFS in children aged <10 years is very low. In contrast, the national incidence of CFS in older children and adolescents (aged 10-17 years) is more unclear, with marked variability between geographical regions apparent. This may be due to variation in service accessibility and clinician understanding of CFS. Accordingly, national initiatives to improve equity of care for children with CFS may be required.

9. Melenotte C, et al. (2019)
Post-bacterial infection chronic fatigue syndrome is not a latent infection.
Medecine et Maladies Infectieuses [Epub ahead of print]

Post-infectious chronic fatigue syndrome is a public health problem. Etiologies and physiopathological mechanisms are unknown. Some viruses are known to be involved in post-infectious chronic fatigue syndrome, but the role of bacterial infection is still questioned, especially in cases of post-treatment Lyme disease syndrome where subjective symptoms are regularly attributed to the presence of the dormant bacterium without scientific evidence. However, the medical experience of recalcitrant infections, relapses, and reactivations questions the role of “dormant bacteria” in asymptomatic latent infections as well as in subjective symptoms.

We summarized scientific literature data on post-bacterial infection chronic fatigue syndrome, the role of dormant bacteria in latent infections, and bacterial asymptomatic carriage. Subjective symptoms described in post-infectious chronic fatigue syndromes are still misunderstood and there is no evidence suggesting that such symptoms could be related to dormant bacterial infection or carriage of viable bacteria. Psychological trauma may be part of these subjective symptoms. Post-infectious chronic fatigue syndrome could nonetheless be due to unknown microorganisms. Antibiotic treatment is not required for latent infections, except for latent syphilis and latent tuberculosis infections to prevent, after the primary infection, progression to the secondary or tertiary stage of the disease.

10. Morris G. et al. (2019)
Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?
Metabolic Brain Disease 1-31.

A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and nitrosative stress in genetically predisposed individuals.

The consequences are detailed, including the role of increased intestinal permeability and the translocation of commensal antigens into the circulation, and the development of dysautonomia, neuroinflammation, and neurocognitive and neuroimaging abnormalities. Increasing levels of such stress and the switch to immune and metabolic downregulation are detailed next in relation to the advent of hypernitrosylation, impaired mitochondrial performance, immune suppression, cellular hibernation, endotoxin tolerance and sirtuin 1 activation.

The role of chronic stress and the development of endotoxin tolerance via indoleamine 2,3-dioxygenase upregulation and the characteristics of neutrophils, monocytes, macrophages and T cells, including regulatory T cells, in endotoxin tolerance are detailed next. Finally, it is shown how the immune and metabolic abnormalities of chronic fatigue syndrome can be explained by endotoxin tolerance, thus completing the model.

11. Natelson BH (2019)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences.
Clinical Therapeutics [Epub ahead of print].

This commentary presents a simplified way of making the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) using the 1994 Centers for Disease Control and Prevention case definition. The format used can easily be modified for other case definitions.

The commentary then discusses whether ME/CFS is the same or a different illness from fibromyalgia. Because overlap exists between the 2 syndromes, some investigators have posited that they are variants of the same illness. I have viewed this as an empirically testable hypothesis and have summoned considerable amounts of data that suggest that the 2 illnesses differ. Were differences to exist, that would suggest different pathophysiologic processes for each, leading to different treatments.

12. O’Leary D (2019)
Ethical classification of ME/CFS in the United Kingdom.
Bioethics [Epub ahead of print].

Few conditions have sparked as much controversy as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professional consensus has long suggested that the condition should be classified as psychiatric, while patients and advocacy groups have insisted it is a serious biological disease that requires medical care and research to develop it. This longstanding debate shifted in 2015, when U.S. governmental health authorities fully embraced medical classification and management.

Given that some globally respected health authorities now insist that ME/CFS is a serious biological disease, this paper asks whether it can be ethical for the U.K. practice guideline now in development to characterize the condition as a mental health disorder. Following a brief history of ME/CFS controversy, I offer three arguments to show that it would be unethical for the U.K. to now characterize ME/CFS as a mental health condition, considering the relevance of that conclusion for ME/CFS guidelines elsewhere and for other contested conditions.

13. Robinson LJ, et al. (2019)
Impairments in cognitive performance in chronic fatigue syndrome are common, not related to co-morbid depression but do associate with autonomic dysfunction.
PLoS One 14 (2).


Objectives: To explore cognitive performance in chronic fatigue syndrome (CFS) examining two cohorts. To establish findings associated with CFS and those related to co-morbid depression or autonomic dysfunction.

Methods: Identification and recruitment of participants was identical in both phases, all CFSpatients fulfilled Fukuda criteria. In Phase 1 (n = 48) we explored cognitive function in a heterogeneous cohort of CFS patients, investigating links with depressive symptoms (HADS). In phase 2 (n = 51 CFS & n = 20 controls) participants with co-morbid major depression were excluded (SCID). Furthermore, we investigated relationships between cognitive performance and heart rate variability (HRV).

Results: Cognitive performance in unselected CFS patients is in average range on most measures. However, 0-23% of the CFS sample fell below the 5th percentile. Negative correlations occurred between depressive symptoms (HAD-S) with Digit-Symbol-Coding (r = -.507, p = .006) and TMT-A (r = -.382, p = .049). In CFS without depression, impairments of cognitive performance remained with significant differences in indices of psychomotor speed (TMT-A: p = 0.027; digit-symbol substitution: p = 0.004; digit-symbol copy: p = 0.007; scanning: p = .034) Stroop test suggested differences due to processing speed rather than inhibition. Both cohorts confirmed relationships between cognitive performance and HRV (digit-symbol copy (r = .330, p = .018), digit-symbol substitution (r = .313, p = .025), colour-naming trials Stroop task (r = .279, p = .050).

Conclusion: Cognitive difficulties in CFS may not be as broad as suggested and may be restricted to slowing in basic processing speed. While depressive symptoms can be associated with impairments, co-morbidity with major depression is not itself responsible for reductions in cognitive performance. Impaired autonomic control of heart-rate associates with reductions in basic processing speed.

14. Roma M, et al. (2019)
Impaired Health-Related Quality of Life in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Impact of Core Symptoms.
Frontiers in Pediatrics 7:26.

Objective: The objectives of this study were to compare the health-related quality of life (HRQOL) of a North American population of adolescents and young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to (1) healthy controls (HC), (2) adolescents with ME/CFS in other countries, and (3) other forms of pediatric chronic illness, and (4) to examine the influence of the core illness symptoms in the Institute of Medicine (IOM) case definition on impaired HRQOL.

Study design: Cross-sectional study comparing individuals with ME/CFS referred to a tertiary care Chronic Fatigue clinic and HC. Eligible participants were age 10–30 years and met the Fukuda criteria for CFS. HC were eligible if they were age 10–30 years, with self-reported good, very good, or excellent general health. Pediatric HRQOL was measured using the PedsQL (Pediatric Quality of Life Inventory) and other validated instruments.

Results: We enrolled 55 consecutive ME/CFS patients (46 F) aged 10–23 years. From a pool of 69 potential HC we selected 55 with similar age and gender distribution for comparison. The total and subscale scores on the PedsQL and on all other measures of HRQOL indicated significantly worse function among those with ME/CFS (all P < 0.001). The self-reported frequency of post-exertional malaise (PEM) was significantly associated with the severity of impaired HRQOL (P < 0.001). Cognitive impairment had a weaker association with the PedsQL score (P = 0.02). Orthostatic intolerance was present in 96% of the ME/CFS population. Of the 55 who satisfied the Fukuda criteria, 47 (85%) also satisfied the IOM criteria for the diagnosis. Those meeting the IOM criteria had worse PedsQL total scores than those meeting just the Fukuda criteria (P < 0.001).

Conclusions: HRQOL was substantially lower in an ambulatory population of adolescents and young adults with ME/CFS than for healthy controls in North America, consistent with reports from other continents. HRQOL was also lower in ME/CFS than has been described in children with asthma, diabetes mellitus, epilepsy, eosinophilic gastroenteritis, and cystic fibrosis. The findings of this study lend further support to the inclusion of PEM, cognitive impairment, and orthostatic intolerance as core symptoms of pediatric ME/CFS.

15. Rowe KS. (2019)
Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service.
Frontiers in Pediatrics.

Aim: To determine the reported duration of illness, the functional and educational long-term outcomes, predictive factors for recovery and seek feedback regarding management in pediatric/adolescent myalgic encepahalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods: A cohort observational study of 784 young people, mean age 14.6 (6–18) years, with ME/CFS diagnosed at a specialist pediatric hospital and receiving regular care, was conducted with follow-up for a mean 8 (range 1–21) years after onset. Baseline symptoms, history, depression and anxiety questionnaires were available from 418. The remaining 366, did not have similar standardized baseline information. Questionnaires requested functional rating, persistent symptoms, duration of illness if “recovered,” social engagement and school/work attendance. Feedback was sought regarding management, support services, useful information, helpful interventions or personnel and use of alternative therapies. Reported recovery and function were compared with baseline information and between the two groups.

Results: Follow-up data were returned from 81.8%. There was no significant difference in functional score (if reported recovery) or illness duration related to provision of baseline data. The mean duration of illness was 5 (range 1–15) years in the 50% who reported recovery. By 5 years 38% and by 10 years 68% reported recovery. At 10 years the mean functional score was 8/10 (range 2–10) with 5% scoring <6. Depression, anxiety or severity of illness at diagnosis was not predictive of non-recovery. Designing and monitoring their own management plan that included educational, social, physical and enjoyable activities, as well as having symptom management and understanding professionals were highly valued. However, remaining engaged in an education system that flexibly accommodated their illness and aspirations was consistently reported as crucial for long term functioning.

Conclusions: ME/CFS in young people has a mean duration of 5 years (1–15) with 68% reporting recovery by 10 years. All improved functionally with 5% remaining very unwell and a further 20% significantly unwell. There were no obvious baseline predictors for recovery. However, depression, anxiety, orthostatic intolerance and to a lesser extent pain at follow up were identified as hampering recovery or function. Supportive professionals, remaining engaged in education and management strategies were identified as helpful.

16. Tomas C and Elson JL (2019)
The role of mitochondria in ME/CFS: a perspective.
Fatigue: Biomedicine, Health & Behaviour.

Chronic fatigue syndrome (CFS) also known as Myalgic encephalomyelitis (ME) is a debilitating disease, characterized by the symptom of severe fatigue. ME/CFS is a heterogeneous condition in both clinical presentation and disease duration. A diagnosis of ME/CFS is based on the exclusion of other diseases due to a current lack of known biomarkers for the disease. Patients may be split into categories based on the severity of their illness – mild, moderate and severe.

Here we consider some of the recent advances in the understanding of mitochondrial dysfunction and mitochondrial DNA (mtDNA) variation that may have relevance to ME/CFS. Thus far, we have shown that ME/CFS patients do not harbor proven mtDNA mutations, another exclusion, albeit an important one. As such this group of patients do not fall within the category of patients with mitochondrial disorder. If ME/CFS patients have some form of mitochondrial dysfunction, the form and cause of this dysfunction is a matter of debate.

The current data underlines the need to move from small studies to larger endeavors applying multiple methods to well-defined cohorts with samples taken longitudinally.

17. Tsai SY, et al. (2019)
Increased risk of chronic fatigue syndrome in patients with inflammatory bowel disease: a population-based retrospective cohort study.
Journal of Translational Medicine 17 (1): 55.

Background: Similarities in the symptoms of chronic fatigue syndrome (CFS) and inflammatory bowel disease (IBD) have been observed as follows: severe disease activity in IBD correlates with severe fatigue, major psychiatric signs, the common use of medication, and bacterial translocation. One of several hypotheses for explaining the mechanisms underlying CFS suggests a similarity to the impaired intestinal mucosa of IBD. “This study investigated the risk of incident CFS among patients with IBD”.

Methods: We conducted a population-based retrospective cohort study by using Taiwan's National Health Insurance Research Database to evaluate the subsequent risk of CFS in patients with IBD, according to demographic characteristics and comorbidities. The exposure cohort comprised 2163 patients with new diagnoses of IBD. Each patient was randomly selected and frequency matching according to gender and age with four participants from the general population who had no history of CFS at the index date (control cohort). Cox proportional hazards regression analysis was conducted to estimate the relationship between IBD and the subsequent risk of CFS.

Results: The exposure cohort had a significantly higher overall risk of subsequent CFS than that of the control group [adjusted hazard ratio (Christophi in Inflamm Bowel Dis 18(12):2342-2356, 2012) = 2.25, 95%, confidence interval (Aaron and Buchwald in Ann Intern Med 134(9 Pt 2):868-881, 2001; Farraye et al. in Am J Gastroenterol 112:241, 2017) 1.70-2.99]. Further analysis indicated a significantly higher risk of CFS in patients who were male (HR = 3.23, 95% CI 2.12-4.91), were older than 35 years, and had IBD but without comorbidity status, e.g. Cancers, diabetes, obesity, depression, anxiety, sleep disorder, renal disease (HR = 2.50, 95% CI 1.63-3.84) after adjustment.

Conclusion: The findings from this population-based retrospective cohort study suggest that IBD, especially Crohn's disease, is associated with an increased risk of subsequent CFS.

18. Williams AM, Christopher G and Jenkinson E. (2019)
The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration.
Journal of Health Psychology 24 (2): 264-275.

Chronic fatigue syndrome/myalgic encephalomyelitis can limit functional capacity, producing various degrees of disability and psychological distress. Semi-structured interviews explored the experiences of adults with chronic fatigue syndrome/myalgic encephalomyelitis being physically dependent on other people for help in daily life, and whether physical dependency affects their psychological well-being.

Thematic analysis generated six themes: loss of independence and self-identity, an invisible illness, anxieties of today and the future, catch-22, internalised anger, and acceptance of the condition. The findings provide insight into the psychological impact of dependency. Implications for intervention include better education relating to chronic fatigue syndrome/myalgic encephalomyelitis for family members, carers, and friends; ways to communicate their needs to others who may not understand chronic fatigue syndrome/myalgic encephalomyelitis; and awareness that acceptance of the condition could improve psychological well-being.

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1 thought on “ME Association February Summary of ME/CFS Published Research | 06 March 2019”

  1. Re. Melanotte 9)
    The authors have considered “scientific literature data on post-bacterial infection chronic fatigue syndrome, the role of dormant bacteria in latent infections, and bacterial asymptomatic carriage. There is no evidence suggesting that such symptoms could be related to dormant bacterial infection or carriage of viable bacteria” but “psychological trauma may be part of these subjective symptoms”
    1) If latent infection is found, then it can be argued that the patients be removed from the syndrome and re-diagnosed. This has happened in e.g. Lyme cases, but not after much suffering and delayed diagnosis on the basis that there is “no evidence” of latent bacterial infection (until the patient goes to another doctor, is treated and cured). Often such patients are told they have CFS/ME but can’t have latent bacterial infection, because such infections do not occur in ME – a circular and damnable argument. Meanwhile, the question as to whether Lyme patients have SEID is still open and late stage Lyme can certainly cause encephalomyelitis and frquently myalgia.
    2) What evidence is there of trauma in ME? Evidence may be weak or strong and is not the same as proof. Are the authors demanding proof in 1) and accepting less substantial evidence in 2)? Would they remove Lyme victims from their CFS, but leave trauma victims in?
    3) “Quasi-infections” e.g. overgrowth of commensal intestinal bacteria has been implicated in FM and there is frequent cross diagnosis between FM and CFS/ME. However people may feel about this confusing diagnostic situation, it is the case. A person with a diagnosis of ME may have SIBO based FM (and possibly CFS/ME). SIBO is not a classic infection but may respond to antibiotics and there is both scientific (Pimental)and anecdotal evidence for SIBO based FM.
    4) ” Post-infectious chronic fatigue syndrome could nonetheless be due to unknown microorganisms. Antibiotic treatment is not required for latent infections”.
    How do they know that unknown microorganisms will not be antibiotic sensitive? The bold statement “Antibiotic treatment is not required for latent infections, except for latent syphilis and latent tuberculosis” is a blanket assertion which many would dispute. TB and syphilis are not ME are not easily confused with ME and their appearance here is curious. Perhaps another underhand swipe at long term un/undertreated Lyme, which is confusable with ME and may represent an overlapping condition. Perhaps not….

    However sincere the authors may be, application of their claims can do harm in practice.

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