Tag: quality of life

A Short-Term Pacing Intervention in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study in Portugal

Abstract:

Background and Objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) remains a disease without a curative treatment. Hence, patient healthcare is mostly based on symptom management and the application of coping strategies, such as pacing. In this strategy, patients learn how to plan their daily physical and cognitive activities according to their perceived energy reservoir (or envelop). However, there is currently no evidence for the feasibility of pacing in Portugal, where ME/CFS is not well recognized.

Materials and Methods: We implemented a 8-week pacing program in Portuguese patients with an official diagnosis of ME/CFS. We focused on recruitment feasibility, protocol adherence, and patient acceptability, with secondary exploratory analysis of pre- and post-intervention variations in the Chalder’s fatigue questionnaire and SF36 physical functioning scores.

Results: We were able to recruit thirteen patients for the study. The patients attended, on average, seven out of the eight sessions expected per participant, with the majority adhering to the research protocol (n=7;53.8%). In a post-intervention survey, the respondents (n=10) considered that the intervention addressed the specific needs of people living with ME/CFS. Concerning the outcome trends, the average fatigue score decreased from 27.5 at baseline to 17.7 after the intervention. The mean physical functioning score increased from 24.6 to 31.7.

Conclusions: This exploratory study supported the feasibility of benchmark studies in Portugal with increased sample size, longer interventions, and including a control group (e.g., specialized medical care), with which eventual placebo effects can be better accounted for.

Source: Ribeiro V, Azevedo P, Westermeier F, Sepúlveda N. A Short-Term Pacing Intervention in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study in Portugal. Medicina (Kaunas). 2026 Feb 6;62(2):331. doi: 10.3390/medicina62020331. PMID: 41752730. https://www.mdpi.com/1648-9144/62/2/331 (Full text)

Sustained illness burden over time among Australians with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling chronic illness. Many people with ME/CFS (pwME/CFS) are unable to continue employment and require support to complete activities of daily living. Despite this, ME/CFS remains unrecognised as a disability in Australia. The present study aimed to highlight the profound burdens experienced by pwME/CFS over time to provide evidence of permanency and necessitate reforms to Australian healthcare policies.

Methods: Data were collected for this longitudinal investigation between 1st October 2021 and 3rd October 2024. All participants were Australian residents aged between 18 and 65 years fulfilling the Canadian or International Consensus Criteria. Sociodemographic information, medical history, illness presentation and patient-reported outcomes were collected using three self-administered questionnaires distributed at approximately six-month intervals. Illness presentation and patient-reported outcomes were investigated over 12 months with Cochran’s Q, Friedman and one-way repeated measures ANOVA tests using Statistical Package for the Social Sciences version 29.0. Quality of life data were compared with Australian population norms using one-sample Wilcoxon signed-rank tests.

Results: Thirty-two pwME/CFS (n = 22/32, 68.8% female) participated at all three time points. At baseline, the mean age was 44.03 years and median illness duration was 12.50 years. Participants reported a median of 30 symptoms at each time point – the most common of which were also the most severe in presentation. Importantly, there were no significant changes in any symptom or patient-reported outcome over the 12-month study period. Overall health status, physical health and the ability to participate in daily and work life activities were the most substantially impacted. Quality of life was significantly reduced among pwME/CFS when compared with population norms at all time points.

Conclusions: PwME/CFS face substantial and sustained illness burdens. These consistent, profound impairments emphasise the need for improved access to disability and social support services for pwME/CFS in Australia through policy reform.

Source: Weigel B, Eaton-Fitch N, Thapaliya K, Marshall-Gradisnik S. Sustained illness burden over time among Australians with myalgic encephalomyelitis/chronic fatigue syndrome. PLoS One. 2025 Dec 29;20(12):e0338433. doi: 10.1371/journal.pone.0338433. PMID: 41460857; PMCID: PMC12747376. https://pmc.ncbi.nlm.nih.gov/articles/PMC12747376/ (Full text)

Autonomic symptom burden, comorbidities and quality of life in women with Hypermobility Spectrum Disorders and hypermobile Ehlers-Danlos syndrome

Abstract:

Background: Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos syndrome (h-EDS) are multisystemic connective tissue disorders involving joint hypermobility and numerous other manifestations. Autonomic dysfunction, chronic pain, and chronic fatigue are known comorbidities of HSD and h-EDS that can affect patient quality of life (QoL), but there are limited data on the severity of autonomic symptoms, prevalence of comorbid conditions and QoL in patients with HSD/h-EDS.

Methods: We utilized the Composite Autonomic Symptom Scale (COMPASS-31) to assess autonomic symptom severity, Short-Form 36 (SF-36) to assess QoL, and the Beck Depression Inventory Second Edition (BDI-II) in a cohort of women with physician-diagnosed HSD or h-EDS, who completed these questionnaires anonymously.

Results: 84 women (mean age of 37.1 ± 8.4 years) completed the study. 58.3 % reported having physician-diagnosed postural orthostatic tachycardia syndrome (POTS), 32.1 % had mast cell activation syndrome (MCAS), 54.8 % had migraine, 26.2 % had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 98.8 % reported experiencing chronic pain. Importantly, 25 % of patients reported having all three diagnoses: HSD/h-EDS, POTS and MCAS. Mean COMPASS-31 score was 54.45 (range 18.79-80.93), indicating severe autonomic dysfunction, which was significantly higher than in patients with multiple sclerosis, diabetic neuropathy, scleroderma, and psoriatic arthritis as shown in prior studies. Mean SF-36 score was 32.38 (SD = 22.91) indicating poor QoL, which was worse than in patients with POTS, multiple sclerosis, rheumatoid arthritis, and lupus as determined by prior studies.

Conclusions: This study demonstrates that women with HSD/h-EDS experience severe autonomic dysfunction, chronic pain, chronic comorbid conditions and reduced QoL. More than half of participants in this cohort had POTS and migraine, with one in four having a clinical triad of HSD/h-EDS, POTS and MCAS.

Source: Collins Hutchinson ML, Liang E, Fuster E, Blitshteyn S. Autonomic symptom burden, comorbidities and quality of life in women with Hypermobility Spectrum Disorders and hypermobile Ehlers-Danlos syndrome. Auton Neurosci. 2025 Oct 14;262:103356. doi: 10.1016/j.autneu.2025.103356. Epub ahead of print. PMID: 41118678. https://pubmed.ncbi.nlm.nih.gov/41118678/

Telehealth as a care solution for homebound people: systematic review and meta-analysis of healthcare utilization, quality of life, and well-being outcomes

Abstract:

Homebound individuals residing in community settings with severe health conditions and disabilities could arguably benefit from telehealth interventions. However, the effectiveness of telehealth compared to in-person care remains underexplored, considering the diversity of these groups. This systematic review and meta-analysis aimed to evaluate the effectiveness of telehealth in reducing healthcare utilization and improving health-related quality of life (HRQOL) and well-being in homebound populations.

Adhering and expanding on a published protocol, we conducted comprehensive search across multiple databases: MEDLINE, Embase, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials (CENTRAL), Scopus, LILACS, and the Web of Science, with no restrictions on language or publication date, and experimental and quasiexperimental studies considered. Eleven independent reviewers were responsible for study selection, and three for data extraction. The methodological quality of the included studies was assessed using JBI checklists. A meta-analysis was then performed using Stata software, which reported standardized mean differences (SMDs) as the effect measure, with the quality of evidence evaluated using the GRADE approach. From an initial screening of 3289 articles, ten studies met our inclusion criteria, with eight suitable for meta-analysis. These studies encompassed data from 2245 participants.

Our findings revealed that telehealth interventions significantly reduced healthcare utilization (SMD: −0.49; 95% CI: −0.76 to −0.22; p < 0.01, GRADE: low certainty), significantly enhanced HRQOL (SMD: 0.18; 95% CI: 0.01 to 0.35; p = 0.04, GRADE: moderate certainty), and significantly improved well-being (SMD: −0.31; 95% CI: −0.47 to −0.15; p < 0.01, GRADE: moderate certainty) compared to in-person care. Thus, telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization and enhancing both HRQOL and well-being for homebound people.

These findings underscore the potential of telehealth to mitigate healthcare disparities and emphasize the need for accessible, equitable telehealth services codeveloped with end users and relevant stakeholders to save resources and maximize health outcomes for vulnerable populations in community settings.

Source: Pinero de Plaza, Maria Alejandra, Gulyani, Aarti, Bulto, Lemma N., Allande-Cussó, Regina, Pearson, Vincent, Lange, Belinda, Marin, Tania, Gebremichael, Lemlem, Brown, Shannon, Dafny, Hila, Sajeev, Shelda, Bulamu, Norma, Beleigoli, Alline, Nesbitt, Katie, McMillan, Penelope, Clark, Robyn, Tieu, Matthew, Kitson, Alison, Champion, Stephanie, Hines, Sonia, Hendriks, Jeroen M., Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, and Well-Being Outcomes, Health & Social Care in the Community, 2025, 7224151, 32 pages, 2025. https://doi.org/10.1155/hsc/7224151 https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151 (Full text)

Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a worldwide challenge. There are an estimated 17-24 million patients worldwide, with an estimated 60 percent or more who have not been diagnosed. Without a known cure, no specific curative medication, disability lasting years to being life-long, and disagreement among healthcare providers as to how to most appropriately treat these patients, ME/CFS patients are in need of assistance. Appropriate healthcare provider education would increase the percentage of patients diagnosed and treated; however, in-school healthcare provider education is limited.

To address the latter issue, the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association (NJME/CFSA) has developed an independent, incentive-driven, learning program for students of the health professions. NJME/CFSA offers a yearly scholarship program in which applicants write a scholarly paper on an ME/CFS-related topic. The efficacy of the program is demonstrated by the 2024-2025 first place scholarship winner’s essay, which addresses the biological basis of ME/CFS and how the healthcare provider can improve the quality of life of ME/CFS patients.

For the reader, the essay provides an update on what is known regarding the biological underpinnings of ME/CFS, as well as a medical student’s perspective as to how the clinician can provide care and support for ME/CFS patients. The original essay has been slightly modified to demonstrate that ME/CFS is a worldwide problem and for publication.

Source: Agarwal P, Friedman KJ. Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients. Healthcare (Basel). 2025 Aug 5;13(15):1917. doi: 10.3390/healthcare13151917. PMID: 40805949. https://www.mdpi.com/2227-9032/13/15/1917 (Full text)

The Effect on Quality of Life of Therapeutic Plasmapheresis and Intravenous Immunoglobulins on a Population of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with Elevated β-Adrenergic and M3-Muscarinic Receptor Antibodies—A Pilot Study

Abstract:

Background/Objectives: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition with not fully understood causes, though evidence points to immune system involvement and possible autoimmunity. ME/CFS could be triggered by various infectious pathogens, like SARS-CoV-2; furthermore, a subset of the post-COVID-19 condition (PCC) patients fulfill the diagnostic criteria of ME/CFS. According to the Canadian Consensus Criteria (CCC), the presence of specific symptoms such as fatigue, post-exertional malaise, sleep dysfunction, pain, neurological/cognitive manifestations, and symptoms from at least two of the following categories lead to the diagnosis of ME/CFS: autonomic, neuroendocrine, and immune manifestation. In this study, the patient selection was based on the identification of ME/CFS patients with elevated autoantibodies, regardless of the triggering factor of their condition.
Methods: The aim of this study was to identify ME/CFS patients among long COVID patients with elevated autoantibodies. In seven cases, plasmapheresis (PE) and intravenous immunoglobulins (IVIGs) with repetitive autoantibody measurements were applied: four PE sessions on days 1, 5, 30, and 60, and a low-dose IVIG therapy after each treatment. Antibodies were measured before the first PE and two weeks after the last PE session. To monitor clinical outcomes, the following somatic and psychometric follow-up assessments were conducted before the first PE, 2 weeks after the second, and 2 weeks after the last PE: the Schellong test, ISI (insomnia), FSS (fatigue), HADS (depression and anxiety), and EQ-5D-5L (quality of life) questionnaires.
Results: There was a negative association between both the β2-adrenergic and M3-muscarinic receptor autoantibody concentration and the quality of life measurements assessed with the EQ-5D-5L questionnaire. Per 1 U/mL increase in the concentration levels of β2-adrenergic receptor antibodies or M3-muscarinic acetylcholine receptor antibodies, the EQ-5D-5L index score [−0.59 to 1] decreased by 0.01 (0.63%) or 0.02 (1.26%), respectively. There were no significant associations between the ISI, HADS, and FSS questionnaires and the β1-adrenergic and M4-muscarinic receptor antibodies titers.
Conclusions: After a thorough selection of patients with present autoantibodies, this pilot study found negative associations concerning autoantibody concentration and somatic, as well as psychological wellbeing. To validate these promising feasibility study results—indicating the potential therapeutic potential of antibody-lowering methods—further investigation with larger sample sizes is needed.
Source: Oesch-Régeni B, Germann N, Hafer G, Schmid D, Arn N. The Effect on Quality of Life of Therapeutic Plasmapheresis and Intravenous Immunoglobulins on a Population of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with Elevated β-Adrenergic and M3-Muscarinic Receptor Antibodies—A Pilot Study. Journal of Clinical Medicine. 2025; 14(11):3802. https://doi.org/10.3390/jcm14113802 https://www.mdpi.com/2077-0383/14/11/3802 (Full text)

Health-related quality of life in people with ME and Long Covid: A conversation with Breanna Weigel, Griffith University, Australia

By Dylan Murphy

In March 2024 the UN Disabilities Committee issued a damning report which stated that disabled people in the UK faced systemic violations of their human rights ranging from cuts to benefits to the lack of housing for disabled people. Fast forward to late February 2025 and the UN Economic and Cultural Committee issued a report on the UK which criticized the Labour government for its failures to reduce poverty and social inequality. Since then our government in its infinite wisdom has decided to slash £7 billion from disability benefits and is removing free bus passes from hundreds of thousands of disabled people on PIP.

On the ME front our government has engaged in endless gas lighting postponing the Department of Health care plan for ME several times. It claims that the care plan for ME will be published sometime in June just when it is due to announce major cuts to public spending which makes it very unlikely that it will put any resources into funding this plan.

In 2017 I put in a freedom of information request to the DWP which revealed that a third of pwME applying for PIP were having their applications turned down. The DWP is of course completely ignorant of the heavy disease burden of ME on those suffering with this wretched illness. It chooses to ignore the wealth of scientific evidence revealing the low quality of life outcomes for pwME.

In light of the above developments I came across a recent research paper, Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: A systematic review, by a group of scientists from the  National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University, Australia.

One of the co-authors of the above paper, Breanna Weigel, took time out from her busy schedule to talk to me about this important piece of research which may be of value to those pwME navigating the treacherous waters which are our current benefits system. It was such a pleasure to talk to a passionate young scientist who is so committed to the field of ME/Long Covid research. Breanna told me, “ It is a privilege to share these findings with the ME and Long COVID community, who have had an immeasurable impact on my growth as a researcher and my passion for making a difference for people who live with these chronic illness.’’

Breanna Weigel has five years’ experience working in the field of ME/CFS and Long COVID research at the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Griffith University, Gold Coast, Australia. This month, Breanna will be submitting her PhD thesis, titled “Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID in Australia: An examination of illness experiences and healthcare policy”.

DM: How did you get involved in the field of ME research?

BW: Chronic illness has been an important part of my life and an area that I have wanted to work in for a long time. My Mum has lived with a chronic illness that has affected her life every day for the last 23 years. Seeing the extensive impacts that this had on my Mum, I was motivated to pursue a career that enabled me to contribute to helping people with chronic illness. I also developed a chronic illness four years ago, which considerably disrupted my life. However, my own lived experiences have provided me with additional insight that has informed my approach to research.

My involvement in ME research commenced in 2019 during my search for a supervisor for my Honours project. As I had a strong interest in public health and epidemiology, my program advisor shared with me the public health research that was being conducted at the National Centre for Neuroimmunology and Emerging Diseases (NCNED) and put me in contact with Prof Sonya Marshall-Gradisnik. It was then that I was introduced to the world of ME research.

I have continued to work with the NCNED over the last five years and I am presently finalising my PhD thesis, which highlights the lived experiences of people with ME and people with Post COVID-19 Condition (PCC). Throughout my early research career, I have had the invaluable opportunity to work directly with people who live with these conditions. Hearing their stories and experiences of living with ME or PCC has strengthened my motivation to make a difference for people who live with chronic illnesses that affect so many aspects of life.

DM: In the paper you co-authored, “Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: A systematic review”, you make the following observation: “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.’’

This is a very timely and astute observation.

In October 2023 the Department of Health UK held a public consultation regarding its plans to improve the quality of life for people with ME, which admitted that people with ME face many difficulties accessing disability and social care services. Now we face huge cuts to disability benefits such as Personal Independence Payment (PIP), which many people with ME claim to help them with the extra costs of being disabled. Due to the fluctuating nature of the illness many people with ME have problems claiming disability benefits and accessing social care services.

Bearing this in mind can you explain the purpose of your systematic review?

BW: Unfortunately, many people with ME and people with PCC face similar barriers to receiving such necessary support in Australia. Based on results in my Honours and PhD research, approximately half of the people with ME who participated in these studies and were unable to work due to their illness were not receiving income support through the Disability Support Pension (DSP), which is our federally funded income assistance program here in Australia.

A primary barrier to accessing this necessary support for Australians who live with ME or PCC is the lack of recognition for these illnesses as real, physical disabilities in healthcare policy. The purpose of our recently published systematic review was, therefore, to elucidate that the profound impacts of ME and PCC on the health and functioning of people who live with these conditions warrant access to care and support services, such as the DSP.

The systematic review method enabled all relevant studies published worldwide to be included in the analysis. By examining all the existing relevant literature, this systematic review not only provided evidence that ME and PCC are associated with significantly lower quality of life when compared with healthy people, but also indicated that these findings are consistent across studies, countries and time.

DM: Sadly, pwME over many years have suffered from a dismissive and discriminatory attitude from many health professionals and media outlets with their illness being dismissed as psychosomatic in nature. Here in the UK, we still have some of the royal medical colleges maintaining that psychological therapies are an appropriate treatment for pwME. Many people with Long COVID are facing similar negative attitudes towards their illness. Based on the extensive research which you carried out for your systematic review, how would you characterize ME and Long COVID: Are they physical or psychological illnesses?

BW: The findings of our recent systematic review reiterate that ME and PCC are real, physical illnesses that are not psychogenic in nature. I use the term, “PCC”, here as our systematic review specifically examined publications documenting quality of life among people with persistent COVID-19-related symptoms for at least three months, which is consistent with the World Health Organization’s definition of “Post COVID-19 Condition” (PCC).

Importantly, the illness impact trends observed across the studies analyzed in our systematic review highlight that physical health and the ability to complete daily activities are consistently the most substantially impacted components of quality of life among people with ME and people with PCC. In addition, mental health was consistently the least impacted component of quality of life among these two cohorts. These findings affirm that, whilst living with an invisible and incurable chronic illness can have significant mental health repercussions, these impacts are secondary to and not causative of ME or PCC.

This conclusion is supported by the extensive literature documenting disruptions to cellular functioning among people with ME and people with PCC. This includes the world-first research from the NCNED. Laboratory-based studies from our Centre have consistently identified impaired TRPM3 calcium ion channel function among people * with ME and people with PCC, in which these impairments are absent in healthy people. * see footnote for explanation of this term.

DM: People with ME suffer from a multitude of symptoms which have a very debilitating and disabling impact on their lives. Can you explain the disabling impact of the illness on people with ME and its long-term impact on them? Do people with Long COVID suffer from the same issues?

BW: Our systematic review, for the first time, provides consistent evidence of the shared widespread impact of ME and PCC on the health and well being of people with these conditions. Overall health, as well as all individual aspects of health and functioning, are considerably poorer among pwME and pwPCC when compared with healthy people.

In conjunction with the results of two other studies that contribute to my PhD project (which were published in 2024 [1, 2]) and the NCNED’s laboratory findings [3, 4], the illness impact patterns observed in our systematic review indicate that the collection of post-COVID-19 sequelae (an after effect of a disease, condition, or injury)  includes an illness presentation that is highly reminiscent of ME.

Combined with the post-viral nature of a considerable proportion of ME cases, this suggests that, after an episode of COVID-19, some people may experience the typical illness trajectory of people with ME. Hence, people who experience ME-like illness after COVID-19 may be at risk of long-term, complex chronic illness associated with widespread and debilitating symptoms, profound limitations on their ability to participate in daily, work and social life, and high healthcare needs.

DM: During the discussion section of your paper, you observe that pwME and people with Long COVID suffer from a comparable, profound level of disability. You note that “the illness presentation of ME/CFS and PCC poses a considerable barrier to completing physical tasks associated with daily living, …’’ Can you please explain this observation with examples from your research?

BW: The ability to participate in typical daily activities was consistently one of the most impacted components of health and functioning across the studies captured in our systematic review. In the context of the patient-reported outcome measures that were used to collect data in these studies, this refers to the ability to complete work both around the home and in relation to employment or study.

Such patient-reported outcome measures used by the studies included in our systematic review (and used in our studies at the NCNED) quantify quality of life and functioning across a range of scales. These include scales that consider overall health, as well as collections of more specific scales that focus on individual aspects of health. In terms of overall health, our research indicates that most people with ME/CFS and people with PCC have a functional status between 30% and 50% of total functioning. This is significantly lower than the level of functioning of healthy people, who typically return a score of (or close to) 100%.

Overall health status scores between 30% and 50% represent a considerable impact on the ability to complete daily activities, such as only being able to complete a limited number of tasks (like housework or grocery shopping) per day with adequate rest periods. However, people experiencing severe illness can return overall health status scores of 20% or 10%. People who return these considerably low scores may be mostly bed bound and unable to shower or eat independently.

The consistent finding that people with ME and people with PCC have a profoundly impaired ability to perform typical daily activities (including being able to continue employment) in our systematic review is critical in relation to guiding care and support access. As these impairments were repeatedly observed through the collection of data by validated and standardised patient-reported outcome measures, this provides evidence that ME and PCC are real, disabling conditions and must be considered eligible for care and support services, such as income assistance.”

DM:  Your study is the first systematic review to capture and compare quality of life metrics for both pwME and people suffering from Long COVID. In your paper, you state “The present systematic review therefore serves to elucidate the pervasive impacts of ME/CFS and PCC on people who live with these conditions to inform and guide healthcare policy reform, as well as future research.” What recommendations would you suggest to public health agencies and governments to help pwME and Long COVID have a better quality of life?

BW: The co-production of healthcare policies and services with ME and PCC consumers will be an essential step in improving quality of life for people who live with these conditions. Importantly, care accessibility must be increased for these cohorts and the processes of accessing care must accommodate for the functional limitations of people who live with ME or PCC.

DM: I had the opportunity to further discuss the role of consumers’ lived illness experiences in shaping healthcare policy in my recent collaboration with the Deeble Institute for Health Policy Research, Australian Healthcare and Hospitals Association, which can be accessed via this link: https://doi.org/10.25916/b246-r560

BW: If anyone has any questions after reading the interview or would like to discuss our research in general, they are more than welcome to contact us at ncned@griffith.edu.au

References:
1. Weigel B, Eaton-Fitch N, Thapaliya K, & Marshall-Gradisnik SM. Illness presentation and quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: A pilot Australian cross-sectional study. Qual Life Res. 2024,33(9):2489–507. doi: 10.1007/s11136-024-03710-3.
2. Weigel B, Eaton-Fitch N, Thapaliya K, & Marshall-Gradisnik SM. A pilot cross-sectional investigation of symptom clusters and associations with patient-reported outcomes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition. Qual Life Res. 2024,33(12):3229–43. doi: 10.1007/s11136-024-03794-x.
3. Martini Sasso E, Muraki K, Eaton-Fitch N, Smith P, Lesslar OL, Deed G, et al. Transient receptor potential melastatin 3 dysfunction in Post COVID-19 Condition and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. Mol Med. 2022,28(1):98. doi: 10.1186/s10020-022-00528-y.
4. Martini Sasso E, Muraki K, Eaton-Fitch N, Smith P, Jeremijenko A, Griffin P, et al. Investigation into the restoration of TRPM3 ion channel activity in Post-COVID-19 Condition: A potential pharmacotherapeutic target. Front Immunol. 2024,15:1264702. doi: 10.3389/fimmu.2024.1264702.

Glossary

* What is TRPM3? Imagine TRPM3 as a tiny “gate” on the surface of cells. This gate specializes in allowing calcium ions (charged particles) to flow into the cell when triggered. Calcium acts like a messenger, telling the cell to perform specific tasks.

How Does It Work? 

Triggers: The TRPM3 gate opens in response to certain signals, such as heat (like a body temperature rise) or specific molecules (like those released when you’re injured or when blood sugar is high). – Calcium’s Role: Once the gate opens, calcium rushes in, acting like a text message that alerts the cell to take action. This could mean sending a pain signal, releasing hormones, or adjusting to temperature changes.

1. Calcium Signaling & Cellular Stress: What’s Happening?

TRPM3 allows calcium to enter cells, which is critical for communication between nerves, muscles, and the immune system. In ME/CFS, abnormal calcium flow might disrupt this communication.

Impact: Too much calcium in cells (due to overactive TRPM3) could cause “cellular stress,” damaging mitochondria (the cell’s energy factories) or overstimulating nerves. This might explain the fatigue, muscle weakness, and “brain fog” seen in ME/CFS.

2. Pain Sensitivity & Nervous System Overdrive – What’s Happening?

TRPM3 helps nerves detect pain and temperature. If it’s hypersensitive, it might send constant “false alarms” to the brain.

Impact: This could contribute to chronic pain, allodynia (pain from light touch), or temperature intolerance (feeling too hot/cold) common in ME/CFS. It might also worsen “sensory overload,” where lights, sounds, or movement feel overwhelming.

3. Immune System & Inflammation – What’s Happening?

TRPM3 is activated by inflammatory molecules. In ME/CFS, chronic inflammation or immune dysfunction (e.g., after infections like Epstein-Barr virus) might keep TRPM3 stuck in the “on” position.

Impact: This could lead to a vicious cycle: inflammation → TRPM3 overactivity → more inflammation → worsened symptoms. Studies show ME/CFS patients often have abnormal immune cells (like natural killer cells), and TRPM3 defects in these cells might impair their ability to fight infections.

4. Energy Metabolism & Crashes – What’s Happening?

TRPM3 helps regulate insulin release and cellular energy. If it malfunctions, cells might struggle to manage glucose (sugar) for energy.

Impact: This could worsen energy crashes (post-exertional malaise) and contribute to the “dead battery” feeling in ME/CFS. Poor calcium regulation in muscles might also explain why even mild activity leads to severe fatigue.

5. The Bigger Picture: A Key Piece of the Puzzle?

ME/CFS is likely caused by a mix of genetic, immune, and environmental factors. TRPM3 dysfunction could be one piece of this puzzle. For example: – Genetic mutations in TRPM3 might make some people more prone to ME/CFS.

Viral infections or toxins could “break” TRPM3, triggering symptoms.

Overactive TRPM3 in the brain might disrupt sleep/wake cycles or hormone regulation.

Hope for Treatments? Researchers are exploring drugs that target TRPM3 to: ✅ Calm overactive channels (e.g., using blockers like primidone or certain antidepressants). ✅ Reduce inflammation linked to TRPM3 activation. ✅ Improve cellular energy by restoring calcium balance. However, this is still experimental—no treatments exist yet specifically for TRPM3 in ME/CFS.

Key Takeaway: TRPM3’s role in ME/CFS highlights how tiny cellular “gates” can have big impacts on fatigue, pain, and immune function. While more research is needed

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)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS

Abstract:

Background and Objectives: We previously reported on the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the QoL of persons with ME/CFS and their family members. Here, we present the findings of the impact on the QoL of individuals with ME/CFS whose family members did not participate in the survey.

Materials and Methods: A prospective multinational online survey was disseminated via patient charities, support groups and social media. Persons with ME/CFS completed the EuroQoL questionnaire (EQ-5D-3L).

Results: Data were analysed from 876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS. In total, 742 participants identified as female, 124 male and 10 preferred not to say. The mean age of the participants was 47 years (range 18-82), and the mean time to diagnosis was 14 years. The mean overall health status on a visual analogue scale for people with ME/CFS was 36.4 (100 = best health). People with ME/CFS were most often affected by inability to perform usual activities (n = 852, 97%), followed by pain (n = 809, 92%), impaired mobility (n = 724, 83%), difficulty in self-care (n = 561, 64%) and least often affected by anxiety and depression (n = 540, 62%).

Conclusions: The QoL of people with ME/CFS is significantly affected globally. There was no significant difference in quality of life compared with previously published data on those with ME/CFS who did have a family member complete the family member quality of life questionnaire (FROM16). Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities.

Source: Muirhead NL, Vyas J, Ephgrave R, Singh R, Finlay AY. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS. Medicina (Kaunas). 2024 Jul 27;60(8):1215. doi: 10.3390/medicina60081215. PMID: 39202496. https://www.mdpi.com/1648-9144/60/8/1215 (Full text)

Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study

Abstract:

Purpose: Post COVID-19 Condition (PCC), being persistent COVID-19 symptoms, is reminiscent of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-a chronic multi-systemic illness characterised by neurocognitive, autonomic, endocrinological and immunological disturbances. This novel cross-sectional investigation aims to: (1) compare symptoms among people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) to inform developing PCC diagnostic criteria; and (2) compare health outcomes between patients and people without acute or chronic illness (controls) to highlight the illness burdens of ME/CFS and PCC.

Methods: Sociodemographic and health outcome data were collected from n = 61 pwME/CFS, n = 31 pwPCC and n = 54 controls via validated, self-administered questionnaires, including the 36-Item Short-Form Health Survey version 2 (SF-36v2) and World Health Organization Disability Assessment Schedule version 2.0 (WHODAS 2.0). PwME/CFS and pwPCC also provided self-reported severity and frequency of symptoms derived from the Canadian and International Consensus Criteria for ME/CFS and the World Health Organization case definition for PCC.

Results: Both illness cohorts similarly experienced key ME/CFS symptoms. Few differences in symptoms were observed, with memory disturbances, muscle weakness, lymphadenopathy and nausea more prevalent, light-headedness more severe, unrefreshed sleep more frequent, and heart palpitations less frequent among pwME/CFS (all p < 0.05). The ME/CFS and PCC participants’ SF-36v2 or WHODAS 2.0 scores were comparable (all p > 0.05); however, both cohorts returned significantly lower scores in all SF-36v2 and WHODAS 2.0 domains when compared with controls (all p < 0.001).

Conclusion: This Australian-first investigation demonstrates the congruent and debilitating nature of ME/CFS and PCC, thereby emphasising the need for multidisciplinary care to maximise patient health outcomes.

Source: Weigel B, Eaton-Fitch N, Thapaliya K, Marshall-Gradisnik S. Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study. Qual Life Res. 2024 Jul 3. doi: 10.1007/s11136-024-03710-3. Epub ahead of print. PMID: 38961009. https://link.springer.com/article/10.1007/s11136-024-03710-3 (Full text)