Science for ME Fact Sheets

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Science For ME

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The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in consultation with the forum membership, with the aim of providing information that is both helpful and well based in evidence.

As each fact sheet is completed it will be added to this thread, both in a post and in a printable formatted pdf version. The fact sheets may be copied and used in their complete PDF form, and may be quoted from with acknowledgement of the source.

Each post will include a link to a members only thread to enable members to share uses of the fact sheets and to provide information to enable us to keep the fact sheets up-to-date.

If you can help us translate fact sheets into other languages, please get in touch with a moderator.



List of fact sheets available so far:

Fact sheet 1: An Introduction to ME/CFS - published March 2025

Fact sheet 2: Post-exertional malaise - published May 2025
 
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Fact Sheet 1: Introduction to ME/CFS
Published March 2025
Link to pdf: Introduction to ME/CFS - S4ME-Factsheet.pdf
Link to pdf of French translation: Introduction_à_l_EMSCF-S4ME-Feuille_information

Discussion thread: Fact sheet #1- Introduction to ME/CFS March 2025 Discussion

Introduction to ME/CFS


Key points
  • ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that has a substantial, often severe impact on people's lives and is usually long-term.

  • It affects about 1 in 250 people, including children.

  • Symptoms include feeling ill and exhausted, difficulty staying standing or sitting up, pain, and problems thinking or concentrating.

  • Physical or mental activity can be followed hours or days later by a long- lasting worsening of the illness. This is known as post-exertional malaise.

  • ME/CFS makes it difficult or impossible to keep a job, attend school, or have a social life. Some people with the illness are housebound or bedbound.

  • There is no known cause or effective treatment. Some people with ME/CFS improve over time, but others worsen. Full recovery is uncommon except in teens and children and in the early stages of the illness.

Symptoms

The key feature of ME/CFS is that the illness gets worse after physical or mental activity. People with ME/CFS have limited energy and doing too much makes their symptoms more severe. The worsening can begin hours or days later and take a long time to recover from. Rest or sleep gives little relief. This is called post- exertional malaise.

Fatigue in ME/CFS differs from ordinary tiredness or sleepiness. It is an overwhelming exhaustion that prevents people from leading normal lives. Other common symptoms include a flu-like feeling, sleep issues, gut problems, pain, and difficulties with thinking, memory, or concentration.

Many people with ME/CFS can't tolerate normal levels of sound, light, smell or touch, which can make them sicker. Most people with ME/CFS also feel increasingly unwell the longer they sit upright or stand. This is known as orthostatic intolerance. Many have to lie flat or have their feet raised for most of the day.

People with ME/CFS may not look ill, but they are often severely impaired. The illness makes it hard or impossible to keep a job, stay in education, take part in social activities or do household tasks. Some are partly or completely housebound.

The most severely ill people with ME/CFS are bedridden and need help with self- care such as bathing, toileting or dressing. Many need to be in a dark, silent room because they can’t tolerate any light or sound. Some also have problems with eating, and in rare cases need tube-feeding.


Who gets ME/CFS

About 1 in 250 people have ME/CFS at any one time. It affects children and adults, including older people, from all social and ethnic backgrounds.

Around three quarters of people diagnosed with ME/CFS are female. The illness is less common before puberty. Some families have more than one member with ME/CFS, but researchers have not yet found genes linked with the illness.

ME/CFS often follows an infection such as glandular fever (also known as ‘mono’) or COVID-19.


Diagnosis

The cause and biology of ME/CFS are not yet understood. There is no lab test that can confirm whether someone has it. Doctors diagnose it by looking at the pattern of symptoms, which must be severe enough to interfere with everyday life and have persisted for several months. They do a medical exam and lab tests to rule out other diseases that may cause symptoms similar to those of ME/CFS.


Treatment

There is currently no known cure or known effective treatment for ME/CFS. Instead, individual symptoms are treated, such as sleep problems or pain. Many people with ME/CFS find it useful to pace their activities and stay within their energy limits to avoid post-exertional malaise.

A rehabilitation approach to ME/CFS encourages people to gradually increase their activity over time, to try to help them return to normal levels of activity. One such treatment, 'graded exercise therapy', has been widely studied and not shown to help. In large surveys, many people have reported becoming much worse after it. There is no evidence that other versions, such as 'graded activity' or 'pacing up', are effective or safe. Some guidelines recommend against this approach.

Cognitive behavioural therapy, which aims to change people's behaviour and thinking patterns, is sometimes used for ME/CFS but studies have not shown this approach to be useful in improving the illness.


Likely course

ME/CFS can start suddenly or gradually. Symptoms often change in type and severity over time.

In the long term, some people improve, some stay the same, and some worsen. Full recovery is uncommon except in teens and children, and in early stages of the illness. For most others, ME/CFS is a long-term illness.


References

Symptoms
Bretherick AD, McGrath SJ, Devereux-Cooke A, Leary S, Northwood E, Redshaw A, Stacey P, Tripp C, Wilson J, Chowdhury S, Lewis I. Typing myalgic encephalomyelitis by infection at onset: A DecodeME study. NIHR open research. 2023;3.

Maeda KI, Islam MF, Conroy KE, Jason L. Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis. Psychology, Health & Medicine. 2023 Nov 26;28(10):3052-63.


Who gets ME/CFS
Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Archives of internal medicine. 1999 Oct 11;159(18):2129-37.

Nacul LC, Lacerda EM, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite JC, Poland F, Howe A, Drachler ML. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC medicine. 2011 Dec;9:1-2.

Samms GL, Ponting CP. Unequal access to diagnosis of myalgic encephalomyelitis in England. medRxiv. 2024 Feb 1:2024-01.

Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. Bmj. 2006 Sep 14;333(7568):575.

Katz BZ, Shiraishi Y, Mears CJ, Binns HJ, Taylor R. Chronic fatigue syndrome after infectious mononucleosis in adolescents. Pediatrics. 2009 Jul 1;124(1):189-93.


Diagnosis
Clayton EW. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness. Jama. 2015 Mar 17;313(11):1101-2.


Treatment
National Institute for Health and Care Excellence (NICE). Guideline NG206. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, 29 October 2021

Wilshire CE, Kindlon T, Courtney R, Matthees A, Tuller D, Geraghty K, Levin B. Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC psychology. 2018 Dec;6:1-2.


Likely Course
Ghali A, Lacout C, Fortrat JO, Depres K, Ghali M, Lavigne C. Factors influencing the
prognosis of patients with myalgic encephalomyelitis/chronic fatigue syndrome.
Diagnostics. 2022 Oct 19;12(10):2540.

Rowe KS. Long term follow up of young people with chronic fatigue syndrome
attending a pediatric outpatient service
. Frontiers in pediatrics. 2019 Feb 21;7:21.

Bell DS, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents
with chronic fatigue syndrome.
Pediatrics. 2001 May 1;107(5):994-8.


Last updated: 21/02/2025.
 
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Fact Sheet 2: Post-exertional malaise (PEM)

Published May 2025
Link to pdf: PEM_Factsheet.pdf
Discussion thread: Fact sheet #2 Post-exertional malaise (PEM), May 2025 discussion

Post-exertional malaise (PEM)

Key points

  • People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.
  • PEM is a hallmark of ME/CFS and is important for diagnosis
  • Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.
  • PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.
  • There is no effective treatment for PEM.
  • PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.
Characteristics of PEM

People with ME/CFS experience episodes when they are much more ill and cannot do as much as usual following amounts of physical or mental exertion or sensory stimuli that they could easily tolerate before the illness. This is called post-exertional malaise, or PEM. PEM is the hallmark of ME/CFS and important for diagnosis.

The main features of an episode of PEM are:
  • A person feels more ill. Their usual symptoms get much worse, and new symptoms may appear.
  • They are much less able to function. They need to rest more, or even to lie still in silence and darkness, until it passes.
  • The onset of PEM is typically delayed for hours or up to several days after it is triggered.
  • The length and severity of an episode of PEM are out of proportion to the amount of exertion or stimulus that triggered it. An episode can last hours, but more often lasts days, weeks or longer.
Symptoms of PEM

The word 'malaise' is a medical term meaning 'feeling ill'. People with ME/CFS already feel ill, so with PEM, 'malaise' means they feel more ill than usual. Existing symptoms such as exhaustion, problems with thinking, difficulty being upright, and pain are likely to be worse. Many people also get extra symptoms that they only have in PEM, such as headache, sore throat, nausea or flu-like symptoms.

One person's pattern of PEM symptoms may not be exactly the same as another's and may change over time and with different triggers. The type of trigger is often unrelated to the PEM symptoms that follow. For example, a person's PEM triggered by concentrating on reading might include muscle pain and unsteady walking.


Exertion and other PEM triggers

People may think of exertion as strenuous things like running, lifting weights or doing an exam, but the level of exertion that can trigger PEM in someone with ME/CFS is very low. Physical exertion as small as getting dressed or even sitting up, and mental exertion such as concentrating and reading for a short time can trigger PEM.

The word 'exertion' in the term post-exertional malaise is usually taken to mean physical or mental activity or effort. However, many people with ME/CFS also experience PEM episodes triggered by stimuli such as light, sound, smells, touch, temperature changes and vibration. Some people report that strong positive or negative emotions can also trigger PEM.

Just one activity or stimulus can trigger PEM, but the combined effect of all exertion and stimuli over a period of hours or days is more likely to do so. Doing more than one thing at the same time, such as walking and talking, or eating with the light on, may combine to trigger PEM. Someone may not realise they have already triggered PEM, and may keep going with activity during the delay before onset of PEM, making it worse.

The amount of activity someone can do without triggering PEM is sometimes called their PEM 'limit', 'threshold', 'baseline', 'activity capacity', or 'energy envelope'. These terms may not be helpful as they wrongly imply a fixed and known limit.

A person's limit may vary from day to day, and they can only judge it based on their experience, recent activity and symptoms. How exertion is spread across the day and whether it is possible for them to have rests before, during and after an activity influences whether they have PEM.

There is no good-quality evidence that the amount of exertion or sensory stimulus that triggers PEM can be increased, or health improved, by gradually increasing exertion or exposure to other triggers. Many people report interventions such as graded exercise therapy make their ME/CFS much worse.


Effects of exertion that are not PEM

People with ME/CFS get quickly exhausted by exertion, both physically and mentally; this may make it difficult or impossible to continue an activity and is known as fatiguability. Other symptoms such as pain and difficulty being upright may also worsen during and straight after activity. If these immediate effects are eased by rest, and only last for minutes or an hour or so, they are not usually called PEM. It is not known whether these short-term effects of exertion are part of the same process as PEM.

People with some heart or lung conditions who exercise may have to stop because of breathlessness or chest pain which eases with rest. This is an example of exercise intolerance. This is not the same as PEM.

Anyone who does more physical activity than they are used to, especially people who are deconditioned (unfit), may have delayed onset muscle soreness (DOMS) and feel fatigued for a day or two afterwards. DOMS and post-exertional fatigue (PEF) are not the same as PEM. ME/CFS and PEM are not caused by deconditioning.

Some descriptions of PEM wrongly describe it simply as 'symptoms or fatigue after exertion'. People with ME/CFS are likely to experience immediate short term symptom increases, exercise intolerance, DOMS and PEF, but they are not the same as PEM. None of these other effects of exertion have the severity of symptoms, loss of function, delayed onset and long duration of an episode of PEM. Identifying the difference between PEM and other effects of exertion is important for diagnosis and management of the illness.


Living with PEM


Episodes of PEM make the already disabling illness harder to live with. PEM can vary from unpleasant to unbearable. Some people refer to a PEM episode as a crash. Some report episodes of PEM lasting for hours, but they are more likely to last for days or weeks, sometimes longer. There is no treatment for PEM. Someone with PEM has to cut back their activity a lot more than usual or rest completely until the episode of PEM passes.

It can be hard or impossible for someone with ME/CFS to avoid PEM because the level of exertion that triggers it is often lower than the amount of exertion they need to do to live, given the support they have. The amount someone can do and level of stimulus they can tolerate may be so low that PEM is unavoidable just from basic activities such as talking or washing. Factors outside the person's control can trigger PEM, such as work and family demands, infections and sensory stimulation such as a hot day or a noisy neighbour.

These difficulties can lead to frequent episodes of PEM, sometimes called 'push-crash cycles'. Some people report that their ME/CFS became much more severe following repeated episodes of PEM.

Not knowing when an episode may strike and how long it will last makes it difficult or impossible to plan activities in advance, even essential things like medical appointments. Many people with ME/CFS accept some PEM in order to achieve something necessary or important, something that makes life either worth living or possible, for example a financial assistance application or a family event.

Many people with ME/CFS need support with household activities and some need help with personal care. Carers can help by learning about PEM and the person's particular PEM triggers and adapting the way they help. Not wearing perfume, not talking to the person while washing them, and providing practical support and a low-stimulus home so they can rest for as long as they need to during PEM are examples of how carers can adapt.


Examples of PEM

These are examples of how PEM can look for people with ME/CFS of different levels of severity:
  • A person can manage a few hours a day working from home at their own pace and at the times when they feel most able to function. After a few hours concentrating on work, despite rest breaks they are exhausted and in worse pain which eases with further rest. This brief worsening is not PEM. But when they have a shower or prepare a meal on a work day, the added effect of the extra exertion triggers PEM with a bad headache and nausea, making them unable to work for several days.
  • Someone can still work part-time, but struggles with concentration, pain and exhaustion. After a few days at work they often spend several days in bed feeling like they have the flu with a bad sore throat and stomach pain. After months of repeated PEM their ME/CFS becomes more severe and they are unable to return to work.
  • A person can no longer work and is too ill to regularly leave the house. They need help with household tasks. After visiting a friend for lunch they are bed-bound for a week with increased pain and nausea, can't concentrate on reading, and feel increasingly ill when they try to stand up. It is another week before they feel well enough to go out again for a brief visit.
  • Someone is so severely ill that they are bedridden and completely unable to do any normal activities. They often experience long episodes of PEM that is made even worse with every tiny stimulus or exertion. They need full time carers that help with washing, feeding and toileting. They need to lie still in complete darkness and silence.
Research on PEM

The biological causes of ME/CFS and PEM are not known. Scientists have investigated the effect of exertion on people with ME/CFS by taking biological measurements during and after exertion. Some differences from healthy people have been found in small studies. These need to be repeated in larger studies, and new approaches taken to find out more.

We based the information in this factsheet on definitions of PEM in UK and US government guidelines, research that uses exercise challenges to trigger PEM, research on people's experiences of PEM, survey-based research on the harmful effects of exercise therapy, and a wide range of reports of experiences of PEM by people with ME/CFS of all severity levels.


References


Characteristics of PEM

NICE. Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance. 2021. https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#terms-used-in-this-guideline

CDC. IOM 2015 Diagnostic Criteria [Internet]. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2024. https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html

Symptoms of PEM

Chu L, Valencia IJ, Garvert DW, Montoya JG. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey. PLoS ONE. 2018 Jun 1;13(6):e0197811. https://doi.org/10.1371/journal.pone.0197811

Exertion and PEM

Moore GE, Keller BA, Stevens J, Mao X, Stevens SR, Chia JK, et al. Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Medicina. 2023 Mar 15;59(3):571. https://doi.org/10.3390/medicina59030571

Kindlon T. Do graded activity therapies cause harm in chronic fatigue syndrome? Journal of Health Psychology. 2017 Mar 20;22(9):1146–54. https://doi.org/10.1177/1359105317697323
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