I wonder if it is worth shortening it.
I agree, it should best be rather short and refer to other more respectable sources that provide more info. I've quickly written something down based on the info that was already on the page and other ME/CFS factsheets and guidelines.
ME/CFS
Myalgic encephalomyelitis (ME), sometimes referred to as chronic fatigue syndrome (CFS) is a serious and long-term illness. 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 (dizziness or nausea when upright). The hallmark symptom of ME/CFS is a marked worsening of the illness after exertion, often referred to as post-exertional malaise (PEM).
Not chronic fatigue
ME/CFS is not the same as chronic fatigue and it is important not to confuse both conditions. ME/CFS patients are severely ill not, fatigued. Most people with chronic fatigue do not meet ME/CFS diagnostic criteria and for many ME/CFS patients, fatigue is not their most debilitating symptom. It is therefore inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.
Representative images
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. Functional impairment of ME/CFS can be greater than in disabling conditions such as multiple sclerosis, end-stage renal disease or congestive heart failure.
Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities. 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.
https://www.mecfs.de/stockphotos/
Disease burden and low funding
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.
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 affects approximately 2 European citizens and the annual burden of ME/CFS is estimated to be 40 billion euros annually.
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.
Cause and pathology
The cause and pathology of ME/CFS remain largely unknown. The illness is much more common in women than in men: approximately 75% of patients are female.
Infections are also considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS. Increased incidence has also been reported following Q-fever, Ross River Virus, giardiasis, and several other infections. Sars-Cov-2 leads to a higher risk of ME/CFS and a substantial proportion of patients with Long Covid meet ME/CFS diagnostic criteria.
ME/CFS is suspected to have a genetic component. The DecodeME project in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.
Researchers have reported abnormalities in the immune system, metabolism, cardiovascular system, brain signalling, endothelial function, and other bodily functions of ME/CFS patients. 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.
Not a mental disorder
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’. This view is in contrast with scientific evidence and expert opinion. The Centers for Disease Control and Prevention (CDC), for example, states:
"ME/CFS is a biological illness, not a psychologic disorder.”
The World Health Organization classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classiciation of Diseases.
Treatment
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 Coaltion 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 Institutes of Health and Care Excellence (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.
Cognitive behavioral therapy (CBT) may be offered to people with a new ME/CFS diagnosis 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.
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 postexertional malaise.
Psychosomatic theories and stigma
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 considered a barrier to appropriate patient care.
12 May: World ME Day
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.
Reports and guidelines
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - PubMed (nih.gov)
Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE
ME/CFS: The current state of knowledge | IQWiG.de
ME/CFS Basics | ME/CFS | CDC
Patient organizations
Home - World ME Alliance
Home - #MEAction Network
The ME Association - The ME Association
Start — Deutsche Gesellschaft für ME/CFS (mecfs.de)
European ME Alliance - Home Page - A Voice for People with ME in Europe
ME/CFS experts
Luis Nacul
Carmen Scheibenbogen
Lucinda Bateman
Nancy Klimas
Anthony Komaroff
Chris Ponting
Karl Tronstad
Examples of excellent reporting
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot | The Guardian
Fatigue Is So Much More Than Being Tired - The Atlantic
When the doctor doesn’t listen - Coda Story
