Tag: 2025

Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.

Objective: We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.

Methods: We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.

Results: Over four years, eight VOP stories were completed and posted on CDC’s ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.

Conclusions: Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.

Source: Brimmer DJ, Lin JS, Unger ER. Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words. Fatigue. 2025;13(2):1-11. doi: 10.1080/21641846.2024.2444826. PMID: 40123856; PMCID: PMC11926923. https://pmc.ncbi.nlm.nih.gov/articles/PMC11926923/ (Full text)

Assessing fatigue in myalgic encephalomyelitis/chronic fatigue syndrome patients before and after treatment with bright light therapy: A prospective randomized controlled crossover study

Abstract:

Objective: The aim of the current study was to test the effectiveness of treatment with bright light therapy (BLT) on fatigue and cognitive function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A randomized-controlled cross-over study design was chosen in order to provide all patients access to BLT treatment and account for placebo effects.

Methods: In this study, a total of 36 outpatients with a diagnosis of ME/CFS according to the criteria of the Institute of Medicine (2015) were randomly assigned to a cross-over design starting out either with BLT or waitlist for the course of 2 weeks with a washout phase in between. Portable light boxes emitting full-spectrum visible light with a luminance intensity of 10,000 lux were used by the participants at home. Primary outcome of the study was fatigue as assessed by Chalder Fatigue Score (CFQ) and the secondary outcome variable was cognitive function assessed per standardized test battery (Test of Attentional Performance – TAP).

Results: The primary outcome variable fatigue was not significantly improved after treatment with BLT compared to wait list in the full crossover design, although fatigue scores improved immediately after two weeks of BLT. Additionally, patients showed decreased reaction time after treatment with BLT in a subtest of TAP compared to wait list. Over 45 % of patients were diagnosed with postural tachycardia syndrome.

Conclusion: BLT for two weeks is not effective for the treatment of fatigue in ME/CFS, but it might have beneficial effects on attention in patients with ME/CFS. The clinical trial is registered with www.

Clinicaltrials: gov (NCT06635928).

Source: Ludwig B, Hauer L, Böck M, Schillerwein-Kral C, Weyer L, Moser D, Zehetmayer S, Trimmel K, Seidel S. Assessing fatigue in myalgic encephalomyelitis/chronic fatigue syndrome patients before and after treatment with bright light therapy: A prospective randomized controlled crossover study. Sleep Med. 2025 Mar 14;129:369-374. doi: 10.1016/j.sleep.2025.03.003. Epub ahead of print. PMID: 40120538. https://www.sciencedirect.com/science/article/pii/S1389945725001200 (Full text)

Cognitive Impairments in Two Samples of Individuals with ME/CFS and Long COVID: A Comparative Analysis

Abstract:

Cognitive impairments, including memory and concentration difficulties, are common in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID. These conditions frequently co-occur, but it remains unclear how cognitive difficulties differ between individuals with ME/CFS, long COVID, both, or neither. The purpose of this study was to examine cognitive impairment presence and type for individuals with and without these conditions.

Data from the 2022 and 2023 National Health Interview Survey were analyzed. Participants included 27,512 and 29,404 U.S. adults in 2022 and 2023, respectively. Survey weights and variance estimation variables were utilized and multivariate logistic regression models assessed the likelihood of cognitive difficulty, accounting for sociodemographics and shared variance. Participants from both cohorts were primarily female, white, and non-Hispanic/Latine, with an average age of 48.1 years in both cohorts.

ME/CFS (aOR 6.18; 95% CI 4.82-7.93; aOR 5.33; 95% CI 4.04-7.05) and long COVID (aOR 2.01; 95% CI 1.67-2.44; aOR 2.16; 95% CI 1.82-2.56) were significantly associated with reported cognitive difficulties, after controlling for the other condition and sociodemographic factors. Individuals with ME/CFS, particularly those with comorbid long COVID, are especially prone to memory and concentration difficulties.

Source: Sirotiak Z, Adamowicz JL, Thomas EBK. Cognitive Impairments in Two Samples of Individuals with ME/CFS and Long COVID: A Comparative Analysis. J Clin Psychol Med Settings. 2025 Mar 22. doi: 10.1007/s10880-025-10074-4. Epub ahead of print. PMID: 40120036. https://pubmed.ncbi.nlm.nih.gov/40120036/

Gulf War Illness: A Historical Review and Considerations of a Post-Viral Syndrome

Abstract:

Gulf War Illness (GWI) is a condition that affects 30-40% of nearly 700,000 Veterans who were deployed to Operations Desert Shield/Storm/Sabre (ODS/S/S) between August 1990 and June 1991 and is characterized by a constellation of symptoms, including fatigue, mood/cognition, chronic pain, gastrointestinal (most frequently referred to as “irritable bowel syndrome”), respiratory, and skin issues.

We review the development of various case definitions for GWI, as well as exposure theories. Despite heavy investment in research, both the pathophysiology and underlying cause of GWI remain areas of active inquiry. Similarities have previously been noted in symptomatology between GWI and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and more recently, long COVID (LC), a late effect of infection with the Severe Acute Respiratory Syndrome Corona Virus-2 (SARS-CoV-2).

These conditions are discussed with respect to the similarities of their symptomatology and pathophysiology. Long COVID is a post-viral syndrome, and ME/CFS is widely considered to be likely post-infectious as well. This comparison leads to the proposal of the hypothesis that GWI may also be post-viral. Given the similarity of GWI and LC, it is possible that Veterans with GWI had an antecedent infection with a virus related to SARS-CoV-2, potentially the Middle East Respiratory Syndrome Coronavirus (MERS) or an ancestor of this virus. The MERS antibodies have been found in dromedary camels in Saudi Arabia since 1983 to the present, including the time of ODS/S/S. There is abundant evidence to support further investigation into this topic.

Source: Bast E, Jester DJ, Palacio A, Krengel M, Reinhard M, Ashford JW. Gulf War Illness: A Historical Review and Considerations of a Post-Viral Syndrome. Mil Med. 2025 Mar 21:usaf092. doi: 10.1093/milmed/usaf092. Epub ahead of print. PMID: 40117126. https://pubmed.ncbi.nlm.nih.gov/40117126/

Predisposing and Precipitating Factors in Epstein–Barr Virus-Caused Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Long COVID following SARS-CoV-2 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) following infectious mononucleosis (IM) are two examples of post-viral syndromes. The identification of risk factors predisposing patients to developing and maintaining post-infectious syndromes may help uncover their underlying mechanisms.
The majority of patients with ME/CFS report infectious illnesses before the onset of ME/CFS, with 30% of cases of ME/CFS due to IM caused by the Epstein–Barr virus. After developing IM, one study found 11% of adults had ME/CFS at 6 months and 9% had ME/CFS at 1 year. Another study of adolescents found 13% and 7% with ME/CFS at 6 and 12 months following IM, respectively. However, it is unclear which variables are potential risk factors contributing to the development and maintenance of ME/CFS following IM, because few prospective studies have collected baseline data before the onset of the triggering illness.
The current article provides an overview of a study that included pre-illness predictors of ME/CFS development following IM in a diverse group of college students who were enrolled before the onset of IM. Our data set included an ethnically and sociodemographically diverse group of young adult students, and we were able to longitudinally follow these youths over time to better understand the risk factors associated with the pathophysiology of ME/CFS.
General screens of health and psychological well-being, as well as blood samples, were obtained at three stages of the study (Stage 1—Baseline—when the students were well, at least 6 weeks before the student developed IM; Stage 2—within 6 weeks following the diagnosis of IM, and Stage 3—six months after IM, when they had either developed ME/CFS or recovered). We focused on the risk factors for new cases of ME/CFS following IM and found factors both at baseline (Stage 1) and at the time of IM (Stage 2) that predicted nonrecovery. We are now collecting seven-year follow-up data on this sample, as well as including cases of long COVID. The lessons learned in this prospective study are reviewed.
Source: Jason LA, Katz BZ. Predisposing and Precipitating Factors in Epstein–Barr Virus-Caused Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Microorganisms. 2025; 13(4):702. https://doi.org/10.3390/microorganisms13040702 https://www.mdpi.com/2076-2607/13/4/702 (Full text)

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Diagnostic and Communication Case Study for Health Care Providers in Training

Abstract:

Introduction: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex illness. No diagnostic tests exist; illness evaluation relies on medical history, physical exam, and laboratory tests. While more is known about ME/CFS in adults, it can affect children and adolescents as a chronic condition.

Methods: We implemented an ME/CFS pediatric educational activity (diagnosis, management, and communication) with medical, physician assistant, and nursing students at one university and with medical students at a second university. Pretests, two videos and slides, and posttests were completed in approximately 40 minutes. Evaluation included quantitative and qualitative measures for knowledge, attitudes, beliefs, confidence, and clinical information about ME/CFS.

Results: The first group included 31 students who reported low familiarity and clinical exposure to ME/CFS. At posttest, 25 students (81%) recognized ME/CFS as a medical condition compared to seven (23%) at pretest. Using 0-5 scales, mean pretest-to-posttest ability to diagnose increased from 1.0 to 3.5, and confidence to communicate increased from 1.4 to 3.9. The second group, including 26 students pretest and 19 posttest, also reported low familiarity and clinical exposure The posttest showed increased self-rated ability to diagnose (pretest M: 0.6, posttest M: 3.3) and confidence to communicate (pretest M: 1.4, posttest M: 3.7). Qualitative feedback for this group showed understanding of pediatric ME/CFS symptoms, management, and communication.

Discussion: This educational activity increased knowledge of ME/CFS as self-reported ability to make a diagnosis and increased confidence to communicate about pediatric ME/CFS. Participating students showed changes in attitudes towards ME/CFS as a medical condition.

Source: Brimmer DJ, Lin JS, Selinger HA, Issa A, Fall EA, Unger ER. Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Diagnostic and Communication Case Study for Health Care Providers in Training. MedEdPORTAL. 2025 Mar 14;21:11507. doi: 10.15766/mep_2374-8265.11507. PMID: 40092054; PMCID: PMC11906784. https://pmc.ncbi.nlm.nih.gov/articles/PMC11906784/ (Full text)

Efficacy of vitamin D replacement therapy on 28 cases of myalgic encephalomyelitis/chronic fatigue syndrome after COVID-19 vaccination

Abstract:

Background: Prolonged symptoms have been reported following both COVID-19 infection and vaccination, with some cases leading to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Of 80 patients presenting to our hospital with postvaccination syndrome, 28 met the diagnostic criteria for ME/CFS. We conducted a retrospective study on these 28 patients.

Methods: We measured serum 25-hydroxyvitamin D levels in 28 patients who developed ME/CFS after COVID-19 vaccination between August 2022 and February 2024. Vitamin D replacement therapy included dietary counseling, sun exposure recommendations, and oral vitamin D supplementation. We evaluated changes in blood vitamin D levels and symptom improvement.

Results: At initial visit, 27 of 28 patients diagnosed with ME/CFS had insufficient or deficient serum 25-hydroxyvitamin D levels (16 ± 4 ng/mL, mean ± SD). Following vitamin D replacement therapy, we observed an increase in blood vitamin D levels (28 ± 5 ng/mL) associated with a decrease in ME/CFS diagnostic symptoms (from 10.3 ± 2.1 to 3.3 ± 2.0). Notably, 23 of 28 patients (82%) no longer met ME/CFS diagnostic criteria after the therapy. Among the symptoms, sleep problems showed the most improvement (71%), followed by autonomic symptoms (68%).

Conclusions: For patients developing ME/CFS after COVID-19 vaccination with insufficient or deficient vitamin D levels, appropriate vitamin D replacement therapy under medical guidance may lead to symptomatic relief. We are preparing a randomized controlled trial to evaluate the efficacy of vitamin D replacement therapy in individuals with ME/CFS who have developed vitamin D deficiency following COVID-19 infection or vaccination.

Source: Kodama S, Konishi N, Hirai Y, Fujisawa A, Nakata M, Teramukai S, Fukushima M. Efficacy of vitamin D replacement therapy on 28 cases of myalgic encephalomyelitis/chronic fatigue syndrome after COVID-19 vaccination. Nutrition. 2025 Feb 18;134:112718. doi: 10.1016/j.nut.2025.112718. Epub ahead of print. PMID: 40090177. https://www.sciencedirect.com/science/article/pii/S089990072500036X (Full text)

Letter: Time to correct the record on the global burden of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Dear Editor,

We have read Lim et al.’s study [1] with great interest. Studies of this illness are scarce, so their article is important in establishing the global prevalence systematically. In fact, it has been cited over 200 times and has had a significant influence on global reporting of the burden of ME/CFS. Unfortunately, the core figure that is most frequently drawn from the article is a significant underestimate of the prevalence of ME/CFS, and has led to the spread of misinformation about the burden of this disease.

A global ME/CFS population of 17 to 24 million people is reported in articles such as those published in BMC Medicine [2] and Science [3], all referencing Lim et al. The same range of numbers is also easy to find in patient advocacy websites and news reports, such as those of the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society [4] and CNN [5], all updated after Lim et al.’s article was published. However, this figure is drawn from the Background section of Lim et al.’s article, where they state, “In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition [14], which is likely to be as common as rheumatoid arthritis” [1]. The cited reference (reference [14]) is an article about the global burden of multiple sclerosis, and is not relevant to the global ME/CFS population.

The actual headline result of the study by Lim et al. was an estimated prevalence of 0.89% using the CDC-1994 definition, as indicated in the Discussion and Conclusions sections of their article [1]. If we correctly apply this to the global population of 8 billion, the true prevalence of ME/CFS would be 71.2 million (71,200,000). However, new research using more up-to-date datasets and methods is essential to gain a full understanding of the burden of this disease.

Due to this unfortunate misreading and misattribution by others of an erroneous reference in the Background section of Lim et al.’s article, there is widespread underestimation of the true burden of ME/CFS. Such underestimation may exacerbate the isolation, stigmatization, and suffering of people living with this poorly-understood and under-recognized illness. More effort is needed to correct this underestimation globally, develop treatment methods and welfare support, and relieve the burden of ME/CFS. Correct reporting of the true prevalence of this disease is an important first step to addressing the ongoing neglect that its sufferers experience, and this can begin with the correct reporting of Lim et al.’s research.

Source: Vardaman M, Gilmour S. Letter: Time to correct the record on the global burden of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Transl Med. 2025 Mar 14;23(1):331. doi: 10.1186/s12967-025-06281-0. PMID: 40087760. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06281-0 (Full text)

Cognitive Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Aetiology and Potential Treatments

Abstract:

Systemic infection and inflammation impair mental function through a combination of altered attention and cognition. Here, we comprehensively review the relevant literature and report personal clinical observations to discuss the relationship between infection, peripheral inflammation, and cerebral and cognitive dysfunction in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Cognitive dysfunction in ME/CFS could result from low-grade persistent inflammation associated with raised pro-inflammatory cytokines. This may be caused by both infectious and non-infectious stimuli and lead to altered regional cerebral blood flow accompanied by disturbed neuronal function. Immune dysregulation that manifests as a subtle immunodeficiency or the autoimmunity targeting of one or more neuronal receptors may also be a contributing factor.

Efforts to reduce low-grade systemic inflammation and viral reactivation and to improve mitochondrial energy generation in ME/CFS have the potential to improve cognitive dysfunction in this highly disabling condition.

Source: Bansal AS, Seton KA, Brooks JCW, Carding SR. Cognitive Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Aetiology and Potential Treatments. Int J Mol Sci. 2025 Feb 22;26(5):1896. doi: 10.3390/ijms26051896. PMID: 40076522. https://www.mdpi.com/1422-0067/26/5/1896 (Full text)

 

Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: a systematic review

Abstract:

Purpose: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID-19 Condition (PCC) are debilitating, chronic multi-systemic illnesses that require multidisciplinary care. However, people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) are often precluded from accessing necessary disability and social support services. These unmet care needs exacerbate the existing illness burdens experienced by pwME/CFS and pwPCC. To deliver appropriate care and optimise health outcomes for pwME/CFS and pwPCC, the development of evidence-based healthcare policies that recognise the disabling impacts of these illnesses must be prioritised. This systematic review summarises the health-related quality of life (HRQoL) of pwME/CFS and pwPCC when compared with healthy controls (HCs) to elucidate the impacts of these illnesses and guide healthcare policy reform.

Methods: CINAHL, Embase, MEDLINE, PubMed, PsycINFO and the Web of Science Core Collection were systematically searched from 1st January 2003 to 23rd July 2024. Eligible publications included observational studies capturing quantitative HRQoL data among pwME/CFS or pwPCC when compared with HCs. The use of validated patient-reported outcome measures (PROMs) was mandatory. Eligible studies were also required to employ the most stringent diagnostic criteria currently available, including the Canadian Consensus Criteria or International Consensus Criteria for ME/CFS and the World Health Organization case definition for PCC (PROSPERO ID: CRD42024501309).

Results: This review captured 16 studies, including eight studies among pwME/CFS, seven studies among pwPCC and one study among both illness cohorts. Most participants were female and middle-aged. All pwPCC had experienced prolonged COVID-19 symptoms for at least three months. When compared with HCs, all HRQoL domains were significantly impaired among pwME/CFS and pwPCC. Both illnesses had a salient impact on physical health, including pain and ability to perform daily and work activities. While direct comparisons between pwME/CFS and pwPCC were limited by inconsistencies in the PROMs employed, comparable impact trends across HRQoL domain scores were observed.

Conclusion: ME/CFS and PCC have similar, profound impacts on HRQoL that warrant access to multidisciplinary disability and social support services. Future research must harmonise HRQoL data collection and prioritise longitudinal investigations among pwME/CFS and pwPCC to characterise PCC subgroups (including those fulfilling ME/CFS criteria) and predictors of prognosis.

Source: Weigel B, Inderyas M, Eaton-Fitch N, Thapaliya K, Marshall-Gradisnik S. Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: a systematic review. J Transl Med. 2025 Mar 13;23(1):318. doi: 10.1186/s12967-025-06131-z. PMID: 40075382. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06131-z (Full text)