Draft:Primer for Journalists

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Myalgic encephalomyelitis (ME), sometimes referred to as chronic fatigue syndrome (CFS) is a serious and long-term illness. The hallmark symptom is post-exertional malaise (PEM), a marked worsening of the illness after exertion. People with ME/CFS experience debilitating fatigue, non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and orthostatic intolerance.

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Correct representation of ME/CFS[edit | edit source]

Not chronic fatigue[edit | edit source]

ME/CFS is not the same as chronic fatigue and it is important not to confuse these terms. Chronic fatigue is a symptom which can be present in numerous conditions, such as diabetes or depression. Chronic fatigue syndrome (CFS or ME/CFS) is a disorder which includes chronic fatigue as a symptom, but this is only one of several symptoms that describe the disorder.

Most people with chronic fatigue do not meet ME/CFS diagnostic criteria[1], and for many ME/CFS patients, chronic fatigue is not their most debilitating symptom. For these reasons, it is inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

Representative images[edit | edit source]

The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.[2] Functional impairment of ME/CFS can be greater than in disabling conditions such as multiple sclerosis[3], rheumatoid arthritis[4] or congestive heart failure.[5]

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.[6][7] It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided 32 professional photos for press use that adequately depict the reality of people living with ME/CFS.

Not a mental disorder[edit | edit source]

Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.[8][9] This view is in contrast with scientific evidence and expert opinion.[10] The Centers for Disease Control and Prevention (CDC), for example, states: "ME/CFS is a biological illness, not a psychologic disorder.”[11] The World Health Organization classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.[12]

Basic facts about ME/CFS[edit | edit source]

Epidemiology[edit | edit source]

ME/CFS affects approximately 0.4% of the population or 1 in 250 people.[1][13] The illness is much more common in women than in men: approximately 75% of patients are female.[1][13][14] Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.[15]

Cause and pathology[edit | edit source]

The cause and pathology of ME/CFS remain largely unknown.[16] Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.[17][18] Increased incidence has also been reported following Q-fever, Ross River Virus, giardiasis, and several other infections.[19] Contracting SARS-CoV-2, the virus responsible for the COVID pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with Long COVID meet ME/CFS diagnostic criteria.[20][21][22]

ME/CFS is suspected to have a genetic component.[23] The DecodeME project in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.[14]

Researchers have reported abnormalities in the immune system, metabolism, cardiovascular system, brain signalling, endothelial function, and other bodily functions of ME/CFS patients.[2][10] However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

Treatment[edit | edit source]

There are no Food and Drug Administration (FDA) or European Medicines Agency (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, graded exercise therapy (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The National Institute for Health and Care Excellence (NICE) therefore does not recommend exercise programs as treatments of ME/CFS and actively recommends against GET.[24]

 Counselling including cognitive behavioral therapy (CBT) may be offered to people to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.[24]

Surveys indicate that ME/CFS patients often find pacing useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

Advocacy[edit | edit source]

Psychosomatic theories and stigma[edit | edit source]

Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘yuppie flu’ and was once dismissed as hysteria. Patients have reported harm from psychosomatic theories that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been a barrier to appropriate patient care and has caused much suffering.[25]

Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.

High disease burden, low funding[edit | edit source]

Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population[26] and the annual burden of ME/CFS is estimated to be 40 billion euros annually.[citation needed]

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

12 May: World ME Day[edit | edit source]

ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based ME Action Network.

Resources[edit | edit source]

Reports and guidelines[edit | edit source]

Patient organizations[edit | edit source]

Examples of excellent reporting[edit | edit source]

Recommended reading[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 1.2 Jason, L. A.; Richman, J. A.; Rademaker, A. W.; Jordan, K. M.; Plioplys, A. V.; Taylor, R. R.; McCready, W.; Huang, C. F.; Plioplys, S. (October 11, 1999). "A community-based study of chronic fatigue syndrome". Archives of Internal Medicine. 159 (18): 2129–2137. doi:10.1001/archinte.159.18.2129. ISSN 0003-9926. PMID 10527290.
  2. ↑ 2.0 2.1 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The National Academies Collection: Reports funded by National Institutes of Health. Washington (DC): National Academies Press (US). ISBN 978-0-309-31689-7. PMID 25695122. line feed character in |last= at position 75 (help)
  3. ↑ Kingdon, Caroline C.; Bowman, Erinna W.; Curran, Hayley; Nacul, Luis; Lacerda, Eliana M. (2018-12). "Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls". PharmacoEconomics - Open. 2 (4): 381–392. doi:10.1007/s41669-018-0071-6. ISSN 2509-4254. PMC 6249197. PMID 29536371. Check date values in: |date= (help)
  4. ↑ Falk Hvidberg, Michael; Brinth, Louise Schouborg; Olesen, Anne V.; Petersen, Karin D.; Ehlers, Lars (2015). "The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)". PloS One. 10 (7): e0132421. doi:10.1371/journal.pone.0132421. ISSN 1932-6203. PMC 4492975. PMID 26147503.
  5. ↑ Komaroff, A. L.; Fagioli, L. R.; Doolittle, T. H.; Gandek, B.; Gleit, M. A.; Guerriero, R. T.; Kornish, R. J.; Ware, N. C.; Ware, J. E.; Bates, D. W. (1996-09). "Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups". The American Journal of Medicine. 101 (3): 281–290. doi:10.1016/S0002-9343(96)00174-X. ISSN 0002-9343. PMID 8873490. Check date values in: |date= (help)
  6. ↑ Collin, Simon M.; Crawley, Esther; May, Margaret T.; Sterne, Jonathan AC; Hollingworth, William; UK CFS/ME National Outcomes Database (September 15, 2011). "The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database". BMC Health Services Research. 11 (1): 217. doi:10.1186/1472-6963-11-217. ISSN 1472-6963. PMC 3184626. PMID 21923897.
  7. ↑ Reynolds, Kenneth J.; Vernon, Suzanne D.; Bouchery, Ellen; Reeves, William C. (June 21, 2004). "The economic impact of chronic fatigue syndrome". Cost Effectiveness and Resource Allocation. 2 (1): 4. doi:10.1186/1478-7547-2-4. ISSN 1478-7547. PMC 449736. PMID 15210053.
  8. ↑ Thoma, Manuel; Froehlich, Laura; Hattesohl, Daniel B. R.; Quante, Sonja; Jason, Leonard A.; Scheibenbogen, Carmen (2024-01). "Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients". Medicina. 60 (1): 83. doi:10.3390/medicina60010083. ISSN 1648-9144. PMC 10819994. PMID 38256344. Check date values in: |date= (help)
  9. ↑ O'Leary, Diane (2019-07). "Ethical classification of ME/CFS in the United Kingdom". Bioethics. 33 (6): 716–722. doi:10.1111/bioe.12559. ISSN 1467-8519. PMID 30734339. Check date values in: |date= (help)
  10. ↑ 10.0 10.1 Komaroff, Anthony L. (August 13, 2019). "Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome". JAMA. 322 (6): 499–500. doi:10.1001/jama.2019.8312. ISSN 1538-3598. PMID 31276153.
  11. ↑ CDC (May 10, 2024). "Clinical Overview of ME/CFS". Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Retrieved June 6, 2024.
  12. ↑ "ICD-11 for Mortality and Morbidity Statistics". icd.who.int. Retrieved June 6, 2024.
  13. ↑ 13.0 13.1 Lim, Eun-Jin; Ahn, Yo-Chan; Jang, Eun-Su; Lee, Si-Woo; Lee, Su-Hwa; Son, Chang-Gue (February 24, 2020). "Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)". Journal of Translational Medicine. 18 (1): 100. doi:10.1186/s12967-020-02269-0. ISSN 1479-5876. PMC 7038594. PMID 32093722.
  14. ↑ 14.0 14.1 Bretherick, Andrew D.; McGrath, Simon J.; Devereux-Cooke, Andy; Leary, Sian; Northwood, Emma; Redshaw, Anna; Stacey, Pippa; Tripp, Claire; Wilson, Jim; Chowdhury, Sonya; Lewis, Isabel (2023). "Typing myalgic encephalomyelitis by infection at onset: A DecodeME study". NIHR open research. 3: 20. doi:10.3310/nihropenres.13421.4. ISSN 2633-4402. PMC 10593357. PMID 37881452.
  15. ↑ CDC (May 31, 2024). "Fast Facts: ME/CFS". Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Retrieved June 6, 2024.
  16. ↑ CDC (June 4, 2024). "What Causes ME/CFS Causes". Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Retrieved June 6, 2024.
  17. ↑ Katz, Ben Z.; Shiraishi, Yukiko; Mears, Cynthia J.; Binns, Helen J.; Taylor, Renee (2009-07). "Chronic fatigue syndrome after infectious mononucleosis in adolescents". Pediatrics. 124 (1): 189–193. doi:10.1542/peds.2008-1879. ISSN 1098-4275. PMC 2756827. PMID 19564299. Check date values in: |date= (help)
  18. ↑ White, P. D.; Thomas, J. M.; Amess, J.; Crawford, D. H.; Grover, S. A.; Kangro, H. O.; Clare, A. W. (1998-12). "Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever". The British Journal of Psychiatry: The Journal of Mental Science. 173: 475–481. doi:10.1192/bjp.173.6.475. ISSN 0007-1250. PMID 9926075. Check date values in: |date= (help)
  19. ↑ Hickie, Ian; Davenport, Tracey; Wakefield, Denis; Vollmer-Conna, Ute; Cameron, Barbara; Vernon, Suzanne D.; Reeves, William C.; Lloyd, Andrew; Dubbo Infection Outcomes Study Group (September 16, 2006). "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study". BMJ (Clinical research ed.). 333 (7568): 575. doi:10.1136/bmj.38933.585764.AE. ISSN 1756-1833. PMC 1569956. PMID 16950834.
  20. ↑ Choutka, Jan; Jansari, Viraj; Hornig, Mady; Iwasaki, Akiko (2022-05). "Unexplained post-acute infection syndromes". Nature Medicine. 28 (5): 911–923. doi:10.1038/s41591-022-01810-6. ISSN 1546-170X. Check date values in: |date= (help)
  21. ↑ Burkard, Theresa; López-Güell, Kim; Català, Martí; Burn, Edward; Delmestri, Antonella; Khalid, Sara; Joedicke, Annika M.; Dedman, Daniel; Oyinlola, Jessie O.; Abellan, Alicia; Pérez-Crespo, Laura (May 15, 2024). "The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea": 2024.05.15.24307344. doi:10.1101/2024.05.15.24307344v1.supplementary-material. Cite journal requires |journal= (help)
  22. ↑ Kedor, Claudia; Freitag, Helma; Meyer-Arndt, Lil; Wittke, Kirsten; Hanitsch, Leif G.; Zoller, Thomas; Steinbeis, Fridolin; Haffke, Milan; Rudolf, Gordon; Heidecker, Bettina; Bobbert, Thomas (August 30, 2022). "A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity". Nature Communications. 13 (1): 5104. doi:10.1038/s41467-022-32507-6. ISSN 2041-1723. PMC 9426365. PMID 36042189.
  23. ↑ Dibble, Joshua J.; McGrath, Simon J.; Ponting, Chris P. (September 30, 2020). "Genetic risk factors of ME/CFS: a critical review". Human Molecular Genetics. 29 (R1): R117–R124. doi:10.1093/hmg/ddaa169. ISSN 1460-2083. PMC 7530519. PMID 32744306.
  24. ↑ 24.0 24.1 "Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". www.nice.org.uk. October 29, 2021. Retrieved June 8, 2024.
  25. ↑ König, Rahel Susanne; Paris, Daniel Henry; Sollberger, Marc; Tschopp, Rea (March 15, 2024). "Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study". Heliyon. 10 (5): e27031. doi:10.1016/j.heliyon.2024.e27031. ISSN 2405-8440. PMC 10907781. PMID 38434357.
  26. ↑ Estévez-López, Fernando; Mudie, Kathleen; Wang-Steverding, Xia; Bakken, Inger Johanne; Ivanovs, Andrejs; Castro-Marrero, Jesús; Nacul, Luis; Alegre, Jose; Zalewski, Paweł; Słomko, Joanna; Strand, Elin Bolle (May 21, 2020). "Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology". Journal of Clinical Medicine. 9 (5): 1557. doi:10.3390/jcm9051557. ISSN 2077-0383. PMC 7290765. PMID 32455633.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

an organism's complete set of DNA, including all of its genes[1]

genome an organism's complete set of DNA, including all of its genes

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

pacing The practice of staying within one's "energy envelope" or personal limit by combining periods of activity with periods of rest or avoiding exerting beyond a certain level. ME/CFS patients use pacing to avoid or reduce post-exertional malaise (PEM). Some patients use a heart rate monitor to help with pacing.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

See National Institutes of Health.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.

NICE guidelines Clinical guidelines used in the UK.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See ME/CFS.

The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

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