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