As long as I can remember Fatigue has been a major issue for people with MS and it is a very underresearched and under-controlled sign of disease. This paper is a snap shot to see how badly we are dealing with it in the United Kingdom. It is online and free so you can read for yourself if interested. This study was a survey across 48 sites and there was clearly fatigue from the sites as there were responses from only eighteen responses were received from services across the United Kingdom (Greater London, South East, South West, West Midlands, East Anglia, North West, Wales and Northern Ireland). So nothing from Scotland or the North East and shows the majority of sites are so strecthed that they can’t be bothered to respond. There are massive differences in use of disease modifying treatments across the country (See for yourself in the Secondary care medicines data base of drug use) and it must therefore boil do to individuals and service.
Fatigue is complex and one could dive into it to see what the biological mechanisms are but nerve damage requires compensation and that requires additional nervous energy to do this. The brain uses about 20% of our energy supply so it is a drain to use more and on top of this we have sickness behaviours created by the inflammation and so the solution is not simple except stopping the accumulation of damage as quickly as possible, so places are probably filled with neurologists who subscribe to the softly-softly approach of MS…possibly the sites that couldn’t be bothered to do the surveys.
One could do an essay on the biology or read papers such as Braley TJ, Chervin RD. Fatigue in multiple sclerosis: mechanisms, evaluation, and treatment. Sleep. 2010;33(8):1061-7.
Pop to the MS Society
or bung the question to a chatbot and get an answer in a few seconds
Fatigue in Multiple Sclerosis (MS) is a highly prevalent, disabling symptom that is distinct from normal tiredness. Its biological basis is complex, involving direct damage to the central nervous system (CNS) and immune-mediated inflammatory processes.
Here is a breakdown of the primary biological mechanisms behind MS-related fatigue:
1. Demyelination and Axonal Damage (Primary Fatigue)
- Reduced Nerve Conduction Velocity: The core pathology of MS is the destruction of myelin (demyelination) in the brain and spinal cord. Myelin acts as insulation for nerve fibres (axons), allowing for rapid signal transmission. When myelin is damaged, nerve signals slow down or become blocked.
- Energy Deficit (Mitochondrial Dysfunction): Demyelinated axons require significantly more energy to function, yet in MS, the mitochondria (“battery packs”) of these nerve cells are often damaged or inefficient, leading to an energy crisis in the brain.
- Activity-Dependent Conduction Block: Because the damaged nerves cannot sustain high-frequency impulses, conduction fails under stress (e.g., trying to do a physical task), leading to a sudden loss of muscle power or mental alertness.
- Neurodegeneration and Brain Atrophy: PePersistent fatigue is often correlated with grey matter atrophy (shrinkage), particularly in the deep grey matter (thalamus, basal ganglia) and the frontal cortex, which are involved in cognitive and motor functions.
- 2. Neuroimmune and Inflammatory Processes
- Proinflammatory Cytokines: Chronic inflammation in MS leads to high levels of inflammatory mediators, such as TNF-α, IL-1, and interferons. These cytokines can cross the blood-brain barrier and directly influence brain centers that regulate energy and sleep, acting as a form of “sickness behavior” (similar to how you feel tired during an infection).
- Neurotransmitter Alteration: Inflammatory cytokines can disrupt the balance of monoaminergic neurotransmitters—specifically serotonin and dopamine—which are essential for motivation, reward, and arousal.
- Orexin Depletion: Chronic inflammation may reduce the activity of orexin, a neuropeptide produced in the hypothalamus that is crucial for maintaining vigilance and wakefulness.
- 3. Functional Reorganization (Brain Overcompensation)
- Maladaptive Network Recruitment: Because of damaged neural pathways, the brain of an MS patient must work harder and recruit more neurons (using a larger area of the brain) to complete the same task that a healthy brain can perform easily.
- Increased Mental Effort: This compensatory effort is exhausting and explains why even simple cognitive tasks (like reading or paying attention) can cause severe fatigue
- 4. Endocrine and Metabolic Factors
- HPA Axis Dysfunction: The hypothalamic-pituitary-adrenal (HPA) axis, which manages stress and energy, can become dysregulated due to chronic disease activity, resulting in low levels of cortisol or DHEA, which contribute to chronic fatigue.
- Thyroid Dysfunction: Thyroid disorders, which cause fatigue, are more common in people with MS due to immune system dysfunction.
- 5. Secondary Contributing Factors
- While primary fatigue is caused directly by damage, the following factors often worsen the biological state:
- Sleep Disturbances: Restless legs syndrome, spasms, and bladder problems frequently disrupt sleep.
- Heat Sensitivity (Uhthoff’s Phenomenon): Slight increases in body temperature (from weather or exercise) can temporarily block neural conduction in damaged pathways.
- Deconditioning: Reduced mobility leads to physical weakness, making tasks even more exhausting.
- In summary, MS fatigue is a multi-factorial, central nervous system issue caused by damaged electrical pathways in the brain that cannot meet high energy demands, compounded by immune system inflammation that induces “sickness behavior.”
Ask chat bots how you deal with it and you get the usual life style changes, sleep hyience diet, excercise quit smoking etc. But I can’t give advice on this
Picariello F, Milne-Ives M, Freeman J, Moss-Morris R. Understanding Routine Treatment and Resource Availability for Fatigue in Multiple Sclerosis in the United Kingdom. Behav Neurol. 2026;2026(1):e8169644
Background: Fifty-five to ninety percent of people with multiple sclerosis (MS) report disabling fatigue, but a previous survey found that only 31% of UK adults with MS experiencing fatigue report being offered any treatment. The aim of this study was to capture the service perspective of routine care for MS fatigue and resource availability.
Methods: A cross-sectional online survey was distributed to NHS services across the United Kingdom to be completed by healthcare professionals working with people with MS.Results: Eighteen services completed the survey. Services supported a median of 1100 patients. Allied healthcare professional availability varied across services but was generally low (median range 0-6 staff per type). On average, services estimated that only 28% (SD = 26.51) of patients were receiving fatigue treatments.
Conclusions: Findings highlighted the unmet need around MS fatigue management, complementing previously captured patient perspectives. Although the study included a small, self-selecting subset of services and may have been influenced by the COVID-19 pandemic, it demonstrates the necessity of accounting for resource availability to successfully implement new fatigue interventions.
disclaimer My views:-) and those of the chat bot:-(
Source: multiple-sclerosis-research.org