Bedridden overnight
Imagine getting a flu and then never getting out of bed again.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
A characteristic feature of ME/CFS is post-exertional malaise (PEM), in which symptoms worsen after physical or mental exertion (leading to what is known as a “crash”). In severe cases, even minimal activities such as showering, walking a few steps, or even turning over in bed can be enough to trigger a crash.
The disease is also characterized by a wide range of other symptoms that can change over time and vary from person to person. Patients may suffer from persistent fatigue, unrefreshing sleep, profound weakness, problems with thinking and concentration (brain fog), orthostatic intolerance, pain, and many other symptoms.
How many people are affected by this?
- An estimated 60,000 to 80,000 people across Austria, predominantly young people.
- 40 million people worldwide, 75% of whom are women.
- Often following infection with the Epstein-Barr virus or COVID-19.
Severity
- 25% of those affected are confined to their homes, severe cases are bedridden, requiring 24/7 care
- 60 to 70 percent are unable to work
- Stimulation (light, noise, touch) exacerbates the symptoms.
The severity and burden of illness of ME/CFS
The severity of symptoms varies greatly from patient to patient and can also fluctuate over time in individual cases. However, even those with “mild” symptoms are significantly restricted in their daily lives. They require longer periods of rest each day, are unable to engage in strenuous physical activity, and therefore have difficulty pursuing regular employment or attending school. Around 25% of patients with severe ME/CFS are confined to their homes and dependent on the help of others.
Even basic activities such as preparing meals or doing laundry become difficult. Due to sensory overload, communication with friends and family or online activities are only possible for short periods of time each day. Finally, people with very severe ME/CFS are bedridden, unable to meet even their most basic needs, and require 24-hour care. Conversation is impossible, and they often find themselves isolated in dimly lit rooms, surrounded by absolute silence, as any stimulation can trigger post-exertional malaise (PEM).
Due to the high severity, chronic nature, and considerable prevalence of the disease, the global burden of ME/CFS is high, demonstrably twice that of HIV/AIDS and more than half that of breast cancer. However, when examining the allocation of funds in relation to the burden of disease, it is clear that ME/CFS is dramatically underfunded. Compared to the NIH’s analysis of funding distribution, ME/CFS receives only about 7% of the funding that would be appropriate for its disease burden. This underscores the need for increased attention and support for ME/CFS research and care.
Pathology, treatment, and prognosis
Due to the heterogeneity of the disease and decades of under-research, the pathology of ME/CFS remains poorly understood. Although many studies point to pathophysiological abnormalities, e.g., in energy metabolism, the immune system, and the vascular system, there is no validated biomarker that can be used for diagnosis.
There is no FDA- or EMA-approved treatment and no cure for ME/CFS. Apart from symptomatic treatment (e.g., for sleep disorders or pain), the most important recommendation for patients is pacing, i.e., adhering to individual stress limits imposed by the disease through activity and energy management.
The goal is to avoid relapses due to post-exertional malaise and to create optimal conditions for stabilizing the disease. However, the long-term prognosis remains poor. Although gradual improvement is sometimes observed, the rate of complete remission is less than 5%.
Designations of ME/CFS
Over the years, the disease has been referred to by various names, each with its own historical context, geographical background, stigma, and burden. The most commonly used terms are myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). The World Health Organization classifies both ME and CFS as neurological disorders under the same ICD-10 code G93.3. In recent years, however, the combined term ME/CFS has become increasingly established in scientific literature and has been adopted by healthcare providers, professionals, and patient organizations. In line with this emerging consensus, we use the technical term ME/CFS for the condition—without prejudice to the pathology of the disease.
Symptoms and comorbidities
ME/CFS is a multisystem disease whose symptoms affect almost every part of the body. Although its severity and relative intensity can vary from person to person, the combination of symptoms is characteristic and allows diagnosis by an experienced clinician according to international guidelines. Modern criteria considered appropriate for both clinical diagnosis and the definition of research cases include the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC).
Post-exertional malaise (PEM):
A characteristic feature of ME/CFS is the worsening of symptoms after even minimal physical or cognitive exertion. This post-exertional malaise can lead to a prolonged period of increased fatigue, brain fog, and other symptoms, also known as a “crash.” PEM typically occurs 12 to 48 hours after exertion and can last for days or weeks.
It can also lead to irreversible deterioration and permanent changes in patients’ health in the long and short term. PEM can be mitigated by activity management techniques, often referred to as “pacing.” Patients are advised to minimize PEM episodes and prevent relapses by maintaining a balance between rest and activity.
The diagnosis of ME/CFS requires careful differential diagnosis to investigate alternative explanations for the symptoms, such as multiple sclerosis (MS) or severe depression, but it is not a diagnosis of exclusion. It can occur alongside other diseases, and a number of comorbidities are even considered typical of ME/CFS. They are observed in many patients, probably due to as yet unexplained links in the pathomechanisms.
Additional symptoms
Deep exhaustion:
The exhaustion associated with ME/CFS goes beyond normal tiredness. It is deep-seated, persistent, and cannot be easily alleviated by rest.
Cognitive impairment:
ME/CFS can lead to difficulty concentrating, memory lapses, and other cognitive challenges, often referred to as “brain fog.”
Sleep disorders:
People with ME/CFS often suffer from sleep disorders in which restful sleep does not bring the expected relief, so that they do not feel rested and refreshed after waking up.
Postural orthostatic tachycardia syndrome (POTS):
This condition is associated with difficulties in maintaining normal blood pressure and heart rate when moving from a lying to a standing position, leading to symptoms such as dizziness, lightheadedness, or fainting.
Mast cell activation syndrome (MCAS):
MCAS is an immunological disorder in which mast cells release chemical substances such as histamine inappropriately and excessively, leading to symptoms in the skin, gastrointestinal tract, heart, respiratory tract, and nervous system.
Pain:
Many people with ME/CFS suffer from pain, which can manifest itself in the form of severe muscle pain, joint pain, and unbearable headaches, among other things.
Small fiber neuropathy (SFN):
Small fiber neuropathy refers to the degeneration of small nerve fibers in the skin and eyes that transmit signals from the sensory and autonomic nervous systems to the brain. SFN is often painful. Typical symptoms include sensitivity to touch and impaired temperature regulation.
Hypermobile Ehlers-Danlos syndrome (hEDS):
The main feature of hEDS is joint hypermobility caused by damaged connective tissue. Characteristic symptoms include joint pain and orthostatic intolerance. Many patients also suffer from chronic fatigue. Conversely, about 20% of people with ME/CFS meet the diagnostic criteria for hEDS.
Intolerance to environmental stimuli:
Most patients suffer from hypersensitivity or even intolerance to external stimuli such as noise, light, smells, and touch, which makes even simple activities such as looking at a screen for too long impossible. Due to these hypersensitivities, patients with very severe ME/CFS are confined to dark, quiet rooms.
We strongly support those affected by ME/CFS.
Life with ME/CFS
Together, we are on the path to a better life for ME/CFS patients.
Unfortunately, this takes time and does not happen overnight. ME/CFS patients do not simply wake up one day and return to their normal lives.
But there is hope, and we are here to fight for those who can no longer do so themselves. By funding more research and raising awareness, we will achieve our goal.
Step by step.
Join our cause
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