ME/CFS is chronic, complex, multisystem disease that can produce a wide-range of disabling symptoms dramatically impacting a person's ability to initiate or complete everyday tasks and to mobilise normally.
It is primarily recognized as being neurological (affecting the central and peripheral nervous systems), but problems have also been determined that effect the way in which the immune and endocrine (hormone producing) systems function, and how energy is produced in cells.
The content on this page is provided solely for information purposes and provides an overview of the subject matter covered - it has kindly been reviewed by the ME Association. It is not a substitute for professional medical advice, diagnosis or treatment. If you think you have ME/CFS please seek further information. The information on this page is subject to change without notice.
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ME/CFS is often considered an invisible disability
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ME/CFS might be invisible– but the impact it has can clearly be seen -
It can affect anyone– any age, any ethnicity – and can occur at any time of life. -
It has been estimated that the worldwide prevalence of ME/CFS is between 17 and 24 million -
Diagnostic delay is a significant problem -
20–40 is thought to be the peak age of onset and it affects more women than men (4:1 ratio) -
Perhaps 25% are housebound or bedbound and will rely on others for the most basic of needs -
Twice as common as MS
Most people develop ME/CFS after an acute viral infection, from which they fail to recover. ME/CFS can also be triggered by bacterial infections and vaccinations. In some cases no clear trigger factor can be identified. A diagnosis is normally made when symptoms have persisted for three months or more.
Known infectious triggers for ME/CFS include:
- Coronaviruses (MERS, SARS, COVID-19).
- Enteroviruses (e.g., Coxsackie B).
- Epstein Barr Virus (Glandular Fever).
- Human Herpes Virus (Cytomegalovirus or Herpes Zoster).
- Human Parvovirus B19.
- Meningitis (viral or bacterial).
- Pneumonia (Streptococcus Pneumoniae - bacterial).
- Q Fever (Coxiella burnetiid - bacterial).
- Rhinoviruses (the ‘common cold’ viruses).
Women are more at risk from the condition than men (4:1 ratio). It is an indiscriminate disease that can occur in adults, children, and people from any socio-economic group or ethnic background. It can also occur in more than one family member.
ME/CFS can lead to greater functional impairment and poorer quality of life than other serious medical conditions, including diabetes, congestive heart failure, multiple sclerosis and even cancer. It is the biggest single cause of long-term sickness absence from school and prevents many adults from working, impacting health care, disability-related welfare payments, productivity losses and unpaid informal care.
It can range from a relatively mild form of illness that might allow a limited return to work or education to moderate, severe, and very severe, where a person will be very ill and confined to bed with a need for 24-hour care. Most people will have experienced a range of illness severities. The unpredictable nature is one of the things that make this condition so hard to live with.
ME/CFS can affect people differently and will limit their ability to initiate or complete activities that had previously been possible before the triggering event. It often follows a relapsing-remitting pattern of symptom severity and functional incapacity, although, for some, it can be progressive. Full recovery is rare, but improvements can be sustained over time and with appropriate and careful management, and for some this can lead to a stabilising of symptoms and better quality of life.
Sources:
Action for M.E https://www.actionforme.org.uk/
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society https://ammes.org/what-is-mecfs/
MEAction https://www.meaction.net/
Mayoclinic: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
NHS: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
ME Association: https://meassociation.org.uk/
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The content on this page is provided solely for information purposes and provides an overview of the subject matter covered - it has kindly been reviewed by the ME Association. It is not a substitute for professional medical advice, diagnosis or treatment. If you think you have ME/CFS, please make an appointment to see your doctor. The information on this page is subject to change without notice.
You can visit the ME Association website to access a complete range of free to download literature about ME/CFS and related topics, including how to recognize symptoms, what is involved in making a diagnosis, and how best to manage the condition. And, in the UK, please contact the ME Connect telephone helpline (0808 801 0484) should you have any further questions (please see the website for opening hours).
For further information, please visit the ME Association:
The ME Association is a national charity that helps thousands of people with ME/CFS/PVFS each year in the UK. It is estimated that around 400,000 people are struggling to live with this life-changing neurological condition.
It can affect people of all ages and from all socio-economic and ethnic backgrounds and can lead to long-term disability and a lower quality of life than multiple sclerosis or cancer.
- We provide reliable information and we campaign to raise awareness of the inequalities affecting this large patient community.
- We fund and support biomedical research with the hope that an effective treatment can be discovered.
- We offer training for healthcare professionals and we are working to effectively implement the new NICE clinical guideline.
(ME/CFS = Myalgic Encephalopathy/Encephalomyelitis/Chronic Fatigue Syndrome. PVFS = Post-Viral Fatigue Syndrome. Long Covid = Post-Acute Sequelae of SARS-CoV-2.)
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